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Post by Lori on Apr 23, 2014 8:52:04 GMT -6
One year ago this week my 17 year old son had a lacrosse ball size Schwannoma removed. It was located between his rectum and tailbone. Dr. Victor Garcia at Cincinnati Children's along with several other specialty surgeons removed the tumor with no adverse affects. He has healed completely and even went on to run Cross Country the following fall for his senior year in high school. Prior to removal he had leg spasms and severe constipation. Can't say enough about the great care from the people and Doctors at Cincinnati Children's.
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Post by Tallyboop on Apr 24, 2014 22:27:03 GMT -6
6 months ago I was diagnosed with a 3.25 x1.25cm tumor in my canal (L3/L4). Prior to learning of it I was in excruciating pain for 7 months in lower back/hip throughout left buttock all the way to ankle. Truly sleeping hour (s) at a time and couldn't run stand up, etc. it was sucking the life out of me and my family. xrays, chiro, PT, blood tests, nothing until i requested MRI from former PCP. MAN DID I WAKE UP WHEN I READ MY OWN RESULTS FROM RADIOLOGY stating tumor modt likely neurofibroma. thanks to PCP sitting on report for 5days. Anyways, I was the guy that was terrified of "what if medical scenarios", father of 3, husband, active and everything seemed to crumble at that moment. I automatically thought the worst and started to panic. I immediately reached out to NSurg in Tampa (Juan Uribe USF MEDICINE) and learned it was in a bad place (cauda equina) and he recommended resection. Even with the best imaging there was no telling if it was intertwined or pressing on nerves, but was risky surgery no matter what. I felt very comfortable with him/his team. so i decided to go ahead with full laminectomy surgery at the end of May at TGH. Prior to surgery I did find much relief with Meloxicam on consistent basis at night with occasional cyclobenzaprine. Thank goodness as I was able to continue working supporting my family and strengthen my spirituality, health, and appreciation for everyday of LIFE. Something I always took for granted before. So to final results, Dr URIBE had success in 100% resection which was diagnosed as schwannomas. 5hour surgery, minimal evasive with no muscles being cut or hardware going in. I was out on day 3 and walking more and more day by day. Had little bit of CSF deficiency first day out, but that was about it. Hardly sat other than to rest and was off all meds by day 5 of surgery. No neurotin oxy, anti-inflam! No nerve issues pain other than a little stiffness for first 2 weeks. Activity was the key! I was back to work in 6 weeks and already back in active lifestyle pain free and can do anything I want per DR. I feel a renewal of health! I know I'm fortunate with this outcome, but wanted to share my story do it may help those who are worried about the worst and need some news of hope. FAITH, HOPE and LOVE was my rock and through that I became THE VICTOR not the victim as I was the 1st couple weeks. Amazing how the mind and higher power works!! Sorry for the novel:( So glad I found this site:)
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Post by Tallyboop on Apr 24, 2014 22:48:35 GMT -6
I will be having surgery 5/22/2014 on a schwannoma tumor on my thoracic spine by my T4 that measures 4.2 x 3.5 cm. I'm 65 yrs. old and really worried about the pain after surgery and if there will be any damage. I seen where you had surgery in Tampa and that is where I'll be having my surgery at. TGH. Dr. Dakwar is doing my surgery. Reading this about you having the surgery makes me feel better. I have been worried sick about it for over a month. I really haven't had much pain but starting to feel some now. It all started with an X-ray. They thought I had a nodule in my lung. After CT scans, Pet Scans, biopsy, they did MRI and seen it was on my spine. So glad I found your post as now I feel some what better about having surgery on this. Hope your still doing good. Thanks
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Post by innerpeace on May 19, 2014 23:10:09 GMT -6
Hi Tallyboop, You say you're going in for surgery on 5/22/14. I wish you the very best. Just got out of Mass General in Boston for the removal of what turned out to be a schwannoma at T4 - T5. They fused from T2 to T6 with some rods and screws. They were supposed to remove a rib, but didn't. Don't have the path report back, but we assume it is benign.
The pain is there, but i can get my mind off it. Good luck and many blessings!!!!!!!! Let us know how it goes. !
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Post by Tallyboop on May 29, 2014 20:16:46 GMT -6
Hi innerpeace!!!
So glad to hear from someone. I had the surgery and stayed in hospital 4 days. Been home for 4. Doctor said he got all tumor and said it was really big.
Right now the pain is awful!!! I can walk no problem. I've had surgery before but I have to say this is a rough one. I'm also waiting on Pathology. They did take out a rib and fused the 3, 4 & 5 with rods and screws. I think I'm doing alright, I guess I wasn't going to hurt after a week. Lolol I'm really hurting just wondering how long it take to get back to normal?
Doctor said it's benign and said I would hurt because they had to take a good bit of rib to get it out or they would have had to cut from front to back just to get to it.
Hope your feeling better and many blessing to you.
Thank you so much for answering.
TallyBoop
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Post by lw on May 30, 2014 13:16:05 GMT -6
Hi Tallyboop,
Getting back to 'normal' can take weeks, months or even years. I'm sorry to hear that you are in pain. This is probably a silly question but are you on any medication? I find that tramadol helps a lot, although there are other drugs that can also help with mechanical and neuropathic pain. The fact that you can walk with no problem a week after surgery is extremely encouraging. A lot of the pain you are feeling now may well fade with time as you are still in the early days of recovering from the operation itself. It's an huge operation, give yourself time!
Best of luck,
Leah
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Post by anniebjb09 on Jun 6, 2014 19:53:13 GMT -6
I am also elated to have found this site. I have been having back pain for years along with shooting pains down my neck and back but just assumed it was because of the heavy book bags. To make a long story short, I have a 4 cm tumor and 3 in diameters on my spine and will be having surgery on the 24th of this month. In the beginning I wasn't afraid, but as the time draws near, I am afraid of what will happen if the nerve becomes damage during surgery.
1. Can some one tells me what it means when in regards to walking if part of the nerve is damaged? 2. How long does it take after surgery before one is able to drive? 3. After surgery, does one lie on his or her back, stomach, or side after surgery?
Any feed back will be appreciated.
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Post by Kristy on Jul 9, 2014 11:33:06 GMT -6
It has been a very long time since anyone has responded to this forum however I thought i'd join the discussion on Schwannoma tumor experience. I, at the age of 28, found out I had a schwannoma. It was located in my spinal cord at C3 and C4. I went most my life, Dr says, with this tumor in my neck, "i'm suprised your walking" Dr explained. He stated the tumor grew with my body and that's why it was manageable. I woke up one day at 28 with a stiff neck. I then started to experience pain. I went to my primary and he stated I was too young to have any issues and I should buy a different pillow. Well, I followed his direction. Before I knew it I was having crippling muscle spasms in my neck. Life as i knew it was over. Every time i'd lay my head down i'd have pain but would wake soon after with the spasm. Walking was the only thing that would help. I couldn't sleep, I was sleep deprived and on all types of medications that weren't working. None of the ER Dr's could figure it out and would just send me home with more medication. I decided to go to the chiropractor, which helped but the pain would always come back. Eventually he said, "I'm not helping you. I reccomend an MRI." That's when they found the tumor. I thank my lucky stars my chiropractor cared enough to recommend an MRI. Surgery was scheduled one month later. I had an amazing Surgeon that comforted me and took the time to listen. It was a successful surgery and recovery was quick. The only major problems I had was the post op. depression. I have some PTSD from the trauma I experienced before learning about the schwannoma. Otherwise physically i'm doing quite well. I still have some stiffness in my neck and I get muscle knots at the incision every once in awhile, but it's a walk in the park compared to before. I finally have my life back. I wanted to post this for anyone else considering going through surgery because good outcomes do happen. I'm able to sleep, walk, run, and do everything I once thought was over for me. I do need to consider the possibility of it coming back. My Dr's feel very confident i'll live a full and healthy life, however.
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Post by samuridude on Jul 10, 2014 8:02:09 GMT -6
The ER Dr's with Phd's couldn't figure out that you needed a MRI, but a chiropractor without a Phd thought you did? This seems to be a recurring theme with MRI's. I spent years in pain and when I couldn't walk at all before they finally did a MRI, finding the tumor.
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Post by Christine C on Jul 16, 2014 10:09:14 GMT -6
It has been a very long time since anyone has responded to this forum however I thought i'd join the discussion on Schwannoma tumor experience. I, at the age of 28, found out I had a schwannoma. It was located in my spinal cord at C3 and C4. I went most my life, Dr says, with this tumor in my neck, "i'm suprised your walking" Dr explained. He stated the tumor grew with my body and that's why it was manageable. I woke up one day at 28 with a stiff neck. I then started to experience pain. I went to my primary and he stated I was too young to have any issues and I should buy a different pillow. Well, I followed his direction. Before I knew it I was having crippling muscle spasms in my neck. Life as i knew it was over. Every time i'd lay my head down i'd have pain but would wake soon after with the spasm. Walking was the only thing that would help. I couldn't sleep, I was sleep deprived and on all types of medications that weren't working. None of the ER Dr's could figure it out and would just send me home with more medication. I decided to go to the chiropractor, which helped but the pain would always come back. Eventually he said, "I'm not helping you. I reccomend an MRI." That's when they found the tumor. I thank my lucky stars my chiropractor cared enough to recommend an MRI. Surgery was scheduled one month later. I had an amazing Surgeon that comforted me and took the time to listen. It was a successful surgery and recovery was quick. The only major problems I had was the post op. depression. I have some PTSD from the trauma I experienced before learning about the schwannoma. Otherwise physically i'm doing quite well. I still have some stiffness in my neck and I get muscle knots at the incision every once in awhile, but it's a walk in the park compared to before. I finally have my life back. I wanted to post this for anyone else considering going through surgery because good outcomes do happen. I'm able to sleep, walk, run, and do everything I once thought was over for me. I do need to consider the possibility of it coming back. My Dr's feel very confident i'll live a full and healthy life, however.
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