Steve's Turn: waiting for the call

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby mormiles » Wed Aug 05, 2009 7:31 am

It turns out that Steve's neurotologist has been well aware of chronic cerebrospinal venous insufficiency in MS for a long time. This is a short blurb on his background from his clinic's website: "After five years of residency training at The University of Texas Medical School at Houston, he completed his fellowship in Otology/Neurotology - Skull Based Surgery at Baylor University Medical Center in Dallas." But CCSVI treatment is new, and he's a virus/bacteria/fungus/parasite/heavy metals/methylation kind of doctor (not a mainstreamer/not an alternative doctor either). He walks his own self-cut path and does controversial things like prescribe Valtrex to little kids with Autism. He prescribes Valtrex, Amantadine, and the antibiotics on the Vanderbilt Protocol to Steve and has prescribed him oral chelation in the past (now just reduced oral glutathione). What would he say about the prospect of Steve going to Stanford? He told Steve that he should absolutely have the treatment if indicated by the imaging, and he's very curious to see the result.

The appointment was disturbing. The vestibular testing performed on Steve revealed an actual organic change to certain elements of his balance that go along with the actual functional decline in Steve's balance that we have observed for at least two months. The doctor said the changes most likely reflect infection with a recent flu that has gone chronic in Steve. Yep, I recall when he got sick this late Spring/early Summer, and it drug on for at least a week with a sore throat and lousy feeling---not a strong immune reaction, but untypical for him. Anyway, Dr. X prescribed Tamiflu and advised to wait for a month following the end of the drug course before going to Stanford. He also advised to give him a 5-day pulse of Tinidazole now and then again one week following the Stanford surgery---that's pretty much on course with his existing pulse schedule on the Vanderbilt Protocol. Well, that's all fine---that falls in line with the time-frame I believe Dr. Dake is working with right now, considering the backlog of patients waiting for CCSVI treatment. I hate the waiting, but it's dictated by the realities, plus it is a relief to have a particular culprit to blame for Steve's recent and marked decline. Enemies, enemies, enemies!!!!!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mormiles » Fri Aug 14, 2009 9:25 am

It's a date!!! Imaging on September 24 and stents on September 25.

Thank God for Steve's good neurotologist too. At the August 4 appointment, Steve's vestibular testing revealed what we already knew---that his balance had gone wonkier. The doc suspected that Steve had gotten a flu that had gone chronic, and he prescribed Tamiflu. After 3 days on Tamiflu, it was like a switch was flipped. Steve awoke with energy, a clear head, and an optimistic outlook, and he's stayed that way for several days now. The restless legs that had crept back into the picture also disappeared overnight after three days on Tamiflu. The balance still stinks, but we can hope. I pray that the remediation of CCSVI problems will allow for BBB healing and immune system normalization so Steve can stop getting these blasted infections in his brain.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Sharon » Fri Aug 14, 2009 10:31 am

Great news Joyce and Steve ! September 24th will be here before you know it.
I pray that the remediation of CCSVI problems will allow for BBB healing and immune system normalization so Steve can stop getting these blasted infections in his brain.


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Postby Loobie » Fri Aug 14, 2009 1:03 pm

Good luck Steve. My thoughts and prayers are going to be with you!
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Postby mormiles » Fri Aug 14, 2009 2:46 pm

Thanks guys, We'll take all the prayers and well-wishing we can get.
And thanks for blazing the trail, the two of you and the others. Lew, it's too bad we'll miss you by only several days, but our prayers will be with you on the 15th for your follow-up.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby catfreak » Fri Aug 14, 2009 10:17 pm

great news!!!

Wow!! I'm speechless and excited for you!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mormiles » Wed Aug 19, 2009 8:24 am

I told Steve about Holly last night when I came home from work and asked him to think again as to whether or not he still wanted to go through with the surgery. Just before going to sleep, he told me to go ahead and make the travel and lodging arrangements.

What happened to Holly is a tragedy for her and her family. The users on this forum have lost a generous, caring, and brave friend. Beyond that, it's sobering for all who consider spending any time on Coumadin.

This has made me remember something that happened to my former husband, someone who loved to indulge in many exhilarating risk-taking activities like cross-country motorcycle racing, sky diving, scuba diving, radical snow skiing, radical water skiing, etc. Finally, he had a bad accident while cross-country motorcycle racing that resulted in a walnut-sized hematoma in his brain---it took a few years for him to recover.

His neurologist advised him that he would always have a weak spot in the artery that had ruptured and that he should scale back on the intensity of his play activities. The neurologist also told him that there is a small percentage of people walking around with weak points in their cranial arteries who are also at risk of a bleed...the only difference between them and him was that he knew about his weak spot.

So, my current thought is that there are a small minority of people who are at risk---period. We don't know if we are one of them, and even if we did, we wouldn't know where those weak spots were or how weak they were. If you're an MSer looking for meaningful treatment, what do you do with that knowledge coupled with the potential benefits of a procedure that would require you to use Coumadin for a couple of months? My guess is that those with more limiting symptoms will make the same choice Steve made last night.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Wed Aug 19, 2009 9:30 am

So, my current thought is that there are a small minority of people who are at risk---period.


Clearly put and totally accurate.

thanks Joyce!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Wed Aug 19, 2009 5:47 pm

Joyce you are so right!
So, my current thought is that there are a small minority of people who are at risk---period. We don't know if we are one of them, and even if we did, we wouldn't know where those weak spots were or how weak they were.


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Changes

Postby mormiles » Fri Aug 28, 2009 1:49 pm

Dr. Dake's assistant Alex called last night and changed Steve's dates to September 28 & 29. URRRGH! Had to change the flights, change hotel, and now we're renting a car instead of counting on the campus shuttle.

And yes, it's all costing more. First there's the $145 per ticket fee for changing the flights. The Palo Alto Sheraton would not give us the original rate---the agent insisted that the Stanford patient rate was based on a 7 night stay. The new rate was $50/night higher than before. So now we'll be staying at the Red Cottage Inn in Menlo Park, and we'll need a car even though it's just a few minutes down El Camino Real from the campus. The nearest Cal-Train station is just a bit too far away from the hotel for me to push Steve in a wheelchair.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Sharon » Fri Aug 28, 2009 3:49 pm

Joyce -
Have Alex write you a letter addressed to the airlines. Since your change of flight was for medical reason, the airlines should not charge you the fee. I had to do that when I went for the procedure. Angela wrote a letter (which she said she did all the time for patients), explaining that it was necessary that I stay an extra day. I was flying Southwest..no problem at all....At least give it a try!
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Postby catfreak » Fri Aug 28, 2009 7:10 pm

Hey Joyce,

Maybe you can get that letter like Sharon said to help with the flight cost. I thought the rate at the Sheraton was the same for Stanford Patients all the time. I might take a chance at calling back and talking to a manager or something. You still have a month to get some of this worked out.

Take care,

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mormiles » Mon Aug 31, 2009 8:15 am

Thanks gals. Yes, the letter. I booked the flights through Travelocity and bought the "travel protection" feature. So far, all I can tell that it bought me was the right to file a claim. The Travelocity rep I spoke with gave me the number of the insurer of the "travel protection" feature. The insurer checked with American Airlines and reported back that American made no refunds when changes were made for medical reasons. However, they e-mailed me a claim form and they instructed that I get a letter from the doctor's office as well. I don't feel hopeful for a good outcome there.

As far as the possibility is concerned of changing our lodging back to the Palo Alto Sheraton and canceling the rental car reservation, I'm not going to do it. The deal is done, and I'm not willing to suffer any cancelation fees.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Mon Aug 31, 2009 9:18 am

geez, what a bummer Joyce 8O

I did not know the travel protection feature would not protect you from such a thing-- who'd guess that??
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mormiles » Tue Sep 01, 2009 7:11 am

Marie, A bright spot! Alex turned the task over to Angela who already wrote the letter and faxed it to my office yesterday afternoon. In a conversation with Angela yesterday, she said she has written several letters like this for the same reason and that the outcome had always been positive. Great gals!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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