Hi....I too am a patient of TCI am 1 yr post op for my chiari and will be going back for the TC release.
I saw u had 2 other surgeries already...may I ask y other than the possibility of scar tissue needing to be untethered again r u going to a diff dr than u did b4?
I wish u all the best and the Drs at TCI r great !!
"selma"
I have had two TC surgery's and have just sent my MRI's, etc. to the Chiari Institute in GReat Neck, NY for review. I am having a great amount of difficulty walking and getting out of chairs that sit high. My legs ache and I also have found an area on the back of my buttocks which is hard. I know with TC that it is a progressive disease and you need to see a neurosurgeon that knows what they are doing with TC. You can look up the information on the institute online. They have a team of neurosurgeons that review your films, etc. once a week for free and let you know what they think and if additional testing is necessary
Good luck\
Rita
Hi...sorry ur dr is giving u that as the only resort...may I ask, is he/her a specialist on tethered cord?...There r NS that can do these surgeries and then there r those that only do these surgeries...a big difference...a true chiari specialist is also a TC specialist and they also deal with syrinx's too......
I would get a second opinion and see if u can find a chiari specialist to see what they have to offer u...I am also 50 and hope to have my TC taken care of if my symptoms progress.
Going to the urologist is a good idea for the urodynamics testing to see how the TC has affected ur bladder function.
TC release is not an easy or a surgery to take lightly...as it can retether from scar tissue and need to be redone....how it affects u and ur quality of life will help decide if u need to have it taken care of.
BTW...I drained my cyst by accident....I was trying to do palotties (sp) and I hear a pop...then I had some type of leak right by my dimple...well I found out later that the cyst has a thin layer of skin which was pulled off in my attempts to exercise...I was given an antibiotic and was fine.....I am sure it has since refilled as well...but do be careful what u do...I had no idea at the time of course that I had this.
Good luck
"selma"
Thank you so much for your insight. Since I originally posted my question, I had my visit to a Neurosurgeon.
He told me that I had several abnormalites on my MRI, but that Surgery is not an Option for either the cyst or the Tethered cord. He said the Risk far outweigh any benefit that I may receive. He did say that he had conferred with the other 3 Colleagues in his office and all agree. That while I had probably one of the biggest Mengineal cyst that they had seen. That draining the cyst would pose too many problems. That I could set up infection, develop menginitis, etc. And that the cyst would fill right back up with spinal fluid. He also stated that I did have a significant amount of arthritis in my spine. He put me on Mobic 15 mg 1 x day and told me to continue to take the pain medication. And there was really nothing else at this point he could do for me. He told me to continue the mobic for the next 3 months and see if that provided any relief. If my symptoms worsened then to call him. In the meantime he recommended that I see a Neurologist for my miagraines that have continued to get worse, a Urologist to check out my bladder. And that was it.
I asked him if I was just pretty much going to have to suck it up and deal with the pain and he said at this point "yes". I don't know if i mentioned it in the previous post. But I am a 50 year old female. So I have resolved myself to the fact that I am just going to have to deal with it.
The mobic has helped my pain. It is not nearly as bad as it was. I have lost about 12 pounds within a 4 week period "without trying" due to the mobic making me so sick at my stomach. (but I needed to lose anyway)
Selma, thank u for ur knowledge and wisdom u give unto others!!! *hugs*
What u have may be a result of surgery...if it was there b4 surgery it could be the same thing...and possible.
....my dimple or an indentation just above the crack...for lack of a better term.....this dimple is an indication that my cord is attached via a cyst to my spine.....in someone with spina bifida it is a place that would not have closed. For me it is closed, but indented.
Some may have a hairy patch too.....here is what I found on line.......
Children with tethered spinal cord can experience a wide range of symptoms. The condition can be identified by a lesion, discoloration, patch of hair, deep dimple, or fatty tumor on the lower back. This usually is accompanied by low-back pain; deformities of the leg, hip, and foot; problems walking; weakness and loss of sensation in the legs; scoliosis; and incontinence. The symptoms may increase gradually, and therefore may not be recognized until significant nerve problems appear. Some of these neurological deficits may be permanent. If the condition continues into adulthood, the strain on the spinal cord will increase, leading to increasing sensory and motor problems, as well as loss of bladder and bowel control.
what do you mean about "the dimple at the bottom of ur spine?"
I had two back surgeries...my kids laugh cuz my low back has what they call "a hole"...never had it before...and it looks like I am missing my spine in that spot.
Is that what you mean?! Or am I so off track with the dimple thing?
I also have the leg thing. They can't figure out what is causing it. Just had two mris....one of lumbar...one of pelvic...they think gludial tendenopathy?
Hi...I also have tethered cord...along with chiari malformation which I am 11 months post op....most chiari specialists do treat and care for those with TC...bcuz of the constant pulling down on the brain stem if u do not have chiari herniatation now u may develop one or a syrinx could develop too.
I was told I may develop the hammer toes...as of now I do not have that issue.
May I ask do u have the dimple at the bottom of ur spine?
Bowel and bladder issues r related to TC and one I have had for yrs as well.....I had urodynamics testing that showed issues with my bladder. I also have had recurrent bladder infections over the yrs as well.
I can only suggest u get to a chiari specialist to review all of ur issues and see if u r in need of treatment.
Many with chiari and related conditions like TC r prone to both connective tissue disorders and autoimmune issues like Hashimoto's....Ehlers-Danlos......DDD....stinosis..ect....
I pray u do not have all the related issues and that u can find a dr that can evaluate ur current condition.
Good luck
"selma"