Is there such a thing as temporary restenosis???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
Ali888
Family Member
Posts: 46
Joined: 8 years ago
Location: Winnipeg, MB Canada
Contact:

Is there such a thing as temporary restenosis???

Post by Ali888 » 8 years ago

I had my CCSVI procedure on Jul 9/10. Over the course of the next 2 months, I had the following improvements:

1.) My foot was no longer purple.
2.) I could wiggle my toes.
3.) I had feeling in my feet.
4.) I could tandem walk up to 19 steps at a time (that was my record).
5.) I was no longer dizzy went I bent down and then stood back up.
6.) I slept thru the night.
7.) I actually dreamed.
8.) My sense of smell improved.
9.) My daily headaches disappeared.

Last week, the headaches returned. My right foot turned purple. When I bent down and then stood up, I felt dizzy and almost like blacking out. I woke up every couple of hours each night. I could no longer even do even one tandem step. I dont believe I dreamed all week.

I was pretty certain I had restenosed.

Now starting on Friday, the headaches stopped. My foot is pink again. I can tandem walk up to 7 steps. I have slept thru the night twice in a row and remember dreaming last night. I do not feel dizzy when I stand up after bending down.

Am I just jumping the gun or could I have temporarily restenosed and then improved?

Would love to hear any opinion.

Ali

Rokkit
Family Elder
Posts: 669
Joined: 9 years ago

Post by Rokkit » 8 years ago

Someone recently posted a story about having improvement then losing it only to get it back suddenly one day when they were straining doing some gardening I think it was. His theory was that he somehow inadvertently re-liberated his re-stenosis, I think. Sorry I can't remember more details or who it was.

Cece
Family Elder
Posts: 9313
Joined: 9 years ago
Contact:

Post by Cece » 8 years ago

It's strange but I agree, it seems like a temporary worsening or restenosis and then an improvement again.

This also reminds me of CaptBoo with his cigarettes, making himself think he'd restenosed until he finished off all of them and then felt better the next day.

During the week things were off, were you doing anything different or oxygen-depriving or had a cold or something like that? I know this could be a stretch! I hope the improvements are back for good.

User avatar
Johnson
Family Elder
Posts: 979
Joined: 9 years ago
Location: Ucluluet, BC
Contact:

Post by Johnson » 8 years ago

Rokkit wrote:Someone recently posted a story about having improvement then losing it only to get it back suddenly one day when they were straining doing some gardening I think it was. His theory was that he somehow inadvertently re-liberated his re-stenosis, I think. Sorry I can't remember more details or who it was.
That was skincoll. You can search his name to find the post. It was about 3 weeks ago.
My name is not really Johnson. MSed up since 1993

David1949
Family Elder
Posts: 898
Joined: 8 years ago
Contact:

Post by David1949 » 8 years ago

I've been wondering if CCSVI is always a continuous condition. In certain cases like inverted valves or agenesis it probably is. But in cases where the vein is simply constricted is it possible that the degree of constriction changes? Could the surrounding muscles compress the vein at some times and not at others? I don't know, but if it does maybe we should call that condition Relapsing Remitting CerebroSpinal Veinous Insufficiency RRCSVI. Just thinking out loud I guess.

User avatar
Kathyj08
Family Member
Posts: 74
Joined: 9 years ago
Location: Indiana, USA

Post by Kathyj08 » 8 years ago

I've wondered the same thing. I had 12 years between flare up number 1 and 2. then I had 16 years between number 2 and number 3. I have wondered why all those years I didn't have problems if I had the abnormalities all along. (I had the procedure done in Bulgaria)
Another strange thing, with my second flare up I had right ear pulsatile tinnitus and this time it is in the left ear, which if I understand correctly is due to pressure or compression on the opposite side of the neck.
So I wonder, if my veins opened and closed on their own over the years.
By doppler testing, it shows that I have re-stenosed.

User avatar
Ali888
Family Member
Posts: 46
Joined: 8 years ago
Location: Winnipeg, MB Canada
Contact:

Post by Ali888 » 8 years ago

Interesting to hear that perhaps I'm not alone.

I slept soundly last night and can tandem walk 10 steps!

I think I'll stop questionning how this is all possible and just enjoy!

Thanks for the info!

User avatar
pklittle
Family Elder
Posts: 341
Joined: 8 years ago

Post by pklittle » 8 years ago

I believe there are many variables that impact how we ms'ers feel from day to day. It is not just how open those veins stay. Like one doctor wrote a while back (Dr. Simka??).. MS = CCSVI + something else. As one who had my stenosis ballooned with no apparent impact, clearly some other things are at play here. Just my opinion.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post
  • temporary paralysis
    by Bright » 9 months ago » in Undiagnosed
    2 Replies
    1029 Views
    Last post by Bright
    9 months ago
  • MS is the only thing left
    by Uplate » 9 months ago » in Undiagnosed
    11 Replies
    1446 Views
    Last post by Scott1
    9 months ago