newly diagnosed last week with Chiari

[pamk5]

I was in a car accident (rear ended)a few weeks ago and started having severe headaches and staggering around, memory issues, brain fog, the list goes on and on.  I finally see the neurologist tomorrow to discuss my results of the MRI done last Monday.  His nurse gave me my results by phone and not him which I thought was pretty sad. So I dont have alot of the specifics about how bad it is, etc.  Since I have been reading and learning about this condition I realize that it explains alot about some of the things I took as normal all my life.  Difficulty swallowing, lack of coordination, just didnt have the horrible headaches/neck pain till the accident, now they dont stop, just different levels of pain.  Has anyone else had this experience? I am thinking of seeing Dr Gerald Grant at Duke in NC.  Anyone have any experience with him?

Thanks

[pamk5]

I did find there is a doctor in OH that does the decompression by endoscopy has anyone had any experience with this?  I am trying now to get my records together to go see Dr. Grant at Duke.  Fortunately, is only a 3 week history at this point so hopefully it wont take too long to get it all together.  I am requesting an MRI on my spine since I am having a good amount of pain in my lower back with some "pins and needles" sensation in my left hip and weakness in my legs.  Really afraid I may have a syrinx, the neurologist seemed to blow that thought off since my chiari was so "mild". He seems to think most of my symptoms are still coming from post concussion syndrome.   This is so frustrating already wish me luck finding someone who can help me.  Hopefully, Dr Grant will be the one.  I am going to call my PCP about ordering those tests so I at least I have them when I find a specialist.  


You guys are awesome, thanks for you support and answering my many questions.  

[trdofpn]

I too began having symptoms after a car accident a year ago.  I was having terrible headaches, neck pain, I couldn't be around certain noises, I also had an electrical shocking feeling in neck and head.  They did an MRI and I have a bulged disc and "mild chiari".  I went to so many doctors and they all seemed to want to focus on the bulged disc which is not causing my symptoms.  I finally found a Dr. who has experience with chiari and I am scheduled for decompression surgery Sept. 20.  

I just want to say it is very important to find a NS who has experience in chiari.  

Good luck!

[lu7997]

My doc ordered a standing MRI (which is done sitting).  I still haven't heard if the measurements were different but from the pics it didn't look different.  I am really not sure if positional makes a difference. It is more on the compression of the spineal cord and the blockage of cs fluid that is the problem.    A cine study would be benificial and finding a speacialist also. Selma posted the link.  

I am really thinking from my personal experience and reading others on here that NL just don't like or think chiari can be symptomatic because "mild". "broderline" and "benign" are used way too often from them.  

Also a full spine MRI to r/o other conditions if you are able to maybe you can get your PCP to order the tests you need while you find a speacialist.

Good luck and hope u are able to get more answers out of your docs

[selmaS]

Hi...a CINE MRI is usually done to look at CSF flow...but, blockage can show as overcrowding....and the use of contrast lights up the CSF and can also indicate where a blockage is.

A NS that is a chiari specialist is better able to identify these issues...be it a CINE MRI or a reg MRI...but, will choose to do the CINE to look at  details of the blockage.

We do have a list of chiari drs, and u may have to travel to get to one....please research ne dr u choose to see.
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

[pamk5]

I saw the Neurologists today and of course he says it is minimal herniation at only 6mm, and of course he hadnt done a flow study.  He seemed to think my symptoms were still related to post concussion syndrome and not related to the "mild" chiari as he put it.  I did call Dr Grant's office today about an appt and they request you send them scans, etc before he will agree to see you.  The neurologist did start me on indomethiacin says it will decrease any inflammation and possible increased pressure in my head.  Also on Nortriptylline 50mgs at bedtime to ward off headaches.  I really need to find a specialist close to NC any ideas?  I dont want to travel to NY if I can help it.  My questions still are if it is 6mm lying on your back what is it standing? And how can they tell from a regular MRI if you have a blockage?  Sorry I am rambling... thanks for your support.  

[selmaS]

Hi and welcome.

Many time a fall or a MVA...a hard cough or sneeze can trigger chairi symptoms into a more active pattern.

Some of us have had symptoms our whole lives and r aware of them, others dismissed them as relating to something else....

We do have a list of drs for u to use as a starting point, be sure to ask ur dr if he is a true chiari specialist....many times u can tell by the way he responds to ur symptoms.

Ray has given u some very good info.

Please keep us updated on this dr visit

"selma"

[lu7997]

Mine all started last may after I was rear ended too.     I hope u find all the answers you need soon.   Good lick and welcome to the forums.   You will find this is great place to feel "normal" again.  

[rod44]

Hi and welcome :)

You will find that many here got their DX after some kind of trauma resulted in them having an MRI scan.

You would be best advised to get a NS (Neurosurgeon) who has good experience of CM. The treatment for symptomatic CM is surgery, however surgery is not a cure so dont rush into it without researching the surgeon you chose to do it. The goal of surgery is to improve quality of life.....

You should have a full Spinal MRI to check for related conditions such as Syringomyelia & Tethered Cord Syndrome & a CINE MRI to check for CSF obstruction.

Ray