Need info ASAP!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Recupe question for those who have had the procedure

Postby Kacey » Sat Jan 16, 2010 9:07 am

Post procedure day 4. Michael has been feeling a bit "off". Still tired although not as badly. He feels a kind of throbbing in his head which is painless but continual. He feels somewhat disoriented and off balance. We are wondering if this is perhaps due to the new, more rapid blood flow? Perhaps his brain has to adjust?
Just wondering if anyone else out there has experienced this or anything like this and if so, how long before you felt "normal"? Any info would be appreciated, would love to know what kind of post procedure effects people have experienced. Mike has had angioplasty, not stenting, so I know his symptoms wont be exactly the same, but I think he's a bit anxious. Being a person in the medical field, I feel confident that this is his body in "what the heck??" mode..but I would love to know. Thanks folks!
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Postby leetz » Tue Jan 26, 2010 4:06 pm

Kasey...i am unsure what to expect...i am in upstate NY as well...had a veno-gram done and they found zero problems...going for doppler next!!!! i was diagnosed with ms through lumbar puncture...ouch!!! pm me and we can chat!!

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Recupe question for those who have had the procedure

Postby cheerleader » Tue Jan 26, 2010 4:38 pm

Kacey wrote:Post procedure day 4. Michael has been feeling a bit "off". Still tired although not as badly. He feels a kind of throbbing in his head which is painless but continual. He feels somewhat disoriented and off balance. We are wondering if this is perhaps due to the new, more rapid blood flow? Perhaps his brain has to adjust?
Just wondering if anyone else out there has experienced this or anything like this and if so, how long before you felt "normal"? Any info would be appreciated, would love to know what kind of post procedure effects people have experienced. Mike has had angioplasty, not stenting, so I know his symptoms wont be exactly the same, but I think he's a bit anxious. Being a person in the medical field, I feel confident that this is his body in "what the heck??" mode..but I would love to know. Thanks folks!


Kacey-
Jeff had a pretty nasty headache for a week or so after the procedure as his brain fluid levels were adjusting to the new flow. He also had some nausea. I suppose the throbbing you are describing could be a similar response. Is your husband on aspirin or any blood thinning regimen?

Check in with his doctors if you have concerns. It's always better safe than sorry-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jay123 » Tue Jan 26, 2010 4:44 pm

Kacey ,
have you talked to Dr. Mehta, is he going to do any more procedures? I read somewhere he wasn't, I wondered why not.
Thanks and congratulations
Last edited by jay123 on Tue Jan 26, 2010 8:32 pm, edited 1 time in total.
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Postby Kacey » Tue Jan 26, 2010 7:57 pm

Cheer,
thanks for the info. He is doing much better now. Still waiting for the numbness to disappear, but his cognition, fatigue and depression have improved quite a bit!
Jay, we saw Dr Mehta today for follow up. Where did you read he was not doing any more procedures? My husband was the first Liberation procedure he has ever performed. But he is really encouraged and into it. He is taking on more patients with MS. He will be taking his "baby steps" and is soon going to be starting up a study involving some local MS dedicated neuros. I asked him how he felt about giving out his name today and he is absolutely fine with this. He is a wonderful, wonderful man!
Michael will follow up with him in 3 months for ultrasound and probable MRV. He may need to be stented at some point in time, and if the numbness in his arm doesn't improve then we may push for it. But, Dr Mehta says in talking with Dr Dake, it takes a long time for people to develop MS symptoms due to the narrowed veins. It may take a while for the deposits to clear out of his brain and he may regain some of the lost function. We were very encouraged by this.
My husband is truly a different man! I wish I could take away his numbness that is sooo aggravating for him to deal with, but, he has been a shell of a man for many many years. I feel like he may be "whole" again. He is present and in the moment with my children and me. There is no mincing words, this procedure, I believe, has saved his life...
I am so very thankful to all who have been involved in getting this information out there. It is still all so surreal!!
Kacey
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Postby jay123 » Tue Jan 26, 2010 8:42 pm

Kacey,
Thats the trouble with internet stuff, you need to check everything yourself.
I received a PM from someone asking my advice on doctors to try. I gave her Dr. Mehta's name. Her reply to me was
"We tried calling Dr. Mehta. He is not treating patients. "
I tool it at face value, sorry.... sounds like she was wrong.
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Re: Recupe question for those who have had the procedure

Postby CureIous » Wed Jan 27, 2010 12:14 am

Kacey wrote:Post procedure day 4. Michael has been feeling a bit "off". Still tired although not as badly. He feels a kind of throbbing in his head which is painless but continual. He feels somewhat disoriented and off balance. We are wondering if this is perhaps due to the new, more rapid blood flow? Perhaps his brain has to adjust?
Just wondering if anyone else out there has experienced this or anything like this and if so, how long before you felt "normal"? Any info would be appreciated, would love to know what kind of post procedure effects people have experienced. Mike has had angioplasty, not stenting, so I know his symptoms wont be exactly the same, but I think he's a bit anxious. Being a person in the medical field, I feel confident that this is his body in "what the heck??" mode..but I would love to know. Thanks folks!


Oh you bet there is an adjusting period. Things should level out. For me it was about 3 months, up to and including being off the thinners. In my mind, all the adjusting was a good thing, it told me things were changing. Since improving blood flow to the brain can't (in my mind) be considered a bad thing, I just wrote all that "weird" stuff that was going on up on my mental chalkboard. After 3 months, most of it was just erased with nary a thought. I think our brains, as a physical property, just don't like going up and down too fast, but the human body has an amazing ability to adapt and adjust on it's own. Remember, you (he) fundamentally altered the blood flow to the most important organ in your body that controls physical and mental processes, emotions, energy levels, hormones. But you altered it in a GOOD way, think of it as a "restoration". That brain though has spent years adapting and adjusting to a lower oxygen stream and a host of other issues, the one thought that kept going through my mind, was "healing crisis". Oh, but thats a good thing! :)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Kacey » Thu Jan 28, 2010 8:19 pm

Marc,
Thanks so much for the info!! That is a huge relief to know, seriously. Even if his numbness doesn't dissipate, the amazing difference in his personality and mental clarity is enough....
I just cannot get over the change. It is truly amazing!! What a gift!

Thanks again for the reassurance!
Kacey
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