This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,

I am anxiously awaiting my second venogram which is set for March 2.

My symptoms are back in full force, which has put me into a really dark place. I am trying to pull myself out of this mental torture, I am hoping your responses to my question will help me on my way.

Is there any reason to believe that I won't regain the same improvements that I had after my first procedure once I have my second? I would love to hear your experiences.

Thank-you.

WinnipegGirl, I am sorry to hear that you've lost those improvements. How unfair and random this can be.

I am sure others will share their experiences. There are many people who regained the same improvements (or better) after a repeat procedure and there are those who did not. But I am thinking of the two most recent ones I've heard where the patient did not regain their improvements that they'd had after the first one, and both of them had complications (one a clot after the second procedure, the other a vein that was unable to be reopened due to clot). So I would think if it's simple elastic recoil restenosis, you will get back what you had.

I hope March 2nd comes quickly. Keep us informed, ok?

WinnipegGirl, I hope March 2 comes quickly for you. I'm sorry to hear that your symptoms are back in full force---I know how disappointing that can be.

I had some good symptom relief at my first procedure---and the improvements left. I just had my second procedure about 5 weeks ago and am not experiencing the same amount of symptom relief unfortunately. Different symptoms have eased up while the cog fog is still strong for me.

My problem vein wouldn't open up in the second procedure. I think it got stretched a little from the first angioplasty but it has a septum that's slowing down the flow. So it really depends on what's going on in the vein to cause the problem. Don't go to a dark place---there's hope that things will work out for the best. Hang in there.

Patrice

Thanks Girls! I will keep you posted! Fingers crossed.

Hi WinnipegGirl,
I had the first procedure and during the ultrasound the second day, I found out I had lost flow in the left IJV. No flow.

I didn't even have time to notice much of a change. The MS Hug seemed to go away, but that was probably the Azygos vein arch that was unblocked.

I had the second procedure three days after the first, talk about feeling beat up. Yikes!

Anyway the left IJV got three stents now and is flowing with Warfarin to be sure it flows. I had a few things that were going on in the left that blocked the flow .

A flap, clots from Plavix not working for me right away, and a problem around C-1 that refused to stay open. Also a waist that I think recoiled. I had a great doctor so I didn't worry.

It is disappointing, but after the second procedure I see improvements everyday, now that the healing is done. It takes time to heal and you have to take care and rest. Drink lots of water and lay supine during your nap, rest, or sleep to let the blood drain down a few times a day.

Miracles happen but we have to do our part too and rest. Not that any of this is your fault or mine. We might have different problems, different veins that re-stenosed and for different reasons. Our bodies are all designed unique to each other inside and out, and so is our MS. One size does not fit all.

So stop worrying about it not helping. Try to think positive until March 2nd comes around and you get your improvements back. Have hope. That's the best you can do. Why worry twice?
CD

Thanks CD! I appreciate your encouraging words. I am anxious to go and will work hard at thinking more positive thoughts.

I would like to have children but I need to get back to the way I felt, although definitely not 100%, after my first procedure. I have my fingers crossed.

Wishing you nothing but great health

I'll be sending good thoughts and prayers your way.

I sent you a PM

WinniepegGirl - Cece mentioned me in an earlier post. I had 2 procedures - 2 different docs. First time around, LIJV was 100% blocked and ballooned; RIJV was fine; azygous was ballooned. I had fairly moderate/dramatic improvements that disappeared after a couple months. Second procedure showed LIJV to be either occluded, thrombosed, or absent and angioplasty was not possible. RIJV had abnormal thickened valves that were immobile (ballooned). Azygous showed valvular malformation with poor movement of the valves as well as thickening of the valve leaflets (ballooned). I am now 18 days post procedure. I can't say that the improvements are dramatic but there are improvements - a normal body temp (98.6 vs 97.4) and I sweat. I saw my massage therapist today and she commented that it was difficult to remember which leg was my bad side since they both seemed equal in temp and pliability (sp?). To me, the moral of the story is if there's something that can be "fixed", then it's good to fix it - regardless of whether there will be improvements or not...there are many improvements that may be invisible...

I am 10 weeks post 3rd procedure. I bounced back within 48 hours after each treatment, and I am continuing to get stronger each day. My doctor, Ziv Haskal in Baltimore, MD believes that once you have proven that you are a responder, you will continue to respond. That is assuming there isn't issues with clots, thrombosis, etc.

This is all so new. The experience of the doctor really does matter. Go in with real expectations that you will return to the place you were after your first treatment.

Remember how successful that placebo effect is!

Check out my blog for my experiences after each of my treatments. Hopefully that will give you confidence boing in for your round 2.

Good luck!
Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

Thanks for your responses ladies! I was in talks with Dr. Haskal back in August but being from Canada i couldnt afford to pay the out of pocket expense. Insurance doesn't cover it for us Canadians

Dr. Haskal is amazing though, you were in great hands. Just based on the conversation I had with him that was very evident.

I could barely walk from my car into a building today...so frustrating, but at the same time I know it could be worse.

Wishing you all amazing health!

winnipeggirl, whereare you going for your 2nd procedure?
my 2nd proc wasn't as good as the 1st, but i developed a thickening of my blood inside my stent. you may just get re-angio'd wih a bigger baloon and get tremendous, lasting results.
its always better not having blood refuxing to your brain no matter how improved the results are.
HOPE is the new word, never forget that, we're so close to a great future!!!

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PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia