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Post by Scared to Death on Dec 17, 2011 13:31:21 GMT -6
Hi . . I just found out that I have a spinal tumor from my L2 - S1.....10.1 cm and I am scared to death in the inside, but trying to show a brave face. Surgery will be scheduled for the next couple of weeks. Any encouragement, insight, experiences, etc will be appreciated.
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Post by kansasmom on Dec 17, 2011 13:58:46 GMT -6
Dear Newbie, we are here for you. Everyone here has been through spinal cord tumor diagnosis, or has someone close to them with one. Most have had surgery.
My son is 15 yrs old and had surgery for his L1-L4 tumor back at the end of April. He has had some challenges, but overall he is happy and busy, getting on with life. His tumor has not changed who he is.
Please ask any questions you have, read some of the stories here, and share some of your story if it helps.
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Post by Scared to death on Dec 17, 2011 18:20:57 GMT -6
Thanks for the reply.
Being a Mom of an ill child is something I have not had to endure, and I can only imagine the emotional pain and strength you have had to go through. Koo-dos to you.
Now am on the other foot. I'm a single parent of one, who is now old enough to take care of himself (18), but I am the only family he has. My worries, of course, are if anything happens to me. . . .who will be there for him.
I have been enduring back pain for few years now, which has progressively gotten worse. It then started to make my legs numb, have a burning pain, along with electric shock pain. There were days that I could not stand or even walk with the pain and weakness in my muscles. I woke up one morning in Aug and could not move my left side. Now the doctors are starting to listen to me. One doctor finally decided to do a MRI, but that would take 2 1/2 months to get. It has taken a lot of phone calls, and pushing to have that done. Results. . . large mass. . . maybe a tumor. Need another one more detailed to see more. More phone calls and pushing. Finally got that done. Now I am barely walking, with a cane I can shuffle one foot and then drag the other behind me. Finally I drive to a hospital that has NS's, with my paperwork and MRI disks in hand.
I have opted for surgery. Something has got to be better than this type of walking, back pain, extreme back pressure, and now nausea and abdominal pain.
Thanks for listening. Was just wondering if anyone can tell me what to maybe expect after the surgery.
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Post by kansasmom on Dec 17, 2011 19:00:54 GMT -6
These tumors are rather individual, but I can tell you what my son, 'C', was like before and after surgery. His tumor is in a similar location to yours.
Before surgery C needed a cane. He was also having trouble with urination. After surgery he was in ICU for monitoring overnight, but he was coherent and fine on the IV meds they gave him. Two days after surgery he had an MRI. Then they let him sit up and they started him on bed exercises. Pretty soon they had him up using a walker and an ankle foot orthotic, for his one leg which had developed foot drop. During surgery he also lost sensation in one leg from the knee down and his bladder was affected.
C was transferred to the rehab ward at the kids hospital after a few days, where he had PT twice a day and OT once a day. He was in hospital total for about 2 weeks. He needed some help to learn basic things at first, like getting in and out of the bath. Within the 2 weeks he was able to get around with the walker and climb a few stairs with a handrail on one side and using a cane. He came home and then started outpatient PT. He was given a wheelchair to use for going back to school - he could not walk that kind of distance.
After surgery C's pain was less than before (not immediately, but after he healed some). His walking has progressed through PT.
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Post by sandyr on Dec 17, 2011 23:32:50 GMT -6
Hello Newbie. As kansasmom said, each tumor and each individual's recovery is unique.
In my case, like you and many others, I had lower back pain for years. Last year it got much worse and nothing helped. Not chiropractic care, massage, over the counter pain meds or muscle relaxers. I started having sciatic pain too along with sensation in my calves (which I describe as tight socks). After a nerve test showed decreased sensation in my left leg, I got an MRI. My lumbar mass (L2-L4) was 6 cm long, a little smaller than yours. I also had a herniated disc at L5/S1. I had surgery in January to remove the tumor and fix the disc. I woke after surgery and the sciatic pain was gone as was the sensations in my calves. They had me up and walking the day after my surgery and I was able to do it without aid. (I was using a cane a little for stability pre-surgery.) I went home after four days. I did have pain at the surgery site, but nothing like the pain I had pre-surgery, and it gradually decreased in the following weeks as I recovered.
My post op MRI showed a second, smaller tumor at T6/7 (7mm), which I had no symptoms for (that I could relate at the time) which I had removed in April. (I did notice that the adult onset acne (the deep, painful kind) that I had been dealing with for about a year, disappeared after my second surgery. Kind-of weird.)
I am one of a few who are still on this forum that have recovered very well and have no neurological deficits post surgery. Recovery outcomes run the spectrum as you can see from the posts here. I'm fortunate to be on the very good end of that spectrum. Recovery does take time, so be prepared for that.
Sandy
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Post by Scared to death on Dec 18, 2011 19:18:00 GMT -6
Thanks for the replies Kansasmom and Sandy.
Kansasmom, it sounds like you have a very strong brave son. I also can only get around with a cane, but even that is a struggle. I can see that the recovery is probably going to be longer than I have thought. I will keep your son in my thoughts and prayers that he progresses with his recovery. I can only imagine how he and your family feels about him not being able to walk and run. . . this is what children are suppose to do. My heart aches for any child that is ill or has a disability.
Sandy, I am so happy to hear that your recovery was much easier. I can only pray that my surgery goes just as well, but I am prepared for the worse. I do know what you mean by "tight socks". I have yet to find out what kind of tumor I have, but the NS says my nerves are all intertwined within it. Don't really know what that means or how that will effect my surgery or outcome, but I can only stay hopeful.
As I am new to all of this terminology, please tell me what you are referring to as PT and OT.
Sharon
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Post by kansasmom on Dec 18, 2011 19:58:49 GMT -6
PT and OT are physical therapy and occupational therapy. Generally, PTs will work with you on the lower body (standing and walking stuff) and OTs the upper body. OT's also help you adjust your "activities of daily living" after an injury - bathing, dressing, and eating (including food prep).
I think you should expect to need PT after surgery as you are already struggling to walk. If you end up needing inpatient rehab, after your surgery care is finished, be sure to ask to go to a spinal cord injury rehab center, and not just general rehab. You could even ask before surgery about where they are likely to send you. Some people get home visits from a PT, but that is more unusual.
When your neurosurgeon talks about nerves being intertwined he may be talking about your tumor being in the cauda equina. In the lower part of the spine the nerves fan out to go to the various muscles etc, rather than being in a cord as such. I don't think the surgeons know what your tumor will be like until they get in there.
I'll have my fingers crossed for you. Do you have a date for your surgery yet?
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Post by sandyr on Dec 18, 2011 21:19:57 GMT -6
During your surgery, your NS should monitor to see if what they are doing is affecting motor function and sensation. Ask him about this. Have them explain to you what they will be monitoring and how it will effect how they proceed during the surgery.
I'm still doing some PT even now. I have exercises I do every day at home to strengthen my back muscles and compensate for the missing bone due to the laminectomies (removal of part of the vertebra, the lamina). If I don't do them I find that I get stiff. I go in and see my therapist every few weeks for her to gauge my progress and give me new, harder exercises. I can do most things now, but my goal is to be able to kayak (flat water) again next spring.
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Post by imnotmaggie on Dec 18, 2011 23:59:27 GMT -6
Welcome to the group, I'm four years post resection for an ependymoma in my cervical spine and I still don't understand all these terms. Kansasmom is right about PT, quality for this type of physical therapy is important. I was pawned off on a nursing home because nobody warned me that going to a spinal cord injury rehab was necessary and it was only two weeks from diagnosis to cut when my tumor was found. The hospital allowed the insurance to take the driver's seat on my care and it was intervention by my family that lead to acute rehab and it was the best thing that could have happened to me. I still have deficits bu t I'm independent because of the PT I received at the acute rehab facility. I was able to go home in just over a month and continued home care for both PT and to change my dressing on my incision site and PICC line (I had multiple surgeries and an infection more care was required).
Praying all goes well for you in this journey.
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Post by bowtruckle on Dec 19, 2011 5:41:49 GMT -6
Hi - another Newbie here.
I have also recently been diagnosed with a bilateral nerve sheath tumor (dumbbell shaped) at S1 - L5, and another smaller tumor at T1. The thought at this stage is that they are both Schwannomas, but I guess they won't know for sure until it/they come out.
I'm currently living in Bahrain, but my MRIs are on their way to the Mayo Clinic in Minnesota as I type this. (My husband is from MN).
It is overwhelming, but I've already found this forum an invaluable source of information. I guess I'll be spending a bit of time here from now on in!
~ Bowtruckle
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