Chari Malformation with syrinx

[Levine38]

I'm contacting you on behalf of my wife. She has recently been diagnosed with Chiari Malformation at the age of 42 years old. After years of experiencing tremors (involuntary movements), a neurologist diagnosed her with CM1 and a neurosurgeon at UCSF has further determined that she has CM1 with spinal fluid (syrinx)
The neurosurgeon has told her that she is a candidate for surgery. Today, he told us that we could wait and monitor the fluid, and in 6 mos. she would undergo another MRI. He feels that it's likely that she will need surgery at some point but he doesn't think the surgery will treat her symptoms. He said her symptoms i.e.tremors, headaches, (Chronic regional Pain Syndrome/RSD,) lower back pain, arm pain and gastrointestinal problems are not typical Chiari malformation symptoms, and he is unsure if the surgery will treat the symptoms she has described. However, in the conservative research that my wife and I have done, it seems that some of these symptoms are associated with Chiari. My wife feels defeated; and we would appreciate your advice and feedback. We have the option to get a second opinion, and we are looking for a neurosurgeon that is up to date on Chiari. We live in Northern California. We welcome any advice or neurosurgeons that you recommend. Lastly, have any of you, or those who have Chiari, have gastrointestinal issues or any of the other symptoms that I have described? Thank you,

[Galant2424]

Might look at a different procedure. Doctors outside the usa have different theories on the real cause of chiari. Makes much more sense thas hacking out parts of your skull. Decompression doesnt work.
http://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/

[selmaS]

  Hi...just a FYI sometimes it can appear that a herniation has increased when in fact it may be due to how the slice was taken during the 2nd MRI...looking from a different angle can make it appear to grow or even shrink.!!!

SO do not be too upset over this...unless she has had a change in symptoms it should not be too much to worry over at this point.

Having the right Dr is KEY! and making sure they are a true Chiari specialist testing for related conditions as well as non related and taking precautions with those found....ie- EDS.

[selmaS]

  Hi Levine38 and welcome to the Chiari forum.

Chiari can and does come with other related conditions Syringomyelia is just one of them...and many have GI issues but it can be an indication of another related condition Ehlers-Danlos Syndrome....

Best bet is find a true Chiari specialist.....as they know which related conditions may be affecting her.....as for waiting when she already has a syrinx....surgery should help the syrinx shrink,,,,untreated it could lead to perm nerve damage....

We do have a list of Drs here and you may have to travel....keep in mind the list is not a referral nor an endorsement for those listed.....our list was compiled by the members here of Drs they have been to, treated by and liked....so research them, compare a few and see who is right for your wife.

CALIFORNIA

Dr. Langston Holly
Dr. Ulrich Batzdorf
UCLA, Westwood, CA
UCLA/Santa Monica Medical Center

Paul S. Jackson, M.D., Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
[phone]

Dr. Jorge Lazareff, MD
Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Build
Los Angeles, CA
[phone] Patient appoint.

Dr. Samuel F. Ciricillo
2800 L Street $5
Sacramento, CA
916-454-6850


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

[Levine38]

Thank you, so much for your feedback and the list of doctors!

[Levine38]

We're in the process of getting a second opinion, and I'm so glad we are! You know I'm just so upset right now because my wife's ns didn't even sit down with her and let her know that the Chiari I increased in size. We found out in reading the report on our own.  We just  requested her images and reports and found out that her Chiari has increased from 7mm12/2015 to 8mm2/23/2016.Doesn't the NS  feel that is pertinent that should be shared with the patient and her family when considering surgery!!!! This was our first meeting with a ns. Is this the standard treatment, or do some sit down with you and actually explain treatment and treat you like a person?  Also,  there was mention about "prominent nasopharyngeal lymphoid tissue" in my wife's report. I'm not asking for any medical advice. Just wondering if any one has had this come up in a report? Thank you.