help in NJ with syringomyelia

[PatrickRy]

My name is Patrick and Im 29 years old. I was recently diagnosed with syringomyelia a few months ago. Unfortunately the neurologist that found it was not very helpful in describing it to my family and I in any way. Even when we asked her where it was and how big it was, she only described it as being too small to do anything about. After reading up on it some, it says that some cases have been caused by a traumatic injury. At the end of 2003, I was in a very bad car accident that left me with a severe case of whiplash among other injuries. I was under chiropractic care and physical therapy for 3 years before released. Since the car accident, I have had chronic pain in my neck, shoulder, back, hips, legs, severe headaches, my eye sight even gets blurry at times, as well as other symptoms. I attributed all these symptoms to my car accident, but now I am being told if could be from the syringomyelia. After seeing my chiropractor for the past 7 years, and him being really the only dr that has provided me with any relief, even if only for a short period of time, Im being told not to see him anymore since any slight jerk of the neck can cause it to grow. They say not to add any extra strain to the neck, but being 6'5, almost everything I do adds strain to my neck. Currently I do not have health coverage, and the 2 doctors I have seen have no experience with this disease, and I feel like I am being taken just for my money. When I told the one doctor I have been in chronic pain for years, he just looked at me like I was crazy. I am a cosmetologist, and being so tall requires me to contort my body just to cut hair. i am afraid me doing this may cause it to get worse, and eventually I will not be able to do this for a living. I was put on a new drug called Vimovo which is a combo of naproxen and prilosec, which has done nothing for the pain, and they were giving me small doses of percocet 10 mg (about a 5 day supply at a time). Even the combo of the 2 hasnt helped much with the pain. Can anyone in New Jersey point me in the right director to a doctor that has knowledge of this disease and that will actually help me manage the pain so I can try and go about my life as normally as possible? I know I am not alone in this disease, I just dont wanna feel like I am crazy by doctors since most of them are not educated in this disease..

[thieb9]

Hi there. I am sorry that you are going through all of this. I too have syringomyelia. Recently when I asked my doctor why I was never told I had this she told me the same thing. That is was too small to cause any problems. The problem is it has since grown and I am rapidly going down hill. Some days I can;t stand for more than 10 minutes before I have to sit down.
There is a list of specialist on here but I dont remember seeing any in New Jersey. Most people that have this issues unfortunately have to travel..

It is also worth checking with your state health insurance plans. I do know that in many states they have plans for pre-exsisting conditions, and in my case in Maryland its not too expensive.

Also have you been checked for a Chiari Malformation? I do know that in my case I have chiari as well, and they are not sure if it caused my syrinx or if it was the car accident I was in years ago. But I am having pfd surgery because my chiari is causing my csf fluid to build up and they are hoping this will shrink my syrinx. I am not if this surgery helps if you only have a syrinx..

Syrinx's can cause permanent nerve damage so in my opinion I would work on finding a dr that can help you!
Good luck with everything and hopefully you will get some answers soon,
Tia

[rod44]

Any kind of Manipulation be it with a chiropractor or physiotherapy can make things worse if you have a Syrinx.
A Syrinx can be congenital, as a result of trauma or due to CSF obstruction due to  malformations such as Chiari, it is important to determine what is causing the Syrinx formation, if it is due to CSF obstruction then you need to treat the obstruction and this should resolve the Syrinx. A full spinal MRI with & without contrast is helpful to rule out spinal tumors and other Spinal problems related to SM. An MRI of brain should rule out CM. A CINE MRI will show CSF obstruction.
Do you know what level the Syrinx is at on your cord?

Ray

[selmaS]

Hi and welcome to the chiari and syringomyelia forum.

U r getting a lot of info and u may get whip lash from looking from one post to the next...but I will add this....

Yes, many times the syrinx can form after a trauma induced injury......many times, it is congenital (from birth) and the trauma may trigger it....either way, u r dealing with issues u were not dealing with b4.

And yes, the first NL that told u about is being too small to be treated may be true as well...many times this is  the case...too small for a stent or a shunt.... and yes having the area manipulated like Ray said is not the best thing either...I know it doesn't leave much.

But, the best thing is to rule out other related possibilities like chiari, tethered cord, etc......
as Ray mentioned u want to be sure u do not have a blocked CSF .

Glad to have u join us, but sorry for the reasons u had to seek us out.

"selma"

[CB1122]

Everyone else pretty much covered what I think... The Chiari Institute isn't too far... I went there and I'm in Philly. It's in Great Neck, NY. You can actually fill out their paperwork online and send it in with copies of any scans you've had done. Their board of doctors will review everything and let you know if you'd be a candidate to be seen by them.

I only have a 2mm herniation but crowding and many symptoms... so I met with a neurologist there. It was a great experience even thought I don't have all the answers I need yet. We met with Dr. Kula and he spent 3-4 hours with me going over all my tests, evaluating me, and talking about my symptoms.

Sorry you have to deal with all of this! Wish you the best...