New and I could really use some advice/help

[Bodie22]

I'll make the best attempt at keeping this brief.  About 18 months ago I experienced a sudden onset headache with neck pain.  It has been chronic now (every single day) and I have visited many physicians (orthopedics, neurologist, neurosurgeons) and had many, many treatments.  Nothing has worked.  I have had degenerative disc disease in my lumbar region for 20+ years, yet found out that my neck is much the same after the MRI they did when I first had my headache appear.  I also had a brain MRI at the beginning as well.  Treatments have included ONS, epidurals, facet joint injections, trigger point injections, acupuncture, cranial sacral work, migraine meds, nerve blocks, etc.  Nothing has made one bit of difference in my headache.  I also experience tinnitus and some numbness in the fingers of my hands.  Pain level varies day to day, and seems to be worse if the weather is 'bad'.  I can make my head hurt worse doing the Valsalva maneuver as well.

Two friends of mine have asked about Chiari and whether I have looked at this as a possibility of what is causing my issues.  I looked at my own MRI's and noticed that my tonsils are lower than the images of a normal MRI.  On the report for my MRI, I noticed one radiologist said, "low lying cerebellar tonsils without frank Chiari malformation".  Nothing was said on the brain MRI or on my other (more recent) cervical MRI.  From what I have read, one can have symptoms such as mine without having the 5mm measurement required for an Chiari diagnosis.  My gut feeling is that I am on to something with this thought, and since my spinal cord is already impeded by lumbar vertebrae and cervical vertebrae degeneration, it sort of makes sense to me that my headache is related to CSF flow.  I have always felt like my head is just going to explode.  The pressure just feels so intense!

So, what do I do now?  Obviously this can be missed on MRI's, but would it serve me to get a CINE MRI?  Seek out someone who can (if nothing else) rule this out as a cause?  I just don't know what to do next.  Any and all advice would be greatly appreciated.

Thank you!

Alison

[selmaS]

  Here is the list for TX keep in mind.....the list is not a referral nor an endorsement for those listed....the list was compiled by members here of Drs they have been to, treated by and liked.....

TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX

[Bodie22]

How about Texas.  I have relatives there so could at least find a place to stay.

[selmaS]

  Since there have been changes to this site I can not post the entire list...I can copy and paste a state at a time....I know the Dr in CO is going to retire....but there are Drs in TX, TN, NC, NY, FL,....just name a state and I will copy and paste that section of the list.....

[Bodie22]

Ugh.  None in Missouri then?  I would be willing to go wherever I need to to find help.  I would have to check on my insurance, yet I would think they would work with me as I have certainly tried everything else.  At least I could put up a good case for seeking help outside of this state.  If you have a list, I would be glad to take a look.

Thanks, Selma.

[selmaS]

  I know just how you feel and I went to a few NS's too and was told by one I did not have Chiari, and then another one said I did , but it was "Above him" and offered no idea where to turn next....not until I came to this site and found a Chiari specialist did I get answers..

We do have a list of Drs for your use to research Drs, but sorry none from your state....let me know where you are willing to go and where your medical INS will cover you and I will post a list of Drs names for you to research.

[Bodie22]

So, do you recommend finding a Chiari specialist?  It just freaks me out a little that I have seen two different neurosurgeons, and one neurologist and none of them have mentioned that it could be Chiari.  Makes me wonder if they even looked at the MRI's or just read the radiologist's notes.  

I just feel pretty defeated at this point and am not sure where to turn.

Thanks for your reply.

Alison

[selmaS]

  Hi and welcome to the Chiari forum.

First, it is not a true statement for us to have a 5 mm herniation to have Chiari...it is what Drs use to classify Chiari, but it really does not mean anything one way or the other.....as you can have symptoms regardless of your length of herniation.

Plus, Chiari brings with it other related conditions that can cause many of the same symptoms as Chiari itself.....

A CINE MRI can be very helpful to see if you have a CSF obstruction....but MRI's of the spine thoracic and lumbar can help determine if you have a syrinx...disk issues etc....then testing for related conditions.....

You will want to educate yourself on ALL related conditions and Drs in your area as having the right Dr is key.