SYMPTOMS WORSE AFTER LIBERATION

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

SYMPTOMS WORSE AFTER LIBERATION

Postby ASH10 » Tue Jan 04, 2011 8:30 am

I had my Liberation procedure on the 27th Dec 2010, in Edinburgh right after it both my hands were tingling , and have stayed that way ever since, and have became quite sore, the tops of both legs are also tingling on and off, I was practically symptom free pre procedure. I am very despondent and need some reassurance that it may get better after time.Has anyone else experienced this???
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Postby Cece » Tue Jan 04, 2011 8:47 am

Have you talked to your doctor? It would be important to hear what he says.
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Postby jimmylegs » Tue Jan 04, 2011 9:10 am

ASH10, you might be interested (if you have not already done so) in tracking your experience in the appropriate 'sticky' ie post here if ccsvi liberation treatment did not work for you.

also, may i ask what symptoms you were dealing with prior to your procedure?
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after procedure

Postby ykonstan » Tue Jan 04, 2011 9:51 am

right after liberation procedure i felt feet burning for couple of hours, then it passed. Now i don't feel anything.
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Postby vivavie » Tue Jan 04, 2011 10:27 am

Sorry to hear about your symptoms Ash.
Did you have an ultrasound the day after your procedure?
If you did not I would get one, if you did but the symptoms don't go away I would also get one.

It is always tricky to answer a question like that because you want reassurance and I don't want to scare you but when my jugular collapse I had numbness in my legs getting more intense same with fatigue. I also knew something was wrong because of my skin. Waking up in the morning was as if I slept in a bath of butter! It was all oily and I had more pimples than 5 teenagers together.

We also have heard about some numbness in the arms right after procedure that goes away with time.

If it stays the same or get worse don't wait, it can be difficult to open up again after a while.

As Cece said call your doctor and in doubts ask for an US
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Postby Cece » Tue Jan 04, 2011 10:50 am

Some possibilities could be that the stress of the procedure triggered an MS relapse (possibly see your neurologist);

that the veins restenosed immediately or formed a clot that blocked it worse than it had begun, hence the worse symptoms than you started with (see an IR asap for a doppler ultrasound);

that a nerve running alongside the vein was damaged during the ballooning (this should heal on its own over many months);

or ... ?

I am sorry that this is happening to you. We have had a handful of reports of tingling in the hands or legs that begins immediately during or after the procedure that can persist for months after the procedure. When it's reported, it's those three things that cause me to potentially group yours in with those cases, that it's immediate, it's a new symptom of tingling, and it persists. When I asked in Dr. Sclafani's thread, he made a guess that it could be compression to a nerve during the ballooning, but he really didn't know. I think since our central nervous system is already damaged, any damage to our peripheral nervous system is magnified.

But first thing first, do you have access to an IR with a doppler ultrasound to check your neck?
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Postby EJC » Tue Jan 04, 2011 11:24 am

Ash did you call Dr Reid for his opinion?

I have his mobile number if you need it.
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Postby Hooch » Tue Jan 04, 2011 4:38 pm

It is possible that your body is reacting to the new blood supply. I had tingling in my left foot and then it kind of came back to life. I actually had not realised that it was a bit numb until this happened. It may not be a bad sign at all.
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Postby Asher » Tue Jan 04, 2011 4:49 pm

ASH10, also consider the possibility (not fact) that your symptoms have nothing to do with the procedure and the they just happen to coincide.
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Postby CD » Tue Jan 04, 2011 7:25 pm

I was anxious and stressed out prior to the procedure. Well any operation or procedure I have had, made me feel this way. It is a normal response, IMO. Normally, I am a calm and a relaxed person. I never had depression or anxiety. But it happens.

Do you think the stress of the procedure, or the mental anxiety could cause this? I do. Even laying on the procedure table (me-- three hours) and on your back for two hours more, could cause numbness and tingling. The procedure room and table were freezing because the equipment needed to be kept cold and bacteria is less is cold environments.

After my last procedure I found a few things got worse before they got better. I think the body is sort of shocked by any invasive procedure, even my colonoscopy caused MS to bug me.

When in doubt check it out, as those above have said. Call your doctor and report it.

I hope it is just stress and worry after having the procedure and it's a pseudo-relapse (temporary). Good luck to you.
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Postby ASH10 » Wed Jan 05, 2011 10:37 am

jimmylegs wrote:ASH10, you might be interested (if you have not already done so) in tracking your experience in the appropriate 'sticky' ie post here if ccsvi liberation treatment did not work for you.

also, may i ask what symptoms you were dealing with prior to your procedure?


I was told not to expect too much change as my symptoms were mild ;tingling hands , and right legs heavy after walking more than a mile , however after treatment hands very sore balance not good, it's probably still early days will speak to my consultant re this.
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Postby ASH10 » Wed Jan 05, 2011 10:40 am

Cece wrote:Some possibilities could be that the stress of the procedure triggered an MS relapse (possibly see your neurologist);

that the veins restenosed immediately or formed a clot that blocked it worse than it had begun, hence the worse symptoms than you started with (see an IR asap for a doppler ultrasound);

that a nerve running alongside the vein was damaged during the ballooning (this should heal on its own over many months);

or ... ?

I am sorry that this is happening to you. We have had a handful of reports of tingling in the hands or legs that begins immediately during or after the procedure that can persist for months after the procedure. When it's reported, it's those three things that cause me to potentially group yours in with those cases, that it's immediate, it's a new symptom of tingling, and it persists. When I asked in Dr. Sclafani's thread, he made a guess that it could be compression to a nerve during the ballooning, but he really didn't know. I think since our central nervous system is already damaged, any damage to our peripheral nervous system is magnified.

But first thing first, do you have access to an IR with a doppler ultrasound to check your neck?




Hi thanks for this I was told that it possibly is due to nerve damage. I am in the process of speaking to my consultant. feeling well today, so maybe it is just early days!!
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Postby ASH10 » Wed Jan 05, 2011 10:42 am

Asher wrote:ASH10, also consider the possibility (not fact) that your symptoms have nothing to do with the procedure and the they just happen to coincide.



Definately not! I was practically symptom free, it's prob just nerve damage but speaking to consultant.
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Postby mila77 » Wed Jan 05, 2011 12:29 pm

ASH10,

My procedure looked like yours. Before: symptom free. After: immediate numbness in right hand which continued for 4 months. Additionally during those 4 months some numbness in legs and torso. MRI showed many active leasions so I had to take steroids. Fornunately after steroids treatment I am symptom free again.
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