leg weakness

[bbisweary]

Hi Everyone.  I was wondering if it is common to have severe leg weakness with CM?  I have had leg stifnness, ie, scooting, dragging a leg, etc. off and on for several years now.  But, for the last few months I have been having this weakness in my legs that causes my whole body to feel weak.  I have a small syrinx that has developed since my appt. w/ Dr. Di in April, could that cause it?  I'm really hoping I don't have something else going on.

Thanks,

Becky

[selmaS]

  Yes Heather...even a sneeze could trigger symptoms to worsen....Chiari symptoms cycle and change so it is hard to see or know we have symptoms of one condition or even see them as symptoms since we have always had them, we consider them "normal" ways to feel....but once we learn more we can see I have always had these and they are not "normal".

I had drop attacks as a child and never taken to a Dr....but my parents were brought up to only go for major things and they didn't know what it was, just thought I  passed out....but I know I always had symptoms and can see all the way back to grade school....but was not DX'd until I was 48.

[Heather2414]

If I could had a Chiari from birth could a fall bring on the symptoms?? When I was a young child I fell and broke my ankle it was bad enough for surgery they do surgery don't remember witch ankle it was I don't have a scar,my mom told me the Dr supposly did an xray on my back to make sure I didn't hurt it when I fell..Could be a lie my mother wasn't a really good mom growing up sorry but its the truth not being mean but here is the big thing,before I broke my ankle me and my Grandfather walked 4 blocks 3-4 times a week maybe more can't remember and it wasn't all leveled either..After the ankle surgery witch yes I was in a ankle cast and had to use a wheel chair at school my balance was bad enough I couldn't use crutches but after it healed and it healed great the Dr told me I couldn't even walk up the street my legs felt so weak it wasn't my ankle it was my legs they felt weak as I can remember just like they do now..

[selmaS]

  Regardless of where you have testing request they send you the reports too, many times I got them b4 my Dr did and it was easier to take them with me and him interpret them then to continue to wait.....

Patience is something we learn with all the waiting they make us do.

[Heather2414]

That's I will start researching for 1 drs haven't called me today yet about the results but they might not have em yet said 24-48 hrs and I got it out of state,and it was Friday so..

[selmaS]

  Keep a journal of your symptoms and if they change call your DR.....BUT I do feel you should be seen or your MRI's should by a true Chiari specialist...only they will be able to answer your questions.

[Heather2414]

Thank You,I'm going to try to wait til Monday before I look into it to much and see what my family doctor says hopefully they or the person that did my MRI know what there looking at not saying you don't I don't mean that at all promise,I just wish I know now if its bad,bad bad,or nothing to worry about witch right now I can't stop thinking about it but gonna have to try...Thank you so much have a good weekend!!

[selmaS]

  The list of Drs was compiled by the members here of Drs they have been to, treated by and liked....it is as I said not a referral nor an endorsement, it is only meant to be a tool to help you get started with research.

We have many threads and links to info...so just let me know what you may need..we may have a link to help.

[Heather2414]

Oh great,thank you I didn't know this site had any doctor's for 1 lol I thought it was just a place where you can find people have the same problems with what you have and they have the same thing and are talking about it lol...

[selmaS]

  Have you looked at the list of Drs we have on here? I can not remember if there is one in or near Indiana....but I do not have one near me either, I went out of state to get to a true Chiari specialist and would do it again if I ever needed to.

I have said that line myself many times....take a look at our list and research the Drs...many of them will review your MRI's b4 you make an appointment.

[Heather2414]

Wow,that doesn't sound good lol have you helped anyone from Indiana?? Do you know of any Dr. in Indiana??? I will search for one but I just wanted to ask you since you been such a great help I really appreciate your help in all this...As you can probably guess I haven't had to much good luck with drs,lol I always said if I didn't have bad luck I wouldn't have any luck at all lol..Thanks Again and God Bless!!!

[selmaS]

  I would suggest you have a true Chiari specialist look at these images....to me an untrained person it looks like your brain stem is bent....as well as the herniation of the cerebral tonsils.....

With the brain stem being affected that too in addition to Chiari could be part of your symptoms and issues...

Since you had surgery on your back ,most Drs may refuse to see you let alone treat you as you no longer have a "virgin" back/spine....but a true Chiari specialist will still offer to help.....

[Heather2414]

Yes the surgery was back surgery but I can't say much about the dr other than now its looking really bad that I didn't need the surgery that I now have rods and a basket so I'm worried if this could had started the whole foot drop issue and they blamed it on the back and I didn't need it from that doctor...Even if the Chiari is bad enough now wise or they find out that the foot drop could had came from the Chiari it might be to late with me having disc's removed and being cut....

[Heather2414]

It's been fixed.

[selmaS]

  You may have a security setting to friends or for yourself to see as I can not see them...I can tell you posted 6 pic....but not one is visible.

[Heather2414]

There up and there my own MRI,found out today how to do it this is the brand new mri I had done today...

[selmaS]

  You can post a picture on your profile page and let me know it is there and I will look at it to see if it is something I am familiar with.....

So the surgery was a back surgery not Chiari decompression surgery.....on the same page with you now....

Find a true Chiari specialist....if you have nerve damage from that surgery, there is no way to correct it...

Yes I have seen the decompression surgery help those with foot drop too....the biggest problem is you were dealing with Drs that were not well informed or experienced with Chiari....and giving you info that is not correct either....Age has nothing to do with Chiari and it's symptoms as there are children having surgery....so right off you know those Drs were not informed.

Post your pic and let me know when it is up.

[Heather2414]

Is there a way I can send you a picture???The website I was talking to you about that was causing the foot drop and they said it was the Chiari I have a question about the picture there showing...

[Heather2414]

They saw the Chiari before the back problem maybe 2 to 3 years before they found my back,they told me the Chiari wasn't nothing to worry about til I got in my 30-40s or if I started to get really bad headaches and part of my face going numb.The doctor we got for my back dr scared us straight away with the back issue we didn't even ask him about the Chiari..But they are a few problems with that dr. that there is a good chance I didn't need the surgery that they put basket and rods in my back witch was a fusion..I'm just wondering if the nerve damage and the foot drop could be all from the Chiari since now its looking like I didn't need the fusion they did,not many drs know about the Chiari where I live and the ones that know a little about them say the Chiari can't cause the foot drop..But I have a website stating from childrens hospital that 2 kids I believe had an on set of foot drop and also had the Chiari and they did surgery and the foot drop got better I guess there isn't much on it,I'm sure now its too late for my foot drop to get better and with the fusion I might not needed with the drs cutting into nerves and such even if they say now the Chiari is bad I'm thinking now its to late for the foot drop to get better its probably been 10 years since it started,maybe 8 years what do you think?? Could it get better?? If its the Chiari??

[selmaS]

  It is very possible the back issues and the nerve damage was Chiari related....and if you had a CSF obstruction it is a good thing you had surgery as it will restore CSF flow and slow progression of a syrinx if one was present.

Surgery is no guarantee all symptoms will go away...it only is done to prevent symptoms from worsening and to restore flow of the CSF....

Did your Drs rule out related conditions?

[Heather2414]

I have nerve damage in both legs and feet,they have started me on lyrica 75 mg 3 x day.Since they have started me on it my legs feel good off and on but could this off and on be also from the chiari I don't know the level or anything I just having bad headaches they come and go though but mine are bad..I have have them seems straight for a month and then they could go away for 3 mos but when they come back they could be 5 x worse,I'm getting it rechecked on March 27th to see if the headaches are from the chiari... Now I'm wondering if the nerve damage and foot drop wasn't from the chiari instead of the back problem witch seems like now I got the surgery and didn't need it...

[*Stormy*]

Just wanted to add...muscles twitches and calve spasming were also another major symptom of mine. My calves were permanently toned...Also my feet would curl and cramp up everytime I relaxed and many times I would end up walking on my big toe because of the cramping in my foot.

Carolyn

[bbisweary]

I did have another MRI in June after a car wreck that gave me whiplash. (Like I needed that!) That is when the radiologist here in my small town reported a syrinx at C7.  I found it almost amusing that she reported the syrinx, but always give the CM an honorable mention only (she has read my rad reports several times since 2008, and doesn't measure the CM). Anyway, the leg weakness also comes with muscle spasms in my calves. Thanks for the info, I just wanted to make sure nothing else was going on. Did either of you get any better after the surgery?

[*Stormy*]

YES!!! It definitely can be caused by CM...I had and have a lot of leg involvement and in my case no syrinx was found!! For me my symptoms started with swallowing issues, neck pain, then arm weakness and going to my dr got no result (so it was left to get worse). My ankle started stiffening off and on, along with this wobbly feeling that would come and go in my legs. One day it came back and progressed rapidly, starting with the feeling of my leg dragging, to my left leg stiffening making me limp, my legs got extremely weak to the point it was hard to walk up a hill or stairs...and then very quickly my right leg started to follow too. Post op I still have a lot of walking issues causing pain and an unstable gait a lot due to being left for so long and the damage that occured....so don't ignore this!!!

If you have any other questions about it, feel free to ask!
Carolyn

[rod44]

Hi Becky. I agree with selma, it could be due to the CM, SM or a combination of the twoI have this problem, in fact it started in 1994 but in the past few years has gotten progressively  worse especially from the knee down. I have CM  and a Syrinx C7 > T3

Ray