Mayo Clinic in MN?

Question

Hi Guys!
For those of you who don't know remember me.  I had chiari surgery 11/24 and have had a roller coaster recovery.  Ups and downs!
Went to dr today for something I thought had NOTHING to do with Chiari and was surprised to find out it's from chiari.  I've been having issues with my legs and them being hypersensitive.  It hurts a whole lot of someone grabs my leg or i itch my leg.

My dr is concerned about paralysis and wants me to go to Mayo Clinic in Minnesota.  Also after physical exam she said I have to have a spinal mri.

Anyone have any info if Mayo is good?  Anyone have hypersensitivity in legs?

shanmomof3 · Answer

Yeah jen, i agree with selma. You need to have the spinal mri! Your leg problem could be from the chiari or it could be from a syrinx or TC. I have cervical stenosis as well and that is also contributing to some of my symptoms.

selmaS · Answer

Jen...if u have a syrinx ...it can still be affecting u ...so can tethered cord and u can not see those with a cervical MRI...TC is found in the lumbar and a syrinx can be found in the cervical spine but can also be found in both the lumbar and thoracic.

So it can be helpful to help u feel better at this point...my drs did do a full spinal prior to surgery to see if I had these, which I do have TC...and it is causing me to continue to have HA's and many chiari symptoms...it needs to be addressed or the TC will pull down the tonsils back to where they were b4 surgery and then I could need a redo.

I pray u do not have either of these, but best to rule them out.

"selma"

jorlex137 · Answer

Yeah I never had the spinal mri.  But wondering if I already had the surgery what is the point about knowing about the spine at this point.  
I can see looking at spine to decide chiari surgery but since  that is done with, what can they do for the other if it's there.

selmaS · Answer

Hi Jen...I wouldn't blow this off if u never had one.U will want to know if u have a syrinx or tethered cord which could be a reason u still have HA's and leg issues.

The only way I would say this was un needed would be if u already had one and knew for sure u didn't have a syrinx or TC....or something else.....

Let us know what u end up doing....
"selma"

jorlex137 · Answer

So can I blow off this spinal mri? I really don't want to get that bill.  I do not want un-needed tests!

shanmomof3 · Answer

Hey jen! I have hypersensitive legs too! Thats why i was dx with fibro, but dr. Heffez told me it was due to chiari and not fibro because i dont have the other tender points. Hope that helps! Blessings ~ Shannon

rod44 · Answer

Hi Jen, I imagine anything involving that area of the brain & spine can lead to leg problems.

I have numbness and pins & needles along with hypersensitivity in my feet and legs witch my NS feels is due to a Syrinx. 

Ray

jorlex137 · Answer

No I never had a spinal mri, so I guess that is what they want to know about.  My dr feels my surgery was unsuccessful, since all the headaches came back and the legs either being hypersensitive or going numb.
I'll keep you all posted!

Is hypersensitive legs common with this?

selmaS · Answer

Hi Jen...so sorry u r still having issues....I have not heard that the MAYO was a good place for chiari....so if u r having chiari related issues u may want to look for a NL in ur area.....to find a PT that knows about it as well.

Did u have a full spine MRI b4?...was a syrinx and TC ruled out?...sorry my memory is not so good...lol....

I pray u find the right team to help 
"selma"

anuragsrivastava · Answer

Thank you for your question. Generally, rehabilitation is the only effective way to help you to regain function in better way and prevent from such recurring symptoms. If rehabilitation program is appropriately instituted, most of the chiari patients after surgery can regain maximum functions with appropriate therapy, training and support services. For coordinated rehabilitation program a team of a neurologist, a physiotherapist, an occupational therapist and a nutritionist work together to help you in your recovery. Therefore, I would suggest following the suggestion made by them and recovery will be although slow but most of the functions may be restored. Hope this helps.

*Stormy* · Answer

Wow..I'm sorry to hear that...but I am glad to hear that you are getting answers!! I have heard good and bad about Mayo but I don't have any personal experience with them.

I do have hypersensitive legs...for me it was something that started long before surgery and hasn't got any better... I have my post op MRI in a couple of months...I get really bad pain just from a poke sometimes and it really hurts to rub my upper thighs.. My PT thought this was due to my muscle weakness, that the muscles hurt due to too much strain. 

I really hope you figure this out soon!
Carolyn