Syringomyelia -kind of long...sorry :(

Hi I am Nicole, Back in 2004 I spent a day a whole entire day at Six Flags riding roller coasters literally for like 9 hours.. shortly after that my problems began..I was 36 years old at that time. I started having severe "spinal" headaches at night after months of going to different doctors they did the MRI and this is what the report said:

"Intramedullary T1 and T2 weighted signal prolongation is demonstrated centrally within the spinal cord from level of T5 to the level of T9, with relative sparing at the level of T8. These findings are in keeping with a "syrinx" The widest diameter of the syrinx occurs at the level of T6/7, at which point the syrinx measures approximately 0.2 cm in maximum diameter."

After doing research on the internet and not having any Dr. able to help me I found the Chiari Malformation Institute and thought maybe that was what I had..since the institute is in Long Island, Ny and that was where I lived at the time I made an appointment and went there, but it took over 4 months to get in. While I was not officially diagnosed with Chiari due to the space of the cerebellum tonsils being ok..the Dr. there did mention Syringomyelia..but my symptoms at that point were manageable so I didn't proceed.But recently I started working out..running, yoga..etc...and the problems began again but worse now..and different...I have:

1.The headaches at night usually about 3am they start and with this I get a weird stomach pain..feels like I am starving!!!!

2. I get chills all over my body for like 10 min then they go away

3. Pain sometimes in my left cheek bone that shoots up to top of my head

3. Constant back and shoulder pain

4. Tired ARMS and legs

5. Muscle spazams

I have been diagnosed with Interstitial Cystitis (this is like having a chronic bladder infection without the infection) I now think this is also from the Syrinx as well.

I am trying to get an appointment with a neurologist here in VA as this is where I live now I guess they need to do a new MRI to see if the Syrinx has grown right?

Also, is there anything I can do to help the headaches/stomach pain they seem to go together I know it sounds crazy but its like they are connected somehow...I never get the headaches without the stomach pain accompanying it. The only way to get rid of the headache is to actually get up for the day...and I am exhausted being up from 3am- 4am....

Should I not be doing any running, yoga, etc? Is walking ok what makes this worse and what makes it better?

Thanks for listening and any help

[selmaS]

Hi and welcome to the Chiari forum.

To answer ur first question....should u be running, no- not if u get symptoms afterward...consider this...the syrinx u have causes an obstruction of CSF, and blood flow thru ur spinal cord, when u exercise u increase the amount that gets pumped thru...when u pump it thru a tighter space u will have pain and discomfort....

Next...many times a syrinx is too small to do nething for except watch...when symptoms change it is possible the size of the syrinx has changed too....

If u did not have tonsils that were herniated at the time, I wonder if ur syrinx was acquired from an injury....or if it is  congenital?

There are some good Chiari Drs down south, but make sure they r experienced with both chiari and syringomyelia.....u may have to travel a bit....depending on where in VA u r....

As for ur symptoms they could all be from the syrinx, as it grows it puts pressure on the nerves...so do get it checked asap.

   "selma"