10 years post op, was better now getting worse

[Shan516]

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.

[Galant2424]

Decompression doesnt fix the cause of chiari. Usa doctors are behind the curve. This article explains the cause and why decompression doesnt work. http://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list for  several states out your way.....keep in mind this list is not meant to be a referral nor an endorsement for those listed it is meant to be used as a tool and starting point to researching Drs......

ILLINOIS

Dr. Todd Alexander
Ste 210
1235 North Mulford Rd.
Rockford, IL 61107-0077
[phone]

Dr. Frim
Chicago, IL

Dr. Merle Diamond
Diamond Headache Clinic
Chicago, Illinois

INDIANA

Dr. Troy Payner, MD IU Health Methodist Hospital
Goodman Campbell Brain and Spine - Downtown Indianapolis
1801 N Senate Blvd Suite 610
Indianapolis, IN 46202
[phone] (Office)

Please let us know if you have questions.

[debm478]

I apologize I meant to send to Alma
I'm pretty new here! I'm really not feeling well and didn't check who it actually posted to!

I hope you are having a good day

[selmaS]

  Hi Deb and welcome to the Chiari forum.

We do not have a listing for Drs in your state....that does not mean there aren't any it just means we have not had any members from that state share a name of a Dr they have been to ,treated by and liked.....

Do you live near a boarder that you could go to another state for treatment?
There is a listing above in this thread for a few nearby states.

[debm478]

Hi Shan,
I have ato say so relieved I decided to hop on this site and read the posts!
I moved to the Boise area a few months ago! Before moving I did research and found a Top Chiari Specialist here!
I was decompressed Aug 2012 I was feeling better than I had in yrs once I moved here!
The week before Mother's day i began declining , it's gotten really bad! I've had a severe headache every day since, ICP, ringing in my ears, vision problems, trouble getting words out, the worst is my blood pressure keeps dropping critically low,my heart rate is off, palpitations, chest pain, cold drenching sweats! My right side of my face tingling Lip's and my right hand goes numb, ice cold and tingling!
I was admitted to the hospital 2 wks ago for almost a week! I couldn't get them to have a Neurologist take a look at me? They did a heat work up, my heart rate and pressure were setting off the alarms non stop for two days! Once it settled and the heart test came back negative they sent me home?
I'm having pain in my knees and feet, stomach issues and the list goes on! I researched EDS and I was amazed how many symptoms I had that were listed!
I went to the Dr on Friday because you have to have a current MRI here in Boise for a Neuro to even consider you!
I was asked if I'd seen a Psychiatrist? If I had severe Anxiety or depression?? I explained I was having the same issues before my Chiari diagnosis and he in turn told me to drop it and thought it was Fibro and Anxiety? Tears began to roll down my face because I've been so sick and nothing is helping with my pain! He brought up depression again!!
I feel like I'm in a nightmare screaming for help and no one can hear me!!
I've lost all my muscle tone because I'm stuck laying on my couch everyday since it flared up! I'm weak, fatigued and I can't sleep to save my life!

The Chiari Specialist I researched before moving here said he'd take me as a parent when I first got here, but I was doing so well he didn't want to see me! I called his office last week and was turned down because I've only had a CT no Cine or MRI!
I tried to explain the importance of the Tests to the Internal med zDoc I see and he absolutely refused to listen to anything I said?

I'm at the point where I'm getting scared it's going to cause permanent damage or trauma! They found several 100 White Matter Lesions on my brain, but still no testing or aNeuro evaluation?

Do you know of a Specialist for Chiari in ID? Dr Manning is the Neuro Surgeon/ Chiari Specialist I found, but won't take my case now! I have a feeling it's due to my insurance? Once they asked and I stated Medicare the tone of the conversation completely changed!!
I apologize for the long post but I'm getting desperate! I don't have the support system I had in CO just a Son and he's going through a custody battle, but also told me I need to be stronger and fight through this? He doesn't get it and I can't afford to get any worse because I'm on my own! It's a struggle to go to the store!

Thank you all for the information you share and the posts you reply to! It gave me the courage to write about what I'm dealing with and gave me hope!

Have a good night,
Debbie

[JohnnyRocket244]

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.

[selmaS]

  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.....

[selmaS]

  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.

WASHINGTON

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

Dr. Gregory Foltz
Swedish Hospital
Seattle, WA
206-320-2800

OREGON

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

Dr. Yashail  Vora
Mt. Talbert Medical Office
10100 S.E. Sunnyside Rd.
Clackamas, OR 97015
503-652-2880

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.

[Shan516]

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.  

[poosygirl]

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! :)

[Shan516]

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. :)

[terrilm]

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.

[Csly]

Need a dr and will travel but now live in Alabama

[selmaS]

  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?

[Shan516]

Pacific NW

[Shan516]

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 :)

[selmaS]

  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.

[Shan516]

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?

[selmaS]

  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?

[Shan516]

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?