Sharon's post op CCSVI

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

Postby chrishasms » Tue Jun 16, 2009 3:28 pm

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Last edited by chrishasms on Sat Dec 05, 2009 2:00 pm, edited 1 time in total.
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Postby Rokkit » Wed Jun 17, 2009 9:45 am

Sharon, thanks for the info. I'm a little confused though about the small improvements you are seeing. Sometimes it seems you are talking about MS symptoms, and sometimes maybe you're talking about recovery from the stent procedure. Can you clarify a little when you get a chance?

Thanks!
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Postby Sharon » Wed Jun 17, 2009 11:21 am

Rokkit wrote
Sharon, thanks for the info. I'm a little confused though about the small improvements you are seeing. Sometimes it seems you are talking about MS symptoms, and sometimes maybe you're talking about recovery from the stent procedure. Can you clarify a little when you get a chance?

To clarify:
Symptoms related to the procedure:
Soreness on left side of throat when swallowing (similar to a bad case of strp throat)

Shoulder pain - the levator muscle which lays alongside the jugular vein is contracting (spasms) due to the inflammation caused by the procedure.

Facial pain at side of nose and above left eye - I am assuming this is because the facial vein is finally routing blood through it because it can now drain into the jugular which is now open. The pain I am feeling is similar,but much less intense, to what I thought was a migraine headache.

Sensation at back of skull - I do not have a clue! It is possibly because of all the muscle issues in my shoulder and neck.

MS SYMPTOMS

Gait- I have used a WalkAide for about 1-1/2 years. It has been a remendous help, but it wasn't perfect. Sometimes the WalkAide would simulate the nerve at the wrong time causing me to "stutter step". The WalkAide has a built in tilt sensor which is programmed to your gait. For instance, when your leg gets tired, you are not going to take as long of a step - this kind of throws the sensor off. Well, now the stutter step" is not happening as often. Chris, maybe you have a similar situation with your WalkAide. Do you understand what I mean?

Lifting and bending of leg - Definitely MS related. I just came home from a private Pilates session. The instructor was "baselining" me again. She noticed that the inside hamstring muscle is firing stronger than before the procedure. Please, please do not get the impression that I am experiencing dramatic improvement. These are just slight little things.

Back pain - I am still trying to figure this out. I no longer have the back pain, but as I said before I have not been exercising and playing golf either. I still need to wait a few weeks to say, "oh, gee my back pain was MS related"

Perspiring - I have not listed this previously and I hope this is not TMI. This morning I am outside watching my grandsons at their golf lessons - we are having a beautiful sunshiney day here in Denver today. I realize that I am starting to slightly perspire under my arms - not a big deal I guess, except I haven't perspired for years. Heck, I can't remember the last time I bought deodorant! This has to have something to do with the MS. BTW, I stopped at the drugstore -- I'm cool.

Hope this helps Rokkit.

Sharon
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Postby cheerleader » Wed Jun 17, 2009 11:40 am

Sharon..
Thanks for the specifics. This will really help those going ahead with the procedure to know what to expect-
Things in common with Jeff:
Procedure Symptoms (after 6 weeks) are all but gone. Only occasional shoulder pain after a long (4 mile) walk or turning head too quickly. He also had the dull pain in the back of the head. We believe it was from pressure change in blood flow/spinal fluid. That resolved after 4 weeks.

MS Symptoms Things in common with Jeff:
temperature regulation- The heat does not bother Jeff anymore. No need for air conditioning (it used to run constantly)
Pain reduction: His leg pain and spasms are greatly reduced. Used to be daily, now only once and awhile, and not as intense.
all very interesting!
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mrhodes40 » Wed Jun 17, 2009 11:43 am

I realize that I am starting to slightly perspire under my arms -


Good call people with MS shiver when they get colder and do not start to perspire until warmer than normal people. It is interesting that you note this..........HERE IS AN ARTICLE you have to register and it's not super interesting except that we have autonomic dysfunciton and lack of sweating is notable...marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Sharon » Wed Jun 17, 2009 12:01 pm

Thanks Cheer for adding Jeff's symptoms. You wrote
Thanks for the specifics. This will really help those going ahead with the procedure to know what to expect-


I agree - I am sure we are all going to have our own personal symptoms, but I think that Jeff, Marie, Holly and me have also had similar symptoms which I think are just going to be part of the recovery.

Last night I took a muscle relaxant for the shoulder. What a difference! I wish I would have thought to call my doctor sooner for a prescription. Marie, if you are still having problems, you might try it. I have never taken muscle relaxants before, so I did not know what to expect. My doctor said the shoulder and neck muscles had contracted so much that my shoulders were 1-1/2" to 2" off kilter.

Marie, I will read the article later - thanks for posting.

Sharon
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Postby Rokkit » Wed Jun 17, 2009 12:13 pm

Thanks a bunch, Sharon!

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Postby skydog » Wed Jun 17, 2009 4:26 pm

Wow !!! Thanks Sharon. Coming from a guy that has not been able to break a sweat in over three yrs, that's great news. Looking forward to a good mammoth SWEAT... Keep on Healing. Peace and Health Mark
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Postby mrhodes40 » Wed Jun 17, 2009 5:09 pm

relaxant...Which one are you taking? just curious....
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Wed Jun 17, 2009 6:01 pm

Marie,
relaxant...Which one are you taking? just curious....

my GP prescribed Carisoprodol (it is the generic for SOMA) - 1 pill taken before bed

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Postby peekaboo » Wed Jun 17, 2009 6:05 pm

Perspire ...i only perspire at night i attribute that to menopause :evil:

I tried Soma for my spaticity and felt nothing...I also learned that it has become a street drug so what you don't use destroy :!:
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Postby Sharon » Wed Jun 17, 2009 6:11 pm

Yes, Peekaboo - my GP only gave me a few tablets with no refills - it can also become addictive. I am not a pill taking person and she knows it - I hope to off of them within a day or two.

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Postby whyRwehere » Thu Jun 18, 2009 1:58 am

Well, no stinky armpits is one symptom I wish my husband had, but he can still stink....but he's probably pretty good for a man....
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Postby Sharon » Thu Jun 25, 2009 1:20 pm

Three + weeks out from procedure

The good news is that I played nine holes of golf this morning - temp was in the high 80's. The procedure has definitely not helped my golf game!! I took it pretty easy because I did not want my shoulder to start into spasms again. It was great to get out and feel active again.

My blood tests came back yesterday -everything there seems to have stabilized because there was not a change in dosages. I will sure be glad to get off the blood thinners - the bruises just keep showing up. I was pulling weeds in the garden the other day and ended up with a bruise between two fingers!

Symptom Changes

Today while I was playing golf, I was perspiring more than my usual. This is probably good, and healthy for the body - I am just not use to it.

I still do not have my back pain - I am back to my exercise class and Pilates and today I played golf - so far it has not flared. This is amazing to me, because if it is related to the CCSVI, it was immediate. I realized that I did not have the pain in the post-op room but I attributed that to taking the pain pills. I'm still kind of skeptical -- I guess time will tell.

Walking - I still use my WalkAide - I have alot of improvement to go before I would side line the use of it. I am noticing a slight smoothness to my gait. My hamstring muscle seems to be holding my leg better. And, the best judge is my grandson who was walking behind me yesterday and excitedly told me that my limp was not as "big". Again, a small difference. The other side of it is that after golf today I was tired and my leg was doing it's own thing again.

I am feeling good even though I get tired more easily, but that is a side affect of the Coumadin.

That's it for now
Sharon
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Postby mormiles » Thu Jun 25, 2009 1:50 pm

Sharon, Thank you so much for this update. Funny how you refer to sweating more than usual when only a short time ago you weren't sweating at all...and hadn't for many years.

Sharon did you have imbalance issues, and if so, have they improved?
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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