Diagnosed in July... miserable with symptoms and no relief.

[Element82]

Does anyone know if debilitating middle back pain is a symptom of Chiari type 1? I dont have a day that goes by that is pain free.

Also... I seem to have some swelling on the back of my head (near where the Chiari would  be located) on the right side only.. has anyone else had this problem?

And finally... the only thing that the doctors find that works for my headaches is a med called Amatryptoline, its my understanding its an anti-depressant, as well as dialaudid for break through pain. Is there relief form the headaches without taking such addictive meds?.

[selmaS]

  Hi,,.I understand ur frustration with the wait....and them ruling out other possible conditions, lymes, lupus, even MS....I had them all ruled out too....

The ER will only Band aid the situation u r in,....they do not DX the only bit of info I got from my NS was that most NS's that specialize in Chiari do work in the clinics and ER so if they are on call u may possibly get to see one and get the proper care....other wise it can be a crap shoot.

Wish I had more info to offer u at this point....

[Element82]

I have seen my mothers chiari specialist at the Tuffs in boston.. i drove 4 hrs.  to get there so i could see him directly.. rather than wait for an appt. Everyone wants so rule out anything else right now... and i have so many appts, with neurologists and neurosurgens set up... but the wait is rediculous and i am not sure how much longer i can deal with my back pain... im ready to just go back to the er.. but i know that would just be a waist of my time.. i think.

[selmaS]

  Hi...goodness u do have a lot going on....and I agree it is very frustrating.


As for the CSF leak not all will be positional HA's or pain as a result. some are a small enuff of a leak that ur body actually adjusts so changing position does not affect u....

Have u been to a Chiari specialist yet?....I know it can be hard to know where to locate one, but with ur Mom having Chiari as well I thought mayb she has one u could see?...if not we do have a list of Drs other members here have been to and liked, the list is not a referral nor an endorsement, just a tool for u to use to research Drs...suggesting u see a few to compare and see which u feel most comfortable with.

Many of ur symptoms are ones I can relate to, I am 4.5 yrs post op and am doing much better but I do have related conditions that I still have pain and symptoms from, but so much better then I was 5 yrs ago.

http://www.medhelp.org/health_pages/list?cid=186

[Element82]

Ill go over my diagnosis with you. Ok, well so far I have a 10mm  Chiari with pointed tonsils and obstruction. Also I have a 6th nerve polsey. They found a CFS leak in my cervical vertebrae(and said it was nothing). I have degenetive arthritis on my Thorasic vertebrae, and compressed discs on my lumbar vertebrae. retnopothy and I know that that is related to the diabetes. All of these symptoms happened when I started to have daily headaches and went to the er. they performed a catscan, seen no Chiari at that point (i think because it was done without contrast) and then performed a lumbar spinal fluid test. immediately after the test my back hurt and my headaches got unbearably bad.. and they were not positional. I have numbness and tingling in my hands and legs... gabaphenton does no justice for this. and a weird sensation i get a lot is my chest in front of my middle back gets numb and tingling... and really hurts as a result... it happens on its own but leaning forward makes it much much worse. my 6th nerve polsey I know can be diabetes related.. but this happened while i was at the hospital for the second time.. and is too much of a coincidence to be diabetes related. And believe me this is one of the worst things because i am seeing double and it is just annoying an bothersome. My balance is way off, and my head hurts on a daily basis form the back of my head to the back of my eyes. my back is in constant pain, I have sleep apnia, not sure if that's spelled right. and its a struggle to get answers or solutions from dr.'s because the diabetes is a variable... and I know its not that. I'm really frustrated and tired of the pain.  

[selmaS]

Hi and welcome to the Chiari forum.

I did not find relief with ne pain meds even those stronger ones b4 I had surgery.....

U will want to have more testing to see if u have a CSF obstruction and since u have diabetes, u also want to know that other related conditions to Chiari u may have as well....so many of us have a few different things going on that can affect how we feel and heal should we have surgery.

And many of the related conditions can cause the same symptoms, so u may not know which symptoms are from which condition.

Surgery, is not a fix or a cure, it is a means to slow progression and restore CSF flow.

Mid back pain may of us do have it, not all, I did and much of mine was also low back pain....I also have tethered cord which can affect my back as well as IBS....so as I said it can be related.

The swelling could be u have a CSF obstruction that is finding other routes....not sure...did they rule out a syrinx?