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[Mom2boys]

I have been Dx’d with Chiari via MRI.

Short version of a 5 year journey:

I have been battling atypical face pain for five years now. It all started with a tooth ache that would come and go. At the beginning I would go six months without tooth pain. I have been Dx’d with everything from Atypical Face Pain, Atypical Trigeminal Neuralgia (TN), Pre TN, Trigeminal Neuropathy etc…. I have no doubts I have neuropathy but the cause is a lucid quest. I have tried several anticonvulsants such as Lyrica, Trileptal, and Tegretol etc… and have noticed very little impact to my pain. I am extremely lucky b/c I have many pain free days or days where I am 1-2 on the pain charts. But boy when I get pain it’s a whammy! I do not have Typical TN where I have the electrical shocks.

Now for the Chiari:

I had my first MRI in April 2005 to help determine the reason for my pain. I had a second MRI last month and they have found the the cerebellum has dropped an astonishing 2+ mm since April 2005. Hence the Chiari Dx.

In looking at symptoms it appears I have very few. I have dizzy spells but honestly thought that was due to the Anticonvulsants I have been taking. I stopped taking them to help my doctors determine my symptoms on June 22dn and am finding I still have dizzy spells and my headaches are intense. They are on my right side at the top of my head, cheek and OH MY NECK!!!! It is all on the right side. My eye, my neck, and sometimes when the pain is at a level 8 I even pain in my right thumb making it hard to hold a pencil. The pain is so bad some times that I can carry my handbag or wear my glasses.

The headache will last for up to 8 hours and usually subside. I do palates and that does not seem to bother it nor does boating or bike riding or walking or “coughing”. I can swallow fine, breath fine etc…

I am 39 years old and am a working mother of two. I have an amazing husband and am truly blessed. I go to a cranial and chief of dentistry, Dr Truelove at the University of Washington both he and the chief neurosurgeon Dr Lousier at UofW do not believe I have TN. I am schedule to see Dr Ellegbogan (Ironically noted in your useful websites up top) at UofW on July 30th. Has anyone seen him before?

Do any of you have severe headaches on just one side of your head and neck? Oh the ache on the top of my head some times is unbearable.

Nice to meet you.

Leslee

Seattle, Washington

[pringlec]

Hi Leslee, prior to my decompression surgery (2003) I too experienced most of my pain on the right side. Even now when I get headaches they are normally on the right side and behind my eyes. I also had pain on the top of my head prior to surgery and severe pain in my neck. Did your first MRI show a herniation of the cerebellum or just the second MRI?

[Jess]

I met Dr. Elenbogen at a conference last summer. From what I have heard, he is wonderful.

I got one side neck pain a lot, but my headaches were on the top of my head and behind my eyes too. I had numbness in my hands and feet. After surgery, my eyes do not hurt anymore and my hands and feet are no longer numb. My headaches/neck pain are very much improved, but still exist.

It was a long journey for me as well. I had tests run for everything and even when they found the Chiari no one wanted to say it was there. Have faith, things will work out.

[LIZARD]

(((((((((((Leslee)))))))))))).

I'm so sorry you're faced with this. :( My son, 13 in 2 weeks, is the one in the house with ACM (no decompression yet), as well as autism, but I have always had hydrocephalus and met Rich Ellenbogen at a hydro conference last year. He's very warm and engaging. :) I don't know how much experience he has with ACM, so I would ask him if I were you, as not all nsgs do.

Good luck!

LIZARD :)

[Mom2boys]

Hi Pringlec,

My second MRI showed it. Dr Leosure also noted on the above Useful websites compared the results of my first where Chiari was never mentioned but my second clearly shows that I have it. Is it causing my pain? Who knows for many live without symptoms.

Was your pain a burning deep pain? I often get pins and needles as well as extreme pain behind my eye. Sometimes it feels like the right eyelid blinks slower than the left although it visually does not. I really do not know what to make of my Dx for Im fearful its just another Dx with no means of ending the pain. Although I believe in my doctors and am extremely lucky to be able to go to some of the top cheif neurosurgeons in the US.

Did your pain come and go? Meaning, did you have days where you didnt have pain but the days you did it was constant and more relentless? Today is a bad pain day for me. My neck, collar bone, top of my head and eye are very very painful. It feels like I have an elephant sitting upon the right side of my head. OUCH!

Are you happy with the results of the decompression? How long had you lived with your symptoms?

Thanks for posting back,

L.

[Mom2boys]

Thank you all for your kind words and encouragement. I am so happy to hear Dr Ellenbrogen is well recieved in the Chiari community. It gives me an extra piece of mind :)

this is honesly the first time where I have heard people having similar symtoms. I have posted on the TN site and never felt like I experienced the same sort of pain. Although I am very greatful the that site as well.

L.

[pringlec]

Leslee,

I suffered with symptoms for eight years. At first it was just moderate headaches but as the years past they progressively got worse and I started getting other symptoms as well. In the two years prior to my dx the pain got really bad. I was so frustrated because no one could tell me why.

The way I describe the pain I felt on bad days is deep, sharp pressure; I felt like my head was going to explode. The pain in the top of my head did feel like a burning pain and the pain behind my eyes was shooting and sharp. The pain was pretty constant toward the end. Before it got bad I did have some days that weren't too bad.

I am happy with the results of my decompression surgery. The headaches I do get are nothing compared with the headaches prior to the surgery. I believe I will never be completely symptom free but I can deal with it. I know it is scary after you first get dx but hang in there; now that you do know your dx you can get treatment. My prayer are with you. Carri