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Sharon's Patient Perspective
Sharon's Companion Perspective: Ken

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Sharon's Patient Persepctive

For the past 15 years I have associated calendar dates with my multiple sclerosis journey. For example, June 26, 1995 was the date I was diagnosed with MS. September 4, 1998 I gave myself the first weekly injection of Avonex. February 1, 2000 I walked with a cane for the first time. November 24, 2006 I used a transport wheelchair while traveling to Arizona. January 28, 2007 I was first photographed in a wheelchair during a fiftieth birthday celebration with childhood friends. As you can read, the calendar dates begin to show the progression of the disease.

Then the dates took a wondrous turn for the better. On December 20, 2009, my husband Ken told me about an article he had read on Huffington Post about something called CCSVI. He was very excited about the potential for improvement of my condition. However, on this particular date I was more concerned about how I was going to get out of bed to co-host a dinner party at 7:00 pm. Extreme fatigue and dizziness made it next to impossible to function. My house was tidy and decorated for Christmas. My husband had set the table, tossed a green salad, purchased the crusty sourdough bread, chosen the music, dimmed the lights, lit the candles, and chilled the wine. And our friends were supplying the crab for the dinner. My only responsibility was to be present.

On December 31, 2009 my best friend called to wish me a Happy New Year. I told her about what Ken and I had learned regarding CCSVI and the potential improvement with angioplasty. As a nurse for a radiology interventionist she embraced the news and calmed my fears. A few well-chosen words on her part made all the difference. I made a 180-degree turn and was ready to hear more about this newest innovation.

On February 3, 2010 I met with my neurologist for my quarterly evaluation. During the appointment, I mentioned CCSVI and the testing being done at Stanford University. My doctor wasn’t aware of Dr. Dake’s work or the studies and results of Dr. Zamboni. In fact, he wasn’t aware of CCSVI at all. Because of his reluctance to discuss a potential therapy that had not been thru American clinical trials, I ended further conversation.

Considering the evidence of CCSVI as a vascular disorder, I made an appointment to see a vascular surgeon in my area. Ken sent material to the vascular surgeon and his staff. On February 10, I met with this local vascular surgeon, who was eager to hear of the correlation between CCSVI and MS. With the material we had sent prior to our appointment, the vascular surgeon was intrigued enough to engage in conversation and agreed to test for stenosis in my jugular veins. I was scheduled for Doppler tests by his staff on February 25, and then went straight to an MRI at the hospital across the street.

Every employee at the MRI center and physician’s office was curious about CCSVI and seemed open to a new theory to explain the mystery of MS. I was impressed that everyone I spoke to was just as eager as I to see if indeed I had stenosis of my jugular veins. However, the results from the MRV and Doppler at my local hospital came back showing no stenosis.

In the meantime, my husband Ken found the exact protocol from Dr. Haacke and shared the information with my vascular surgeon. He helped us schedule an MRV at Stanford on

March 4. Again, technicians at Stanford who conducted my testing were genuinely interested in CCSVI. The two hour and twenty minute series of MRV scans went well. The only discomfort came several hours later back at the hotel. My head itched for about six hours.

The results of the Stanford MRV were sent to my local vascular surgeon, and on March 9 I learned of the results. I had two “flat interior jugular vein” stenoses on my right side. The doctor said he would not typically suggest angioplasty for this condition. However, he said he would do angioplasty on me if I so desired. Without hesitation I agreed to the liberation procedure. After urine and blood samples were tested, the staff scheduled the procedure for March 29.

The day of the procedure went smoothly. I arrived two hours prior to the procedure for check-in. The operating room staff was very interested in the procedure for CCSVI and asked me all I knew about it. Ken followed me into the operating room and asked to talk with the physician just prior to the surgery.  The physician was running late, so Ken spoke with him via telephone and was content with the response. Several minutes after I was prepped and shaved of a small amount of pubic hair, the vascular surgeon gave me a small amount of anesthetic before inserting the catheter in the groin. Then a dye was injected. I was awake to inhale and exhale as the dye was injected into my body.

The surgeon decided to do angioplasty on just one vein. I could feel a very light sensation in my neck and hear a crackling sound in my right ear. Forty minutes later I was wheeled back to my room. After two hours and a turkey sandwich I was released from the hospital.  I had absolutely no pain, and never had a bruise in the groin area.

To further explain my experience, the following is an excerpt from a letter sent to the vascular surgeon:

 Thank you. I am very grateful for your skill and willingness to perform angioplasty on me. The results have been dramatic. In the past week the following has occurred:

3/29    Lack of dizziness

3/30    Wiggle toes

3/30    Hand coordination improvement
            Handwriting improved, can use dental floss more efficiently, and
           can use knife and fork without help

3/30    More stamina

3/30    Deeper sleep because I can move my legs at night without waking
            myself to move with the help of my hands to reposition.

3/30    Sense of smell came back

3/30    Can stand more upright with walker

3/30    More trips with walker -  no help from Ken

4/1      Better toleration for heat

4/1     Gets on and off toilet with no help

Also, I have stopped taking Ibuprofen for inflammation and reduced the dosage of Provigil by 30% for stamina. Prior to the angioplasty I was ready for another three-day series of Solu-medrol infusion. I feel absolutely great and will not require the infusion.

The improvement may not sound significant to the average person. However, after being confined to a wheelchair for three years, my quality of life has improved immensely.

I can't stress enough how important it is for patients to advocate for themselves. Once Ken and I learned about CCSVI we didn't stop pushing for answers, testing, and treatment until we were satisfied.  If you are passionate about a medical diagnosis or treatment, like CCSVI, I urge you to do the same.

In closing, the discovery of CCSVI and the angioplasty used to treat it, improved my quality of life, and has made all the difference. My sincere hope is that anyone who wishes to be tested and liberated will have the same opportunity as I did.

dividerswoosh

Sharon's Companion Perspective: Ken

This letter is a short testimonial about my wife's successful treatment of her CCSVI condition.

Sharon had no problems with her angioplasty procedure, March 29th, for her CCSVI. She had the angioplasty in her right internal jugular vein. Her MRV report had stated that there was a flattening in position #1 and position #6 of this jugular. However during the venogram one position passed the dye in an adequate manner so the doctor went forward with a ballooning in only one position.

Coming out of the procedure she had a little more energy, a little more flexibility, and she slept better after the procedure.  We thought, “so far so good!” By the next day she had increased energy, more flexibility, and better dexterity.  She also realized that she did not have brain fog or dizziness, both of which she had lived with for a long time. She experienced more stamina and had better balance. She was very happy with results.

Throughout the week she continued her progress- less fatigue, no brain fog, no dizziness, more animated in speech, better color in face, and lack of blueness in feet. She exhibited somewhat better mobility, with better balance and strength.  She was able to use her walker by herself to cross a room.

By the second week she was able to brush her hair more easily, and brush her teeth more thoroughly. She had better use of eating utensils, and better mobility, and she was able to use her walker again to go to the next room.

Her quality of life is much better- less fatigue, more stamina and balance. It doesn’t feel like she is out of balance and falling all the time. She still is primarily confined to a wheelchair, but now enjoys going out in public more with a renewed energy for life in general. She goes to lunch with friends and out to events and parties much more often.

She is very happy about her results, and so am I!!



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