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Has anyone ever experienced these with Chiari?

Hello I am a 20 year old female who is in college and suffering from Chiari. I was diagnosed at age 12 (December 2008) with chiari and shortly after had decompression surgery. My original symptoms were mainly excruciating headaches after my surgery things got better. I had the occasional headache when running, jumping, laughing, or coughing. My first day back to school after my surgery I slipped on water in the hall and hit my head on the corner molding and got a concussion (this occurred at 1 and a half months post op, january 2009). Shortly after I developed tics, I was treated for a number of years with clonidine and eventually I was able to go off of the medicine and I was tic free. When I was 18 I began college(august 2014), a few months into my first year I began getting more headaches. I found I was able to keep the headaches at bay with medical massage every week. Sophomore year (august 2015) that began to fail so I turned  to chiropractic for back and neck pain.  I began going to the chiropractor and then the massage therapist once a week. That began to fail and so I started seeing the chiropractor exclusively to help relieve my headaches. That began to fail and in october of my sophomore year I got a second concussion, my tics returned. It was then my neurologist put it together that the tics were a result of a concussion, with no explanation as to why. Around the same time I began having an increase in anxiety, GI distress, and reproductive issues. In december (2015) of my sophomore year I got very sick for no apparent reason. The doctors then declared that I was suffering from IBS. Shortly after the declared I also suffered from Generalized anxiety disorder. Around the same time I was  having issues with my menstrual cycle. I became irregular, with very painful and heavy periods although I was on birth control. I started this new trend of developing a low grade fever in the first few days of my cycle. My OB thought I had been on the birth control too long so she took me off and told me my cycle would even out eventually. About the end of march (2016) my right ear began to go numb and tingle once in awhile. The tendency of that sensation has increased and is more frequent. Just recently (June 2016) I was found to have optic neuritis (swelling of the optic nerve). This was found when I went in to have my eyes checked. I had my eyes checked 6 months earlier and they had changed quite a bit and the doctor referred me to an opthamologist. They are currently working on figuring out more about the optic neuritis. I just can't help but wonder if all of the things I have added to my list of medical history is somehow all connected to my increase in headaches and my chiari. Doctors seem to look at me as my part, whatever their specialty is but not as the whole. Has anyone experienced any of this too? Does anyone know good doctors at or near buffalo? I am willing to travel to pennsylvania or ohio or somewhere else in New York. I am starting to get frustrated and I don't know what to do or where to go anymore.
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi osterr30 and welcome to the Chiari forum.

May I ask, were ALL related conditions ruled out?

And have you had MRI's since having the 2 concussions?

I also have been DX'd with  IBS and anxiety disorders and I know it is the Chiari and not a separate issue....but I do have related conditions as well which is why I asked.I had GI issues and gynecological issues.and looking back I feel they were due in part to an UNDX'd thyroid issue....an auto immune condition known as Hashimoto's.....do look into it.

I am familiar with others having optic nerve swelling and some of your issues mentioned above.....EDS should be ruled out.

A neuro optho would be a good place to start.... and a NL that is well informed and experienced with Chiari and ALL related conditions.

A MRI to make sure scar tissue is not forming and causing compression or an obstruction.
Avatar universal
Hi selmaS thanks for responding!

I don't currently have a neurologist who has looked at other related conditions. I am still seeing a pediatric neurologist who doesn't seem to know a lot about my condition. I am in the market for a new neurologist so if you have any suggestions on buffalo I would greatly appreciate it.

I am seeing a neuro opthomologist for the optic neuritis in two weeks. My chiropractor is working on coordinating my doctors because she believes all of my "separate issues" are related to my Chiari.

I have had MRIs every year since 2008 and I did have extra after the concussions.

I'm just at odds about my Heath I am so young to have so many things happening and I feel like no one seems to know or understand what is happening to me.
620923 tn?1452915648
COMMUNITY LEADER

  I am not sure about Drs in Buffalo itself but down in NYC area there are several very good places to go.
The list is compiled by members of Drs they have been to, treated by and liked.

NEW YORK

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical [email protected] NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
(212)523-6720

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310
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