Pain

[canadianlistener]

Anyone experience pain that seems to be coming from the back but at the same time is in the abdomen. I have been experiencing this for over a year constantly. Just wondering if it is from the syrinx or tethered cord or is something else going on.

Rob

[Hoosier Mama?]

I've not experienced that specific combo of symptoms before, but the first thing that comes to my mind is bladder/kidney infection. Especially if you use a cath, it's likely that you have a mild UTI at all times anyway.

Have you mentioned this to your doctor?

[canadianlistener]

Thank you for the response. I have mentioned it to numerous doctors and have numerous tests. The urologist says everything is fine...the orthopedic doctor says the pain is not coming from anything having to do with scoliosis. The neuro says it can't be the syrinx. The respiratory doctor says it can't be the lungs. The GI doctor says it's not the GI tract.

Taking everything into account, I guess I have no pain because no one can find anything.....or they have found something and can't do anything about it. From what I gather they all believe it is coming from the syrinx in my spine and the neuro doesn't want to touch it again if he can help it. He tried to collapse it once with shunt. He went to take the shunt out after doing so and the shunt wouldn't come out so he left it in. The last MRI showed the syrinx had expanded significantly and that there is possibly 2 now.

Just gets a little frustrating at times.

Robert

[srunner]

Yes,

I have the same problem. Mine happens at night after I go to bed and it wakes me up in the morning and I think I am about to die!!!! I go to the urologist to have it check but I just had a check with my regular doctor to make sure I did not have a UTI are anyother infection in the bladder. Been scope at both ends with nothing wrong there ( bowl wise). Once I take my med's it helps relax everything I start to fell better. I feel like you. I guess there is no pain and nothing wrong since they haven 't found anything. This is all new for me. Just had my first surgery in March from L1 _ S1 from spinal bidfa occult. Age 42. Had CSF leak. Have a dural patch from L1 _ L4 spinal fusion at L2-L3 and a fatty plug around L5-S1 (whatever that means) and I have a new tumor they are keeping an eye on with still some fluid build up. No infection so far. They removed 2 tumors and un-therthered my spinal cord. ( spelled wrong). I really should not complain they just found all this out after me complaining with leg and feet pain for over 3 years by accident. I was born with it. I have the dimple in my lower back close to my butt and one leg longer than the other which they did surgery when I was 5 to try and correct that. I now wear brace from my foot to my calf for drop foot. Not really a pretty thing but it could be worse. If you find out any thing let me know and maybe I can tell my nuero guy to check it out. I know he thinks I am nuts are something. I know how you feel.

[sammy_rockwell]

Robert,

It has been a few months, and I don't know if you have ever found out anything differently.

I found out I had SBO when I was 21 when I was in a MVC. Three yrs later I started having problems (after having a herniated disc corrected from the MVC). An MRI revealed tethered cord and diastematomyelia. Surgery #1 corrected the diastematomyelia and untethered my cord. 4mos later I was back in the same back and leg pain -- retethered. I put off surgery #2 for 1 1/2 yrs. After that surgery I lost a little function in one leg, but rehabbed it back pretty quick. 3 mos later I began losing function in my legs very rapidly and was (marginally) walking with AFOs and forearm crutches, not to mention HORRIBLE spasms and pain. An MRI revealed hydrysyringomyeia at L2. Rather than placing a shunt my neurosurg decided to artificaially widen my spinal canal to make room for the fluid. If it didnt' releive the syrinx, then he would have to shunt it (but due to the inherent problems with shunts, such as infection, clogging, etc, he was trying to avoid them). After surgery, he said that widening the canal worked, but when they woke me up from surgery I was a T12 para. I got about 3 weeks totally pain free (after the surgical pain went away) and spasm free. Then it all came back.

It has been 3 1/2 yrs since the 3rd surgery and my pain has recently been increasing. If I move a certain way, I will literally scream (if my parents are over, they come running thinking I injured myself)... my back has become really painful. I have not had another MRI, but I have a sinking suspicion that either another hydrosyringomyelia has developed or my arachoiditis has gotten so severe that there is massive calcification and it has began to migrate.

Have you had any changes in function? That was the biggest thing I noticed with my syrinx. But when I had the hydrosryingomyelia, it was the most painful time I have had in the history of my back.

Sammy

[canadianlistener]

My hands have gone numb within the past 2 months and the back of my head cracks frequently now. Also I get this severe pain just like someone is grabbing ahold of my head and trying to pull it apart. I don't know what to think about it anymore so I try not to think about it.

Rob