SYRINGOMYELIA

[smfighter]

I was diagnosed 31 months ago with syringomyelia. At first, I did the physical therapy and continued to see the chiropractor who diagnosed me (yes, I now know that I should have stopped with chiro care as soon as I was diagnosed). I am just barely 22 years old and was actually going to school to become a nurse when I was diagnosed, needless to say that's not happening. I've just had my 8 MRI of my cervical spine done (the last report I saw said my syrinx was from C4-T2, largest at C5-6 measuring 4 mm across), I have yet to see the report for this MRI but when I looked at the films it was continuing to grow towards my brain (when first dx syrinx was from C5-T1) it looks like it has grown to C3 to my non-doctor eye. I guess my question is should I be demanding that my neuorlogist send me to see a neurosurgeon since all the medications that he has me on to take care of the symptoms of syringomyelia don't seem to be helping me? I happen to be walking around with a large purse full of medications constantly because I have to take them all--neurontin 3x a day, baclofin 3x a day, muscle relaxers on a prn basis, cymbalta once a day, migraine medications. I'm giving myself weekly B12 shots because I have a B12 deficency. How close to the brain does a syrinx have to get before they do something about it if its not getting any wider? I have already been seen at Hopkins by one neurologist and he looked right at me and said "I don't know enough to treat you so I'm sending you to National Institute of Health but you could be on a waiting list for treatment there for up to ten years." I appreciate the honesty but I need help sooner than 10 years from now.

[crew1]

I hope you are still on this board.  My name is Jason and I hope you are better.  Please let me know.

[rod44]

PT and manipulation is not a good idea. It is important to find ant CSF obstruction that can cause a Syrinx formation such as Chiari Malformation or other issues that can cause obstruction. Trauma or tumors can cause a Syrinx formation and need to be ruled out. As selma said the best person to treat SM is a NS with experience, as SM & CM are closely linked a Chiari NS would be the best person to treat this.

Ray

[selmaS]

Hi...u may want to try a NS that specializes in chiari as they also treat syringomyelia as u can have both.Sometimes a syrinx can develop from a soft tissue trauma or....it can be congenital and lastly it can be the result of CSF flow disruption from a condition known as chiari.

I know this is one condition that is monitored as most times the syrinx is too small for a shunt or stent.

But, I feel u will get more answers from a true chiari NS than a regular NS.I hope u jopin u sin the chiari forum.

"selma"