Hi I am new and have questions very long :( sorry

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Hi I am new and have questions very long :( sorry

Postby aaylajm212 » Wed Jan 04, 2012 3:21 pm

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?

Is there anything I can do to help the headaches/stomach pain they seem to go together? It seems like every time I am about to fall into a DEEP sleep the headaches start its horrible I need sleep :(

Should I not be doing any running, yoga, etc? Is walking ok what makes this worse and what makes it better?
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Joined: Wed Jan 04, 2012 3:16 pm

Re: Hi I am new and have questions very long :( sorry

Postby karenb » Sun Jan 08, 2012 12:34 am

Hi Nicole,

I'm sorry nobody has gotten back with you yet... we have good intentions, be we're sick, too (a couple days ago, I posted more pages than anyone would ever want to read about my own story...).

I'm not an expert on Roller Coasters or MRIs, so I can't comment on that. I have SM with a 3 mm (0.3 cm) syrinx from T6-T9 (a bit bigger & longer than yours), so I can at least relate to what's happened to your spinal cord.

Some of the symptoms you describe are the same as I experience regularly - especially muscle spasms and back pain. I don't have a Chiari Malformation, so my headaches tend to occur when I've put too much stress on my spinal cord, and they are a signal to me to back off a little (this may be an indication that you might be overdoing it with some of the exercise).

Check the post "TIPS FOR LIVING WITH SM/CM" (viewtopic.php?f=3&t=8060) for some suggestions on what makes our condition worse and better.

Not being a medical professional, I'm not sure what Interstitial Cystitis is, but some other folks on the board are more familiar with it. I do know that I have a neurogenic bladder as a result of my syrinx, and that a lot of the symptoms are similar. Have you seen a urologist and/or had a bladder study done yet?

Hang in there, and keep asking your questions!

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Location: Las Cruces, NM

Re: Hi I am new and have questions very long :( sorry

Postby aaylajm212 » Sun Jan 08, 2012 5:16 am

Hi Karen,

Thanks for you're reply and PM :)

I already feel better just knowing a lot of the symptoms I am experiencing, you and others have as well. Its very frustrating feeling as though so many things are wrong with you, and no one understands. I actually made an appointment to see a Neurologist here in VA, unfortunately I cannot get in with her until next month. I think you were right about the "exercise" and "flares" I have been having...I stopped working out for a week now and I have been better, not normal, not great by any means...but better. I am not sure if my symptoms were are worse with Running? or with the weight machines b/c I was doing thing with pulling the cable with weights towards my chest which is for back muscles. I did not know about a "neurological bladder" but now, I am thinking all of that is from the syrinx. The one thing when I went to the Chiari Institute that I remember the Dr. saying the most was that even though I "technically" did not have Chiari (based on measurements) I had all the symptoms of that and SM and that he has seen many many times.

As far as the Roller Coasters..they (the Neurologists) told me that they felt that my syrinx was congenital (meaning I was born with it) but they felt that the Roller Coasters triggered all my symptoms...b/c it was right after that day that I started having all my symptoms all of them.

Anyway I will look at the link you posted and thank you so much again for your reply :)
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Joined: Wed Jan 04, 2012 3:16 pm

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