Chiari Malformation Community
Not sure where to turn - 10 years post op
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Not sure where to turn - 10 years post op

Sooo ten years ago when I was 14 I was diagnosed with Chiari after a life full of symptoms that only got worse as I got older. They did a craniotemy (sorry my spelling on this *****...) and laminectomy removing c1 and c2. No duraplasty. After surgery my NL and NS just told me that things would get better and I would be fine. Which turned in "here see this pain dr" and "why dont you apply for disability?"
Well by the time they started pushing the "D" word, I was 17 and just decided to give up. I stopped going to my doctors, and just lived with the pain. Half my life since seems like a vicous circle of being in so much pain that I cant leave my bed, to feeling just ok enough to go to work and make a living. I'm 24 now. I think I've dropped out of college about 10 times because I just cant manage with the pain...
Finally, things have just flat out hit bottom for me. My headaches are so often now that I might be fine in the morning but in the afternoon I want nothing more than to die and vice versa. I cant tell you how many days I only got up to let the dogs out to use the washroom.
I can't hold down food thanks to my nausea. Plus side is I've lost weight, but not quite the way anyone wants to lose weight...
I have a constant ringing in my ears, insomnia, dizziness (two really bad falls in the last month spraining a wrist and bruising my shin bone) and I've been passing out. Also have this crazy wooshing sound I hear/feel in my head.... and of course the nausea and headache/shoulder/neck/back aches.

I promised my husband to go and see a neuro. I've now seen two.

Neuro 1.) I went there and was told " we dont do heads or necks here. The doctor only works with autoimmune diseases. you cannot see him." REALLY?????? After I waited four weeks to see him and he had my chart, I get told this after sitting in the exam room waiting for an hour????
soo....
Neuro 2.) Lots of tests done by her. I was leary because she ranted about being anti-meds and surgeries (should have been my first warning) Fun MRI, three kinds of blood tests, and a sleep study. Called her office three time while waiting for my follow up to see if there were any results on the tests. Was told that "I need to wait". I waited. Appt was finally today. She looks at me says that the tests show "some Problems" but she thinks they all have an underlying cause. That I am not getting enough of xyz vitamins and oh i need to eat this grass shake that costs 300 a month and I need this test on my toxin levels, but yea that test isnt something that "insurance recognizes as effective" so it'd be a 600$ test out of my pocket to take. I tell her I dont have the money for any of that and that I take vitamins, and i KNOW this isnt vitamin deficiency i've had it my whole life. She proceeded to tell me that she doesn't believe that chairi or any other issue is really caused by the body, but by the body NEEDING more of something and it's "acting out" she then said that if I didn't want to do the test and drink her grass drink, then I needed to get treated by my GP and not her.

So... I've left a message with my GP but now I just feel lost. She wont even tell me what the tests showed. I feel cheated and I feel exhausted and I'm just starting to see why I gave up hope in the first place.

Anyone know of a good NL in the Dekalb/Rockford IL area??

the crazy doctor, Neuro 2.) is Dr. Alhambra out of Rockford btw. Stay away... ugh
620923_tn?1405964489

Hi and welcome to the Chiari forum.

LUCK !!

I read ur profile and saw u wrote wish me luck, and I had to... : )

Well, the fact u did not have a dura plasty could be that u still do not have enuff room for the CSF to flow, or u had scar tissue form.

This is not an easy condition to content with...we all know., but u r not alone and we will do our best to help u.

The most important thing is the Dr u need a true Chiari specialist one that is well experienced with Chiari and does research not a NS that does the chiari surgery....there is a huge diff and u may have to travel to get to one....u may find things on line that Chiari is rare, it is not there r far too many of us for that to be a fact plus one Chiari specialist said "There are about one out of every 1,000 people diagnosed with Chiari Malformation, but Henderson believes the number is closer to one out of 100 and of those one out of 10 are actually diagnosed correctly."

Once we get the dx we r sent to a NS, and they get paid when they do surgery so many will offer it...some shy away from it and give us the brush off...we call this the "royal Chiari Runaround".....we get to feeling like a ping pong ball....

SO find a true chiari specialist, use the list of Drs on here to research Drs, as not all on the list may be true chiari specialists but is a Dr that a member here went to and liked, the list is also NOT a referral. Use the Health Pages for the list and other info and tips - http://www.medhelp.org/health_pages/list?cid=186

BTW- not sure if ur NS told u some that have the PFD can develop other issues post op, seizures are one of them ICP, POTS, are 2 others...CSF leaks, brain slump, cerebral ptosis is another issue when an inexperienced Dr removes too much bone...it allows the brain to slump or fall onto the brain stem...so u would have many of the same symptoms.

I would not go back to ne of the Drs u have see so far JMHO.....

If u do not have copies of ne of ur MRI;s and the reports get them make copies and send them to some of the true chiari specialists u feel u would be able to get to and ur ins would work with...going forward always request copies of all tests and the reports so u can easily get another opinion.

Hope this helps

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