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Avatar universal

Seeking diagnosis

I hope someone out there can give me some insight on the process you went through with diagnosis -- or possibly misdiagnosis. Thank you for letting me ask a question of the community. I am a 40 year old woman who for months and months has experienced increasing severity of headaches at the back of my head and pain my neck; exercise only makes it worse. I have tinnitus in both ears constantly. I am desperately fatigued. I have passing spells of dizziness. When I have a headache, which is basically daily now, bending over makes it hurt worse. I am so tired of feeling so bad all the time; I need to be more available and 100 percent for my boys and husband. Work is stressful, but I am working on something I am passionate about, and I need to be myself again.

Recently, I finally saw a neurologist, who is a colleague. He suggested I am probably having rebound headaches and may be low on seratonin; he said no more Advil, which wasn;t helping anyway, and put me on prednisone for 5 days and Topamax. To be safe, he did an MRI. The radiologist said it is normal. I don't want to be perceived as the hypochondriac woman; I really have been trying to tough it out but I am miserable.

I've read a lot about CMI, and wonder if it is possible that a radiologist would miss the herniation?  Also, I've read it's possible that herniation is simply a symptom of CMI and that it's not the only way to diagnosis.

I guess I'm just wondering if others have had a similar experience, and what advice you would have about following up to see if it's possible that this is CMI. I have not spoken to my neuro about this yet.

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Avatar universal
Thanks to you and to everyone for their suggestions. I've called the radiologists and asked for the films and report. We'll see what happens. I'll keep you all posted. In the meantime, I wish everyone in the best on their own journeys. Angie, I hope you find relief very very soon.

Best -

Tess
Helpful - 0
1760868 tn?1313083138
I am in a similar situation. The only reason my NL is sending me to see a NS is because I had a Lumbar Puncture the same day as my MRI (with contrast) and the ensuing headache was so bad they gave me a blood patch. After which I had a pain free day. It was beautiful and so disappointing when the pain started coming back. It's been about three weeks since then and I am pretty much back to what I was before the LP and Blood Patch.  NL said that it could be the BP helped by buoying my brain and that's what relieved symptoms.

I do not see the NS until the 24th of August, but he doesn't seem to be a Chiari expert.  There is a Chiari Clinic in Aurora, CO (just across town), but they said I would have to submit a radiology report stating I had Chiari Malformation before they would set up an interview. And that doesn't seem possible, since the NL said he wouldn't have given it a second look except for the fact that the BP gave me a pain free day.

It was having that pain free day that helped me accept that I am NOT a hypochondriac, drama diva....I really AM sick...it is hard not to feel like you are complaining, especially when your symptoms are not really visible to people. You are not crazy. You are not a hypochondriac. And you are not alone. I have been dealing with this for the last 10 years with each diagnosis a promise that it will "fix" everything....hypothyroidism, menier's disease and central sleep apnea being the big ones. But while each off these has helped some symptoms a little bit, I am still in a huge amount of pain every day.

I am interested in knowing how your diagnosis process is going...I will try to keep you updated on mine as well.

Angie
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

AS u were told, yes, get copies of all ur tests and the reports...and yes, radiologists and NL's and even NS's may overlook chiari as an incidental finding...

Many of us were not aware of our conditions until we got a copy of the report and asked what it meant and pushed for more answers.

  There r so many issues that can cause the symptoms u described and they r not chiari symptoms alone, but r similar.

  Hang in there :  )

  "selma"
Helpful - 0
1667208 tn?1333107849
Yes, always get copies of your MRI's and the reports.  It is also pretty easy to see crowding and herniation so you can see it yourself you if you look at others and know what you are looking for. Or post it here in your profile and ask for input!!!  If you look around in people's profiles you will start to learn what Chiari looks like :)  -zygy
Helpful - 0
1663373 tn?1333635989
When I had my MRI the radiologist completely missed my 6 mm herniation and my NL and NS both saw it and called him on it so I would definetly have your NL take a good look at it because otherwise I would never have been dx.  Best of luck!
Helpful - 0
Avatar universal
Thank you, that's a great idea. I did not see the actual report. Do you think it's worth getting the actual films and showing to another doctor?
Helpful - 0
Avatar universal
Did you see the MRI report?  A lot of times, Chiari is mentioned "incidentally" and the last line of the report says "otherwise unremarkable".  I would get a hold of a copy of that report, just to make sure.
Helpful - 0
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