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Post by Charity R. on Apr 21, 2009 13:46:06 GMT -6
It is good to see that there are other schwannomas on this board. As far as symptoms go, here they are. Before Surgery: What lead me to the doctors office was loss of feeling in my legs. It started in the right leg (which is weird because after surgery I 've had little issues with the right side of my body). Anyway, I stepped into a pothole in the backyard in October 2003 and injured my ankle, and it just wouldn't heal. After a few months my left knee started to give out on me and then the numbness started in my right leg. By spring I had numbness in both legs and by summer I was walking with a cane because I kept falling. The day it really hit me hard was in June 2004 when my daughter and I were at a park and I tried to run after her only to realize that I could no longer run. I had no pain before my surgery, only numbness. After surgery: 1. Intense muscle and nerve pain at the surgical site. That pretty much describes my life. 2. Tingling in my right toes and my whole left leg... I've gotten used to it though. 3. Electrical shocks: I got these all of the time post surgery and then they slowly went away. I only get them occasionally now. My NS said it was from having fluid at the surgical site. 4. Headaches: I get these from pain, or at least that is what has been determined since I never had them before surgery. For the most part life after surgery has been good. I deal with the pain and I've managed to continue working full time and be a great mom too. I have limitations on what I can and should do and try not to overdo. Thanks for sharing and coming on here to let me know that there are more of you out there. Charity www.charitymoon.blogspot.com
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Post by barb on Jul 2, 2009 21:49:30 GMT -6
I am home recovering from surgery for an S2 nerve root schwannoma. I am a long time sufferer of sciatica-type symptoms that progressed until I was not able to stand upright. MY surgery seems to be successful except I am having gait difficulties and my left foot is uncoordinated. My toes seem to curl rather than supporting the foot when I walk . I don't really have any pain and minimal spasm, and am again able to stand upright. Although its only been 3 weeks since surgery, I am wondering if anyone else had weakness/coordination issues and did it resolve ?
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Post by tc on Jul 3, 2009 13:14:18 GMT -6
Hi, Barb. Try posting your question in the "general forum" section. You will probably get more answers there. If you aren't scheduled for physical therapy already, please ask your doctor to prescribe it. Physical therapists (in my experience) can be so helpful. Welcome to the group. We're glad you found us. Let us know how things are going for you. You are still very early in your recovery. Teresa
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Post by dinotoad on Aug 7, 2009 13:16:13 GMT -6
I am home recovering from surgery for an S2 nerve root schwannoma. I am a long time sufferer of sciatica-type symptoms that progressed until I was not able to stand upright. MY surgery seems to be successful except I am having gait difficulties and my left foot is uncoordinated. My toes seem to curl rather than supporting the foot when I walk . I don't really have any pain and minimal spasm, and am again able to stand upright. Although its only been 3 weeks since surgery, I am wondering if anyone else had weakness/coordination issues and did it resolve ? Barb, Hang in there. Yes, 3 weeks is still VERY early in your recovery. The first 6 months will be important. I had weakness/coordination issues after surgery. My left foot was so numb that I was parnoid when putting on socks or shoes to make sure that my toes were not curled under. I sometimes felt like my leg wanted to collapse. But I could walk and I slowly got better. My leg no longer trys to collapse. The numbness is better but still there. I have learned to live with numbness. My coordination got much better but I will never have the confindence I had before surgery (rock climbing, etc). I had no physical therapy. My doctor said the best therapy was to live your life. I had surgery in 2001 in L1, L2, T12 for a schwannnoma.
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iam1ofjw
Full Member
if i can't stop the wind, i have to change my sails.
Posts: 20
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Post by iam1ofjw on Feb 5, 2010 22:40:03 GMT -6
Schwannoma Tumor @ L1 surgery nov 8, 2009 i don't know much about what that is, just that is what the doc said it was. it had taken up a lot of space in my spinal cord and was causing damage to my nerves running to my bowels and urinary tract. after surgery, i had nerve pain in my buttocks. that only presents itself now, 3 months past surgery after sitting over an hour on a hard chair. i am still in pull-ups as my granddaughter calls them, because i have incontinance. however that might be fixable, it is common in woman my age.
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Post by ErikaNikole on Apr 10, 2010 8:53:20 GMT -6
i too had a schwannoma tumor. its nice to see that i am not the only one on here, although it seems like we are a small "club". i had my surgery on 03/22/10. if anyone has any questions just let me know. i am doing well remember that although SCT's suck (to say the least lol) it can be manageable. i am not trying to make people that have had a hard time feel bad, but i know how scary it can be reading all the post around here and thinking that i was going to be on pain med's and different things the rest of my life. i am still early in my recovery and i hope i keep getting better everyday.
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fbinver06hotmailcom
Guest
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Post by fbinver06hotmailcom on Dec 20, 2010 19:11:19 GMT -6
Wow - just found this web site - (operation performed on me 17/11/10 for...Quote: L2/3/4 laminectomy and excision of intradural extramedullary spinal tumor at L3). Released from (rehab) hospital 3/12/10 with the only pain being in the lower back area where operation performed. And here's me thinking I would be back playing cricket/bike riding with 12yr old grandson in a couple of weeks. (I guess it ain't going to happen for quite a while though.) Can anybody offer positive comments after having 'Physio' treatment for similar operation???
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Post by ErikaNikole on Dec 22, 2010 17:29:07 GMT -6
what is "Physio"? i finally feel like i am not the only one on here that has a schwannoma.
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Post by Annette on Dec 30, 2010 9:30:23 GMT -6
Hello Everyone,
I too had a schwannoma. I was unable to get out of bed, 12 doctors missed it in my MRI (even the head chief of NS at a hosp in northern IL). My symptoms came on quickly but grew over a very long period of time (since childhood most likely). In September I began having mild back pain in which I began treatments for scolliosis (incorrect diagnosis). By Christmas I was in pain constantly. Then I began seeing dr after dr that told me there was nothing wrong with me, one even told me I was depressed and prescribed Cymbalta for me. I had multiple x-rays, ct scans and mris. All of which were read by idiots that didn't recognize the 4" tumor that had grown to fill my entire spinal canal. My nerves had been smashed to the side of the canal pretty much choking them off completely. My legs were beginning to look bluish purple from lack of circulation. The pain was so intense and our great health care professionals thought I was seeking drugs. At one point I even told the emergency room dr that I didn't want any pills or shots or prescriptions and that I wouldn't leave until someone found out what was wrong with me. That didn't work either. My parents were convinced to take me home (I was 38 years old at the time). My family wanted to believe something was wrong but nothing made sense, all the doctors said I probably had a compressed disc and that I would be fine in 2 weeks. 2 weeks kept coming and going. I found a great acupuncturist that would come to my home 3-4 days a week for me, that was so helpful!
Thanks to all the doctors that told me there was nothing wrong with me I continued to wait all the while I was just getting worse. I even went to a chiropracor specializing in compressed discs. He strapped me to a table and stretched me out 3 times a week. I literally would cry the entire time it hurt so bad. I had reached a point so desperate I thought dying would be an improvement. I had lost so much weight and looked so terrible that my son began coming home from college every weekend to visit me (he told me after I recovered that he thought any visit could be the last time he would see me).
Finally through a fantastic dr I was diagnosed. He opened his office during off hours to see me and had my surgery scheduled in 3 days. He said from what he saw in the MRI he had no idea how I was still able to walk (which was barely, I really had almost lost my ability to walk altogether). He also said he had never seen or heard of a tumor as large as mine. He is a credited dr specializing in spinal surgeries and is a professor that teaches at a medical school. He told me not to get my hopes up at a full recovery, that I would most certainly need radiation to kill off the tumor that would be left after surgery. When I asked him if it was possible that he would be able to remove all of the tumor and not require any post operative radiation, he smiled, gently laughed, and said...."anything is possible"
At my 4 week post surgery appointment I walked in in 4" wedge heels just to show off how great I had improved. He removed all of the tumor and there was no damage to my nerves. I was in surgery for 7 hours. NO NERVE DAMAGE!! NO RADIATION!! Truly a miracle.
I go in for an MRI every 6 months to make sure it doesn't return. I just went again 2 nights ago. I expect I will be fine again.
Life for me had returned to normal once I regained my stamina (I was tired all the time I had lived in bed for 4 months). By July I was at a full 100%. I can do everything I had done prior to my horrifying experience. This last summer I even climbed out an upper bedroom window to get on the roof where I scooted across the garage roof to get one of my kids helicopters that had flown up there by mistake, I paint, I bike ride, I roller blade, I cook, I go on roller coaster, I'm starting my own business..... There is nothing I can't do.
Life is good!!! Feel free to email me at any time with any questions I will be happy to email you back.
AGraf agraf20@gmail.com
Good luck to you all!
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Post by dawnie813 on Jan 7, 2011 10:06:51 GMT -6
Hello again! Haven't been here in a while.
Last week, I was persuaded to go to my PCP by friends and family after having neck, shoulder and left arm pains for the past 3 weeks. I just wanted it to go away, so I was putting of the visit.
Turns out, I have a "new" mass at C2. Had an MRI yesterday and am waiting for a call/appt with my NS.
I was not aware that Schwannomas came back. Does anyone have any insight??? Not looking forward to another surgery.
~Dawn
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