Random questions about chiari

[deadmemory]

I was diagnosed with Chiari Malformation. However, this was discovered back in 2010 when I was admitted as an inpatient at my local hospital. I was never informed of having Chiari until this year. I have been going through so much pain, and feel like I am getting worse. I am scheduled to have a CINE MRI on the 23rd (I had to be so persistent to even get this test) Hopefully that can bring some light as to the terrible pressure in the back of my head and neck. I have had MRIs and CT scans thus far, but what are some other tests I can request? I have been experiencing insomnia the past few weeks and I am exhausted. I can't get comfortable when I try to sleep regardless of how many pillows I use. I recently learned that I have degenerative disc disease in my cervical spine which is probably contributing to the neck pain, and I refuse physical therapy or chiropractor. I also have lordosis of my mid spine and makes laying down painful as well. I know that there are other issues contributing to my chiari malformation to make things more painful and harder to diagnose. My NS wants to wait to do surgery until he rules out other possible problems. In the mean time I have been seeing a Neurologist. She is great, and seems to be doing everything she can for me. She has prescribed Lyrica for me for some of the nerve pain. Has anyone else tried this? Has it worked for you? I have been losing my peripheral vision on and off, and it is almost impossible for me to move my head without excruciating pain. I had an LP performed quite recently and as a result, I have a CSF leak. Can LP's make chiari symptoms worse? I read that on a web-site and didn't know whether to dismiss it or not. My CSF pressure is very low and my NL thinks it could be due to a blockage.. I guess that is what the CINE MRI will show. I know that we all get the run around and I feel for everyone who has to deal with this. I recently discovered I have a sub centimeter sized tumor on my pituitary gland and wonder if this has any pertinence to chiari? I obtained all of my MRI slides and the radiologist dictations on each MRI. I have contacted the Chiari center in Wisconsin. I got an email back almost right away. If my doctors don't do anything soon, I will most likely send copies of the MRI and reports to Wisconsin. If they feel that I would be eligible to go to their facility, I don't know how I would finance the trip. I live in Washington State so simply driving would probably be out of the question. I know there are several random questions, but any input would be appreciated!

Thanks and God bless,
Krystal  

[deadmemory]

Thank you so much for the input. Isn't Keppra an anti-seizure med? I too took Lyrica years ago before I was even diagnosed with Chiari. My doctor back then though I had Fibermyalgia (spelling?) Thank you for the prayers as I need all the prayers I can get.:)

[linnielou232]

The reply for Lyrica is Yes I have been on it and it did seem to help with my bursistis and back aches, but didn't find it help at all with the headaches, but when you are constantly in pain it consumes us.  My insurance wouldn't cover Lyrica which I took for a yr with the help of samples from the doctor's, but I just went to the pain clinic (1st time a month ago) and they changed me from Lyrica to Keppra and she just raised it yet again today to 3 times a day instead of twice daily.  At least my insurance will cover the Keppra.  It hasn't fully gotten into my system yet, but waiting patiently for result's.  I hope this help's for you.  Your in my prayer's on the 23rd in hope's the test will result to some answer's for you.