This Is MS Multiple Sclerosis Knowledge & Support Community

cece - i am so very happy for you . you have done a lot of the '' heavy lifting '' ...here on TIMS . you deserve much praise .

now it's your turn to recieve the great discovery of CCSVI .... corrected.

way to go kid

I'll think of you as I'm having a cocktail or two with Mrs. Success







When I walk in a room ......




Mr. Success

Well it seems kind of weird to congratulate you for having a disease but in this case I guess it's appropriate. So congratulations!!!

dam the balloons!

Cece, Congrats! Since the "market is open" let me tell you that I was elated in September when I told my veins were screwed up just like most of the other MS patients they were seeing. In any event, my disability level is similar to yours. I received treatment about a month ago. The "restless legs" that I was diagnosed with in 2008 and I have been taking medication for since that time is completely GONE. I have not had to take medication to sleep since the day of my treament. The approximately 600 periodic leg movements a night are GONE gone as well. In addition, fatigue is GONE, brain fog GONE. I received my MS diagnosis less that 9 months ago. Heres hoping that you receive swift treatment with incredible results . Heather

Best regards, M.

Let's not let the conversation be steered off course. I am enjoying the congrats. It has been a long journey to this point. Heather, what a year you must have had, from diagnosis to CCSVI treatment and feeling better.

Cece: It has been a hell of a time - sadness, shock - PTSD you name it! My biggest shock was like yours - one of elation when they showed me what was going on with my veins. For the record, I researched the DMDs after diagonsis and decided they were not for me. Just took extra vitamin D and B12. I have a good feeling that you are going to feel GREAT!

HFogerty wrote:Cece: It has been a hell of a time - sadness, shock - PTSD you name it!

I've had all that, just stretched out over four years since diagnosis. I'm cautiously optimistic, what you hear most is that fatigue is improved by the ccsvi venoplasty, and it is by far my biggest complaint. (Fear of progression being my second biggest complaint and I'm feeling optimistic about that too.)

cece, i understand where you are coming from. and as you know my results were nothing to write home about but i still believe that this a part of our problem. how would or why would any of us have a good result or bad if it weren't. we'd all just have 0 results. or when people restenose they go down hill.

i've always said and stand by this at least for myself that if i were early on and this being so new and with the other problems that are surfaceing i would hold off until this gets some of the kinks worked out. the travel, the after care is a biggie but also i think they will be coming up with better ways. practice makes perfect. ones like me and the others were the lab rats in some ways. hopefully, this will help them to improve things for others and maybe even me. i'm not complaining because i made the choice myself. then again, there were very few reports coming in that had got to be pretty scarey. so, it still needs a lot of thought. i still have the concern of what might have maybe been negative but at the point i was at i just had to try. even if i have restenosed, my choice is to wait a while and see what goes.

in the meantime i'll pursue other possibilities that can produce cause and effect. we're all the same but yet so different. no stone unturned.

so, little one, congratulations on your messed up pipes and i'm sure you will pick the time and place best for you and your results will be everything you hope for. your a smart cookie and you have been watching that yellow light "procede with caution" and only you will know when the green light comes on. when, where whatever you decide i truly wish you the best. "it's all about the flow"!!

cece, I've been thinking about you and was anxious to hear. If you understand ccsvi and find out the "bad news" it's really good news!
When I was told, during catheter venogram, I had stenoses I grinned.
Best of luck the rest of the way.
gary

Congrats Cece, with all your contributions here and all, hearty congrats are in order. It's so great that they know (some of them at least) to look for these flaps, malformed valves and the like. I know when my own flap got angio'd, the symphony in my right ear went on a "muted hiatus". It still doesn't bother me unless it's really quiet. Still "virtually symptom free", leaving a tiny percentage for error there on my part, but the fatigue being gone, and staying gone ALONE made it all worth it. This summer and last proved it, big time. If I ever get my follow up vid done where I take that hike up a steep hill in 98 degree heat, none the worse for wear, then it will at least be a visible thing instead of me just talking.

Sorry your thread got hijacked. Pitiful shame too. Any word on your treatment?

Mark

garyak wrote:cece, I've been thinking about you and was anxious to hear.

You guys are the best. I've gone slower than some through this process, I've missed some opportunities and I've also missed some pitfalls. I hope to get treated soon, but there are doctors who have just set foot on the learning curve, there are other doctors who do not give due consideration to their patients' follow-up care, there are doctors who are not as cautious as I am about stents. It is a tremendous burden as a patient to have to navigate these choices. But that valve that I saw, that has been with me and hurting me for 35 years, will get some havoc wreaked on it at the soonest safest opportunity.

Congrats Cece!

I wrote this at the same time you posted more info "Any word of when/where you will get treated?"

Anyway. I'm very glad that you've taken the first step to know whether you have CCSVI.

All the best!

Rox

TMrox wrote:I wrote this at the same time you posted more info "Any word of when/where you will get treated?"

Thank you. I will definitely be taking the next steps too. Some of you have gone at a run and gotten there so much sooner than me!

Very glad for you Cece.