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Schwannoma
Nov 19, 2013 19:35:45 GMT -6
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Post by jenncanada on Nov 19, 2013 19:35:45 GMT -6
For the past 20 years, ive been seeing random doctors, dermatologists and chiropractor for burning/pinching/shooting pain on the side of my spine, in between 2 ribs and under my shoulder blade. Ive had so many xrays done with nothing found. In the past 6 years, ive felt i cracked the same ribs at least 5times and twice this summer from simple things as coughing, working out and the last time by hitting a wave on a tube. No xrays have even shown i had actually damaged anything until i was finally sent for a MRI due to the amout of pain i was in... I was finally diagnosed in august with a schwanwnoma located in the T4-T5 area. It was 6.5mm into spinal canal pushing on the spinal cord and displacing it. The external portion of it extended into the chest cavity behind the thoracic aorta (2.8x2.6mm). The other part was attached to muscles behing my ribs(about 1.6mm in diameter). I was immediatly referred to a neurosurgeon and met with him a month later. Since I'm 28 and have no other health issues I decided to go ahead with the surgery. The laminectomy was done 3 weeks later, it took around 7hrs. They didnt want to keep more than 3days in the hospital. They pain was awful. The morphine was helping a bit but nights were pure torture to me. I decided let them send me home since id rather die in the comfort of my room instead of screaming and crying all night keeping the elderly ladies in my room awake. Anyways... they sent me home with 40 pills of 1mg morphine and no refills. Needless to say within 4days I was out off pills and wanted to die. I regretted my operation and thought I never be ok again... I got my family doctor to prescribe me more and started using a tens machine. A few days later I went to remove my stiches The next day I was suddenly 50% better. I went from 8pills a day to 2 and nightime tylenol. Every day since ive been doing noticable progress. I can wash my own hair!! I still cant do any house work other than laundry, and still not back to work but my life is slowly going back to normal... even if I won't be snowboarding this winter, but maybe next year! ***For now my skin and back muscles are still numb, in a T shape between my shoulders and down my spine, and I have the strenght of a 4year old. What bothers me the most is THE LEG PAIN!!! since I i quit taking medication and been able to sleep in my bed, ive been having crazy leg pain every time im ready to sleep. It last about 3hrs and even my Tens machine wont help! Does anyone else have this? Its making me insane, and then as long as I keep walking around im fine. If I can answer any questions, don't be shy. I read through this whole forum before my operation and it help me A LOT.
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Post by Rita on Dec 11, 2013 6:47:18 GMT -6
I must say that reading all of your responses is not what I was hoping for. I am 49 yrs old. I have, what they thinkis a schwannoma (about the size of a golf ball) on my spine at L2/L3. I am having surgery day after tomorrow. All of the pre-op is later today. The myelogram that I had done 2 weeks ago - showed no invasion to the spine, which was great news. Even thought this tumor is in my lower left back, I have a lot of pain higher up. I have pain in my upper abdomen just under my left ribcage(this has been going on for 2 years). And I feel like I have a "catch" behind my left should blade. I also have right knee pain most days. I am hoping for relief from all of this. I was curious about the length of time that I will be limited in my activities? I'm getting very anxious about my surgery.. Thanks for any reply..
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Post by Rita on Dec 22, 2013 7:48:12 GMT -6
This is Rita again. I had my surgery on 12/13/13. Today is 12/22/13. 9 - days out and I finally feel like a person. It's been a long long 9 days. I still move slowly and have some pain, but getting better each day. I can finally walk without a walker. My tumor was benign. I don't know the exact description yet. My follow up with NS is tomorrow. I have about 11 staples in my back that I hope will come out tomorrow. I have a lot of numbness on my left side. My left hip, left abdomen, left lower back - all numb. completely. I'm a little worried about it - but have read where that could be commom after messing with all of those nerves. I had NO numbness prior to surgery. only minor lower back and under the left rib cage pain. And by the way - the rib cage pain WAS coming from a nerve that the tumor was pressing on. The tumor, as described to my husband, was larger than a golf ball but smaller than an orange. It was on the spine between L1 and L2. I feel so lucky that they found it and it is OUT! So many people live in pain for years without finding out that it is a tumor.. My insurance wouldn't pay for an MRI until I exhausted other means of treating my back pain ( chiropractor, steroids, muscle relaxers, 6 weeks of physical therapy) - all the time the pain was increasing... I'll post again after my visit tomorrow. I'll be 50 on Christmas Eve and I'm so thankful that this thing was benign! And I hope and pray that he got it all... I don't ever want to go through this type of surgery again.
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Post by samuridude on Dec 22, 2013 10:28:49 GMT -6
This is Rita again. I had my surgery on 12/13/13. Today is 12/22/13. 9 - days out and I finally feel like a person. It's been a long long 9 days. I still move slowly and have some pain, but getting better each day. I can finally walk without a walker. My tumor was benign. I don't know the exact description yet. My follow up with NS is tomorrow. I have about 11 staples in my back that I hope will come out tomorrow. I have a lot of numbness on my left side. My left hip, left abdomen, left lower back - all numb. completely. I'm a little worried about it - but have read where that could be commom after messing with all of those nerves. I had NO numbness prior to surgery. only minor lower back and under the left rib cage pain. And by the way - the rib cage pain WAS coming from a nerve that the tumor was pressing on. The tumor, as described to my husband, was larger than a golf ball but smaller than an orange. It was on the spine between L1 and L2. I feel so lucky that they found it and it is OUT! So many people live in pain for years without finding out that it is a tumor.. My insurance wouldn't pay for an MRI until I exhausted other means of treating my back pain ( chiropractor, steroids, muscle relaxers, 6 weeks of physical therapy) - all the time the pain was increasing... I'll post again after my visit tomorrow. I'll be 50 on Christmas Eve and I'm so thankful that this thing was benign! And I hope and pray that he got it all... I don't ever want to go through this type of surgery again. If you didn't have any numbness before, then you caught it before damage was done. The fact that you're walking on your own after 9 days is a real good sign. -Good health
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Post by Judy on Jan 9, 2014 1:04:40 GMT -6
I discovered my tumor after suffering hip pain, body pain, numb hands, and one leg. An MRI showed it in the c3 c4 area and it was in the spine and about the size of a small cocktail sausage. Neuro doctors were amazed I was still walking. Had surgery Oct 15th so it has been 3 months. It has been difficult. I am 63 and was very active still working. I still have some pins needles numb hands if I stretch too much. Still wearing my collar as well. I have been told it is a very long recovery and I am beginning to believe it. Left side weak but I am improving each week. Does anyone know what the restrictions are after 3 months? How long before you can become fairly active again? Counting my blessings as I didn't end up in a wheel chair and they told me I was very close as I had just lived with all the symptoms the best I could for years. Hope everyone has a great doctor. I loved mine. He is in ND.
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Post by kate123 on Jan 22, 2014 19:59:11 GMT -6
Hey guys,
I'm so glad I found this group, It's so comforting to find others who are going through/went through the same thing. I'm 19 years old and I was to the point where I thought I was just going to have back problems for the rest of my life with no relief.. until I recently found out I have a schwannoma on my spine between C-2 and C-3 on the right side. I have had upper back and neck pain for over 3 years and have been told everything in the book.. until finally an MRI confirmed that I have what my doc told me was a rare spinal schwannoma. I have constant aching in my upper back and between my shoulder blades, as well as my right shoulder and neck. The pain has been getting increasingly worse, I am in school right now for pre-med and it's a struggle to just sit through a class.. by the end of the day the pain is so bad and I can't seem to find relief. It's so frustrating.. there is not a time when I don't have pain and it's hard for me to commit to school when i'm struggling with this on a daily basis.. and at this point I am willing to do anything to get relief.
I have visited 2 Neurosurgeons so far, the first one was of no help. She basically told me that my pain had nothing to do with my schwannoma, that it was all muscular and that she couldn't help me. I went for a second opinion and had a completely different experience. The Dr. was amazing, he has a great deal of experience with spinal nerve tumors and has done numerous schwannoma removal surgeries. He explained everything about my schwannoma and my symptoms to me in great detail.. and gave me options. He told me that I have had it for about 3 years because it is pushing on my foramen in my vertebrae. He told me that although schwannomas are slow-growing, as it grows it will eventually reach my vertebral artery which will be a much more serious matter. He told me that I could either wait, and have a follow-up MRI in 6 months to monitor the growth, or depending on my symptoms I could have it removed now. He prescribed me neurontin and valium for the pain, and scheduled a follow-up MRI in 6 months but to call if the symptoms worsened. He told me that my symptoms are without a doubt caused by the schwannoma, because my back muscles are constantly spasming and contracting. He told me that to my advantage, the nerve it's growing from is a "silent nerve", and post-surgery I would only experience a numb patch behind my right ear as well as some numbness on the top of my shoulder, possibly some muscle weakness in my shoulder as well. The bottom line is eventually I will have to get surgery, either now or later once the schwannoma has grown closer to my vertebral artery. My worry is why wait until the surgery could be more risky than it already is.
I am at a loss.. I am so sick of dealing with this pain and it is to the point where it has just become part of my life. My plans are to go to med school once I graduate, and I'm afraid I won't be able to pursue it with this holding me back. At this point I just want this thing out of me, I want to be able to feel normal and pain-free and rid myself of this burden. I have had to quit 2 jobs already because of my back and I just want to live my life the way a 19 year old girl should. I understand the surgery is very major, and I'm worried about the recovery, and also whether or not I will have relief. I have read stories about people who have had surgery and still experience pain sometimes worse symptoms such as tingling. If anyone has any input or advice I would GREATLY appreciate it. Any experiences post-surgery or who have been in similar situations.
Thank you so much
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Post by samuridude on Jan 23, 2014 11:24:39 GMT -6
Hey guys, I'm so glad I found this group, It's so comforting to find others who are going through/went through the same thing. I'm 19 years old and I was to the point where I thought I was just going to have back problems for the rest of my life with no relief.. until I recently found out I have a schwannoma on my spine between C-2 and C-3 on the right side. I have had upper back and neck pain for over 3 years and have been told everything in the book.. until finally an MRI confirmed that I have what my doc told me was a rare spinal schwannoma. I have constant aching in my upper back and between my shoulder blades, as well as my right shoulder and neck. The pain has been getting increasingly worse, I am in school right now for pre-med and it's a struggle to just sit through a class.. by the end of the day the pain is so bad and I can't seem to find relief. It's so frustrating.. there is not a time when I don't have pain and it's hard for me to commit to school when i'm struggling with this on a daily basis.. and at this point I am willing to do anything to get relief. I have visited 2 Neurosurgeons so far, the first one was of no help. She basically told me that my pain had nothing to do with my schwannoma, that it was all muscular and that she couldn't help me. I went for a second opinion and had a completely different experience. The Dr. was amazing, he has a great deal of experience with spinal nerve tumors and has done numerous schwannoma removal surgeries. He explained everything about my schwannoma and my symptoms to me in great detail.. and gave me options. He told me that I have had it for about 3 years because it is pushing on my foramen in my vertebrae. He told me that although schwannomas are slow-growing, as it grows it will eventually reach my vertebral artery which will be a much more serious matter. He told me that I could either wait, and have a follow-up MRI in 6 months to monitor the growth, or depending on my symptoms I could have it removed now. He prescribed me neurontin and valium for the pain, and scheduled a follow-up MRI in 6 months but to call if the symptoms worsened. He told me that my symptoms are without a doubt caused by the schwannoma, because my back muscles are constantly spasming and contracting. He told me that to my advantage, the nerve it's growing from is a "silent nerve", and post-surgery I would only experience a numb patch behind my right ear as well as some numbness on the top of my shoulder, possibly some muscle weakness in my shoulder as well. The bottom line is eventually I will have to get surgery, either now or later once the schwannoma has grown closer to my vertebral artery. My worry is why wait until the surgery could be more risky than it already is. I am at a loss.. I am so sick of dealing with this pain and it is to the point where it has just become part of my life. My plans are to go to med school once I graduate, and I'm afraid I won't be able to pursue it with this holding me back. At this point I just want this thing out of me, I want to be able to feel normal and pain-free and rid myself of this burden. I have had to quit 2 jobs already because of my back and I just want to live my life the way a 19 year old girl should. I understand the surgery is very major, and I'm worried about the recovery, and also whether or not I will have relief. I have read stories about people who have had surgery and still experience pain sometimes worse symptoms such as tingling. If anyone has any input or advice I would GREATLY appreciate it. Any experiences post-surgery or who have been in similar situations. Thank you so much “She basically told me that my pain had nothing to do with my schwannoma, that it was all muscular and that she couldn't help me. I went for a second opinion and had a completely different experience.” That’s a good example of how bad our medical profession has become. We need to question everything! “ I'm 19 years old and I was to the point where I thought I was just going to have back problems for the rest of my life with no relief.. until I recently found out I have a schwannoma on my spine between C-2 and C-3 on the right side. I have had upper back and neck pain for over 3 years and have been told everything in the book” I’m 53 and 6 months post, the doctors have been telling me ever since I was your age that very same story. Like most of us, neurological issues have to get pretty bad before the “insurance companies” OK a MRI.
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Post by WANDA on Mar 27, 2015 8:17:29 GMT -6
My husband had surgery on Feb 12, 2015 for a schwannoma tumor located between L1 & L2. The surgeon said that it had been there for numerous years because it was totally encapsulated with nerves comparing it to a ball of yarn. They say they didn't cut any nerves, but had to gently move all the nerves away from the tumor to be able to remove it. The surgery lasted for 3 hrs. He has total numbness in his lower abdomen which affects his bowels and urination. He was catherized for 5 weeks and finally had it removed this week but still has no feeling and is having to self cath. The surgeon said he couldn't tell him how long it would take for the nerves to regenerate because he is 70 yrs old and is a Type 2 diabetic, but he promised him the feeling will come back. He is not suffering any pain from the incision site and the pain in the back prior to the surgery is gone. Has anyone suffered this type of side effects from this surgery?
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PGC
New Member
April 28th, 2015, surgery for excision of schwannoma intraductal tumor t10-t12.
Posts: 3
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Post by PGC on Jun 28, 2015 13:58:50 GMT -6
Hi All,
Just wanted to post what I'm hoping is at least a partly successful story for a 57 year old man. Prior to this I was very active, xc skiing, walking running 5Ks and doing HIIT (high intensity interval training). My symptoms started in Mid September with very painful throbbing pain that didn't stop until after surgery. The pain was bad - couldn't sleep more than 2 hours a night, it hurt to sneeze or cough and driving (on Baltimore streets) was awful hitting any kind of bumps. I could sleep lying down and had to rig up a bunch of pillows on the couch. This eventually led to small blood clots in my legs.
All fall, insurance and the doctors insisted on looking at orthopedic causes (x-rays, CTs) physical therapy, chiro, while at the same muttering things like, "it sure doesn't look orthopedic to me." At one point the chiro said, "don't come back until you've seen an internist, there is something I cant fix that's causing your pain.
In January the ortho-surgeon ordered a full suite of MRIs, bone scans suspecting a cyst or tumor but by that time I was in such severe pain that I couldn't bear to lie down for the MRIs. Prior to surgery I was almost unable to walk even with a walker. My weight had dropped (mostly muscle) from 215 to 190. I finally had a MRI under anesthesia in early April that revealed the tumor. Surgery was on April 28th (two month anniversary, yeah) which was a T-10-T12 laminectomy to remove was proved to a schwannoma tumor. I had to lie flat on my back for four days and then on to in patient PT. That was rough but I was able to walk with a walker before leaving the PT hospital
Now I'm home, no real pain to complain about, the numbness seems to be lessoning as I regain upper and lower body strength. I've been walking a lot, almost 2 miles at a time. My only negatives are some lingering slow bowels (off of the senna now) which I'm treating with lots of fiber and magnesium and leg spasms (which actually feel good, they're like intense leg stretches) which happen mostly when getting up from a seated position. I'm going back to work on Monday and just trying not to rehab too fast (which is my tendency!) and to be patient. To help with that, I'm adding less intense activities to my therapy which include saunas (to help the legs and feet sweat which I've read is part of recovery), massage, acupuncture, flotation tank and Feldenkrais classes - which is a slow movement therapy.
Like many other's posting here, I'm anxious to get back as much of my prior capacities as I can as soon as I can but have learned that patience and listening to my body is important. Overall, I consider my self lucky and knock on wood that my relatively pain free recovery continues. I would definitely recommend surgery to remove a schwannoma, but ask your surgeon lost of questions and go with the top local expert you can find.
Peace,
P
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Post by yonirn on Mar 22, 2016 17:17:07 GMT -6
So, I am posting here because I don't know where else to go. I have a C1-C2 schwannoma that was discovered last week and am not sure which option to go with, either radiation or surgical removal. It isn't yet encroaching on the spinal column but due to my age (42) the doctors said it's better to remove it than watch and wait as it is only going to continue growing. I am reading like a madwoman about risk versus benefits of both, but I am looking to hear from people who have had both done. Anyone wanna help?!?!
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