Muscle Weakness and degeneration

[yablondskie]

Hi Guys!  I am new to your community.  I had Decompression surgery 1 1/2 years ago.  Prior to that I had suffered for approx 20 years with symptom that were getting continually worse.  As is the norm with this animal I was misdiagnosed by many drs.  I basically had to diagnose myself by serching and searching the internet and the finding a neurologist that would take the time to listen to me.   It amazes me that most neurosurgeons have either never heard of this or were not trained about it in school.  Neurosurgeons are, but who goes to see a neurosurgeon first!!!  Anyway, I digress.  My surgery was a smashing success, considering the percentage of people I have read about that didn't get relief.  I still have some numbness and dizzyness.  Numbness that won't ever go away because It had gotten to a point of no return.  But I don't have a headache EVERYDAY!  I have slight ones and a really bad one once in awhile.  I can live with that.  

My question that I was searching out when I came across this site is - do any of you who are still suffering from Chiari and are pre surgery or those who are post surgery notice that your muscles are deteriorating?   Strength and tone?  Not just because you are getting older, or less active, but at what seems like a very noticeable rate?    I'm trying to figure out if this is part of Chiari or some other issue.  As we all know sometimes its hard to tell!  Any comments would be helpful!

[selmaS]

  Hi and welcome to the Chiari forum.

WOW I am amazed she can skate....that in itself is inspiring....

As for the issues u said she is type II and I want to  be clear u mean she has Chiari II so it is Arnold Chiari since it is II.....

Does she also have tethered cord, or ne other related condition like a syrinx, ehlers-danlos, POTS, ICP? For someone her age she should not be dealing with these issues, but a related condition to Chiari could be the culprit.

Those with Chiari r prone to auto immune conditions like RA and I am sure is one reason the ANA is being looked at...but we r also prone to connective tissue disorders too.

The other issue could be scar tissue forming and when lifting her arms it is cutting off circulation....something to rule out ....??

I have Ehlers-Danlos and tethered cord and can have the bowel and bladder issues as well as lower back, leg and arm issues.....

Since she has the bladder issues I wondered if TCS and EDS were ruled out.

[Viva001]

Hi, I'm so sorry to read of your daughter's struggles, especially in light of her passion & talent for skating.

I am 8 mo. PFD & also have some pain in my arms & hands.  We (NS & I) know that there is inoperable narrowing of the foramina, and we suspect that there may be nerve compression in my elbows.  (at one point, I couldn't even brush my hair).

I am a big fan of acupuncture, have been for years, & my NS even recommended it for my elbow "condition"-- which he said is referring pain to my hands.

As for drugs, the SSRIs & others can do wonders, but also consider the anti-epileptics, like gabapentin.  (I would advise to be suspect of one-size-fits-all dosages however).

Blessings to your daughter for her courage, and to you too for being such a great mom!

[amanda2626]

I know this is an older post, but I have been searching chiari and muscle weakness/pain and this came up.  I have a 15 year old daughter who is 3 years post-op chiari decompression, that is a competitive roller skater who is starting to experience major pain and weakness, especially in her arms and hands.  She has problems holding her arms out when skating and some of her dresses have had to have the clasps redone to magnetic clasps as her hands would get to cramped and painful trying to clip here dresses that she would be screaming in pain and actaully get to the point where she'd take the dress off and put on different one.  She'd tell me how trying to get the dress hooked her hands would cramp up the the pain would shoot up the lower part of her arms and it would hurt so bad.  For someone my age, I can see that, but for a 15 year old, I felt horrible thinking she was dealing with that kind of pain.  We had an ANA blood test to rule out anything else and are awaiting those results, but in finding this community and your comments, I am thinking that it is chiari related.  Has anyone tried Lyrica for this and if so, has it helped?  Skating is this girl's passion and I would hate to see chiari kill her dreams of making it to worlds one day.  She skates an average of 4-5 hours a day and on weekends upwards of 8 hours and has been doing this for years.  The effects chiari has had on my daughter have been nothing short of mind boggling because honestly if it's an effect you can have/get, she seems to over time be getting them, even the incontinence which she takes meds for (she has type II by the way - w/spina bifia occulta).  The rounds of PT she's been through have not helped either.  

[*Stormy*]

I totally agree....a lot of our recovery depends on what research we do. It took me a year to get where I am now but I am finally where I should be. I hope the same happens for you

Good luck
Carolyn

[yablondskie]

Carolyn - Thank you for that post.  It sounds all to familiar.  I will definitely look into neuro rehab. I also have the loose, flexible joint problem.   I agree that there is no rehab help after surgery.  But then I have found it is very hard to get help for Chiari anyway - in any shape or form.  It's really crazy.  Thank goodness there is the internet and the web.  Otherwise most of us would still be suffering and being told we are crazy, there is nothing wrong with us!  

Thanks again for the info.

[*Stormy*]

Hello

Yes, I definitely have problems with that too. For me, the muscle weakness and degeneration happened before the surgery. However, I was left to progress (due to misdiagnosis) for too long. My gait was severely affected, whether it was due to muscle weakness or cerebellum damage or both.

After surgery, I found that as soon as I started to get back to normal life, the pain really started up again. My muscles would inflame and get sore and all my joints ached and were very flexible. I couldn't understand why this was happening and I set out on a long journey to figure out why. The thing is that no one really seemed to know what to do with me, so I was sent from specialist to specialist. Finally after a year of this, I ended up in an outpatient neuro-rehab and it was the best thing I have ever done!! Then know how to deal with Neuro problems that have affected your muscle to nerve function. I am seeing a great deal of success with this. They work slow but try and build up your muscle and with me, are trying to re-program my brain to walk properly. If you are having problems like me I really encourage you to see out a program like I am in, with professionals that understand what is happening.

I still don't have the answer to why the muscle weakness is continuing after surgery...but one thing I have realized is...to have a higher rate of success after surgery, us Chiarians have to rehabilitate!! Unfortunately, there is little or no care for us after surgery which I just don't understand. So we have to do it for ourselves unfortunately. Really, I don't have the words to relate how successful entering a rehab program has been for me!!

Good luck
Carolyn

[redkim]

I figure skate and I am glad I do because it helps with the muscles, but yes, I do notice my legs are weaker.  Yesterday and Sunday were bad leg days.  I could barely walk and my legs got so tired after a few minutes.  I feel like it takes me longer to get going and I struggle.  Even ice skating a few weeks ago I fell because my legs were so weak and tired, I tripped my self.  I still skated for an hour, and had fun.  It just takes me a long time to get my legs going.  I have to walk very slow.

Add that I have hip issues I just learned about and will need surgery for and I don't think this is helping, lol.  

My hip surgery will be in 2-3 months to remove part of my socket bone and part of my femoral head bone.  I am worried what this will do to my strength.  


My arm is already very bad and weak, I have had so many tests done, all normal.  I did start PT and they said my muscles are weak...

[selmaS]

There r many drs out there that feel chairi will not pose ne symptoms...we all know that not to be true.....

I was dx'd with tarsel tunnel and told I also had  carpel tunnel.....I had an EMG test that showed it was not tarsel tunnel and in fact chiari related issues.......

Have u had a EMG test?

"selma"

[ff105wife]

Weakness in my hands and arms is what started me on this crazy journey of being dx with chiari. Of course, NL and NS both say chiari wouldn't cause this-said carpel tunnel. Also have major pains in my wrists. Sometimes ache, other times stabbing and burning pains. I think there are way too many of us on here that have experienced muscle weakness for it not to be related.

[sanukilady]

I'm pre-op with Meniere's and EDS.  I am steadily losing weight, but muscle tone is being maintained (I walk a lot and go to PT).  The level of strength and endurance depends on whether it's a good day or bad day.  On good days, I am close to normal, but on bad days, I can barely open an open plastic water bottle or walk up stairs.  I usually have a headache anyway, so where would I be going (rhetorical)?  I am always numb on some part of my body.  My NS prescribed PT to prepare for surgery--just strengthening of neck and spine muscles to reduce flexibility, so on those good days, I'm really good, just not as flexible as I once was.

[cfinniss]

i have problems trying to do anything where my arms have to be over my head, just cannot do it my arms have no strength trying to do anything above my head and i cannot tilt my head back - that kills me.  i used to zoom up stairs all the time with no problem at all even though i am 55 yrs old i was still very active, hiking, skiing, walking, going to the gym a few times a week, playing baseball with grandkids etc.  ever since my first decompression i have a very hard time doing steps.  have to stop to take breaks.  some days worse  than others.  my upper thigh muscles just do not have the strength, they burn horribly if i do not stop to take breaks...doctors cannot figure it out...also if i walk to far my lower legs and feet tingle so bad it is very painful or go numb...

[niki3350]

I agree Selma this is a good thread.

My muscle weakness drives me crazy, I find that simple task like dying your hair is difficult, its crazy I have to take short breaks as my arms just wont hold up.

When walking my dog my legs get weaker and weaker, while shopping flights of stairs I used to whizz up im now having to rest half way as my legs just cant go on.

Recently I have also noticed that my clothes are fitting differently, but I am maintaing my weight give or take about 3lbs but my trousers are getting looser and my underwear now hangs off my bottom?????

I question  it because im not the active person I used to be or is it all related to chiari???

I also feel my gait is changing my right foot now turns outwards noticibly and I seem to have taken on a funny walk, not that noticable to others but definatly changing.

Looking forward to responses on this thread.

Niki : )

[selmaS]

Hi...a few yrs b4 I got my chiari dx I found that I was losing upper body strength even tho I was active...so I would have to say yes.

I am post op going on 2 yrs, and I still have issues with lifting....if it is too low, I can not do it, and if it is over a certain weight...forget it....this makes cooking difficult as it is harder when the item is hot.

I am afraid I will drop it on myself....or fall onto it....so I try not to bake things that r heavy unless I have my DH handy to take it out of the oven...

The aftercare  of chiari surgery is non existent....but my PCP wants me to see a local NL as I was also dx with a few other related issues like ehlers-danlos...and regular exercises r not always the best..so I hope to find the best way to add strength as well as toning my muscles as I do not want to become a raisin....

So., is it that I am older...nah, I was younger when this all began...could it be chiari and EDS...yes it could.....could it just be chiari...not sure, as I have more than just chiari so I have nothing to compare to.


Good thread : )

"selma"