Chiari Online Support Group

Newly Diagnosed in Okla

Hello all! Im 37 yrs old and recieved my diagnosis a few months back from my pcp. A couple years ago I began experiecing symptoms but my former pcp told me it was just my thyroid meds not working . She changed my thyroid meds and that was it. No scans were ordered and nothing else was ever said by her about my symptoms. I moved to another state and my symptoms again become so unbearable it made it hard to make it through the day. I contacted my new pcp who put me on antibiotics,steroids, and fiorecet . I complied with the instructions given and followed the course of the medications. The said meds did not help with symptoms.My pcp set up an appt for my ct and I awaited the results. Working in a medical office i was able to obtain a copy of my report. I contacted my pcp who at first told me its nothing to worry about. I asked about specifics on the report and thats when they came back with the diagnosis.He referred me to a neurologist locally,it was almost a month before i was able to get in to see the doctor. The neurologist that day seemed to be extremely thorough. He told me that the amount of my herniation wouldnt cause the symptoms that i was experiencing. He put me on blood pressure medication because the day of the appt my bp was elevated due to the amout of pain i was in. Again I followed the regimen set by the doctor. He or his office was to contact me the Friday following my appt. Nothing was heard from office and it took multiple calls and messages left to recieve a response. Again Dr put me on another regimen and I did such regimen with again no relief. I had to contact the office multiple times to get in contact with him. He had me come get samples to try and see if once they would help. Once again the medication did not work. I contacted his office to make him aware of current status. I am now currently awaiting my MRI and follow up appt.

Im sorry for the choppiness and probably horrible grammar of my post but today is not a good day. Some days I can work through the pain but today is not one of those days.
Some of symptons include:
neck pain
numbness/tingling in head
some extremity numbness
nausea
ongoing constant "headache"
sensitivity to sight and sound
poor balance
dizziness
lightheaded
and many more…

Thank you

Dear Newly Diagnosed,

It makes me want to weep when I read about neuro-docs who say stuff like, “the length of the herniation shouldn’t cause those kind of symptoms.”

I was so blessed to find a neuro-doc who specializes in nothing but Chiaris. He does nothing else. Takes patients from around the world to do the decompression surgery. I’ll never forget what he told me about herniation. He said, “I’ve seen that the length and amount of herniation has not made a bit of difference in determining the symptoms. One patient came in in a wheelchair - close to totally paralyzed. However, that patient had barely 1mm of brain ‘ooze.’ Then, another patient came in with mild tingling in his fingers as the only symptom - and he had over an INCH of brain ooze.” Every person’s CNS is so different. The amount of herniation should NOT determine whether or not you need to be ‘decompressed.’ The severity of your symptoms should determine that!

And, from my experience (I went 10 years misdiagnosed), medication was useless until I got the decompression surgery. I do hope things go better. A neuro-doc who has had experience with Chiari’s is your best bet.

Beth

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TY Beth. I am going to a 2nd Neurologist at the beginning of the year that
I hope will at least have a better follow up. We are having to drive 3+
hours but im hoping that it will be better. I do appreciate the words of
encouragement it is so hard to vent because everyone just thinks im being a
baby.

Dear Mander37,

When it comes to Chiaris, a 3+ hour drive is going to be well worth it - that is if you’ve found a really good neuro-doc! I ended up driving a “mere” 2 hours to get to my neuro-specialist. He was not part of the state’s medical system but a private hospital. But, he was the best! He was able to find my lateral ‘brain ooze’ on my MRI when all the neurosurgeons in the big metropolis of Charlotte were only looking for a medial ‘ooze.’ (and, couldn’t find any!) Hmmm.

The challenge with central nervous system illnesses/brokenness is that we don’t LOOK sick. My family thought - and still do think - I’m making it all up. I’m not in a brace, I don’t go about in a wheelchair, don’t wear a cast, etc… Outside, I look so normal to them. They can’t see that inside - the whole CNS is wonky - and can be in excruciating pain! All they see is my rosy cheeks and that on my good days, I’m vertical. They never see my bad days and bad hours - because I’m at home flat on my back and totally immobile. Those are the things the public never sees.

I get that same look when I pull into a disability parking spot. I just don’t LOOK like I’m broken because I’m not stepping out of my car with any crutch. Needless to say, I do have a permanent disability parking decal. Because my re-occurring post-surgical Chiari symptoms are chronic, I will spend the rest of my life dealing with the possibility of paralysis coming on now and then. People close to you will get really weary of 'Chronic." They are willing to help you out at first. But, when the help is needed long-term, most friends walk away. They just get tired of going out of their way - and being inconvenienced by helping. I just wish I could walk away from it all, too!!! We are stuck with ourselves. (Maybe we should form a Chiari Colony???)

-BethR

I completely agree!!! Chiari Colony needs to be in the works! I have noticed that the people that were there supporting me and trying to help me through the day have kind of just slowly withered away. Im so grateful for this page because I have found people that understand. As weird as it sounds Im super excited for my MRI so my current neuro will do something to help me!

Dear Mander37,

I hope your Chiaris will let you get through the holidays. Symptoms never take a vacation. How are you doing?

I am sometimes amazed how little the public knows about Chiaris. I received a call from a friend on the West Coast who said, “Chiaris is such a rare condition!” And I told her that where I live over here on the East Coast, it is turning out to be not all that rare at all! I know dozens of folks who are being diagnosed and looking for treatment. Thing is, all of these current ‘Chiarians’ had been MISdiagnosed for many many years. I sometimes wonder if that is what is going on in many regions of the US - that Chiaris is everywhere. Chiaris is flying under the radar because the symptoms manifest themselves as other ailments. :roll_eyes:

It’s a theory!

bethR

The last few days have been ok. Not great but not horrible. The “headache” never goes away but I am making it. I had my MRI yesterday morning and will see the local neurologist Thursday. Im very lucky that the next couple of weeks we only have 3 day work weeks so that allows me to rest and that in 2 weeks I also see the new neurologist. Hope you have a great christmas!

Dear Mander37,

So glad you had the MRI. I may be guessing here - but my theory is that Chiaris is a condition that went undiagnosed until the MRI was invented and used prolifically. If anything, an MRI will show oozing brain, for sure!

However, the MRI is only as good as the neuro-docs who read it. Make sure your neurologist checks your MRI but good and proper! Make sure he/she checks the MRI for lateral ‘brain ooze’ as well as medial ‘brain ooze.’

From my experience, my Chiaris was caused by merely 1mm of brain oozing out of the SIDES of my skull (lateral). Nothing came out the very back (medial). the neurosurgeon I saw first was a Chiaris specialist - and he knew to check the MRI for brain ooze out the sides of the skull as well as out the back. In fact, I only had brain ooze out of ONE SIDE of the skull, and not the other! I had hideous, horrible symptoms for such a small amount of ‘ooze.’ But - that’s Chairis for ya!

I was required at the time to get a 2nd opinion prior to surgery. I went to another neurosurgeon in Charlotte - and he only looked at the medial MRI scan. He didn’t bother to look at the lateral scans. So, he said I didn’t have Chiaris and didn’t need any surgery. HOW WRONG HE WAS!

So, that’s why I’m telling you you might have to educate your own neurologist! Some of them might ignore the lateral (side-skull) scans and miss your Chiaris altogether! Make sure they check your entire MRI scans, (Who knows… could brain ooze out of the front of the skull as well?? I don’t see why not. Although I’ve never heard of it, yet. Knowing Chiaris, I wouldn’t be surprised, tho.)

BethR