Chiari symptoms

[chiarilmt]

I am new here and am so thankful I found this site.  I am waiting for a referral to Cleveland Clinic in order to have a CINE MRI.  I was diagnosed in 05 and have had numerous symptoms but the last couple months it has escalated. I have been having more pain and burning in my legs and down my back. In walking it feels like my legs are "heavy"  dead weight.  Then today for the first time as I was getting up from a chair my left leg cramped so bad I went to the floor, then my right thigh started.  In the hour since then, as I am typing this they are burning like crazy and now it has started again, the burn in my arms and down my back.  Not sure if this is more of a sign of a possible syrinx or just chiari  getting worse.  I have been able to work two job during this time, however it is getting very hard as of late with my legs especially since I stand all day.  Any suggestions or info. would be appreciated.

[pamk5]

Hello and welcome to our little family.  Sorry that you had to seek us out.  When you were diagnosed 5 years ago did you have any tests done then or surgery?  Have you been being monitored?  When is the last time (if ever) you have had an MRI of your spine?  Lots of docs just want to check Cspine but it needs to be Thoracic and Lumbar since a syrinx can form there as well.  I dont have a syrinx but from what I have read the numbness and pain is "cape like" over your arms and shoulders if it is in the Cspine.  So it sounds like a good possibility.  I would definitely get the doc to order that MRI of your spine to be sure. Have you had an accident since the diagnosis?  

My legs get really heavy and painful too but I have a herniated disc at L4-5.  I hope you get your referral soon.  

Again, welcome!

Pam

[chiarilmt]

The rest of the story....my diagnosis was through a free MRI (not so free) from there I spent hours on the PC researching.  In 06 I did see a neurosurgeon (chiari specialist) at Cleveland Clinic.  He was in the room 5 minutes and basically said  yes you have it but it's not bad and it won't get any worse because my tonsils were rounded not elongated. Then told me to see a rheumatologist and he left :(   I also have a bulging disc C5-6 and a small lumbar one.

  Since 06 I have managed my symptoms,  balance issues, tinnitus in left ear(annoying and loud), head feeling like it is in a vice grip, fogginess, memory issues, numbness, tingking  in face,sleep problems and some gag reflex issues.  Now the numbness in extremities have gotten worse, burning in hands, feet, sometimes jaw area and my sleep issues have increased.  My leg weakness is to the point where they don't seem to want to hold me up and they have buckled, and also leg spasms, other muscle twitching, heaviness and pain.  Also other issues........

I have been to    a local neurosurgeon two years ago and got nowhere.  Recently to my GP numerous times but she never thought chiari was the problem,  but now does.  So now the journey getting into CC.

One of my jobs is as a massage therapist, which is getting harder to do.  Too much straining for my condition.  I am beginning to see the writing on the wall as to how long I can keep this up.  My other job is a cashier  and even that has been difficult.  One of my other biggest frustration is I don't carry enough insurance to cover all this and am worried how much they will do or not do for me because I may never be able to pay the bills if it leads to surgery.

Sorry for writing a book here but it helps to finally be able to share the frustrations that all of us here deal with.  Thank you for your responses and good wishes.  I wish you all well too.  Hopefully I will be able to get back to Cleveland Clinic and get some answers.  I wish you all a great day and success in your endeavors for help too.