|
Post by ErikaNikole on Jan 9, 2011 1:44:14 GMT -6
schwannomas can come back if the NS didn't get it all in the first surgery. its my understanding that all it takes is one schwannoma cell left behind and it will grow back. i have also read about a new condition called Schwannomatosis. en.wikipedia.org/wiki/Schwannomatosisi don't know much about it, and i would not jump to any conclusions either. this is really all i know though. i would definitely ask him or a NO about this form of NF. i hope everything turns out well for you. keep us posted, and feel free to email me anytime. erika
|
|
iam1ofjw
Full Member
if i can't stop the wind, i have to change my sails.
Posts: 20
|
Post by iam1ofjw on Jan 19, 2011 22:09:16 GMT -6
i had one removed a year ago, it was pressing on the nerves to my bladder and bowels. sorry to say the removal of the schawannoma did not re generate the nerves. i have to wear pads or diapers now. so though they may not be cancer they can leave you with lifetime problems.
|
|
|
Post by Marge L on Mar 5, 2011 13:59:25 GMT -6
After 1.5 years of a constant pain in my side, losing bowel control, falling periodically, undergoing multiple tests and even had my gallbladder removed, based on that surgeons recommendation, I finally insisted on seeing a neurologist. Within 10 minutes he told me I had a spinal tumor at or around my T7. I was immediately sent for an MRI to confirm his diagnosis. Within seven days I was on the operating table for 8 hours while the surgeon removed four schwannomas from inside my spinal canal. So I completely understand both the frustration of not being listened to and the relief of finding someone who finally did listen and give me a reason for my complaints.
After spending a month or so using a cane for support and six weeks of physical therapy, I was pretty much back to normal. However, I still have strange sensations in my legs and pretty constant discomfort with the muscles/nerves in my back. I also retained a small portion of my side where the nerves were damaged enough that I have no feeling in the same area of my side and into my stomach area.
I've just recently attended another round of physical therapy in hopes of eliminating some of the residual pain, but it still continues. My surgery was done in April 2004.
|
|
|
Post by Marcie B on Mar 12, 2011 12:12:13 GMT -6
Hi, Everyone. I'm so relieved to find this site. I'm looking for information and support for our 13 year old son. He had surgery for an L2-L3 schwannoma on Jan 30th, 2009. The NS said that two nerve rootlets were "sacrificed", and that all of the tumor was removed. R has had continuous lower back pain, numbness and shooting pains in both of his legs, muscle weakness and occasionally falling down for the past two years. He also has myofacial pain in his upper back and neck from trying to compensate for the gait imbalance. He uses a wheelchair at school for mobility and comfort while sitting for a long time. He has also been diagnosed with depression, anxiety (including school anxiety), PTSD from an awake intubation for pulmonary edema, and suicidal ideation. He takes cymbalta for the depression and neuropathic pain in his lower body. After struggling with two pediatric pain specialists, and trying several different pain meds that didn't work, we finally found out that his neurologist who has been seeing him for a year could px pain medication. The N suggested Keppra, an anti-convulsant, starting him at a low dose at bedtime, then increasing to twice a day. This seems to be helping him. He also has physical therapy once a week, chiropractic once a week, psychologist once a week, nutritionist once a month and we're making arrangements for massage therapy. He previously took an aquatic exercise class for kids with disabilities and enjoyed it very much, but we had to stop it because of recurrent ear infections. Because of the chronic pain, and reduced mobility, he has gained about 60 lbs and struggles to exercise. The pain is also affecting his immune system and he misses a lot of school due to frequent illnesses. Another thing that has helped him is playing wheelchair basketball at UCLA twice a month with other disabled athletes. We're looking into WC tennis and looking for any other adapted sports activities.
One thing I would like to know is does anyone else consider spinal cord resection and sacrificed nerves to be a form of spinal cord injury? The NS who did his surgery won't discuss many of our questions and keeps insisting that R "is fine as long as it's not affecting his quality of life". (Grrr and frustration with the NS). Thank-you for being there and thanks to SCTA for this panel.
|
|
|
Post by millelacskay on Mar 12, 2011 16:51:48 GMT -6
Hi Marcie - it is very hard to read about your son and all that he has been going through. I am 64 years old and have been fairly healthy my whole life so I am adjusting okay to having to deal with a SCT - can't imagine what it would be like if you were only 13 years old and had your whole life ahead of you. It's very hard to keep a positive attitude when it hurts to do EVERYTHING. My personal opinion is that the sacrificed nerves should be a form of spinal cord injury but the doctors probably don't see it that way. And the remarks that he "is fine as long as it's not affecting his quality of life" ? On pain meds, using a wheelchair, etc. - he doesn't think that is affecting his quality of life? Are there possibly any other NS in your area that you could get a second opinion from? My two sons are older (44 & 36), but it just breaks my heart to think of what you and your son are going through. Hopefully you will get some answers soon.
|
|
|
Post by ErikaNikole on Mar 16, 2011 22:23:00 GMT -6
hello marci.... glad you found "us". you may want to direct some of your questions through email to George Jallo, M.D. Division of Pediatric Neurosurgery Johns Hopkins Hospital 600 North Wolfe Street, Harvey 811 Baltimore, MD 21287 Tel (410) 955-7851 Fax (410) 955-7862 gjallo1@jhmi.edu he seems to be very good and the best when it comes to kids. i am younger, but deff no kid, and i have not bounced back like i thought i would. i have tried everything you have and i have had no luck. although i have not tried all the drugs that you guys have. i take nurotin, but it doesn't really help that much. the pain may be there the rest of his life. i would deff continue PT. as far as depression... i can relate. its very difficult. i would look into a camp maybe for week in the summer. try to find things for him to do with other kids. have you looked into a developmental pedaitritian (sp) they sometimes work with psycologist, therapist, ect in 1 group to try to deal with a child together. im not sure if that is the appropiate place, but it cant hurt to look into it. good luck! i would deff re-post this on the main board, the care givers board, or the kids board. keep us posted! -erika
|
|
|
Post by Todd on Mar 26, 2011 14:37:20 GMT -6
yes, anyone who has had any kind of invasion to the spinal cord with resulting residual effects has a spinal cord injury.
those of us who had operations had a controlled spinal cord injury which is better than an accidental spinal cord injury but an injury non the less.
Todd
Just to clarify, there is injury in the pure sense of the word and there is injury in the legal sense of the word. I don't think that a spinal cord operation as a treatment for a spinal cord condition falls into the legal definition of spinal cord injury.
|
|
bradd
New Member
Posts: 1
|
Post by bradd on Apr 21, 2011 10:59:26 GMT -6
Before surgery I strained my neck on an exercise machine. I strated feeling an electrical tingling going down my lower right leg. Went to a chiropracter and a few doctors, the last of whom sent me to the ER. An x-ray and cat scan later resulted in the schwannoma diagnosis on a nerve root @ the C-1 C-2 level. Got admitted and an MRI confirmed the diagnosis. I had the surgery which went well, thank G-d. 95% of my symptoms were gone, I was left a little bit of tingling in the lower right leg. The NS told me I could go back to my exercises, but only light exercise. But me : I overdid it. The next day I felt pins & needles, electric shock & tingling all over my body. A lot of it followed head movement. I know that I have other bulging & herniated discs in my lower cervical spine. The symptoms are not going away. They sometimes subside, and i can resume exercise - only to have them come back as bad and even worse than before. Took neurontin - that didn't help, now I take Lyrica (150 mg) 2 to 3 times a day. It helps a little, I guess - but I still have these symptoms. Argh! Also I have cracking sounds in my neck, which the NS says is from degeneration in my cervical spine.
I am looking for ideas or suggestions. How long should I take to heal, what can I do to speed my recovery. How about hanging upside down on a an inversion bench to stretch the cervical spine? Dangerous? Remedial?
Thank you all - I wait for any ideas you might have. Bradd
|
|
|
Post by ErikaNikole on Apr 25, 2011 20:41:55 GMT -6
hello bradd, i am sorry but i am no help in this situation. i think that you would get a better response if you posted this in the general forum board. you will fin other people with SCTs in the same area as you. good luck!! hope you start feeling better soon :-)
|
|
ereader
Junior Member
Cheshire, UK
Posts: 10
|
Post by ereader on Apr 28, 2011 8:14:49 GMT -6
I had walnut-sized schwanoma removed from T8 in 1989. Just been diagnosed with 2 "small" new ones L3-4. Waiting to see NS on 13 May for detailed info. I was surprised to get new ones in different site. The first had been completely removed and I had full range of movement after with some numb patches and odd shooting pains but nothing like previously. Can't decide if wait and see is the best option because the pain so far iss nothing like the first time. Great to have a forum just for us. I'm British and living in the UK now but I'm sure you will let me in because I lived and had my first surgery in Hotlanta in 1989 and also lived in beautiful Boston in the 70s. Miss y'all.
|
|