This Is MS Multiple Sclerosis Community: Knowledge & Support

I had the procedure done at the Euromedic Clinic on May 20, 2010. I did not have a stent but only ballooning of the left jugular vein. Initially, had improvements of warm hands, noticeable color to my face, and the removal of a limp (2nd day after procedure). The warm/cold hands would fluctuate throughout the day, but each day it seemed to be more warm than cold. I only assumed that this was because this whole healing thing is a process, and I cannot expect things to be "stable" overnight.

However, it is now just over a week post-procedure and I'm having some things happen that are a bit concerning, and I would like to know if others are experiencing the same type of things.

I was not on any drugs for MS, firstly, because we couldn't afford them and because my neurologist wanted me to hold off as long as possible. I was diagnosed in June of 2009 but the theory is that I perhaps had MS for as much as 15 years or more. I have relapsing remitting.

Last Wednesday (about 4 days ago), I started to feel a little unwell. I had been feeling pretty good post-procedure with extra energy. Of course, we felt very jet-lagged from the 30 hour travel home, so we were also very tired, but in a different way than MS tired. But on Wednesday night, things changed. Thursday morning I woke up and felt as though my entire body was in a startled mode. Much like when someone scares you and your insides turn inside out, that is what I was feeling. It was exhausting and I could only stay in bed. The next day wasn't as bad but I still didn't do anything other than stay at home. The next few days were worse and yesterday was the worst, staying in bed all day barely being able to open my eyes I was so exhausted. I ended up going to our local hospital to get checked, as I didn't know if I was experiencing some complications to the angioplasty or not. The only thing they found was that my white blood cell count was low.

Yesterday, I noticed my right arm was achy and my hands and feet felt like they were VERY warm and buzzy (but not like the electrical currents I had with MS attacks). This morning, I had more energy, not as "dizzy" but the numbness (which never went away post-procedure) in my right hand started to increase and creep up my right arm. Then shortly thereafter, it felt like I had placed my right arm in a bucket of ice, and was burning it was so cold. This lasted for a few hours. Finally it started to warm up and was very warm again. That was a relief as the cold feeling was, I think, contributing to how weak my right arm was feeling. But now again, only an hour later, my arm is once again returning to being cold and is very weak still and achy.

Here are my thoughts:

1. Is it possible for your body to fluctuate between poor symptoms and good as it heals?

2. Is it possible to have another "attack" post-procedure and without restenosing .. ie. does your body take time to become stable after procedure.

3. Do digression of symptoms mean that you are restenosing?

4. Has anyone else experienced fluctuation of symptoms post-procedure but yet continue to improve overall?

5. How many out there find that Simka says there is a blockage in the azygous vein? I don't even recall them mentioning mine.

It would be so nice if there was information "out there" or provided to the patient for what to expect post-procedure .. whether all these things I am feeling are normal, or whether it spells trouble.

I will point to other posts here that answer some of these questions:



Just about every procedure or natural event (such as childbirth) has "ups and downs" and CCSVI treatment should not be any different. ErikaSlovakia is a poster here (patient #2 of Euromedic) and she went through the "ups and downs" afterwards. Reading her posts from the start gives an account that one expects: improvements are not "straight line" and not necessarily all immediate. Some posters report some changes took place almost immediately (usually warmed hands, feet or improved blood pressure range). Others changes take longer to show up and are not yet experimentally validated. That is because we are at the "looks possible, could be promising" stage, not at the "tested and approved" stage. In the mean time many of us desire to be at least tested for CCSVI and treated as a matter of our own choice.



A definitive answer is not possible at this point. If CCSVI is later shown to be linked or related to neuronal damage, then treating CCSVI may slow or stop further damage within a period of time for the treatment to correct whatever imbalances occur in the brain on account of poor blood flow. But fixing blood flow may not instantly stop all of the damage that might occur. One working hypothesis is that poor flow allows iron to accumulate in the brain to levels that poison the neurons. Under this hypothesis it is not poor venous flow that is the direct cause of the damage/poison, but the long run accumulation of iron. And it can take a while to correct the imbalance, even with corrected venous flow. A battleship does not stop on a dime, even at full reverse thrust.



This has been noted by posters here and in Zamboni's papers. If restonosis occurs and the symptoms return (or become more pronounced) then at least you have a good indication that you have the source of a problem pinpointed -- and need to weigh the risks of restonosing with those of stenting.




Sure, read ErikaSlovakia's posts; the disease took years to progress to whatever stage it is in each of us -- with ups and downs during those years. So it is not unreasonable that a possible treatment will take a few months to take full effect? I am an "in line to be treated" possible CCSVI'er and those who have gone through the experience will have better answers than I have; but this is a start based on reports here and elsewhere. Please keep us posted as to your status. Wish you the best.

I have been blogging my progress if that helps anyone in answering my questions.. thanks for your response.. it did help! Thank you!

http://freedom-from-ms.blogspot.com

hi dawna and thx dodgeviper
i'm in the same boat, being liberated may 6th in katowice poland. it seems this cry for help could not have come at a better time. different symptoms, same questions.. have read erika's troubles a long time ago, and now of course i remind myself this healing does appear to be in flux, which probably is 'normal', its just that no one has the answers yet. soooo, i've taken to writing everything down, so its out of my head at all times, and give it one more month... lets both see together...

summerland! I drive up there once in awhile to see a doctor there. Beautiful countryside. The last time I was there (May 14th), I said to myself.. "and why is it that i don't live here"? Absolutely beautiful!

So, Esta are you also having symptoms go away and come back? Sorry if I'm not finding your comment clear on that.. guess I still have the brain fog ha ha.

dawna

could some of these side effects after liberation be a cause of blood thinning medication?

Yes, I think it caused me to feel dizzy and lightheaded.. because now that I'm off the heparin.. that symptom has disappeared.

hi dawna
yes, some things have come back - purple feet, for instance, yet they're not cold with socks on like before. my speech has started slurring again, and brain fog and fatigue...like i said, i've decided to write every thing down for a month.

next time you come this way, pm me

ikulo, i only had the thinner for 7 days, so you'd think it would be gone. i just stopped a weak daily asprin though, so i could take IBprophen to see if i didn't have undue swelling which might be causing something...maybe the 70mg asprin - which would thin the blood...hmmm

So Esta, you must have had a stent placement?

Hi Dawna, I just have read your PM.
As more patients have similar questions I will try to reply.
In 2 days I will be 7 months after the procedure in Katowice. I was #2 so I understand people ask me many questions.
First of all we all have different combinations of MS symptoms. We also have different combination of CCSVI problems and we all have different lives.
Dr. Simka told me about up and downs in August 2009.
As you know I have a stent. I was weaker and had problems with fatigue the end of December, January, February and beginning of March. I had flu in December - not strong. As you know I used to spend many hours on the internet and the weather in my country was really bad. I also had a lot of stress with some office - disability court issues.

Yes, you can feel worse and then better again. On the other hand you might have restenosis as well. I have visited more doctors in my country before having the treatment to inform them but also because I wanted to have the possibility to go for check up. I know very, very good how hard it is in the USA or Canada. I am very sorry.
The best would be if you had chance to go for a Doppler in Abbotsford to see if your jugulars are OK. I am afraid it is not that easy at the moment.
We still do not know exactly what and how is the healing process after the procedure.
I for sure have not had any attack. In case you really have restenosis I think it is possible having an attack. I cannot forget words of Dr. Zamboni from his paper!
I also take LDN, may be it still helps me. I do not know for sure.
I am not happy about the situation regarding CCSVI in Northern America. I strongly hope it will be better soon.

My recommendation for you and for patients who decide to have the procedure outside of Canada or the US. Before you come to Poland try to inform, find some radiologists and vascular doctor who would be able to do Doppler for you after your procedure.
I am aware I am telling you to do something extremely difficult. Many of you are not even able to move around the house. Many of you do not even have enough money for gas. I understand you because my disability income last year was 60 Euro per month. One night in a hotel in Katowice was 40 Euro.
In case you have more questions do not hesitate to ask me.

Good luck!
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

hi dawna
i had angiopathy in my r jugular. i have a feeling its restenosed, but i am still going to write it all down for a month...in the interim i will give it 2 weeks and write dr simka for his advice. i'd love to get it checked, but the cost will be 1/2 my airfare back to poland...

thanks erika for your encourahement.

dawna, i was in slovakia and met erika...she's beautiful and filled with knowledge.

Thank you Erika for your helpful response. I could get a doppler (If I paid hundreds of dollars) to get rechecked at False Creek Surgical Centre, but I just don't have the money right now. And, I'm not sure the doppler really is accurate. For example, just prior to my procedure Dr. Simka said my doppler showed that both veins were quite blocked, yet in the procedure, they said only the left vein was blocked. Which leads me to believe that the doppler really isn't that entirely accurate, and only a tool used to help diagnose -- yet cannot be guaranteed to have accurate results. So, I could get the doppler done again, have it show stenosis, have the procedure done again, only to have my veins clear. This area is just all new .. and I guess we are the pioneers!

This is a reply I received back from Euromedic Poland in asking .. "can we expect to have fluctuations in our recovery, ie. good days then bad days, good days, bad days etc."

They replied:

Doctors say you need to observe the symptoms for a longer period of time as organism needs to adapt.

Please keep us informed.

Hi Dawna, I think the doctors are right. It takes longer. I understand the money problem. I do not have to pay for health care in Slovakia. I also got 6 false negatives here. The doctor in Bratislava (capital of Slovakia) who does the procedures can do a proper Doppler. But he is still only learning. He can find a lot but he is not that experienced as Dr. Zamboni or Dr. Simka. It is sad that you have to pay for some tests and there is still high possibility that you get false negatives.
I also have some "bad" days. Like now I am very dizzy. It is raining and raining here.
I just can wish you good luck!
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse