Hi my name is Barb I live in WI. I was diagnosed in 1984, and was always told that it was “vo big deal, that’s just how I was made”. I’ve always had some symptoms but they really escalated after a head injury in 2001. I was working at the time so my work comp. dr.'s always said that they were not related. I was called a faker, drug seeker and told that I needed a psyc eval. When I severed ties with work I finally was referred to a ns for decompression surgery in 2006. Befor surgery I was wheelchair bound. After I made a dramatic recovery, I even returned to work.i was told by my ns that I was “cured” and would not need any follow up care.
I moved to WI in 2008 and fell down a flight of stairs at my place of employment. Since then I was diagnosed with another TBI and post concussive syndrome. My PCP is great and trying to educate himself about chiari. I see a nl for my seizures and Botox inj. For migrains and dystonia.
I have developed severe pain between my shoulder blades, neck pain and increased headaches (not migraines just pressure , like before surgery, it’s getting intolerable. I am unable to sleep. My heart rate increases when I change positions and I get dizzy when I stand or bend over and get pounding in my ears. I have told my PCP and he ordered a ct scan of my head only (I can’t have an MRI because of a spinal cord stimulator that was implanted due to a failed c5-6 disk fusion in 1995). I asked the dr. If we could do a ct of my back and neck to chech the syrinx that I had before but he said that was not necessary the head ct would let us know how things are with the cm. I had asked to be referred to the wi chiari center and he also said that it was not necessary. What should I do? The pain and dizziness is getting so bad I can’t drive.
Thank you in advance for any advise.

Hi Emmaline, the cine MRI would be great, but I can not have one done. I had a spinal cord stimulator implanted inside my spinal column a long time ago so it would paralyze me if I had one.that is the reason I can’t get a referral to the center. It would make it so much easier if I could. The controller was removed but the leads are still lying up against the dure mater and have scarred down to it.
Thank you for responding.

Dear Barb:

I just happened to log on and went under discussions and saw your comment. I had two surgeries this year at the Wisconsin Chiari center. You definitely need to call them! Dr. Heffez is an expert in the field. I live in NY state and actually traveled back and forth several times this year. It was worth the sacrifice of traveling long distance. Dr. Heffez is used to hearing many people's struggles of not being helped and not heard for many years. This time last year I was becoming bedbound. I just had to take a leap of faith. I am very grateful to God first and the many people that had been praying for me this year. I continue to pray for everyone on this site, that they too will find the right help. Please go to the below website. Dr. Heffez comes out on a webout. The information is very helpful. This is what gave me extra courage to move forward.

You can go to my profile and maybe something there may be of help too. God bless you, Mary Lou

Please go for your sake! I’m waiting for them to call as my images were sent last week. Call and explain the mri issue and send your cat scans there.
I was learning to live with the pain in neck and shoulders. Now its creating other issues!
I’m sure they can work with you on this!

Hello, I just want to start by saying I hope you are doing alright. I know sounds a little stupid because obviously your feeling frustrated by your lack of help and I totally get that! I also live in WI, in the Madison area. I just made my first appointment at the WI Chiari Institute. I didn't need a referral I went on their website and printed out there questioner and sent that along with my insurance information. I don't know what insurance you have and if they require a referral or not? But I have had nothing but problems with Dr telling me that my CM was nothing to be concerned about and not to worry. Actually the first NS back in 2005, to discover it, didn't even mention it by name, so it wasn't until this year I was told I had CM! But now I know the name and have been doing my research and obviously seeing a different Dr(s) and can see all these seemingly odd and unrelated symptoms I have been complaining about since I was a child fall under CM. I have been to every type of specialist since I was a baby and not once was this every found. I have even been to Mayo clinic twice supposedly the best place for medical treatment and my CM was completely over looked. Its hard to get a Dr to take Chiari seriously because no one seems to know what it is or what debilitating pain and problems it causes. The best thing I can tell you is to contact the Chiari Institute or just go ahead and send them everything they have listed on the website and if the come back saying you need a referral find a different dr until you find one who is willing to help you get the help you need. I don't know where you live in WI but the UW headache clinic in madison is very helpful and actually have knowledge of CM so that might be a good place for you to check into. Not only that they maybe able to help you control some of the pain and migraines until you can get into the WI Chiari center. I hope things work out for you soon.

Thank you a ll for your suggestions. They are much appreciated. Working on getting seen!

Good to hear from you... I am so very grateful to Dr. Heffez. He is the expert in Chiari malformation.

God bless, Mary Lou....

BarbSalisbury said:

Thank you a ll for your suggestions. They are much appreciated. Working on getting seen!