Syrinx questions

[LordPhantom]

In 08 i was diagnosed with a syrinx pretty much in between my shoulder blades. 4mm
As of the past 10 weeks i have had bad headaches, ear pressure, dizziness(THE WORSE SYMPTOM EVER), lack of energy, neck and back pain, as well as spasms all over body, shakiness and burning in my left hand.
Also just always feeling out of it, as well as eyes blurry and sensitivity to light and sounds.
Im getting another MRI this monday w and w/o contrast to see if its gotten bigger.

Now the questions;
1. Ive been trying to research syrinx and am just kind of confused about it. How far does your spinal cord go down? Does it go to inbetween your shoulder blades?
2. Ive read about procedures, decompression and shutes, what do you think they would do for it being in the middle of my shoulder blades? Would they still want to remove the bottom part of my skull or is that a totally different procedure?
3. Does anything relieve the pressure? Ive tried hot baths and ice, but not sure if they even do anything. Advil doesnt do much at all.. Dont really what to start pain killers again...
4. What would the case be to where it would cause being paralized? Would it have to be a huge size and not taken care of? Would it be best to get in to surgery asap or just take it easy until a scheduled surgery?
5. I think its cause by my computer chair, sitting at the computer for endless hours, anyone else had this problem?

Any responce would be nice, just your experiences and opinions thanks

[selmaS]

Hi and welcome to the Chiari forum...we do include all chiari related conditions such as Syringomyelia.(syrinx)

And yes ur r confusing a decompression for chiari with a shunt to drain the syrinx .
A syrinx is a fluid filled cyst that is in the spinal cord and if it continues to fill with fluid it expands lenghtwise and width...in doing so it puts pressure on the nerves that are housed in the spinal cord...the compression causes the symptons u mentioned.

Did u have a trauma to ur back that may have caused ur syrinx?Do u know if they also checked u for chiari and/or tethered cord? All of the conditions are related and sometimes one can cause the other to form.

Ur computer chair may be agrivating ur syrinx, but it did not cause it.

The best advice is to get to a chiari specialist as they treat syringomyelia as well as chiari.There is a thread here called chiari specialist list....please research all drs on the list...and be advised that u may need to travel to get to one....u r fortunate that ur dr even knows what u have....

Please continue to post ur questions and concerns

"selma"

[Shane99]

1. The Syrinx is in your spinal cord. It's also possible to have more than one.

2. Like selma said, The decompression surgery is for Chiari - Have you been diagnosed with that?

3. I'm not sure if anything can really make you feel better, Tylenol might help some with pain. Something like a hot shower or bath can help relax the muscles that are inevitably going to be tense, but nothing but pain blockers will eleviate the actual syringomyelia pain.

4. Syringomyelia can cause nerve damage - I have some in my right hand from mine. The best thing to do at this point is, as Selma suggested, get to a Chairi specialist. You don't need to be in any "panic" hurry, but don't wait around before being seen by a specialist. Minor nerve damage can repair itself. Major nerve damage doesn't.

5. Generally Syrinx are caused by Chiari, but they can occur from other causes. Doubtful the chair would cause it, but something like trauma to the back (even years ago) could be the culprit.

[LordPhantom]

Thanks for the replys. The worst symptom is dizziness and it an operation can get rid of that, or make it slightly btter, its worth it to me. I think its from my spinal cord pushing into my skull...its almost as though to more i sit in my chair, the more tired and dizzy i become, perhaps this is caused by the syrinx..... Ive been trying to track down my dizziness for 11 weeks now, came off all pain meds and xanax, and lyrica was the devil for me( they thought i had fibro so they said "TRY THIS!!!".... worst drug ever if you dont have fibro or whatever else it helps with...)
It must be the syrinx, it has to be! Ill reply back here when i get the results for the next MRI. Thanks guys

[selmaS]

Please do let us know what that MRI shows...and ask about cranial instability...it is worth ruling out.

Good Luck
"selma"

[Shane99]

I'm on Lyrica and I like it. Helps me make it through the day.

I also have pretty severe dizziness. Mine comes from the Chiari. I had my surgery a year ago yesterday and I still have it. It's some better, but I'll probably always have it to a certain degree, but I think the operation has kept it from getting much worse.

[LordPhantom]

Results

Minimal syrinx is present extending from aprox. T3 to T4 and T6 to T7. Otherwise spinal cord is intact without focal signal abnormality or enhancement.

MR Impression:
1. Minimal syrinx of uncertain significance
2. Otherwise unremarkable exam.

Vertebral height and alighment are maintained. marrow signal is normal.

So its small, but can it still cause bad pain and dizziness?

[selmaS]

Hi...may I ask did u have the lumbar spine MRI'd as well??

Do u know how wide in addition to the lenght ur syrinx's r?

I know size should not be the only thing the drs look at, but unfortunatly most do.....we tend to get brushed off alot with our condition...and we must be our own advocate.

If u r feeling pain and dizziness then u have ur answer....wether the dr u r seeing believes it is quite different.

I am sure Shane will suggest something as he has a syrinx and a bit more experience deaing with drs on this issue.

Good luck
"selma"

[Shane99]

I would suggest you get a second opinion. You need to talk to a Chairi expert.

Yes, you can have dizziness with a small (or even no) syrinx. Keep in mind that Chiari is a brain/skull malformation. The brain effects everything, so it being squeezed into a small spot can difinetly cause dizziness and loss of motor control among many (or really any) symptoms.

[LordPhantom]

Im gettin referred to some guy in redding cali that goes around lecturing on syrinxs' , so I guess thats a start... I take it shane that you had your surgery for it? How was it? I dont like the idea of anything that could permit paralysis ( from surgery)  but what are the chances of it happening just from living your life? I can deal with pain, but i think its the constant out of my head feeling thats going to determine everything

[Shane99]

I recommend the operation. The chances of something going wrong in surgery are much slimmer than letting the Chiari grow unchecked.

I have some (probably) permanant issues, but they came from the Chiari and Syringomyelia being caught so far advanced. However, without the surgery, I would possibly be paralyzed and in much worse pain.