SammyJo wrote:I am very glad I got to do this procedure, I'm not browsing nursing home websites anymore, and have hope that I will be able to slowly regain more functionality. And I am doing everything I can to help expand awareness of, and access to CCSVI treatment for others with vascular occlusions.
whyRwehere wrote:Anyhow, the key seems to be illness brought on by colds, UTI's, food poisoning, flu...after these the worsening is pronounced. Not to say my husband doesn't get worse slowly, but after illness, it is noticeably worse.
Strangely, his Interventional Radiologist just asked for the report of his first MRI, and was surprised by the difference to the one done recently. As we thought, the spine shows nothing now and she is flumoxed. Could it be the Antibiotics regimen my husband did for 2 years? Well, despite that, his walking is worse, sadly...
SammyJo wrote:This is going to be a short update because shoulder pain has been keeping me from typing. Shoulders started to get markedly better yesterday but I'm not going to push it. Also had some trouble with warfarin, low hematocrit (close to transfusion level) due to heavy menses for 17 days led to passing out and 2 trips to the emergency room. Off warfarin since 11/29, taking an iron supplement and feeling better. Yes, ironic given the iron overload in the brain, butcha gotta have iron in the blood too. I will get my log posted, seeing some exciting and significant improvements in long-standing physical problems (improvements in heavy leg feeling, urgency, balance, walking, toe drop, fatigue, spacticity, extensor spasm).
But this is a difficult recovery for someone with significant disability to begin with (SPMS 15 years, EDSS=5.5). I had worse disability the first week after stents, for the first time my arm movements were weakened (husband had to lift me in and out of bed). What drove me to take the plunge was 3 relapses over the last two years (triggered by fevers) that added new and lasting disability. I felt the next relapse could leave me bed ridden, so I felt I had to take immediate action.
At the bottom of my images page I added the x-ray from one month after stents (link) to my untrained eye, it seemed there was a big difference in the space between upper and lower stents, but I sent it to Dr. Dake and he said this was due to parallax, different camera angles between the flouroscope and the x-ray. Tip: keep your stent procedure notes and Dr. phone numbers handy if case of trip to ER. Once the doctor, nurses and techs saw the report from Stanford, the X-Files suspicion lifted, and they were excited to hear the CCSVI hypothesis.
Think carefully about this decision, it does have risks, and not everybody is reporting immediate improvements. All I can do is go to physical therapy every week and do my daily exercises, but I will keep track and share my results. LDN was my first "get out of jail free card". It gave me a great four years of recovery, but started to slip the past two years. I hope this is my second card. I am about n=60 in our joint experiment, and look forward to the unfolding outcome.
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