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Post by Ivy on Mar 29, 2017 17:24:09 GMT -6
Hi I'm glad I found this board. I was recently diagnosed with a giant schwannoma at t3-t5 eroding the veterbrae and invading the 4th and 5th posterior ribs. It was initially first thought by the doctors that I had lung cancer that had spread to my spine. I was told a benign schwannoma was as fortunate a diagnosis possible considering the siZe of my tumor. Obviously I'm more than happy that I don't have cancer but I am scared stiff for my coming operation next week. I'm only 29 and I did not see rib removal and fusion as part of my future. Not to mention possible neurological problems. I hope I can be as strong as everyone on this board! I don't wanna be on pain pills my whole life:( Hi .how are you? Did you go for the operation? How is the operation is it successfull? How are you feeling now? . i also diagnosed with giant tumor it is supposed to be benign schwanoma and it invaded to the t2 and t3. I was wondering is there any option to shrink the tumor first before operation. If anyone has that information could you please Rmail me the infomation my email is: vantage.poin@gmail.com. Thank you
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Post by Ivy on Mar 29, 2017 17:43:41 GMT -6
Hi marsha how are you? Have you done with the surgery to remove the tumor? If you did How is it after surgery done? I have giant schwanoma tumor outside the t2 and t3. Can you tell me your experiences? My email is: vantage.poin@gmail.com. Thank you I have been diagnosed with a "likely" schwannoma at T2. It started with a stabbing pain in my shoulder and upper arm if I moved a certain way. Five months later I have a diagnosis and the pain seems to be more generalized. If I bump my shoulder or move my shoulder back the stabbing pain is very sudden and I almost have to lay on the ground. I saw a post earlier about someone having a lipoma also. I have had a large lipoma in my lower back for almost 30 years. It has never bothered me, hum, is there a link? Anyway, has anybody had this kind of pain? Does anything help? How long is out of work recovery after surgery? What type of surgeon does the surgery? My primary care doc is sending me to a ENT. That just don't make sense to me.
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Post by Ivy on Apr 26, 2017 0:01:01 GMT -6
Along with removal of the tumor ,I had a fusion at L3-L4. I also have mediastinal tumor that attach to the spine.. can you tell me which doctor that operates you? And what type of painkiller that they use since for spine surgery we cant use epidural ..
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Post by Christi on Jul 18, 2017 16:45:55 GMT -6
Hello! I had a laminectomy on June 19, 2017 to remove a walnut size schwannoma (s1, L4, and L5). Currently, my restrictions are, no lifting, bending or twisting and I can't submerge in water. I am 39 and have been running for about 10 years (I ran all the way up to the day before my surgery).
I know everyone is different, but when do you think it would be a plausible time frame to run again? (Or do some kind of physical activity like swimming or cycling?) The neurosurgeon said that I could walk as much as I wanted and I have been walking 3-5 miles a day...and I'm still going in sane without getting a cardio workout in!
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Post by anniebjb09 on Jul 18, 2017 17:43:09 GMT -6
Hi Christi,
I had a very large one removed in 2014. It's great to hear that you are doing a lot of walking. I felt like Tim Conway for a long time. Take it easy and slow. I will say that I read an article that said people who had frequent massages healed faster after back surgery. You may want to try those. I received 30 minutes twice a week, in which she stretched and massage that area only. It really worked.
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Post by Glenn on Oct 9, 2017 9:30:10 GMT -6
My symptoms started last fall with lower back pain and the feeling like my cell phone was vibrating in my left front pocket. I thought it was a disc issue. I was under chiropractic care and acupuncture. This did not help. Then I would be awakened at night with the most awful pain in my back. Felt like a knife.Then I started having urinary retention and ED issues. My chiropractor said it was best to get an MRI. MRI showed a very large mass at T12/S1. I was refered to an NS in Texas. He was ausome. Said I had a ginormous tumor and it needed imeadiate removal as my spinal cord was getting totally pinched off. April of 2017 surgery. Surgery went well, 5 days in the hospital, a few months of recovery and 6 weeks of PT. Urinary problem solved right away, ED was slow to resolve. Now I am having simular symptoms on the right side. Tingling nerves, urinary retention, and some ED. I have a permanently numb left upper thigh and I get phantom nerve pain there often. I happy with the results so far but fear something may have returned. I get a follow up MRI in a few months.
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Post by MandM on Dec 11, 2017 11:10:42 GMT -6
Hello everyone. I am hoping people are still on this board! I had surgery in 2014 to remove a "hot dog size" schwanoma tumor. For years I believed I just had sciatica, and had tried everything to get rid of the pain to no avail (chiropractors, pain medication, etc). It amazes me that none of my doctors ever tried to look further for the cause of my pain other than just taking an x-ray! My husband actually had to demand an MRI before I finally had one done and when diagnosed, surgery happened within days as it was so large and intangled into my nerves. I was warned there was a good chance I could possibly become paralyzed from the surgery so I was scared to death. I had a laminectory and fusion from L1 to L4. They had to cut my L3 nerve to remove part of the tumor which resulted in my left leg now being numb from the knee down. Recovery was very difficult, and I was in the hospital for almost 2 months afterwards. When I was finally allowed to go home, I came home in a wheelchair. I gradually learned how to walk again and went from wheelchair to walker to cane. I'm happy to say that all of these are now gone and I can walk, however due to the permanent numbness in my leg, I can only walk short distances, and stairs and curbs are very difficult for me. I am grateful that I can at least walk (very!) but I am having a hard time with my new normal. I'm 54 years old and feel like I'm 80! I used to be a very outgoing person and I find myself isolating so much...can anyone relate to this? I look like a completely normal person until I start walking. I'm scared all the time that my leg will give out or that I will fall as my balance is not that great anymore either. I did physical therapy for many many months after surgery and credit them for getting me back on my feet, but I feel so depressed with this disability now. I'm not nearly as active as I used to be, and I have yet to find anyone who can really relate to my surgery. I've also had several things go bad since having this surgery (frozen shoulder, trigger thumb, and now carpal tunnel and TMJ!). I had another MRI done recently on my back and they did not see another tumor so I'm just wondering why I'm having all these other issues with my nerves! They all have in common the nerve getting tight and not relaxing on it's own. If any of you have any ideas on why this is happening to me, I would love to hear them. I'm really starting to struggle with depression!
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Post by Elizabeth Harris on Jul 16, 2018 9:56:56 GMT -6
Im very happy that i found this forum... Im very confused n scared... In 2009 While pregnant with my son i was sick n couldn't breathe.. they sent me for xray n found mass on my spine. after numerous mris, and biopsy they discovered it was a schwannoma.. long story short I went to a ns and he says i will need a thoracic surgeon because the tumor is growing out into my lungs n ribs on t6 and not down the canal.. He said he would assist the thoracic surgeon because it is on the nerve. but they would have to cut my chest n separate my ribs to get to the tumor.. After reading all the posts n the thought of them going through my ribs, im kind of opting out of surgery.. i would love 2 hear of anyone else who may have had same experience... Hi. I’m currently 2 weeks post op after having a Schwannoma removed from T5. I also was referred to a Thoracic Surgeon by a neurosurgeon bcuz of the location of the tumor. Only my surgeon did mine via a procedure called Video Assisted Thoracic Surgery (VATS) this required just st 3 small incisions near my ribs instead of the traditional open procedure you are describing. It’s far less invasive to have it done via VATS. The recovery time is supposed to be shorter & be far less painful. They did have to collapse the lung on the right side in order to have room to remove the tumor & that’s probably what is causing most of my post-op pain. I also woke up with a chest tube in for 24 hours which has been the most painful part of this. If you would like the name of my surgeon here at Northwestern Memorial in Chicago, please let me know & I will gladly pass it on to you. I highly recommend her because she is supposed to be one of the leading most experts on this VATS techniques. I’m very happy that I decided to go this route instead of the traditional thorocotomy route. I wish you the best of luck with which ever procedure you decide to go with.
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