Since you are traveling from Canada, those who have gone before would like to make sure you have aftercare at home--someone to monitor your coagulation numbers (INR and/or PT) and to watch you for any potential complications. [...]
Richard Campbell's response to: http://www.facebook.com/note.php?note_i ... 0796282297
I also recommend prudent involvement in one's health choices. Though not red flagged or any such, I have had a C-T Scan of my heart to make sure that at my, age, weight, BP and other factors, nothing is lurking that might negatively affect my proposed Liberation treatment.
As I was reminded by the MS Society outreach worker that contacted me in the weeks after my diagnosis back 2000, "not everything is MS" Meaning of course that you can get sick with any of the other ailments than plague us just fine without any involvement from MS.
Where it is in your power, I recommend that any issues that might have a negative effect on venoplasty, clotting factors, drug reactions, and the like, should be looked into (if need be/possibly addressed) so as to build a better body of knowledge for your informed decision.
I am quite fortunate by most standards with this disease in that my progression has fallen into a very long remission. I have had some faculties improve slowly. But I can totally understand why any of us suffers have such a hard time with the advise to "wait" when either we have have had our lives curtailed and hemmed in for years and/or we are looking at a bleak, worsening future.
When there is a real hope of at least some relief after years of empty promises and failed treatments, almost any risk seems worth it. Nevertheless, I join Joan in advising to take just a little more time and to set up your aftercare resources and make yourselves better prepared.
16 hours ago
dlb wrote:Hello RC,
I could echo the very same concerns. I too am on the cusp of obtaining treatment. I have found a remarkable GP who is not only interested in CCSVI but seemed very well versed on the topic when my husband & I sat down with her. She has given me a full page of blood work, that she wants me to do prior to my procedure - baseline for my file with her. I have also spoken with my neuro. Although she is not really in favor of me seeking treatment, she is following up with her patients that have sought treatment & wants to see me in 2 months post procedure. This kind of help is out there and I am completely in agreement with you - we need to have all that in place before we seek treatment. I made a choice to stay within N. America as that is as local as I can be.
I am concerned about the high rate of re-stenosis and obtaining follow-up care.
I'm also wrestling with the issue of: if it isn't really broke - why fix it... because I have no all-day/every day mobility/disability issues. I do have headaches (since long before an MS dx). I do have cold hands /feet (since long before MS dx). I have problems when I'm lying down with tingling hands (again since long before MS dx), but that has greatly improved with IBT. I also have less headaches since IBT! So I wrestle with my decision b/c of the people who have posted that they are worse off after the procedure.
I also fear that I may have an exacerbation that will leave me with an issue that may have been prevented had I not chose to wait [...]Deb
dlb wrote:Best wishes for your procedure & in finding a terrific GP for follow-up - they are out there!
You have had MS for a long time based on those symptoms you mention as predating your diagnosis. Do you have the fatigue, the times when your get up and go just left the room. Are you living the way you did 5 or 10 years ago? If not, can it be the MS?
dlb wrote:PCakes.... Is that a dachshund you are walking?? LOL
Best Wishes to you as well - I'll be watching for your procedure story!
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