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Post by gary on Feb 9, 2015 6:18:03 GMT -6
all that has been mentioned so far is monitoring for the other small tumors. the doc is supposed to call me wednesday, he already told me it was a Schwannoma, but he is to provide the details. in mid march i see him for the post op. this has not been a good time! samuridude - you sound a lot like me (52 male/gym rat). heck i saw a doc 10 years ago for a sprained ankle. it was my back pain (herniated disk)/gait/balance that prompted me to go to a doc! however i do sense i am regaining balance/coordination but feel only about 60%. but each day things seam to get better, but i am nervous. mj
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Post by Brenda on May 4, 2015 18:22:56 GMT -6
I've found that very few people on the board have Schannoma tumors. In fact if I remember correctly I have only come across two. My name is Charity, I live in Utah and on August 13, 2004 I was diagnosed with a nerve sheath Schannoma spinal cord tumor. Once diagnosed I could track the symptoms back to fall of 1999 when I became pregnant. When I was diagnosed I had just a few days to prepare for surgery because of how compressed my spinal cord had become. The NS was shocked I was still walking. In that few days I learned a lot about this type of tumor. Schwannoma tumors are rarely cancerous. Only about 2% are. They develop from wacked out cells surrounding the nerves. In my case I was told that the tumor started on a nerve running alond one of my ribs right by the spine. I also learned that they are very slow growing. I would love to meet other people who have been diagnosed with this same type of tumor. Charity M.
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Post by Brenda. D. on May 4, 2015 18:24:43 GMT -6
Hi Charity, What symptoms did you first notice with your pregnancy? I am wondering if they are the same as what I experienced?
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Post by jeff slocum on May 21, 2015 19:22:26 GMT -6
hello , im a schwannoma tumor survivor actually twice. i had a large one removed in 2005 and after a year i had regrowth and went through Gamma knife in seattle in 2011.
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mcguyverdan
Junior Member
L5 and S1 laminectomy 5/19/2015 removing 99% of pecan sized intradural schwannoma.
Posts: 9
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Post by mcguyverdan on Jun 13, 2015 17:31:49 GMT -6
Not glad to have joined the club! At least I may be able to offer some hope. I sat this afternoon and read all 18 pages of this thread... Every tumor is different, and everyone finds their path here a little differently, and none of us joined this club by choice. In early February of this year, I felt like I may have pulled a groin or left butt muscle. I had had some on and off back pain for over a year, but since I am a guy who is getting a little older, and I do stupid things on a semi-regular basis (like crash a motorcycle here or there), I figured it was just mis-spent youth catching up to me. By the end of Feb. I decided to go to the doctor (doctor #1) for the first time in a couple years because the pain was getting worse, I couldn't sleep well and it got bad when I sneezed or coughed. I thought I may have an abscess in my colon. X-Ray good, blood work good, "come back in a few weeks". Doctor #2 -gastrointestinal guy - mid March - "It seems more musculoskeletal, let's get a MRI" ... "(Misses the tumor on the MRI) Looks like a tear in your labrum (hip cartilage) go see an ortho. Guy". Doctor #3 - (misses the tumor visible on the first MRI) "I am not sure but let's shoot your hip full of cortisone for the tear and it should feel better in a week or so"...getting worse, can't sleep more than a couple hours at a time, constant pain... Doctor #3 "confused... Let's get another lumbar MRI, maybe it is a disc problem"... I go see my wife's chiropractor, Doctor #4 - "You are really tight, probably just muscle spasms from a bulging disc, let's loosen you up and stretch you out"...made it worse (never did trust those voodoo guys anyway) MRI Results - on my 50th birthday - "You have a tumor in your spinal column, go see the neurosurgeon". Doctor #5 "We need more and better MRI with contrast" (finally) I spend 2 and a half hours in the tube getting scanned from my brain on down and they see the bright light of a nice fat pecan sized tumor in L5. I am on narcotics every 4 to 6 hours and can barely walk with a walker by this time and when we meet with Dr. #5 he says "we can monitor it for a few months because these grow slowly, or we can go get it because it is only going to get worse." GET IT OUT!!!! No hesitation. May 19, 2015 neurosurgeon #5 and neurosurgeon #6 spent 7 hours cutting out "99%" of the little bastard. Missed 2 weeks of work, on light duty, can't bend lift more than 10 pounds, or twist, but I can walk, and SLEEP, pain free (with no drugs) except for surgical site pain. Take from this: 1. YOU have to be your own advocate! The doctors are swamped and treat everything based on most probable causes first. 2. Don't take "It will get better in a couple weeks." for a response...it won't get better! 3. If you gan get rid of the little bastard early enough, you have a much better chance of full nerve recovery. 4. Hospital food may kill you if the medication interactions don't. 5. This is just my unqualified opinion...Pray ALOT, and have everybody you know do the same... I think it helped, at least I wasn't as afraid.
25 days, 11hours and 28 minutes since surgery... Taking it one day at a time and thankful for every one.
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Post by millelacskay on Jun 19, 2015 7:18:39 GMT -6
Haven't been on here in a while so am posting a quick update on my status. I had 3 surgeries in 2010, 2011 and 2012 with the last one resulting in 100% resection of my schwannoma at L5. I had follow up MRIs in 2012 and 2013 and have not had any since as I can't make myself go into that "tunnel" again for the 2 1/2 hours that is required. But - no new symptoms, just the numbness in my upper leg and sometimes in my toes. I went through a lot of what you did mcguyverdan on the way to discovering the tumor - best of luck with your recovery!
I am walking Grandma's Marathon tomorrow for the 8th time since I turned 60 so I guess my final surgery was a success!!
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Post by Gerald on Jun 22, 2015 21:53:49 GMT -6
HI Guys,
I too have had Schwannomas ( 2 actually). One was at L1 and the second at L4. I was diagnosed in October 2013 after suffering for 6 months of terrible lower back pain. I went and saw my GP in June 2013 and had an xray which showed I had a buldging disc at L4. I was told to take it easy and have a pain relief. I was given, Mersyndol Forte and Lyrica. Didn't help much when I was travelling to the USA on a family hoiday which was planned for 1 year before. Nevertheless I took the meds and went on our holiday.
BUt, things got worse very quickly on our trip. I was unable to get out of bed in the morning and stand up straight for about an hour, I couldn't sit down for more than 2 mins, couldn't cough, couldn't laugh, hell, I couldn't sneeze without almost falling over. When we got back from our holiday ( yes, I was stubborn and refused to go the OR in the States) I went and saw my GP again stating that I was worse. He finally referred me to a NS. I didn't get to see him till October. He ordered an MRI and the next morning he called me personally asking me to come and see him immediately!!! (now you know that's not good news).
He advised me I had 2 schwannomas, the l4 schwannoma was causing me all the issues and was 8.5mm and impinging me badly, he had no idea how I was walking and reckons it was about 10years old. The second one was 1mm and I had no symptoms yet.
I had a double laminectomy on the 8th Dec 2013.
I have numbness on the outer side of my left leg below the knee down to my ankle and my big toe and all along the side of my foot just before my heel.I still get shooting pains at times which is annoying but I am able to do pretty much anything. I get the occassional sore backs now and then, especially in winter.
overall, I am happy with my outcome, don't be afraid to get this sorted. Parts of numbness is a tiny price to pay for nil pain.
Good Luck to all.
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Post by Kevin Akitt on Jul 29, 2015 8:05:21 GMT -6
Hi there, I am English and I had a large schwannoma tumour at L2/L3 which was removed by Mr Gerber at the Newcastle General. I had suffered for several years before the operation and did not get much in the way of help from my local doctors, my symptoms began with a tingling sensation down my legs and feet, the tingling spread in to my arms, hands and left side of my face. Eventually those areas that had tingling began to turn into crushing pain, it took me ages to get a diagnosis and I ended up in a wheelchair and I did not get a wink of sleep for 2 years due to pain. However the operation was a success and I can how walk again, my tumour was found during an MRI scan that insisted that I had to my local NHS providers (my consultant told me that there was nothing wrong with me and it was all in my mind!) - its been 10 years since my operation, but unfortunately now I have a tumour on my right foot close to the ankle joint this hurts a lot and I have found out that I have another tumour located at the bottom of my spine at S2 - I have seen the MRI scans of this and I am of course deeply worried about this. To help with sleep I take a small blue tablet called Amitriptyline dose 10mg and for night cramps take Quinine Sulphad dose 300mg - I do and it helps me a lot - hope this helps everyone - Regards KEVIN
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Post by Becky M on Aug 15, 2015 21:40:04 GMT -6
I have also had schwannoma's. I have had two tumors, one at T2 and another at T6-9. Also have Neurofibromatosis on my hip. My surgery was back in 2002 and 2004. Tumor on my hip watching for now.
Becky M
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Post by emmanuel on Aug 27, 2015 22:44:29 GMT -6
had benign Spinal Schwannoma Tumor 9 CM length from T10 to T12 area intradural extramedullary (Thoracic Spine, outside spinal cord). I have been treated at St. Vincents Public hospital, Melbourne. First Surgery with T10 to T12 Laminectomy done by Neurosurgeon Dr. Paul Daniel Smith on 11th Oct 2011 and Tumor subtotally removed (90% removed). Residue at T12 level posteriorly, intra-dural extra-medullary, growing slowly. Neurosurgery doctors in the routine visit advised me to have another surgery to remove the tumor completely. I agreed. They decided surgery and I gave my consent over phone for the surgery to remove the tumor completely. I have undergone second surgery on 13th June, 2014 in the same site for the total removal of tumor. Second surgery was done by Dr Paul Daniel Smith and Dr. Yagnesh Vellore and Dr.Yoni Goldenberg was the HMO. After surgery they told me that about 80% of the tumor removed as the tumor is adhered to spinal cord. They decided follow up radiotherapy with Dr Micheal Dally. I was shocked. I was on the way of recovery. I received an appointment confirmation call from Epworth Radiation oncology, Richmond and had an appointment with Dr. Michael Dally on 10th july,2014 . The doctor told me that the treatment is for 15 days at 1.8 GY per fraction radiation totalling 27 GY Radiation. He tried to persuade me about the benefits of radiation therapy over surgery and I would not need to spend any money for that in this private healthcare facility. He told me that he will organise the funding arrangements for the treatment. I started having some doubts about them that why they are giving me free treatment. After few days I received a phone call from them saying that the radiation treatment starts from 5th of August 2014 and it is for 28 days instead of 15 days and the total irradiation will be 50.4 GY. 50 GY Radiation is too much for spinal cord. Delayed radiation myelopathy may develop. I talk to many doctors and all of them told me that benign Schwannoma tumor will not be responded to radiotherapy and radiotherapy is not a treatment of choice. They also told me that Schwannoma can be removed completely. So I refused to undergo radiotherapy.The real shock was when I received the post operative MRI result dated 18/07/2014. This result shown that the tumor is unchanged in size and morphology since pre operative MRI study dated 13/06/2014. They did not remove the tumor but took sample for histopathology. I sent complaint letters to the hospital. The hospital sent me reply in which they denied all my allegations and mislead me again that the tumour cannot be removed as it is adhered to spinal cord. In the same period I had consulted with some neurosurgeons and they all advice me that it can be removed completely without any problem. I went to India and get admitted into Apollo Hospital Chennai where I undergone my third and successful surgery on 31/10/2014 in which the tumor is completely removed without any problem. I discharged from the hospital on the fifth day of surgery with complete clinical recovery.I am of the belief that it could be removed completely in the first surgery but left a part, did not removed even in the second surgery, then without informed consent decided to send me for radiotherapy is an act of research and experiment to know the rate of growth of tumor and how it respond to radiotherapy.I am the victim of this experimental treatment. Dr Paul smith treated me like guinea pig. I believe this is a clear case of medical malpractice, breach of trust, ethics and duty and conspiracy for clinical trial amounts to criminal acts of battery, fraud and cheating. This is a big human rights violation as well. I would like to let all of u know that there has been some quality improvement steps taken by St Vincent hospital. I understand from media release in May 2015 they decided to install a costly state of the art Radiation facility. I think that is because of my complaint. Now the chances of Surgeons taking the patients out to private health care to manipulate illegal treatment events would stop. emmanueljaise@gmail.com
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