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Post by emmanuel on Aug 27, 2015 22:46:26 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.
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Post by joshrissa on Oct 8, 2015 9:28:32 GMT -6
I also had a large schwannoma tumor at L2 nerve root, I was diagnosed in December at the age of 40, I can also trace my symptoms back to my first pregnancy in 2000 when I was 27. I chalked the pain up to pelvic pain, after the pregnancy it seemed to go away after a few months and then returned worse with each pregnancy to the point I could barely walk with my last pregnancy in 2012. After that pregnancy the pain did not go away, I started having extreme hip pain and leg pain which worsened causing groin pain and numbness as well as foot drop. The pain worsened over the next two years to the point that I could not sleep, I tried physio, chiropractor while I was waiting to see an orthopaedics surgeon my GP diagnosed as bursitis. In December I seen the orthopaedics surgeon and he ordered an MRI after my hip xray was negative. He called me the day after my MRI and told me the results I seen the NS on the Monday first thing in the morning, my surgery was late January as I had a vacation I did not want to cancel. He had to severe a nerve to get the tumor out, so I am left with numbness and severe nerve pain on my right leg. My pain has never left after my surgery. My last MRI was couple of weeks ago and there no tumor regrowth, just scar tissue. He did not know the cause of my continued back pain. I have never had a full MRI scan, so I asked for one and it has been ordered, I am curious to see if I have any other tumors. Has anyone ever been found to have another schwannoma in a different area?
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Post by toulousain on Oct 15, 2015 14:42:05 GMT -6
Hi. I'm was just diagnosed with a Schwannoma on my c4/c5. I'll be 28 in just a couple weeks and I've had pain in my left neck/shoulder all through my twenties... Possibly even since my late teens. I'm having surgery in 10 days and am just curious about recovery time. How long should I expect to be out of work? The neurosurgeon said up to 3 weeks, but I'm having a hard time believing I will be out for so long. I should also mention that the tumor has degenerated one of the vertebrae facets. Because of this I will also have my c4 and c5 vetertbraes fused together to prevent my spine from slipping out of place in the future. Anyone who's had a similar surgery please share your experiences with me. Thanks so much. Hi, sorry but I have my surgery for aC4/C5. Could you help me to understand the consequences for my future? ...Pains, time of recovery....all the positives and negatives of the situation. god bless you
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bryang
Junior Member
Posts: 11
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Post by bryang on Oct 15, 2015 14:55:14 GMT -6
My immediate recovery was painful but only because when I got home from the hospital I immediately physically interacted with my young kids when I should have been taking it easy in bed for at least a week. I needed strong painkillers, alot of them, vicodin worked for me and luckily I'm not an addictive person. After a while plain tylanol worked. Its been almost two years now, I'm 41 and I'm basically fine with residual sensations. They cut away a lot of nerve roots coming off the spine with the tumor so that region will always be kind of numb but it doesn't bother me. Its not debilitating to me. Sometimes there is a small painful sensation if I use a muscle back there that I ussually don't but it's not a big deal.
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randy
New Member
Posts: 1
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Post by randy on Jan 6, 2016 20:44:52 GMT -6
This message is for bryang. I sent you a message through this site. I would be very grateful if you could contact me with the information about the doctors you consulted with and used for your surgery. I would like to have my surgery in NYC as well. Thanks.
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Post by Let on Jan 8, 2016 20:28:10 GMT -6
Hi! I'm from the Philippines 48 y/o diagnosed with schawannoma T12 and scheduled for laminectomy resection of tumor in a weeks time. It all started as a feeling of thickening on my right foot sole. It didn't bother me at all thinking it was due to my new Birkenstock. It was after a 2-3 months around October 2015 that both my soles have developed the same feeling of numbness and thickening. I also noticed that both my legs seem to be wobbling and seemingly weak. I love to walk and having this unusual weakness, made me felt so tired which I attributed to my stressful workload and taking care of my kids. So I have consulted a GP and did lab works and yielded results that were not significant enough to cause me these symptoms. At first, I thought it was only due to low potassium or high uric levels which led me to take Vit B complex daily. Late November 2015, I have opted to take time off from work due to the mental and physical stress that might be causing me these muscle weakness that kept me feeling overfatigued and drained everyday. Thinking of resigning from my job, fortunately did not officially filed otherwise would have lost my health benefits. I also consulted a rehab Doctor who requested an MRI which I underwent in one of the good private hospitals in Manila. There it is, a 1.1x1.2x1.5 intraspinal extramedullary nodule severely compressing my spinal cord aside from a few mild disc bulges at different lumbar levels. It says right there on the impression, it stated main considerations are meningiomas, nerve sheath tumors, schawannoma, neurofibromas. Incidentally, A 1cm liver lesion/cyst were seen. I had a repeat MRI with contrast as suggested for further evaluation of the mass which really enhanced the tumor with full highlight . Consulted a neurologist and was advised to see a neurosurgeon. I was really concerned and confused but kept myself strong inside. Good thing I have a high tolerance for pain and refused to take pain meds at all. It is just the weakness and hip pains that occasionally bothers me. Noticed sea water relaxed me a lot and did not feel any discomfort at all during the trip. I am hoping and praying that my surgery will be 100% successful. Btw, we have very good neurosurgeons if not the best here in the Philippines. I still have another appt with my NS for details/ costs that I need to understand before I will be opened up. Prayers and keeping the faith really keeps me positive.
Hear from me again soon. Nice to know there is a venue for this kind of life's challenges.
God bless us all...
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Post by Stephen Olson on Jan 22, 2016 16:21:40 GMT -6
I had an Schwannomas tumor removed from inside my spinal cord on September 1st 2009. I was working with At&t on New Orleans Louisiana at the time I located the tumor. At the time I was a Service Technician. The company allowed me to move back home in Mississippi to be close to family and friends by the time I had this tumor removed from inside my spinal cord between L1 and T3.
By the time I had the surgery I found out that the tumor grew so large that it busted out from inside my spinal cord and wrapped around the exterior part of my spinal cord at about seven times.
At&t only allows me three months to recover after the surgery before they gave me an option to either quit At&t or Come back to work.....
In order to be close to my family After the surgery At&t forced me to leave the job as a Service Technician And forced me to take a job as an Outside Plant Technician.
I managed to work for the company for 5 more years until the hard labor job being a lineman made the pain barrier very difficult to even be at work and later to the point where
I could not bare standing up for a maximum of 1 hour before having to lay down or else my legs would start to go out from under me.
I begged the company to transfer me to a desk job but this company doesn't give a crap for their employees.
If you have any questions about the Schwannomas tumors feel free to email me at stephen.olson@eagles.usm.edu
Thanks and best wishes and God Bless
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Post by Texas Mom on May 4, 2016 14:24:50 GMT -6
I had an intradural spinal schwannoma at my L3 and L4. I had emergency surgery the week it was discovered back in 2011. Unfortunately one surgery turned into 3. I had horrendous neuropathy for just over a year but it finally went away. I'm hoping and praying that the tumor doesn't return. I don't honestly know whether it was a subtotal removal or a total removal. That scares me a bit...
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Post by Puhtreece on May 6, 2016 18:41:58 GMT -6
I also had a Schwannoma removed several years ago. I wonder if you have experienced Restless leg syndrome?
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Post by echo123 on May 12, 2016 9:04:36 GMT -6
I was having numbness and pain in my legs. First primary care doctor (I have HMO) told me I was dehydrated and should drink more water. He refused to refer me to specialist. Obviously, I switched doctors. I was referred to neurologist by new pcp. Had multiple MRI s. They found 2 cm tumor between L1-L2 . My first thought was that they had mixed up my results. Neurologist said we'll repeat tests in a couple of months. Yep, it was really there. Got referred to a neurosurgeon. Seemed really capable but I went to other neurosurgeon for second opinion. This other doctor had a really bad toupee, so my first reaction was if he doesn't care enough to buy a proper toupee, he lacked the esthetics to operate on me. Also woman in waiting room told me he botched surgery and she got infection and now has a shunt to her heart to deliver antibiotics. Yikes!!! So I went back to neurosurgeon #1. Had tumor removed August 2015. Neurosurgeon had to cut extra deep because schwannoma was in conus. Was in the hospital for a week, then went home and stayed in bed a long time (yay Netflix!) still having issues. Probably tmi, but I can't bear down and go to bathroom. Numb along center of my butt. Shooting stabbing pains in back, numbness and weird sensations in my legs. Things have improved since surgery, but NS said he cut extra deep to remove Timor to spare me radiation, so it will take time for nerves to regenerate. I walk with a cane and tire easily. NS said it could take up to 2 years but he feels I'll recover completely. I'm not thrilled about my current situation, but I would have ended up a paraplegic without surgery and I'm grateful that this is the best possible outcome for now.
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