CNClear wrote:Also, I have good news, too!!! ALEX CALLED!!!! Now I wait for Dake's call, I FedEx'd my stuff for his perusal and Alex said it looks like the end of November for me!!!
Keep on keepin' on!
Lisa, aka CNClear
RRMS dx 1983, age 50
Waiting for Dake's call!
CNClear wrote:(no offense intended, but I cant find anything that says whether you are male or female and your name could be either...
cheerleader wrote:...hope you're healing and getting thru the "what the hell did I just do?" phase...
sincerely appreciate the hope that this whole experience has brought into my life, but my recovery has certainly been more difficult than I would have expected from reading the experience of others.
radeck wrote:Just to clarify, would you say that your new problems are mostly related to the surgery, or are there also any increased MS symptoms?
radeck wrote:I really hope that the main hope in CCSVI treatment, to stop further progression by taking away the root cause of the problem of MS, will be fulfilled in your case. And in addition, that your body will find ways to replace the parts of its central nervous system that have been affected most by years of MS.
Sharon wrote:Give this some time --- a broken bone takes how many weeks to heal? We are talking major brain healing that needs to go on -- 18 months is a short time when you have had MS for ten, twenty or thirty years. Keep your chin up - do those stretching exercises!
In my Weekly Progress E-Mail to Dr. Dake I wrote:Dear Dr. Dake,
It has now been almost seven weeks since I was treated for CCSVI at Stanford (9/16/2009). I started physical therapy last week for the right-side trapezius/neck problem I reported earlier. I continue to use heat and take extra strength Tylenol at night to help with sleep. The physical therapy is helping.
I am still trying to regain my physical stamina to the level it was before the procedure. I am able to take short walks daily (1/8 to 1/4 mile), but lower body weakness and physical fatigue still bother me and seem to be more troublesome than before the procedure. I still get up 5+ times nightly to empty my bladder. My walking is still inconsistent and a little unstable, and I still use a stick for any but short distances. Mental fatigue and mental cloudiness still trouble me, particularly in the afternoon and worsening into the evening.
I tried to taper down my use of Verapamil that I take daily to prevent migraines, in hope that the CCSVI procedure might have an impact, but the head pain started to increase within a few days, and I restarted taking 480mg Verapamil again nightly. The head pain has since gone away, and I will try to reduce Verapamil again in a month or so.
I continue with Monday blood checks to monitor INR. I am currently taking 6mg Coumadin nightly, but my INR is still in the 1.5 range.
I feel like I have gained little from the procedure, and am frustrated by lack of progress in recoverying my strength to its pre-procedure level. I start to crash physically and mentally nightly at about 7pm, but try to make myself stay up past 8pm. I typically wake up about 7:30am.
I am hoping for a long-term benefit of discontinued disease progression, and eventual recovery of lost function.
I have been somewhat troubled by how variable my recovery has been, and have hesitated to claim any specific benefit because of this. But, certain benefits and symptomatic improvements are becominging clearer with time.
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