Friday, October 15, 2010

For All of you that need AZ heart contact info here it is

Application
To enroll in our program, please call 602-240-5866 or e-mail us at
VIP@lifeguardclinic.com

And yes people have answered my request for feedback from their treatment at AZ heart. They have just chose to do so via email. I can tell you it is all positive thus far. thanks T

From Lifegaurd and AZ HEART

History and Origin of CCSVI
Chronic cerebrospinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. Outflow obstructions of the internal jugular veins, vertebral veins, and/or azygous vein and their tributaries result in stasis or reflux of these outflow veins and redirection of flow. Many patients with CCSVI appear to have multiple sclerosis (MS), and many patients with MS have CCSVI. This condition could also be related to other neurological diseases.
Vascular surgeon Paolo Zamboni of Italy proposes that CCSVI has a role in the pathogenesis of MS. He suggests that resistance to cerebrospinal venous outflow causes vicarious redistribution through small collateral veins that cannot handle high flow. Zamboni and his colleagues theorized that the malformed blood vessels caused increased deposition of iron in the brain, which in turn triggers autoimmunity and degeneration of the nerve’s myelin sheath.
Dr. Zamboni and his associates have performed interventional procedures to correct CCSVI and find that 73% of patients improved. Some patients however, may only have transient relief, or no relief of their symptoms.
The Venous Impairment Program (VIP) at LifeGuard
LifeGuard and the Arizona Heart Institute (AHI) currently offer diagnostic testing and intervention for CCSVI. The testing/intervention include:
Bilateral internal jugular and vertebral venous duplex ultrasound taken in supine and upright position
Multi-slice venous CT of the head, neck, and chest to assess venous flow in the internal jugular, vertebrals and azygous veins.
Venogram and venoplasty with possible stent (currently, only when absolutely indicated)
CBC, CMP, lipids, PT/PTT, TSH, and EKG prior to the intervention.
The venogram is performed under local anesthesia. A small sheath (tube) is inserted into a vein in the groin. A catheter is inserted through the sheath and navigated into the neck and chest veins. Dye is injected in the veins to identify narrowing, blockage or other abnormalities. When observed, a balloon catheter is inserted and inflated to open the blood vessel and improve the flow. Currently stents are not routinely used.
Costs/Insurance
If you have insurance that is accepted by AHI, they will file your insurance. Any noncovered services are your financial responsibility based on the cash pricing below. $2,500 for the diagnostic testing package includes:
Neurology record review
Duplex ultrasound
Venous CT
Test results reviewed with physician
Copies of test results
Preparation and explanation of venography and venoplasty if indicated
Consultation with Dr. Diethrich or his designee
••
••
•••••••
Venous Impairment Program
VIP  2632 N. 20th Street  Phoenix, AZ 85006  Ph: 602.240.5866  Fax: 602.604.5039
A $300 non-refundable fee must be submitted with patient’s medical records. The $2200 balance will be collected prior to the diagnostic testing if accepted into the program. Venogram, venoplasty, laboratory analysis and EKG are $6,000 if performed. There will be an additional charge of $2,000 per stent if medically necessary. Acceptable funds are cash or credit card.
*Testing done at other locations will only be accepted if it meets the VIP protocol. We suggest that you have the testing here to avert unnecessary expenses.
What is Special about Our Program?
We have a highly skilled staff and testing and interventions are performed in one location over a one to two day period. In addition, Phoenix enjoys over 300 days of sunshine per year, and offers fine dining, 5 star accommodations, sports and many other activities should you wish to combine pleasure with your medical care.
Out of Town Patients
Once accepted, you should plan on spending a minimum of two complete days to complete your testing and intervention. We will provide you with a list of nearby hotels.
Application
To enroll in our program, please call 602-240-5866 or e-mail us at VIP@lifeguardclinic.com.
Venous Impairment Program
VIP  2632 N. 20th Street  Phoenix, AZ 85006  Ph: 602.240.5866  Fax: 602.604.5039
John A. Sutherland, MD - Cardiologist
Director, Cardiovascular Imaging, Arizona Heart Institute
Dr. John A. Sutherland is board-certified in internal medicine and cardiology and has championed the applications of vascular ultrasound, 64-slice CT Angiography and MR imaging for advanced cardiovascular diagnostics. He has designed some of the innovative image technology used in our program. Dr. Sutherland joined the Arizona Heart Institute in 1998 after practicing cardiology for 20 years in Augusta, Maine. He earned his undergraduate degree from Harvard College in Massachusetts, received his medical degree from the University of Michigan Medical School, and completed his internal medicine residency and cardiology fellowship at Miriam Hospital in Providence, Rhode Island. Dr. Sutherland is a member of the American College of Cardiology.
Edward B. Diethrich, MD - Cardiovascular Surgeon
Medical Director and Founder of the Arizona Heart Institute
Dr. Edward B. Diethrich is regarded as one of the world’s pioneers in heart disease diagnosis and innovative cardiovascular treatments. Under the tutelage of famed heart surgeons Dr. Michael DeBakey and Dr. Denton Cooley, Dr. Diethrich completed his thoracic and cardiovascular training at Baylor College of Medicine where he remained as assistant professor in surgery until 1971 when he founded the Arizona Heart Institute, the nation’s first freestanding outpatient clinic devoted solely to the prevention, diagnosis and treatment of heart and blood vessel disease.
Dr. Diethrich actively performs state-of-the art cardiovascular and endovascular procedures using the latest techniques, many of which he developed and brought to market. He is board certified in general, thoracic and cardiovascular surgery and is a member of all the specialty societies representing the cardiovascular field including the American College of Surgeons, American College of Cardiology, Fellow Royal College of Surgeons, and Chairman of the Board of the International Society of Endovascular Specialists.
VIP Faculty Leadership

Saturday, September 25, 2010

To Anyone that has been treated in Arizona

Hello Everyone, I know its been awhile, but I would love to hear feedback from everyone who has been treated fro CCSVI or VIP. I want to hear about progress!! As you all know I went into remission a few months ago, and I am hoping you all have the same results, or are at least feeling major improvements. I know Dr. D is treating about 3 people a day, and has been doing so for a little over a month. So please comment on my blog or email me at tisamccay@gmail.com with post procedure updates. Thanks and God Bless, T

Friday, August 27, 2010

Great News From AZHI and Lifegaurd

Guess What???? I just spoke with Teresa and AZHI and Lifegaurd are Happy to announce that they are billing insurance!!!!!! However if your insurance does not cover it you will be responsible. If you are on my or Teresa's list or both you should have received an information packet via email that should be filled out and returned to AZHI/ Lifegaurd then you will be contacted for an appointment. They will treat you same day if your tests show blocked veins. We have come a long way people, but we are here. They have already treated 10 people this week! So get your packets in and any questions regarding packets or appointments should be referred to Lifegaurd. You will find there contact info in the post below this one on Tisas Ms Liberation Blog. Yeah!!!! I hope you are all as happy as I am!!!!

Friday, August 13, 2010

Here it is Cost for testing and treatment

From: Carroll, Sue
Sent: Friday, August 13, 2010 12:01 PM
To: 'Tisa McCay'
Cc: Capriotti, Teresa
Subject: MS Statement on your site

Tisa…we appreciate your feedback. We have made changes to our program and will begin sending letters out today. When you have time, if you can change your site to reflect the wording below we would appreciate your help.

VIP for MS Patients
LifeGuard at the Arizona Heart Institute has established the Venous Impairment Program (VIP) to diagnose venous abnormalities that may be associated with Multiple Sclerosis (MS). Diagnostic testing and intervention, if necessary, is offered to patients with a neurologist’s diagnosis of MS.
The cash price for the diagnostic testing is $2,700. If your studies indicate venous abnormalities, a venogram with venous angioplasty will be offered at the cash price of $7,000. At the present time, insurance is not accepted for this program. We are happy to give you a statement which includes procedure and CPT codes for services rendered. You may use this to submit a claim to your insurance provider on your behalf to determine if you are eligible for reimbursement of any of your expenses. Any payment by insurance should be sent directly to you, the patient. If you are interested in this program, please contact us at VIP@Lifeguardclinic.com.


Also the original list is still in effect. If you are on it you will receive an email in the next 3 working days. you can still email Teresa to check your spot on the list


Thanks,
Sue Carroll
LifeGuard Executive Director
2632 North 20th Street
Phoenix, AZ 85006
602-707-3535
Fax 602-707-3536

Thursday, August 12, 2010

Good News

Hey everyone, I had a meeting with Dr. d and Teresa today, and shared all of your comments of disappointment. They are now revising the cost and including treatment immediately following testing if needed. They really want to help. Tomorrow they are sending me a revised version of cost and a statement to confirm they will be treating as well. I will post it as soon as I get it. Still working hard for all of you. T

Wednesday, August 11, 2010

corrected email for Vip list at az heart

VIP@lifeguardclinic.com

From Teresa

LifeGuard Website and Tisa’s Blog/Facebook
VIP for MS Patients
LifeGuard at the Arizona Heart Institute has established the Venous Impairment Program (VIP) to diagnose venous abnormalities that may be associated with Multiple Sclerosis (MS). At the present time, only diagnostic testing is offered to patients with a neurologist’s diagnosis of MS. We anticipate adding an interventional program to treat venous insufficiency once sufficient studies are done to confirm the correlation between venous disease and MS. Diagnostic studies offered include:
Bilateral internal jugular and vertebral venous duplex ultrasound
Multislice venous CT of the head and neck
If preliminary testing suggests venous insufficiency, venograms are an option for further diagnosis

The cash price for the diagnostic testing is $3,000. The optional venogram would be an additional $4000. At the present time, we do not accept insurance. If you are interested in this program, please contact us at VIP@Lifeguard.com.


Sue Carroll
LifeGuard Executive Director
2632 North 20th Street
Phoenix, AZ 85006
602-707-3535
Fax 602-707-3536

Thursday, August 5, 2010

I missed Teresa's Call, but will talk to her tomorrow

However her message did say to tell all of you that they will be sending patient information packets out on Monday to everyone on the list and that they are still moving ahead at full speed.

Answers

So Everyone is asking what does this mean? (about the merger with AZ heart) It was done to better help the hospital move forward in innovative procedures. Is is going to slow things down? No way. Spoke with Teresa this morning. They have a 3 pm mountain standard time meeting today about whats happening. She promised to call me after and let me know what is happening. So stay tuned. I will write a new blog with Answers from Teresa after 3 when ever she calls me. And stay positive people please. I do everything in my power, and will keep doing so.

Wednesday, August 4, 2010

News About AZ Heart; Dr. Diethrich did this on purpose to move foward with new procedures. It says right here

Amid mounting debts, physician-owned Arizona Heart Institute files for bankruptcy as part of acquisition deal
August 4, 2010 | Shelley Wood
Phoenix, AZ - In what may be a sign of the times, one of the oldest physician-owned heart institutes in the US has filed for bankruptcy as part of an acquisition agreement with a for-profit healthcare management company. The Arizona Heart Institute and Abrazo Health Care, a subsidiary of Vanguard Health Systems, announced the deal late Monday; the affiliated Arizona Heart Hospital, almost half of which was once physician-owned, is also in discussions with Vanguard.

World-renowned cardiovascular surgeon Dr Edward Diethrich is the medical director of both the hospital and the institute, which he founded nearly 40 years ago. He explained to heartwire that the institute filed the bankruptcy petition only after the agreement with Vanguard was in place, allowing Vanguard to buy the institute's assets free and clear of liens and other claims under what's known as a 363 asset purchase agreement.

News of the Arizona Heart Institute's bankruptcy petition and Vanguard agreement comes as physician-owned specialty hospitals, as well as independent cardiology practice groups, struggle for survival in what is seemingly an increasingly hostile healthcare environment for both types of institutions.



In the red


In the institute's bankruptcy petition, the number of unsecured creditors is listed as between 200 and 999, while the institute's assets are listed as being between $10 million and $50 million and liabilities at $1 million to $10 million.

Among the list of creditors holding the 20 largest unsecured claims in the bankruptcy petition are GE Healthcare, with an unsecured claim of more than $780 000 for the lease of ultrasound and other equipment, plus a second claim of almost $200 000 for repair and maintenance services. VAS Communications, a medical marketing company, is listed with a claim of $470 400 for "services." Two separate lease claims, one for the Casa Grande office and another for the Surprise office, total over $250 000. The remaining unsecured claims listed in this top-20 list range from $36 000 to $150 000. There are 62 additional pages of creditors listed in the petition.

Mary Wheeler, a spokesperson for the institute, emphasized that a 363 sale is part of the reorganization plan, decided upon prior to filing the petition by both the buyer and the seller. "The buyer, Vanguard, purchases the Arizona Heart Institute, and the proceeds from the purchase are then redistributed toward our outstanding debt owed to our creditors, including vendors, as determined and directed by the courts," she explained to heartwire. "Our voluntary decision to pursue this reorganization, along with the execution of the Vanguard definitive agreement, was strategic and in everyone's best interest, including the institute's employees and physicians, vendors, and most important, our patients."



A solution? Not soon enough for some


Dr Fredric Klopf, who with Dr Murli Raman left West Valley satellites of the Arizona Heart Institute in June to join the competing physician-owned practice group Cardiac Solutions, told heartwire they showed up for work June 1 at the institute's Peoria office to find they'd been evicted for not keeping up on the rent. According to Klopf, the Arizona Heart Institute owed almost $100 000 in lease payments at that specific location dating back at least six months. Klopf and Raman actually were minority owners of the building at the time but were not part of the decision to evict the Arizona Heart Institute branch, Klopf said.

According to Klopf, the institute's arrears at the West Valley satellites included unpaid bills for medical transcription, cleaning, laundry services, and answering services, as well as salaries that weren't paid according to contracts. In fact, fearing the worst, Klopf said he and Raman, aware that the satellite offices were in dire financial trouble, had been in discussions with Vanguard for months about ways to salvage/reopen the clinics, including an offer from Vanguard of back pay to make up the shortfall in their wages over the previous two years, an amount ranging from $500 000 to $1 million each, depending on the calculation used. The proposed temporary solution was for Klopf and Raman to continue to see patients out of the downtown Phoenix offices after the satellites were shuttered, until the Vanguard acquisition was finalized and the debts paid off, something Klopf says was not a reasonable solution, even temporarily, for their largely elderly clientele, "who don't like to drive five miles, let alone 20," Klopf said.

Exactly what kind of debts will now be settled as a result of the bankruptcy filing and acquisition agreement, and to what extent, remains to be seen.

Wheeler could not discuss the institute's outstanding debts, saying only that "the courts [will] determine how the proceeds from the sale are redistributed among our outstanding debts to creditors." Without addressing any of the debts specifically, Wheeler added that at no time was patient care affected in any way.

Lisa Levi, a spokesperson for Vanguard, also declined to discuss the extent of the institute's debts, but noted that the 363 bankruptcy filing is "in essence, a prepackaged bankruptcy filing in which Abrazo was represented as the intended purchaser subject to the judge granting a sale order."



The winds of change


For the physicians remaining at the Arizona Heart Institute, almost all of whom also work at the hospital, the Vanguard acquisition may offer some stability for the beleaguered institute, which has closed a number of other satellite facilities over the past year. There are 15 physicians who work at the downtown offices, Diethrich said. None of the physicians who have an ownership interest in either the hospital or the institute have made dividends from either business, he added.

Over at the Arizona Heart Hospital, the majority owner is Medcath Corp; according to Wheeler, physician ownership of the hospital is now just 28%, down from a high of 49% in the past. Any decision on whether the hospital will also be sold to Vanguard remains MedCath's, Diethrich said, adding that he expects an announcement this week.

According to Diethrich, having a single owner of the institute, the hospital, and ideally the affiliated Arizona Heart Institute Translational Research Center as well, would "make sense" from a business perspective. Over the past few years, he said, MedCath has "felt challenged" by the increasing legislation limiting physician-owned hospitals: section 6001 of the recently passed Patient Protection and Affordable Health Care Act prohibits physician-owned hospitals that see Medicare patients from expanding (as of March 23, 2010) and bans any new physician-owned Medicare hospitals that are not certified as Medicare providers before the end of the year.

In the current healthcare environment, says Diethrich, MedCath has also "by necessity" become increasingly uninterested in supporting activities beyond clinical care.

"All of that has been very hard for us here at the Heart Institute, because as the philosophy of the hospital environment changes . . . it changes the orientation of your program," Diethrich explained. "We've been very involved in research, education, cutting-edge technologies, and being on the leading edge . . . but when your hospital partner becomes less interested, is a public company, and is not sharing the enthusiasm for the expenditures for research and education that we have, the institute has had to take over this [expense] more and more," he said.



"Very, very costly"


Over the past three years, the institute has "spent an exorbitant amount of money" building new labs and investing in imaging and other state-of-the-art technology, Diethrich told heartwire. "It was very, very costly to us: big expenditures without much help from our hospital partners. As time went on, it was pretty clear to us that we'd have to make some different kinds of relationships."

Vanguard's Abrazo group, which already owns five other hospitals in the Phoenix area, "is the best fit," Diethrich is quoted as saying in a press release, which also notes that the acquisition of the Arizona Heart Institute is the first independent cardiovascular specialty physician practice Abrazo has added to its local network.

Diethrich believes some of the pressures his institute has faced are also being felt by physician groups around the nation. "I do think that we're going to see a reduction in physician-owned hospital practices, and on the other hand, you're going to see an accelerated number of physician groups going with the hospital and working for the hospitals under contracts."

Physicians are "very nervous" about the changes going on in US healthcare, he continued. "[There's] a lot of angst about this, and I think physicians are unsure what the direction is going to be, and what kind of practice they are going to have if they are alone and solo; a lot of things are very scary. You see this happening already, all over the US, where entire groups have now joined a hospital and work for the hospital."



Other factors behind woes


Klopf, however, who witnessed firsthand many of the changes taking place both within and outside of the Arizona Heart Institute, says the blame does not rest solely with a changing healthcare environment. While he spoke glowingly of Diethrich and his vision, calling him "a great guy and a great, innovative surgeon who has really built a great institute," Klopf believes the era of "extravagant" investment in specialized institutes is probably over.

He points to a decline in the number of referrals to specialized institutes like Arizona Heart for the big money-making procedures, as regional practices and hospitals have expanded to include more open-heart and complex interventional services; an increase in the number of high-cost/low-reimbursement procedures by institute physicians; and its expensive international development arm, which sought to open a heart hospital in Singapore, known as Arizona Heart International.

"It's not a secret that [the Arizona Heart Institute] has accumulated a lot of debt over the years," Klopf told heartwire. "I think their problems have much less to do with the changing climate in terms of physician-owned hospitals and subspecialty hospitals and more to do with the debt they've accrued over the years, and the fact that they had to file bankruptcy in order to reorganize. There are really a lot of bigger issues that are independent of the broader healthcare environment."

Monday, August 2, 2010

A Tiny update

I spoke with Teresa last week. She said they were just finalizing cost and insurance. They were still Unsure if insurance will cover it. But other than that they are starting as soon as they can get the cost down. Sorry I don't have a better update than that. If I could go in there and make them move faster I would. You guys all know that I am on your side.

Email Teresa with Questions or if you want to be added to the list.

tcapriotti@azheart.com

Wednesday, July 28, 2010

Thursday, July 8, 2010

Update from Teresa on treatment in AZ

I just got off the phone with Teresa. I am here to update you so she doesn't have to make 313 phone calls. Although she is more than happy to speak with you via email. She told me to tell you all that if you want to contact her with ANY questions emailing her will get you a faster response. So here is the most up to date information regarding Venous impairment Procedure. OR V.I.P. That is what they have named it for certain reasons. ( keeping the doors open to treat all of you)

When will they start?
I know all of you must be feeling like this is taking forever. And I'm with you. It is. But they are just trying to go about it in the right way so that they will not get shut down, and insurance will cover treatment. New Date: Aug. 1st. I said Teresa is this the final date or are you guys going to push it back again? She said this is the final date.

What is taking so Long? And I want to curse when I say that but this is a positive blog so I wont. I just want you all to know I am as upset and inpatient as you are.
So back to the question. They are talking with different insurance companies, and are almost positive they can get insurance to cover your treatment. That is for US citizens only. That is a HUGE deal guys. You will not have to come up with thousands of dollars out of pocket. So :) for that.

Extra Notes from Teresa:
This is NOT a Randomized study. Everyone with compromised veins will be treated. No placebo.
You will have to have a CTV and venous duplex ultra sound of bilateral, internal jugular vein and vertebral veins. As well as the azygos vein which will be viewed during veinogram. In words we all understand, CTV Cat scan of veins. They have switched from MRV to CTV because it is more detailed. Duplex Ultra sound of all the veins listed above. New name for Doppler but the same thing.
ALL PATIENT MUST UNDERGO THESE TESTS AT AZHI, Even if they have had them done somewhere else.

About How many People can you treat a week?
5 And testing will begin first

Special Rates from Embassy Suites at AZ Biltmore:
All patients on waiting list will receive an email from AZ Biltmore Embassy Suites for discounted rate, discounted dinning at their hotel and FREE shuttle to and from the AZHI. :)

You will most likely be in AZ for 2-3 days. Depending on if your veins are blocked or not. If they are they are working on treating you in that 3 days.

Again Teresa said if anyone has anymore questions to email her. You will hear back much faster than calling her.

So here are my thoughts. I know this waiting time SUCKS!! I am with you all. I am on your side so here's what I have to say. If you are okay with waiting another 2-9 months depending on where you are on the list than GREAT. AZHI will be the best choice, they are taking so much time so that they do everything right and keep their doors open to treat all of you. But if your MS is REALLY BAD and you want this treatment yesterday, here is what I suggest you do. Number one go to an interventional Radiologist and ask to have an ultra sound of your neck. Tell them you have horrible headaches, or that you are dizzy all the time ( which isn't a lie for most of you) and you want to make sure your getting enough blood supply to your brain. Interventional Radiologists are probably the best specialist that will listen and know how to do angioplasty. But go to any Dr. that will listen. Just don't tell them you have MS. Use other reasons that will make them want to scan and treat. Second. Go out of the country, there are many places like Costa Rica, Mexico, and others where there are not long lists.

My prayers are with all of you and I hope you get your treatment ASAP.

Wednesday, July 7, 2010

How to get on Waiting list for treatment in Arizona

Hey Everyone, Great news, You may now contact Teresa (my Dr. who performs CCSVI in Phoenix, Arizona nurse) directly.

If you are interested in getting on the waiting list for treatment please email

TCapriotti@azheart.com

Just email your name phone and email to her and she will call you. Thanks Tisa

Thursday, July 1, 2010

Questions Answered from all the emails

Hello Again,
I just wanted to answer some of the questions I have been getting in one place so I don't have to keep typing the same emails.

When is treatment in AZ starting?
Answer: They originally said July 4th but have pushed back a few days until the 8th.

Why does the date change?
Answer: I just spoke with Teresa and Dr. D 2 days ago. I told them the costs of the procedure in places like Mexico, Costa Rica, and all other countries that are performing the treatment. Their price was going to be much higher than over seas so they are meeting on the 8th to get the cost down. How? They are trying to negotiate with catheter companies to get them donated.

Why has Teresa not called?
Teresa is SWAMPED with emails and phone calls and trying to get this procedure off the ground. So give her some time she is an honest wonderful good natured person, and will call you back as soon as she has some answers and time.

I spoke with someone else at AZ Heart and they gave me different info?
Teresa is the ONLY person beside Dr. D the vein Dr. , and all the Doppler techs, that's know anything about this. So only speak to and get your info from her.

Why is taking so long?
Stop worrying. I know you are all so anxious to get this done. But they have to do it right and not get shut down. It takes some time to work out the logistics, price, and time to treat over 300 people. Also side note: Dr. D is a WORLD renowned surgeon the head of hospital and a very busy man. BUT he is so excited about this, it has become his 1st priority. Especially after he received news from my MS Dr. that I no longer have MS.

Do you think we will all be free from MS like you?
I hope and pray that it works out that way for everyone. However people must understand that I had a very MILD case of MS. I only had it for about 6 months.

Do I think CCSVI helped?
ABSOLUTELY!!! Do I think there were other factors involved with myself going into full remission? ABSOLUTELY!! I told myself everyday that my lesions were healing. That they were going away. I would even tell them BYE! I prayed to God all the time and asked him to heal my body. I know he had A LOT to do with it. So it was a combination of a positive attitude, telling myself I did not have MS, telling my body to heal the lesions, CCSVI for sure, and God FOR SURE!! Please keep in mind: MIND over Matter the Secret whatever you call it, because if you tell your Brain something enough it believes it. And if you pray to God he answers your prayers and shows you a path to take. In this case it was CCSVI and I truly believe I was meant to help as many people as possible to get this treatment. So I will continue this fight and will NOT give up on you guys just because I am healed. I want to see all of you get healed as well. In conclusion: Believe in CCSVI but also believe in the power of your mind and the power of God.

Tuesday, June 29, 2010

I AM IN REMISSION!!!!!!!!!!!!!!!!!

Hey Everyone, I went to my Dr. today, I had another Doppler ultra sound and veins stayed open without stents. It has been 60 days since my Liberation! I also went to my MS Dr. today and he told me that the 3 lesions on my brain were gone!! It was only Feb. when I had 3 active lesions on my brain and one on my spine. The one on my spine is en active and appears to be healing. My MS Dr. told me if he saw this MRI for the first time with none of my history he would say I don't have MS. He told me I am in remission!!!! I never did take the MS drugs and he told I won't have to. He even told me I don't need to see him anymore.

CCSVI DOES WORK!!! AND SO DO PRAYERS!!!! Thank you God and CCSVI.
I am so happy tears are rolling down my face.

I can't wait for all of you to feel Liberated. And you have to believe that your lesions all heal. I told myself everyday and asked God everyday to make my lesions go away. And they did!!!!!!!!!!!!!!!!!!!!!

Saturday, June 26, 2010

Bionic Band

Hi Everyone, So I have been wearing my bionic band for 24 hrs now, and the results are amazing! I have increased energy, better balance, and less joint pain!! If you have MS and are experiencing any of the symptoms of fatigue, dizziness, loss of balance, or pain, I would try this band. They are not too expensive and seem to really work. here is the link again

http://tisaoneill.mybionicfamily.com/Web/us/en/home.dhtml

They Start at $55.00

Friday, June 25, 2010

Buy one here

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.

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Thursday, June 17, 2010

Treatment for CCSVI in Arizona

Hey Everyone, Great news, You may now contact Teresa (my Dr. who performs CCSVI in Phoenix, Arizona nurse) directly.

If you are interested in getting on the waiting list for treatment please email

TCapriotti@azheart.com

Just email your name phone and email to her and she will call you. Thanks Tisa

Monday, June 14, 2010

Note to Patients with Stents

I am not trying to say stents are horrible. Nor am I trying to say anything bad about Dr. Dake. I have a lot of respect for Dr. Dake. All I am saying is that now Dr. Dake has told my Dr. not to use stents until they can develop one for the veins. I am sorry if my information was wrong about plavix. That is what I was told. But still baby aspirin is a blood thinner and you do have to take it for the rest of your life. It is also impossible to remove the stent, it is there for the rest of your life as well.

There is also the azygos vein, where stints can be placed. I am just referring to the jugulars right now. I am also referring to what Zambonni said about Not using stints until there is one that is developed for the vein. Thanks

Update on 50 days post Liberation and NO STENTS PLEASE

Hello Everyone,

I just wanted to write and tell you all how I am feeling. In one Word GREAT!!
As I last told you at 30 days post liberation, my left vein closed slightly, but I cant tell. I truly feel as though my body is healing itself. I also truly believe that CCSVI is one of the main reasons. The other being God. He has answered my prayers!

I have a 60 day post check up a week from tomorrow. so the 29th. I will first see my Dr. who performed the Liberation, and then go immediately to my MS Dr. who will be performing another MRI to see if my lesions are healing and to make sure there is no evidence of new disease! So I will tell you how that goes.

I also wanted to touch on one thing; Stents. A lot of you are not aware of the risks of using stints in the veins. Stents were made for arteries, which are way bigger and thicker than veins. So if a Dr. wants to put a stent in your jugular JUST say No! There is a high risk that the stint can move, and it has happened to 2 patients at Standford. Dr. Dake who originally used stints to treat CCSVI is no longer recommending that they be used.

My Dr. ( who performed CCSVI) was one of the Dr.s who invented the original stint. He is working on developing a stint that will work in veins. But for now he will only use angioplasty to open blocked veins. Which is much safer as of now. Yes you have a 50% chance that you veins will close back up, and you will have to have another angioplasty. But it is better than risking the stint migrating into your heart as it did with one Standford patient. Also one last note on stents; you have to take Plavix and other blood thinners for the REST OF YOUR LIFE!!! To keep the blood from clotting around the stint. SO NO STENTS!!! NOT UNTIL THERE IS ONE FOR THE VEIN!! Thanks T

Thursday, June 10, 2010

Sorry my dear readers, I haven't written anything in a while. but I assure you a good read in the next few days. Wishing you all health and happiness. And stay tuned.

Monday, June 7, 2010

What I posted earlier with links to translate in English

http://translate.google.com/translate?js=y&prev=_t&hl=en&ie=UTF-8&layout=1&eotf=1&u=http%3A%2F%2Ffree-news.org%2Fjacamp03.htm&sl=es&tl=en

http://www.thisisms.com/ftopic-10649-0-days0-orderasc-.html

Friday, June 4, 2010

Mis Diagnosed with MS?? A MUST READ

Cerebrovasculas Symptoms are just like the one of MS. What does this long word mean? Blocked or narrowed Veins. Which Veins? the jugulars. Zambonni has found that only 60% of people with MS have blocked veins. My thoughts those 60% are mis diagnosed.


Symptoms of Cerebrovascular Conditions IntroSymptomsTypesCausesTestsPrognosisTreatmentMisdiagnosisDeathsVideosContents

1.Cerebrovascular Conditions: Introduction
2.List of Symptoms of Cerebrovascular Conditions
3.Tests to Confirm Diagnosis
4.Home Diagnostic Testing
5.Failure to Diagnose
6.Alternative Diagnoses
7.Misdiagnosis information
8.More about Symptoms
9.Medical articles
Related Cerebrovascular Conditions InfoVideos about Cerebrovascular ConditionsHelping Stroke RecoveryWatch VideoTreating StrokesWatch Video Related Pages1.Cerebrovascular Conditions: Introduction
2.List of Symptoms of Cerebrovascular Conditions
3.Tests to Confirm Diagnosis
4.Home Diagnostic Testing
5.Failure to Diagnose
6.Alternative Diagnoses
7.Misdiagnosis information
8.More about Symptoms
9.Medical articles
Symptoms of Cerebrovascular ConditionsThe list of signs and symptoms mentioned in various sources for Cerebrovascular Conditions includes the 21 symptoms listed below:

•Symptoms can vary depending on the underlying condition
•Vision changes
•Difficulty speaking
•Slurred speech
•Reading or writing difficulties
•Drooling
•Difficulty swallowing
•Numbness
•Tingling sensations
•Weakness in limbs or face
•Paralysis in limbs or face
•Memory problems
•Balance problems
•Coordination problems
•Changes in personality
•Mood changes - e.g. depression
•Sleepiness
•Fatigue
•Altered state of consciousness
•Inability to control eye movements
•Headache - can be severe
•more information...»
Research symptoms & diagnosis of Cerebrovascular Conditions:

•Overview -- Cerebrovascular Conditions
•Diagnostic Tests for Cerebrovascular Conditions
•Home Diagnostic Testing

Amazing Proof that MS drugs do not work.

MS drug trial 'a fiasco' – and NHS paid for it

By Jeremy Laurance, Health Editor


Friday, 4 June 2010
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Multiple sclerosis, a chronic disease, may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions (seen as red and yellow in the MRI scan)

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The most expensive publicly funded drug trial in history is condemned today as a "fiasco" which has wasted hundreds of millions of NHS cash and raised fresh concerns about the influence of the pharmaceutical industry.


The scheme involved four drugs for multiple sclerosis launched in the 1990s which were hailed as the first treatment to delay progression of the disabling neurological condition that affects 80,000 people in the UK.

It was set up in 2002 after the National Institute for Clinical Excellence (Nice) unexpectedly ruled that the drugs were not cost effective and should not be used on the NHS. To head off opposition from patient groups and the pharmaceutical industry, the Department of Health established the largest NHS "patient access scheme", to provide patients with the drugs, costing an average £8,000 a year, on the understanding that if they turned out to be less effective than expected, the drug companies would reduce the price.

Related articles
•Christopher McCabe: What lessons can we learn from this?
Search the news archive for more stories
The first report on the outcome was due after two years but was not published until last December, seven years later. It showed that the drugs failed to delay the onset of disability in patients – defined as walking with a stick or using a wheelchair – and may even have hastened it. On that basis, the drug companies would have had to pay the NHS to use them to make them cost effective.

Despite this finding, the price was not reduced and the scientific advisory group monitoring the scheme advised that "further follow up and analyses" were required. It said that disability may yet improve, the disease may have become more aggressive and the measure of disability used may have underestimated benefit. There were 5,583 patients in the scheme at a cost to the NHS of around £50m a year, amounting to £350m over seven years to 2009. The Multiple Sclerosis Society said twice as many patients were using the drugs outside the trial, implying a total NHS cost of £700m for a treatment that does not work.

In a series of articles in today's British Medical Journal, experts criticise the scheme. James Raftery, professor of health technology assessment at the University of Southampton and an adviser to Nice, said the scientific advisory group included representatives from the four drug companies, two MS groups, and the neurologists treating patients, all of whom had lobbied for the continued use of the drugs on the NHS.

"The independence of this group is questionable," he said. "Monitoring and evaluation of outcomes must be independent. Transparency is essential, involving annual reports, access to data, and rights to publish. Any of these might have helped avoid the current fiasco."

Professor Christopher McCabe, head of health economics at the University of Leeds, writing with colleagues in the BMJ, said: "None of the reasons for delaying the price review withstand critical assessment." Professor McCabe told The Independent: "We should be asking questions about paying for these drugs. In terms of disability avoidance, the evidence is not there."

Alastair Compston, professor of neurology at the University of Cambridge, defended the scheme. He said that despite a disappointing outcome, the scheme had "advanced the situation for people with multiple sclerosis" by improving understanding and care of the disease. Neil Scolding, professor of neurosciences at the University of Bristol, said the proportion of British patients treated with drugs (10-15 per cent) was tiny compared to France and Germany (40-50 per cent). He said the scheme had also led to the appointment of 250 multiple sclerosis nurses.

"[Though] expensive and flawed, if it turns out to have been no better than a clever wooden horse, then the army of MS healthcare specialists it delivered may make it more than worthwhile," he wrote. The MS Society claimed success for the scheme up to 2007 but after publication of the results last December, withdrew its support.

MS: why the drugs don't work

Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results. Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease.

Jeremy Laurance

Wednesday, June 2, 2010

How to Get on waiting list for treatment of CCSVI

How can you get treated for CCSVI? In the US
Email tisamccay@gmail.com
What to include? Name, phone number, and email. That is it.
Then what? My Dr. 's nurse Teresa will contact you with in 3 weeks.
Do I know the cost? no Teresa will answer that.
Do they take insurance? Ask Teresa
I do not work for them. I am just trying to help you guys.
Does it hurt? Yes for about 10mins of the procedure and 1-2 weeks after you are sore.
How long does it take? If you have an appt with my Dr. for MRV and Doppler on Tuesday and veins are compromised, you will be treated via angioplasty no stints the next day or Wed. The actual procedure is about 2 hours. Then you lay in recovery for about 4 hours.
Theses are common questions I keep getting asked so here are the answers. Thanks T
When will they begin treatment? After the 4th of July. Keep in mind there are already 100+ people on the list so it may take up to 8 months until you actually get treated.
Have you had treatment meaning me myself Tisa? Yes that is why I started this blog. I was the first one they treated.

Tuesday, June 1, 2010

Hey Everyone, I have a couple of questions for you.
First: How often do you get sick? Since I have had MS I never get sick. I haven't had a cold or flu or anything for years. Then immediately after CCSVI, I got strep throat. And two weeks after that the stomach flu. I think that that is a good sign. Only because the way MS is explained to me our immune systems over work, so unless we take the MS drugs our bodies over fight common sickness. So if you can please comment your answers about getting sick that would be great so I can see if I am right or wrong.

Second: How many of you have dizziness as part of your MS symptoms? I hear so much about people having trouble with walking, blurred vision, blindness, numb feet or hands, and closing of the throat. I have had numb feet (during a flare up) dizziness to the point where the entire room spins, blurred vision, closing throat, and aches and pains. When you are in remission do you have little attacks of your relapsing symptoms?

My Dr. told me that every now and then I would feel tiny attacks but it did not mean I was having a relapse. SO, do all of you have tiny attacks that last for 5 mins or so? And then go away? I want to know more about my disease from the people who know best. Not Dr.s but the ones who suffer from this.

So please answer in the comment section, or if you want to email me tisamccay@gmail.com Thanks T

Sunday, May 30, 2010

Why doesn't the US have the media on this??

Zambonni's Doppler Demo

Hey, I thought that I would take some time to explain velocity of the veins. So this is how it was explained to me. The average velocity if the jugular veins is 40 -50. The velocity is how much blood is being drained from the vein. If the vein is compromised than it has to push the blood through harder, this is why the number goes up. For example pre -CCSVI my velocity was 300, so my vein was so pinched that the blood was pushing so much harder to drain from the brain.

When you go in for the Doppler you can hear the blood flow in the veins. If it is really loud it is pushing really hard to get through. If it is quiet than it is flowing more normally. When I went in I heard this loud sound almost like liquid in one spot on my neck. Then when they moved the ultra sound down my neck it was quiet. So not only can you see where the vein is compromised you can hear the blood trying to get through the compromised area. And that is velocity as I know it.

I have also been hearing that some of you are a little nervous about this procedure. So I want to tell you that I am a HUGE baby when it comes to pain and or anything medical that is happening to me. I know that most of you have had spinal taps or Lumbar punctures. That my friends is 100 times worse. I think that if I explain step by step what happened the day of my CCSVI it will help to calm your nerves.

First of all I did not have time to be scared. They told me to go to an MRV at 8am and take a valium. SO I did and I took it with food. I had had 2 Dopplers before this. I came back from my MRV happy and calm and they said your going into the O.R. in 30 mins. Once the MRV confirmed what the 2 Dopplers told them they did not want to waste anytime. ( which is exactly the kind of treatment you will receive; if they do a Doppler and MRV on Monday you are going in for CCSVI Tuesday) I checked into the hospital across the street from the clinic. I wanted to have anesthesia but because I had ate they could not give it to me. So we went with an I.V. of valium. I was awake the entire time and it took about 2 and half hours. My right side went by really fast as its velocity was 260. The left side took twice as Long because of how blocked it was. They had to get a different size balloon to get it open. I wont lie and say you don't feel anything. When they blow the balloon open you get a terrible headache on the entire side of your face. Your teeth hurt your ear, eyes, nose and head. But that only lasts for 5 mins. Then it goes away. That was the only thing I felt the whole time. I had to lie flat without moving my legs fro 4 hours in recovery to wait for blood to clot. Where they enter through the groin area. Once the blood clots, you have to take plavix so blood does not clot in the vein. They send you home with painkillers because your neck and leg are sore for about a week. I hope that helps. Any questions??

Saturday, May 29, 2010

30 days post jugular Angioplasty

Hello All,
Yes I had my 30 day follow up. The news was not bad. Originally the velocity on my left jugular vein was 300 when it should be between 40-50. And on the right side it was 260. Dr. D opened my veins to a 40 velocity on both sides. 30 days later the right side is still at a 40!!! Yeah that's great news! However the left side went up to an 84. They are not going to re-angioplasty it because an 84 is still way better than a 300, however I have to go back in 30 more days to see if it closes more. If so I might have to have another angioplasty if not I'm good.

I'm feeling great! My headaches have gone away. I have not had one headache in 30 days knock on wood. I used to get them about once every week. So that is a major improvement. I finally feel like I have energy again. Today was one of the first days I felt like myself again.

So I am staying positive. If the Doctors aren't worried than I'm not either. I spoke with my MS Dr. about the news and he said, " we are learning that it is not just the velocity Tisa, but that the blood is flowing away from the brain or down." My blood is flowing in the right direction so that is good. He will also check me in 30 days to see if my lesions are going away and make sure that there is no disease progression. SO I guess we will just stay positive and wait another 30 days. Thanks for all your concern and support, T

Wednesday, May 26, 2010

How to be put on the list for CCSVI in USA

Step One: Email me tisamccay@gmail.com
Step two: Just your NAME and PHONE NUMBER
Step three: Wait for Teresa to contact you. 3 weeks
Step four: Read my blog as you will find all of your answers in here
Step five: I DO NOT KNOW THE COST AND DO NOT WORK FOR THEM
Step six: I am just doing this to help all of you.
Step seven: I asked them how I can help and they said make a list of people who need treatment. So that is what I am doing.
Step eight: If you do not find an answer in this blog please email me your questions and I will answer.
Thanks

I had to put it in these terms because so many people email me on Facebook. And so many others do not include their phone number. And then others ask for DR.'s number which I can not give out.

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Tuesday, May 25, 2010

Thursday I go for my 30 day follow up

Hey Everyone, Just wanted to write to tell you I will be going in on Thursday for my follow up to make sure my veins are still open. I will keep you all posted. Every time I see my Dr. He talks to me about CCSVI in medical terms; I've never even heard of. He talks to me like a fellow Dr. because I showed him a treatment he did know anything about. But he has learned so much. He is constantly studying up on CCSVI now and speaking with Dr. Dake. He is so excited! I honestly think that he is just as excited as all of you. He has studied it so much he has even added another step to Zambonni's protocol. He will have the Doppler or ultra sound in the O. R. so that while he is in the vein with the catheter he can check velocity with the Doppler. He is so into this guys! Its awesome to see a Dr. who really wants to help people with new and innovative treatments. I have said before and I will repeat because I am so excited they are starting treatment at the beginning of July!!!

So lets all stay positive and be happy. He truly is an amazing Dr. I cant wait for all of you to meet him

NEW COMERS TO MY BLOG

I know some of you do not have the time to read everything I write. SO I will keep posting the info on how to have CCSVI in the US. Just email me your name and number and I will send it to my Dr. And his nurse will contact you. They will begin treatment in July. There is already 100+ on the waiting list so get your name and number to tisamccay@gmail.com . Also if you have more questions please read my entire blog as you will find out the answers. Lastly I do not know how much the treatment costs. That is something you can discuss with Teresa the nurse when she contacts you. Thanks and I cant wait to hear from all of you when you are liberated!!!

How long have Dr.s known about Iron in the brain? Thanks Joan for this info


Now, let's talk about the iron issue. This has been Dr. Zamboni's "smoking gun." He wrote a paper on iron called "The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis"- in which he explicitly outlines the parallels between chronic venous insufficiency in the legs and iron deposition and what we see in MS brains. If you haven't read it yet, it's a must read-

http://jrsm.rsmjournals.com/cgi/content/full/99/11/589?maxtoshow&HITS=10&hits=10&RESULTFORMAT&fulltext=zamboni&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

So, how long have doctors known about this connection of iron and the MS brain? Here is a paper from 1988- yes, that is over 20 years ago- discussing the cerebral vein walls and iron deposition in multiple sclerosis-

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1031540/pdf/jnnpsyc00537-0096.pdf

"C W M ADAMS
From the Division of Histopathology, United Medical and Dental Schools of Guy's and St Thomas's Hospitals, University of London, UK

SUMMARY Evidence of damage to cerebral vein walls was sought in 70 cases of multiple sclerosis. Seventy control cases were also examined. The multiple sclerosis cases showed venous intramural fibrinoid deposition (7 %), recent haemorrhages (17%), old haemorrhages revealed by haemosiderin deposition (30%), thrombosis (6%) and thickened veins (19%). In all, 41% of all multiple sclerosis cases showed some evidence of vein damage. Occasional control cases showed haemosiderin deposition in the brain but, unlike the multiple sclerosis cases, these were diffuse and almost entirely related to coexistent cardiovascular or cerebrovascular disease. Haemosiderin deposition was common in the substantia nigra and other pigmented nuclei in all cases. It is concluded that the cerebral vein wall in multiple sclerosis is subject to chronic inflammatory damage, which promotes haemorrhage and increased permeability, and constitutes a form of vasculitis."

-so, here we have a study in 1988 showing vein damage in almost half of the MS patients- and the researchers note hemorrhage, hemosiderin (iron storage) deposition, thickened vein walls and call it a form of "vasculitis."

"The results reported here reinforce the view that damage to the vein wall is an important aspect of the pathology of the multiple sclerosis plaque. The vasculitis caused is different from and of a more modest nature than that, for example, in systemic lupus or polyarteritis nodosa but is, nevertheless, enough to cause haemorrhage, and structural and permeability
changes in the vessel wall. The term proposed by Lendrum for a wide range of vasculitic disorders is plasmatic vasculosis, and the damage to the vein wall in multiple sclerosis could be regarded as causing a minor degree of such plasmatic vasculosis. Inflammatory and reparative changes in the vein wall might be exacerbated by pulsations or surges in intracranial venous pressure and may result in increased permeability of the multiple sclerosis plaque, as shown at necropsy, by immunohistochemistry and by brain scan."

OK. So, the researchers note that this is different than vasculitis- it's really about damage to the VEIN wall. They even posit that this damage may be caused by PULSATIONS or SURGES of intracranial venous pressure (like from venous reflux, perhaps?)

-Let's just move ahead 20 years....thru the vast miasma of autoimmune research- - -

Here is Dr. Haacke's paper from earlier this year. This is research completed BEFORE he read Dr. Zamboni's research. Dr. Haacke has since became so convinced that Dr. Zamboni's research provided the missing link, he is now covering the globe, opening research centers to diagnose venous stenosis and reflux.

http://www.direct-ms.org/pdf/CCSVI/Haacke%20imaging%20Fe%20in%20MS%2009.pdf

There are many, many papers linking iron deposition and disability in MS brains. If you want to read more and post them, please go ahead.
My Doctor in Arizona will begin treatment after the 4th of July. So get your names and numbers in. There are already 100 people on the list. tisamccay@gmail.com

Monday, May 24, 2010

I am re posting my 5th blog so people can understand how I got CCSVI in the US

Hello Again,
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.

After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.

A Dr. who was liberated even had lesion in his jugular vein

A Dr. who was liberated
Send just your name and contact number to tisamccay@gmail.com and I will send it to my Doctor who will begin treating people in July. Then his nurse will contact you with more info. Thanks Tisa

Thursday, May 20, 2010

Thank you all

Hi Everyone, I just wanted to thank all of you for sharing information and knowledge that you all have that I do not know about yet. I honestly feel like all of us with MS combined know more than than most Doctors about our disease. People with MS may have lesions that affect their brain, but they are not stupid or uninformed. I find my self telling Doctors things that they have no clue about all the time. This is thanks to our little community of MSers sharing information with one another. I learn something new everyday, and I teach Doctors and others new things everyday. We all are here to fight!! Most doctors just want to write a prescription and send us on our way. They don't care about new approaches or treatments, they are just glorified drug dealers. And I am referring to most Doctors. There is always an exception to the rule right?

For instance; I saw 4 MS specialists and only 1 out of the 4 was willing to listen to me, and learn from me. When I said NO Drugs, I want to find a different way to treat this, he agreed and never once tried to push the ABCs on me. All 3 other Doctors, did not listen and made me feel like I was a horrible person for not wanting their drugs. None of the 3 would even listen to anything about LDN or CCSVI or even vitamins and hormones. One of the 3 actually told me to not speak until it was my turn. Its no wonder we are having such a difficult time getting CCSVI approved, no one will listen!! They are all stuck in their ways. I call it tunnel vision all they see is drugs drugs drugs.

However I was blessed to find my Cardiologist who did listen and study and treat me. Also lucky to have my MS Dr support me. I cant wait for all of you to receive the treatment you have been waiting for since the day you were told you would have to inject your self everyday with drugs for the rest of your lives.

So keep the positive attitudes! Keep the research flowing. Keep sharing your stories! Keep your Dr.s on their feet!! And keep the faith. And KEEP the emails coming. We are very close to opening up treatment. Just waiting on Doppler machine that can see the brain. God Bless, T

New water Thanks Bruce

New water help for MS

New water that can help MS

New Water video

New Water that can help MS

http://www.viddler.com/explore/drkaplan/videos/4/

http://www.viddler.com/explore/drkaplan/videos/6/

http://www.viddler.com/explore/drkaplan/videos/5/

http://www.viddler.com/explore/drkaplan/videos/8/

Wednesday, May 19, 2010

Im Back, and ready to keep helping.

Hello Again,
Just a Note to begin: You can now leave comments without following my blog!! YEAH so leave some!! I always want feedback and or questions.

More Exciting news: I spoke with my MS specialist today, and he said that because of me his neurology department here in Phoenix is also looking into setting up to treat CCSVI.. Now they were totally opposed when I first asked them, And now that they have seen and heard all about what my Cardiologist did for me and will soon be doing for all of you. They have opened their eyes. My MS Dr. has always been on board and even began teaming up with my cardiologist so that he could be a part of treating and researching CCSVI. So when his hospital full of neurologists heard that he was going else where to be a part of it. They now want to be a part of it too.

That being said they are not as far along as my Dr. who treated me and who I am referring all of you to. However it is still exciting news that there MAY be one more place in the US and in AZ that can treat CCSVI.

On another note as I am sure most of you have heard Montell Williams has recently started to investigate CCSVI. It would be great if he could get us some more press. As I know lots of you in Canada have done a great job with getting the media to talk about it. Not a lot of people are even familiar with CCSVI in the US. So we need to get the word out there!!! Thanks for reading, T

Sunday, May 16, 2010

And please leave comments, or ask any questions. I am really here to help.
Hi again,
I originally started this blog to let others know how the recovery of CCSVI is and how it is working for me and my case. But then I realized I could help others get treatment as well, and for the past few weeks I have only been blogging about how to contact my Dr. It is so important to me that others have the same opportunity that I did. Sometimes I really cant believe that people can go and choose to have life threatening plastic surgery but they can not convince a single Dr. to simply open blocked veins. Its CRAZY. So yes I found a Dr that did open my veins and will soon be opening as many of you as possible.

Lots of you ask how I have been feeling? As I said in my first blog I have only had MS for 5 months now, so I felt pretty much the same after treatment. I will say that my neck was pretty sore for a week or so. It went away but today it has been sore again. Also just as I finally felt 100% better from my angioplasty ( about 1-2 weeks) I got strep throat. So I am still recovering from that. I don't like to write to much about how I feel, because I know that there are so many of you out there that are so much worse than I ever was to begin with.

On another note: I talked to another woman who had CCSVI by Dr. Dake about 6 months ago, and she said all of her lesions on her brain where gone 2 months after treatment. She had MS like me very mild. She told me that if you are more of a mild case it takes longer to see the results. In 2 weeks I will go for my 2nd MRV to check and make sure the veins are open. They will also look at my brain and see if lesions are starting to go away!! I am excited about the possibility of that happening. But we all know how yuck MRI and MRVs are. So I will keep you posted, and please keep emailing me your info for my Dr. I love helping in any way possible.

Friday, May 14, 2010

For those seeking treatment

Hello, I have received all of your emails. 50 in the past 2 days. I automatically forward them directly to my Dr. I try to write each and everyone of you back to let you know that your information has been sent to the Dr. SO if you email me your name and phone number to tisamccay@gmail.com I WILL SEND IT TO MY DR. AS SOON AS I RECEIVE IT!! My Dr.'s nurse Teresa will call you in 2-3 weeks. The list is starting to get long, so if you want treatment get your name and number to me ASAP. Thanks and sorry if I seem a bit crazy. It is hard trying to be on vacation and getting so many emails. I LOVE to help you all, just please don't ask me if your information has been sent to the DR. after I already sent an email telling you that it was. I really do get great joy and pride in helping all of you, and I do not mind forwarding your emails to my Dr. even while I am on vacation. So keep um coming! I know Teresa was able to call a lot of you back today.Also if this is your first visit to my blog please read my first few entries about how I got treatment. Thanks Again T

Tuesday, May 11, 2010

Hey Everyone, I spoke with my Doctor's nurse today, and she wanted me to tell you that they are moving forward, and if you have added your name to my list, or called her directly, she will be calling you in the next week or so to fill you in on when they will start treating people!!! This is more exciting news!! So if you are not on the list and are interested in treatment, please email me tisamccay@gmail.com . Cant wait till you are emailing me to tell me you are feeling better, after treatment. I am going out of town again for a few days, so I wont be blogging. but I will keep forwarding your contact info to my Dr. Thanks for reading, T

Sunday, May 9, 2010

MS and Iron & MS and Pregnancy

Hi Everyone,
I am back for a few days before I leave again. So I was thinking about all the testing I had done and came to my own hypothesis. It may not be true and as you all know I am not a Dr. but I have an educated guess about something.

So when I was first trying to figure out what was wrong with me. I went to the G.P. she though that I was anemic. When the results came back she said I actually had high levels of iron In my blood. So Dr. Zambonni explains the whole iron depositing in brain as part of his theory on MS developing. So I think it wouldn't hurt to go and have your iron levels checked, as mine were high and both my jugular veins were clogged.

Next Pregnancy, every MS Dr. I have spoken with tells me my chances of having an attack while pregnant go down by 50% why? They don't know. However pregnant women have more blood flow than non pregnant women. So in theory if their veins are blocked and they become pregnant, the blood can flow through the entire body much easier. And the Dr.s think its hormones.

Everyday I find a new reason or two as to why CCSVI makes so much sense. So I thought I would share those two things that make sense in my head. Especially the iron. When I first watched the news story on Dr. Zambonni, and heard about the iron, I said to my husband, " that's crazy because I had such high levels of iron in my blood and do not eat very much meat at all". Food for thought

Friday, May 7, 2010

Hi Everyone

I'm off on vacation, not even bringing my laptop. I will check emails again on Sunday for new patients names and numbers. Thanks Tisa

Dr. Dake speaks out on CCSVI and Zambonni's methods

Dr. Dake part one on CCSVI

Dr. Dake part 2 on CCSVI