Chiari Malformation Community
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Avatar universal

10 years post op, was better now getting worse

Hi, I'm new to forums so please forgive me.  I had decompression surgery over ten years ago.  I had always had severe headaches and started having vertigo.  Lost my voice for several months and bending over about made me pass out.  I had surgery and felt much better.  I did have some hitches with recovery, but all in all, I was good.
I was fine until about 5 years later when I was in a minor car accident.  I slid off the road.  The next week, pains radiating down my neck and arms, vertigo, foggy brain, just generally feeling terrible.  Long story short, lost my job and I did apply for and receive disability.  
My symptoms just seem to be getting worse.  My memory is awful, I have constant vertigo, nausea and headaches.
I have been to Mayo Clinic and to the Chiari Clinic in Aurora, CO.  The Neurosurgeon in CO said I had one of the largest openings he had ever seen and that I'm not a candidate for more surgery.
I have a good doc but he's running out of ideas.  Does anyone have anything that works for them?  Vertigo and pain are my main issues.  I take all the vitamins and I try to eat paleo/primal.  Hard when you are down.  Pain management is hard I don't tolerate pain meds well.  I'm 46 and feel like I'm 80.
11 Responses
620923 tn?1452919248

  Hi Shan and welcome to the Chiari forum.

May I ask were ALL related conditions ruled out? Since your opening is large and I am assuming you do not have a CSF obstruction...
Vertigo can be due to a few related conditions and not just Chiari.....so regardless of having Chiari it could be something else.

Did you have a MRI after the MVA? Any Xrays?

Hi Selma,
Had xray and MRI after MVA.  That's when I went to the Chiiari clinic. I've been diagnosed with fibromyalgia and have lupus markers.  I still have one cerebral tonsil that is minimal and a small pineal cyst that I was told was not an issue.  I don't have inner ear issues.  Had extensive testing done at U of U hospital.  Not sure what other conditions?
620923 tn?1452919248

  Related conditions would be - obstructed CSF flow..Syringomyelia , POTS, ICP, CCI, BI, Sleep apnea, Ehlers-Danlos Syndrome, tethered cord.......

Many of us are DX'd with fibro as I was as well and later found it was the EDS and not fibro.....I also was told I had markers for lupus....still never DX'd.....

POTS=Postural Orthostatic Tachycardia Syndrome  is a form of dysautonomia that can cause blood to pool in the lower extremities...BP to drop or rise with changes in position.

ICP= is the pressure inside the skull and thus in the brain tissue and cerebrospinal fluid (CSF).

CCI=Craniocervical Instability, also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue.

BI=Basilar invagination is invagination (infolding) of the base of the skull that occurs when the top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem.

Well, never talked about any of those with any doc.  Holy cow!  I think I need to do some research. The rheumatologist that I saw thought my joints were unusually limber, double jointed.  Maybe EDS? Who diagnoses this stuff?  I live in a fairly small town, maybe it's time to go back to Mayo?
620923 tn?1452919248

  My Chiari specialist knew and educated me on EDS and many of these related conditions....his office did the testing for them and I was referred to the top EDS Dr on the  East Coast.....

Not all big name clinics are the place to go as they are not known for Chiari or the related conditions....you need to find a Dr that specializes in  Chiari and related conditions.

What area do you live in?
Pacific NW
Just wanted to say thank you as well.  When this all started with me in the very beginning, there wasn't much out there.  I'm amazed and overwhelmed at the information now.  You are giving me some hope, and I really need that almost more than anything.  Thank you for taking time to talk and listen and educate.  Went to the neurologist today, changed med dosages, we'll see.  Sometimes I feel like I'm a guinea pig for new drugs.  I'm really just looking for some quality of life.  Losing my job was so hard and the disability process was debasing.  I know I'm fighting depression, but there is so much more to it.  I have the family support to travel if you can recommend a doc that is willing to look beyond what I'm already dealing with.  Thank you again :)
620923 tn?1452919248

  I know just how you feel...hang in there...I am posting Drs in states up in your area....keep in mind they may not all be true Chiari specialists and you need to research them, this is only a starting point.....this list was compiled by members of Drs they have been to, treated by and liked.


Dr. Buchwald
Dr. Maravilla
Dr. Ellenbogen
Ninth & Jefferson Bldg
908 Jefferson St 5th floor
Seattle, WA 98104

Dr. Gregory Foltz
Swedish Hospital
Seattle, WA


Dr David Adler
Emanuel and Providence
Colunbia Neurosurgical Assoc.
1040 Northwest 22 nd Ave.
Portland, OR

Dr. Yashail  Vora
Mt. Talbert Medical Office
10100 S.E. Sunnyside Rd.
Clackamas, OR 97015

If you would like more state options please list which ones and if we have a listing for that area I will add to this thread.
Thank you so much!   I have family in Arizona and that's why I went to Mayo Clinic.  I am honestly willing to go anywhere just to get answers.  I'm starting to really wonder  about some EDS issues now.  In March of this year, I fell getting up off the couch, vertigo.  The odd part of it was that the tendon that runs down the outside of my left foot split down the middle.  The surgeon who fixed it said he'd only seen one other case of that.  Also that the ligaments in my ankles were elongated. I'm not trying to add another thing, to what's already here, but I'd rather know more than not.  
Hi Shan,
Just wanted to say I can relate and empathize. Seeing a NS June 9 at age 62 after a life of trying to get to the bottom of my symptoms, all very similar to yours. I also am wondering how much of this is EDS related. Beginning to think Chiari is a symptom of EDS. I have tendon pain as well, on the outside of my right foot right now. Have sprained that foot 3 times over many years but I thought it had healed years ago. I did nothing to it that I can remember to cause it to flare up but has been getting progressively worse for half a year or so to the point it is hard to walk. It feels stiff and extremely painful if I move my foot the wrong way. I feel like I have a tendon in my neck that is inflamed as well. I get subluxation of several joints. Seeing the doc about it next week and will finally get around to asking about EDS, but don't expect much from him. Wishing you good luck in your search for answers! :)
Good luck with your foot. I've been in and out of boots the last year and a half.  Never thought it was related!  I hope you find some answers as well. :)
Do you have a list of doctors for the midwest? I live in Hammond, Indiana, very close to Chicago,Illinois, but can travel to nearby states. I have POTS & I also have Syringomyelia at T7-T10. No one I've been to seems to think that there is any connection between the two conditions, but the doctors have been unable to find a cause for the POTS. I am unable to take the medications in high enough doses to really make a difference in my numerous symptoms. More & more, I feel that the Syringomyelia is contributing to the POTS, but do not know what doctor to go see.
Need a dr and will travel but now live in Alabama
620923 tn?1452919248

  I have always had foot issues too...I had one Dr tell me I had tarsal tunnel and had surgery only to find out later it was Chiari and EDS and not tarsal tunnel......

This is why it is so important to have ALL related conditions ruled out as they have so many symptoms that can be Chiari or this or that....it is hard to know what they are from since they are so similar....

One day at a time, and keep pushing for answers you will get there.....
Avatar universal
I can tell you of another common but rarely diagnosed condition that I have that can cause vertigo, brain fog, memory problems, and often shows up after traumatic injuries. It's called May-Thurner Syndrome and I can tell you doctors have no idea the problems it can cause the whole body. I had a stent placed recently and almost immediately ally problems dissappeared.
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