Post decompression Chiari Problems

I am primarily interested in a response by the M.D.

I am a 41 year old, athletic female, two years post decompression surgery for a significant Chiari I Malformation.  For the first four months after the 2 decompression surgeries I underwent (I tore my graft 4 days after being released from the hospital for the first surgery and needed a 2nd surgery and  lumbar drain for 7 days) I felt better with no headaches for the first time since I can remember (I started with severe classic migraines at age 11, aura-the works-but limited to about 3-4 times per year).   Prior to my surgery in 2005 I was experiencing a very different headache just about every day- tremendous pressure and cramping feeling in the occipital region, tremors, weakness, difficulty swallowing, other neurologic symptoms, deafness in my left ear and a host of other fun things- all made worse by exercise. Five months after my surgeries the headaches returned- very similar to what I had experinced before the surgery- severe daily headaches, seemingly sensitive to and triggered by changes in barometric pressure (I can predict a hurricane better than Jim Cantore), rainy days and most disturbingly- by exercise. I cannot exercise without triggering a debilitating occipital headache that requires high doses of pain medicine (we stopped the meds for a while to see if they were rebound headaches from the meds- they were not). Even in the absence of a headache I have constant pressure feelings behind my left eye (my eye feels swollen and bruised, sometimes the lid drops) and at the base of my skull. Coughing and bending over results in an immediate increase in the pressure feeling and pain in my head. The neurologist looked at my eyes and ruled out papilledema. Additionally I have had several MRI's (brain and cervical series), one indicating a herniated disk at C-5/C-6 which the doctor fused, an MRA and  EEG's but my MRI's including a recent CINE MRI show my CSF fluid is flowing properly. I am wondering if I should press for a lumbar puncture to find out what my actual CSF pressure level is? Some of the scientific research I have read indicates (peer-review journal) that there can still be an increase in CSF pressure not indicated on MRI and only detectable through a lumbar puncture. I am a research scientist and so I have tried to find out what could be causing the headaches.  My doctors seem less interested in the cause than they are in putting me on all different types of drugs- they pass them out like candy! My neurologists both say they are migraines but both admit they are limited in their expertise on Chiari. How should I inerpret this. One is a top neurologist in the state, the other is at the Mayo Clinic in Jacksonville. This worries me because I am afraid of being catagorized as a migraine suffered again and not getting the help I need if these are actually related to the Chairi. My neurosurgeon sent me to the neurologist when the pain came back. The neurologists keep prescribing a host of drugs used for seizures, depression, and other disorders (I do not have any of these problems), because they all supposedly help with migraines. Recently just three days on low dose TOPOMAX (topamax) made me deaf in my left ear, nauseous within an hour of the first dose, and made me so drowsy I'd sleep for 14 hours a night, and I feel stupid or stoned when on it.  I was suppose to eventually increase the dose by 4X the initial starting dose! They do not seem to help me and I am hesistant to keep taking so many different meds.  The side effects are often debilitating and the whole reason I put myself through the surgery was to get my life back, not spend it in a drug- induced stupor. I am at a loss as to where to turn now. The neurologists do not seem to be listening to what I am telling them. I know what I am feeling and I am getting very frustrated trying to get the right help.   When I first tore my graft it took the doctors 4 days to listen to me and I was correct that I was leaking. When I leaked CSF after a myelogram it took 4 days for the doctors to listen and administer a blood patch. When I told them I was having strange headaches, it took almost three decades to get someone to look a little further and find the Chiari.  I do not want it to take another 30 years to get the help I am asking for. How do I get them to exhaust all possibilities first before dumping me into the most convenient diagnosis? Are there other tests I should ask about to rule out possible increase in CSF pressure? Are there any neurologists who specialize in this?  My fears are not without some basis- for 8 years I had a host of doctors tell me that I had a host of different illnesses- I did not fit the "profile" for any. In the end, a few blood tess confirmed that I had Systemic Lupus- a profile I fit to a T, and with some changes in my life I have it under control with little or no drugs. I want the same for the headaches. If in the end they are migraines I will entertain the meds they are offering, but I want to make sure they are no overlooking a more serious problem.  

[stillwell1]

Hello again,

When writing to you about the extreme similarities of your case to my wife's, I had not made a profile or registered.  After doing so, I did not see my posting.
Did you receive my first posting?
Have you had any luck improving your condition?

Thank you,
Shawn

[Carrie1978]

My daughter was recently diagnosed and I have done extensive research on neurosurgeons that actually specialize in Chiari to make sure the right doctor takes care of her. I have gotten 5 that seem great. We have not made our decision yet but maybe these can help...(some may say pediatrics but many treat adults with Chiari too)
Dr. Weingart and Dr. Jallo at Johns Hopkins in MD
Dr. Myseros and Dr. Keating in DC
Dr. Kerry Crone in Cincinatti
Dr. R. Michael Scott in Boston
Dr. Frim in Chicago

Hope this helps...get more opinions!

[jay0728]

I am a 34 year old female. I had surgery in November 2006, after 5-6 years of headaches, 2 negative MRI's, and 18 months of excruciating pain my chiari was found. I am again experiencing headaches, weakness, numbness on my right side, blurred vision, pain and burning in between the shoulder blades and neck, occasionally I have difficulty swallowing and unsteadiness. My Neurosurgeon told me I would never be 100% again but I don't even feel close. I had the surgery to rid myself of this nightmare, it did help to some exent but I don't fell like myself anymore or like a 34 year old mother of three either..Help..What do  you think?

[Kimmerz22]

I had surgery in 99. each year after that I have been having many strange and unexplained symptoms.  It was not until recenly that I found out that most of what I have been experiencing was from the surgery. The only thing that changed was that my extreme headachs have stoped. I too do not feel like a normal mother of 2 at the age of 37.  If they would have told me of all these symptoms, I would have thought twice about having kids. I dont feel like Im giving them the mother they deserve.

[selmaS]

Hi...many of us that had the chiari surgery agree the post op care is non existent....may I ask when ur last MRI was?

I invite u to join us in the chiari forum-

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

"selma"