coping with a syrinx

Where do I start?...About 6 years ago I had a tree stand accident, a friend and I were putting up a lean-to stand when it shifted and feel on the back of neck. I saw stars for a couple of seconds but still had feeling in all my extremities so we finished hanging the stand. When I got home and told my girlfriend about it she convinced me to go to the hospital. They took x-rays and said they didn't see anything so I never thought anything more of it. Not long after though i started getting numbness in my left hand and my dr. said it was a pinched nerve and there was nothing they could do for it. I also have degenerative discs in my lower back and see a pain management dr. for which allows me to work and enjoy the outdoor lifestyle that I've done my whole life. About 4 months ago I started geting a numbing, tingling and burning sensation in my right hand and had an MRI done wich confermed a syrinx on my neck at c5-c6. The vertabrea at that site where blown out and pressing against my spine. After many test and specailists I finally went to Johns Hopkins Neurological Center to see Dr. Belzburg who confirmed a syrinx..A month ago I had surgery to repair the vertabrea at c5-c6. Dr. Belzburg told me we shouldn't do anything with the syrinx right now because of the severity of the surgery. We'll just keep a close eye on it for now. Needless to say my life has been turned upside down because of all this pain and suffering. My girlfriend couldn't cope with the pain I was always in and left and my outdoor lifestyle ( fishing, hunting,golf, baseball, etc.) has come to a complete halt..My question would be is there anything I can do to help ease the pain and burning sensation as far as diet or certain excercises...Also I'm an artist and tattooist and if nothing else I would like to be able to at least draw without the constant burn....If ther is anybody who can help in any way it will be greatly appreciated..Thanx, Charlie312

[shanmomof3]

Hi and welcome to the group! Couple of questions ... I'm assuming (and you know what that word does) that your dr is just a NS and not a chiari specialist or i dont think he would have dismissed the syrinx so lightly. Next, did they say anything about having chiari? I think you probably need a chiari specialist. JMO I'm sorry your having to go through this but know that you have a support group here. -- Shannon

[selmaS]

Hi and welcome to the Chiari forum.

We do have members here that also have syringomyelia and I am sure will post a comment.
Wow we do have another tattoo artist on here....fun coinscience : )

Did u have an MRI of ur brain as well?...were u told that ur syrinx is acquired or was it triggered from the fall?

Any compression of the spinal cord can cause many of the symptoms u mentioned...do u know how large ur syrinx is? Depending on the size of ur syrinx, they do watch it and it needs to be of a certain size b4 they can use a stint or shunt.

That is not to say u may or may not have the symptoms....I also understand ur frustration.

I hope u find the answers and support u seek : )

"selma"

[Charlie312]

to answer your 1st question...My dr. is a N/S who has according to him and his peers a great knowledge of my condition. From my understanding the doctors at Johns Hopkins University Hospital work as a team and according to the situation determine the most qualified in there respected field. As far as I know I do not have chiara but syringomyelia due to a injury caused from a blow to the back of my neck from the tre stand falling and hitting the back of my neck. Unfortantly the drs. who work in the hospital who checked me out after the accident 7-8 yrs ago only took x-rays and not MRI's. Being from a small town in lower DE., most of the drs. in our area probably wouldn't be allowed to treat your pet in a big city...lol...BTW I am very happy I finally found a site that can give me some answers from caring people who know what I'm going through..

[selmaS]

Since this is deff an acquired syrinx it would not have shown up at that initial  hospital visit....they can develop quickly, but tend to take a while....most are slow to develop and show up on MRI.

Since u r not sure if u have chiari or other related conditions u deff need to be checked....and many of us have found there r very well respected NS that can and do treat many of the conditions like a syrinx and even chiari however, it is not their main focus and they do not do enuff of them to be able to handle surprises during surgery.....and they do not think to test u for all related conditions b4 talking surgery or other treatments......

BUT, u r the one that has to be comfortable with the choice of the dr u go to....we will always harp (yes, harp) to make sure u have a true chairi specialist even tho right now u r only dx with a syrinx to get teh best possible care or just a second opinion.

"selma"

[rod44]

some thing to be considered, is there a CSF obstruction....
What kind of X RAY did you have after the accedent? A syrinx is best defined on MRI

As Shannon & selma have said you need a NS with experence of SM....

To drain a syrinx the NS usually uses a shunt device, the NS needs to drill into the syrinx to place the shunt,  this process  involves damaging good spinal tissue witch will cause nerve damage that is irreversible.but unavoidable, it is therefore important to make an informed decision about how you proceed, you and your doctor need to decide if the surgery is going to improve your quality of life etc

hope this helps
Ray
Ray

[Charlie312]

Thanx for your info Ray...Being that this is all new to me, please forgive my ignorance...what is a CSF obstruction??  

As far as the x-ray..my guess is it was a standard x-ray and it was found with a MRI with an (enhancer?)

Also my dr. is a NS that specializes in SM....

From what research I have done and talking to my Dr. I am very aware of what is involved in repairing the syrinx....From what my Dr. has talked to me about my condition as I mentioned in my post I had damaged vertabrea that had blown out and was jammed into my spinal cord at the site of the syrinx. The surgery I had last month repaired the vertabrea and relieved the pressure off my spinal cord in an attempt to keep the syrinx from getting any larger.
I go back to see him next week  for my post-op appt. From there we will devise a plan to monitor the syrinx or take futher action.

I truly appreciate everyones advice and information and will update  after my appt.  

[rod44]

Hi.
I must stress that the info is my understanding from talking to my NS. I have no medical qualifications, just my own experience of SM....
CSF = Cerebrospinal fluid is the fluid that flows around the brain and spinal cord i guess doing the job that blood dose for the rest of your body. When obstructed it can eventually enter the center of the cord causing the formation of a Syrinx or cyst in the cord....

it sounds like your cord was compressed and some times when the problem causing the compression is resolved the syrinx resolves on its own.....

On less there is significant neurological symptoms most NS will adopt a wait and see policy and monitor things

Do you know the size of the Syrinx?

Ray

[PhillyThumper]

Just read your post.with only a few changes it is my story exactly.
I also have a traumatic syrinx. I am having surgery on 1/12,fusion of c-4,5,6 My Dr ,a N/S has at Univ .of Pennsylvania is recommending a similar treatment that you are following.Fortunatly ,I am not in a lot of pain and only have minimal nerve disfunction at this time.
PhillyThumper