Hello all! We are pleased to present our 21st case study - this one detailing the experience of a person who had two schwannomas removed from the back of their knee. We sincerely thank the person for sharing their experience, and taking time to write their story! - Neil
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1) How old were you at the time of your diagnosis?
28 Years Old
2) Do you have any history of Schwannomas in your family?
No
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I have two Schwannoma’s in the back of my knee, and have recently had the largest removed. The symptoms that lead to my diagnosis were extreme burning and shooting pains from my ankle to thigh, especially at night, and eventually after exercise as well. This went on for a year and a half, and it was very difficult for me to get my diagnosis. I persevered with going to the doctor repeatedly for the same issues, but was diagnosed incorrectly various times. I was finally diagnosed with having Schwannoma’s after having two MRI scans.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
I had my largest Schwannoma removed by soft tissue excision. I consider it very successful. The Schwannoma was confirmed benign and I can walk properly after a few weeks without a crutch.
5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
I think that it’s important to ask about the risks. I had a meeting with my surgeon prior to surgery in which I asked extensive questions about all of the risks so that I could make an informed decision about whether or not it was worth having surgery. I was mostly concerned with walking properly again and the risk of not being able to feel my leg. However, though there was a risk of numbness, everything has been fine.
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
Yes, I have made a positive recovery. I have had a lot of great support from my family and partner, and I found that this made a big difference at first because I needed a lot of help getting around. I also learnt quickly that if I didn’t eat a lot before taking my painkillers after surgery I would feel much worse. I was given exercises to do post-surgery and this was vital to my recovery. It was hard, but I did them twice a day and worked hard at practicing walking properly. I had a month off work and slept whenever I felt that I needed to, but I never gave myself a break from exercising daily.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
Yes, I have one tumor left but so far it is not affecting me. I can do more than I could before, as the schwanomma stopped me from exercising, sleeping and being able to get on with my life pain free. Now I feel like I did a couple of years ago, I can sleep without painkillers and can move better than before.
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Tuesday, September 1, 2015
Case Study # 20, Recovery from Schwannomas at C 7 and at T 8
Hello all! We are pleased to present for you this case study by an anonymous person who had a Schwannoma at C 7 and another at T8. This person wanted to offer their story in hopes that it may assist others - and we thank them sincerely for taking the time to write it all down for us. We hope you find this useful and have a great day! - Neil
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1) How old were you at the time of your diagnosis?
27.
2) Do you have any history of Schwannomas in your family?
I don't know of any.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I had two schwannomas. One was in my right C7 nerve, which is part of the brachial plexus. It first appeared as a firm lump on the side of my neck, above my clavicle, with no pain. I was told that it was just a muscle knot. After about a year, I started feeling pain in the knuckles of my index and middle fingers whenever I tensed my arm muscles with my arm outstretched. I couldn't do push-ups or chin-ups without pain. I also experienced a lot of pain while typing as a software developer. I assumed it was an overuse injury and bought a better mouse and keyboard. Two years after I discovered the lump, I returned to the doctor because the lump was undeniably larger. He diagnosed it with an MRI of the neck.
The other tumor was in my right T8 nerve, on the back wall of my chest, approaching my spine. It measured 10 x 7 x 6 cm! The neurosurgeon that I saw for the first tumor suspected it when I told him that I had a stripe of numbness along my side. I had first noticed the numbness seven years earlier. I had also felt weird sensations all around the right side of my rib cage and abdomen for at least the past fourteen years. There were random shooting pains, muscle spasms, and muscle soreness. These sensations did not change over the years. None of the second tumor's symptoms bothered me much until I knew they were caused by a tumor.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
I had both tumors removed, and both surgeries went exactly as planned. A neurosurgeon removed the neck tumor with a supraclavicular approach. He used electromyography and other neural monitoring techniques to avoid cutting any functional nerve fibers while he removed the tumor from the nerve. He also used general anesthesia, because electromyography works best with general anesthesia, and the tumor was too close to the neck for a nerve block.
The second surgery was more complex. It was scheduled seven weeks after the first surgery to allow time for recovery and more tests. A thoracic surgeon performed a posterolateral thoracotomy between the sixth and seventh ribs. This exposed the tumor, and then the thoracic surgeon and neurosurgeon removed it together. They removed the intercostal nerve with the tumor because it was a minor nerve, and it had already been damaged by the tumor.
5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
I can't think of any good general questions. One thing that helped me was making a list of questions ahead of time and bringing them to the clinic on a clipboard. Once, when I was too nervous, the doctor helped me out by taking the clipboard and starting to answer my questions.
Another piece of advice is to consider a second opinion with a neurosurgeon, especially if your treatment would have a less-than-perfect outcome. For example, see if it is possible to have the whole tumor removed without damage to the associated nerve.
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
I feel like I've recovered well. The radiating pain from the neck tumor disappeared immediately after the tumor was removed. For the first hour, my arm felt like it was waking up after I had slept on it. It felt perfect after that. I left the hospital early the next morning. Three days after the surgery, I started experiencing every sensation on one side of my forearm and hand as pain. If something brushed my arm unexpectedly, I'd think I was stung by a bug. Once I could see that it was something harmless, I was able to ignore the abnormal sensation. This hypersensitivity didn't really bother me, and it gradually faded over a month or two. Besides that, I didn't experience anything unusual. My neck felt swollen, and I felt more tired than usual for the week following surgery.
The second tumor was a different story. I still don't know why, but I had trouble standing up after the surgery. The thoracic surgeon said he had never seen that reaction in a patient before. Every time I stood, bad sensations would increase until I lay down again. I would feel dizzy, lightheaded, disoriented, and nauseous and get a headache. I also experienced ear effects; normal sounds seemed to pulse in intensity with each step I took, and I felt like my head was underwater. My thoughts were fuzzy, and I had trouble concentrating. I also got a lot of stomachaches. I vomited many times before I realized that my symptoms were linked to posture. I left the hospital on the fifth day, as expected. Then I spent most of my time lying on the couch, only getting up for a few minutes at a time. My symptoms didn't improve for a week. Then a nurse suggested that I try sucking in my abdominal muscles. Sucking in my gut or wearing an abdominal strap allowed me to stand for much longer without symptoms. I finally started to improve. At one month after surgery, I only had to lie down for about an hour or two spread throughout the day, without even sucking in my gut. At two months, I could remain upright all day.
A constant, low-grade headache started at five weeks after surgery. I was worried when the headache showed no sign of going away. However, it started improving after a few months and then disappeared at nine and a half months after surgery.
I didn't experience very much pain after the chest surgery, only an expanded area of numbness. That numbness unexpectedly turned to pain on the seventeenth day. The pain lasted for four days before numbness returned. I haven't felt any of the weird, neuropathic sensations in my side that I had before surgery.
Other than difficulty standing and the headache, my recovery from chest surgery went well. Breathing is much easier without the tumor, especially deep breathing. At one year after surgery, the only remaining problem is minor loss of appetite.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
I am able to do everything I did before. I've started running and doing push-ups again, and I haven't lost any range of motion. My arm feels completely normal after the neck surgery. Chronic pain can be a problem after chest surgery, but I haven't experienced any.
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*Bonus content...the person who did this case study wrote a longer, more detailed account of their story and if you wish to read it, here is the link: https://schwannomacasestudy.
____________________________________________________________________
1) How old were you at the time of your diagnosis?
27.
2) Do you have any history of Schwannomas in your family?
I don't know of any.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I had two schwannomas. One was in my right C7 nerve, which is part of the brachial plexus. It first appeared as a firm lump on the side of my neck, above my clavicle, with no pain. I was told that it was just a muscle knot. After about a year, I started feeling pain in the knuckles of my index and middle fingers whenever I tensed my arm muscles with my arm outstretched. I couldn't do push-ups or chin-ups without pain. I also experienced a lot of pain while typing as a software developer. I assumed it was an overuse injury and bought a better mouse and keyboard. Two years after I discovered the lump, I returned to the doctor because the lump was undeniably larger. He diagnosed it with an MRI of the neck.
The other tumor was in my right T8 nerve, on the back wall of my chest, approaching my spine. It measured 10 x 7 x 6 cm! The neurosurgeon that I saw for the first tumor suspected it when I told him that I had a stripe of numbness along my side. I had first noticed the numbness seven years earlier. I had also felt weird sensations all around the right side of my rib cage and abdomen for at least the past fourteen years. There were random shooting pains, muscle spasms, and muscle soreness. These sensations did not change over the years. None of the second tumor's symptoms bothered me much until I knew they were caused by a tumor.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
I had both tumors removed, and both surgeries went exactly as planned. A neurosurgeon removed the neck tumor with a supraclavicular approach. He used electromyography and other neural monitoring techniques to avoid cutting any functional nerve fibers while he removed the tumor from the nerve. He also used general anesthesia, because electromyography works best with general anesthesia, and the tumor was too close to the neck for a nerve block.
The second surgery was more complex. It was scheduled seven weeks after the first surgery to allow time for recovery and more tests. A thoracic surgeon performed a posterolateral thoracotomy between the sixth and seventh ribs. This exposed the tumor, and then the thoracic surgeon and neurosurgeon removed it together. They removed the intercostal nerve with the tumor because it was a minor nerve, and it had already been damaged by the tumor.
5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
I can't think of any good general questions. One thing that helped me was making a list of questions ahead of time and bringing them to the clinic on a clipboard. Once, when I was too nervous, the doctor helped me out by taking the clipboard and starting to answer my questions.
Another piece of advice is to consider a second opinion with a neurosurgeon, especially if your treatment would have a less-than-perfect outcome. For example, see if it is possible to have the whole tumor removed without damage to the associated nerve.
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
I feel like I've recovered well. The radiating pain from the neck tumor disappeared immediately after the tumor was removed. For the first hour, my arm felt like it was waking up after I had slept on it. It felt perfect after that. I left the hospital early the next morning. Three days after the surgery, I started experiencing every sensation on one side of my forearm and hand as pain. If something brushed my arm unexpectedly, I'd think I was stung by a bug. Once I could see that it was something harmless, I was able to ignore the abnormal sensation. This hypersensitivity didn't really bother me, and it gradually faded over a month or two. Besides that, I didn't experience anything unusual. My neck felt swollen, and I felt more tired than usual for the week following surgery.
The second tumor was a different story. I still don't know why, but I had trouble standing up after the surgery. The thoracic surgeon said he had never seen that reaction in a patient before. Every time I stood, bad sensations would increase until I lay down again. I would feel dizzy, lightheaded, disoriented, and nauseous and get a headache. I also experienced ear effects; normal sounds seemed to pulse in intensity with each step I took, and I felt like my head was underwater. My thoughts were fuzzy, and I had trouble concentrating. I also got a lot of stomachaches. I vomited many times before I realized that my symptoms were linked to posture. I left the hospital on the fifth day, as expected. Then I spent most of my time lying on the couch, only getting up for a few minutes at a time. My symptoms didn't improve for a week. Then a nurse suggested that I try sucking in my abdominal muscles. Sucking in my gut or wearing an abdominal strap allowed me to stand for much longer without symptoms. I finally started to improve. At one month after surgery, I only had to lie down for about an hour or two spread throughout the day, without even sucking in my gut. At two months, I could remain upright all day.
A constant, low-grade headache started at five weeks after surgery. I was worried when the headache showed no sign of going away. However, it started improving after a few months and then disappeared at nine and a half months after surgery.
I didn't experience very much pain after the chest surgery, only an expanded area of numbness. That numbness unexpectedly turned to pain on the seventeenth day. The pain lasted for four days before numbness returned. I haven't felt any of the weird, neuropathic sensations in my side that I had before surgery.
Other than difficulty standing and the headache, my recovery from chest surgery went well. Breathing is much easier without the tumor, especially deep breathing. At one year after surgery, the only remaining problem is minor loss of appetite.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
I am able to do everything I did before. I've started running and doing push-ups again, and I haven't lost any range of motion. My arm feels completely normal after the neck surgery. Chronic pain can be a problem after chest surgery, but I haven't experienced any.
_________________________________________________________________
*Bonus content...the person who did this case study wrote a longer, more detailed account of their story and if you wish to read it, here is the link: https://schwannomacasestudy.
Tuesday, August 25, 2015
How Long Before I Feel Better? Views on Recovery from Various Schwannomas
Hello all! This post is the last in our series in which we attempted to determine what recovery time was like for people who have had various kinds of Schwannomas. We did break them down into categories - various ones in the different regions of the spine, Acoustic Neuromas, etc. But since Schwannomas do not fall into neat categories, and for the fact that they can be found along almost any nerve pathway in the body - I felt it was necessary to do a final blog post dealing with all other Schwannomas not mentioned in previous posts. So this last one will have feedback from people with different kinds of Schwannomas, and I will label the person's comments accordingly so you can know what kind of Schwannoma they were recovering from. This blog will tie up the end of this series - we hope you find them helpful and useful, and I thank everyone who took their time to share their stories! - Neil
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Answer 1 - Trigeminal Schwannoma
I have a trigeminal schwannoma. I had gamma knife surgery this past march. I am not seeing much benefit at the moment but was reassured that I would see a change by xmas. I feel that the procedure is relatively new and they're not sure of the long term outcomes so have nothing more positive to offer me. Sigh. I will definitely post any significant changes in my condition though. Meanwhile I have constant headaches and facial paraesthesia that are persistent.
Answer 2 - Trigeminal Schwannoma
Trigeminal schwannoma 6cm and brain stem compression 60 percent. 1 yr complete resection. Still with facial pain. Headaches. Tumor site pain, blurry vision, balance issues. However I am lucky to be alive.
Answer 3 - Sacral Schwannoma
I had a sacral schwannoma removed 12 weeks ago was pretty large 9cm x 9cm still having many issues, right side from tumor sight down butt and leg giving me all kinds of issues,also defacating has been a challenge. Doctor says it is because of pelvic floor muscles, starting to lose faith in that as therapy is doing nothing, and from the type of pain i have i feel its nerve related.
Answer 4 - Presacral Schwannoma
I had a presacral schwannoma 6cm removed almost a year ago. I still have the pain down my right leg I had before removal was so helpful I would be pain free...
Answer 5 - Presacral Schwannoma
I had a 15cm presacral schwannoma filling my whole pelvis and affecting the nerves in my right leg and badly affecting my bladder and bowel. It was removed nearly 2 weeks ago and my leg seems to be ok and my bowel and bladder are better.Recovery has been good but have times where I still need a small dose of endone particularly first thing in morning and evening before bed..
Answer 6 - Esophageal Schwannoma
I had 6cm esophageal schwannoma, was removed along with 1/3 of my esophagus through thoracotomy 3 months +10days ago. Was in hospital for over 2 weeks. Recovery has been smooth, had a feeding tube for a month,no pain with a little discomfort. Now I almost can have normal diet (no spicy food yet). Can't lie down within 2 hrs after meals. Sleep on a big bed wedge pillow... But I can swallow my food like normal people do which I'm really happy about it
Answer 7 - Olfactory Nerve Schwannoma
I had a 3cm schwannoma removed from my olfactory nerve in Jan. It had grown through the skull and was pressing on both my brain and my eye. I was in the hospital for about 6 days, due to a CSF leak. Went back to work part time 5 weeks later, but it took a good three months before I felt that I had my normal level of energy back. Since they removed the right olfactory nerve, my sense of smell is quite diminished and I find that lots of foods taste very different from what I remember. At my three month check up, my eye was back to its normal shape (and I no longer had the tingling/crunching feelings in the eye socket) and the patch where they repaired the leak looked good. I still have the daily headaches that led to the discovery of the tumor in the first place, but they aren't as bad as they were either before the surgery or for the month or two after surgery. I would be interested in connecting with other people who have had olfactory nerve schwannomas....
Answer 8 - Sciatic Nerve Schwannoma
I don't even know what mine was called apart from it was on the sciatic nerve near my tail bone but I was back at work after 4 weeks. They told me to take 9 months and I wish I had.
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Answer 1 - Trigeminal Schwannoma
I have a trigeminal schwannoma. I had gamma knife surgery this past march. I am not seeing much benefit at the moment but was reassured that I would see a change by xmas. I feel that the procedure is relatively new and they're not sure of the long term outcomes so have nothing more positive to offer me. Sigh. I will definitely post any significant changes in my condition though. Meanwhile I have constant headaches and facial paraesthesia that are persistent.
Answer 2 - Trigeminal Schwannoma
Trigeminal schwannoma 6cm and brain stem compression 60 percent. 1 yr complete resection. Still with facial pain. Headaches. Tumor site pain, blurry vision, balance issues. However I am lucky to be alive.
Answer 3 - Sacral Schwannoma
I had a sacral schwannoma removed 12 weeks ago was pretty large 9cm x 9cm still having many issues, right side from tumor sight down butt and leg giving me all kinds of issues,also defacating has been a challenge. Doctor says it is because of pelvic floor muscles, starting to lose faith in that as therapy is doing nothing, and from the type of pain i have i feel its nerve related.
Answer 4 - Presacral Schwannoma
I had a presacral schwannoma 6cm removed almost a year ago. I still have the pain down my right leg I had before removal was so helpful I would be pain free...
Answer 5 - Presacral Schwannoma
I had a 15cm presacral schwannoma filling my whole pelvis and affecting the nerves in my right leg and badly affecting my bladder and bowel. It was removed nearly 2 weeks ago and my leg seems to be ok and my bowel and bladder are better.Recovery has been good but have times where I still need a small dose of endone particularly first thing in morning and evening before bed..
Answer 6 - Esophageal Schwannoma
I had 6cm esophageal schwannoma, was removed along with 1/3 of my esophagus through thoracotomy 3 months +10days ago. Was in hospital for over 2 weeks. Recovery has been smooth, had a feeding tube for a month,no pain with a little discomfort. Now I almost can have normal diet (no spicy food yet). Can't lie down within 2 hrs after meals. Sleep on a big bed wedge pillow... But I can swallow my food like normal people do which I'm really happy about it
Answer 7 - Olfactory Nerve Schwannoma
I had a 3cm schwannoma removed from my olfactory nerve in Jan. It had grown through the skull and was pressing on both my brain and my eye. I was in the hospital for about 6 days, due to a CSF leak. Went back to work part time 5 weeks later, but it took a good three months before I felt that I had my normal level of energy back. Since they removed the right olfactory nerve, my sense of smell is quite diminished and I find that lots of foods taste very different from what I remember. At my three month check up, my eye was back to its normal shape (and I no longer had the tingling/crunching feelings in the eye socket) and the patch where they repaired the leak looked good. I still have the daily headaches that led to the discovery of the tumor in the first place, but they aren't as bad as they were either before the surgery or for the month or two after surgery. I would be interested in connecting with other people who have had olfactory nerve schwannomas....
Answer 8 - Sciatic Nerve Schwannoma
I don't even know what mine was called apart from it was on the sciatic nerve near my tail bone but I was back at work after 4 weeks. They told me to take 9 months and I wish I had.
How Long Before I feel better? - Views on Schwannomatosis
Hello everyone! We have been doing the series in which we sought to understand how long recovery times are for people with various kinds of Schwannomas. Though we can't ask the question in exactly the same light - I wanted to also include our friends with Schwannomatosis. Schwannomatosis is the rare condition that predisposes a person to multiple Schwannomas in almost any part of the body. It is understood to be a rare offshoot of the genetic condition of Neurofibromatosis - and it can lead a person to have multiple Schwannomas along almost any nerve pathway in the body, except the auditory nerves where Acoustic Neuromas arise. And there is a known variant of Schwannomatosis called "Segmental Schwannomatosis" where people can have sometimes many multiple Schwannomas in one part of the body - in a leg, or a single area of the spine, for example. Though life with Schwannomatosis presents challenges unique to the condition - and there is not often something such as 'getting over' it...we did want to include the question to our friends with the condition. Here are there responses...Neil
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Answer 1
I was diagnosed with this this past February. They found a second schwanomma in my body in six months. I am still new with this whole experience. Right now I have continued about my daily life, but fearful of finding another one. I definitely panic more when I feel a pain often wondering if it is another one in my body I didn't know about. (The one in my foot I went with for years before really getting checked out because i thought it was just a cyst in my toe. I didn't realize it covered the whole bottom of my foot.) I was never one to panic before about aches or pains, now I do have to be more aware. I was in the process of trying to get life insurance and was denied the life insurance due to my schwanommas. They told me if I do not have another schwannoma for five years I can apply again. That was hard to hear.
Answer 2
I was diagnosed with Schwannomatosis one year ago along with two of my daughters. My son has recently been tested all clear. Still have four more children awaiting testing for the SMARCB1 mutation. My journey began over 5 years ago when I developed stabbing pains in my foot. I was given an operation to correct hallux rigidus in my big toe and was told that it would cure my pain. It didn't obviously! After years of foot x-rays, foot mri scans, spinal manipulation, epidural injection a doctor decided to send me for a spinal mri. The results came back with several small nodules/tumours in my lumbar spine! Only a few weeks later my then 18 year old daughter suddenly became unable to walk properly. She was taken to A&E where they did various reflex tests and a rectal examination and kept her overnight. In the morning she had an mri scan which revealed two thoracic tumours, 52mm and 18mm. She was moved to a nearby university hospital where they removed both tumours during a 7 hour operation. For days afterwards she couldn't move anything below the waist. She was desperately unhappy and is was so upsetting as her mother seeing her go through this. She eventually got up and about with a zimmer frame after two weeks but kept falling so was confined to bed with a catheter. She was moved to a specialist spinal injury hospital which frightened the hell out of her as there were mostly paraplegics there. After 5 days she discharged herself as she didn't fee she belonged there. She said she would get better more quickly at home where she was happiest. Which turned out to be the right move. She started university 3 months after the operation on crutches. She walked as much as she could and was down to one crutch after a few weeks. By January, 6 months, after the operation she was walking unaided. She continued to improve and two years later she says she is 92% her original health. She still has very slight foot drop but hardly noticeable. Myself, the surgeons won't operate unless my symptoms change affecting my legs or bladder/bowel function! Similarly my other daughter in London. I now have all my fingers and toes crossed that none other of my children are affected.
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Answer 1
I was diagnosed with this this past February. They found a second schwanomma in my body in six months. I am still new with this whole experience. Right now I have continued about my daily life, but fearful of finding another one. I definitely panic more when I feel a pain often wondering if it is another one in my body I didn't know about. (The one in my foot I went with for years before really getting checked out because i thought it was just a cyst in my toe. I didn't realize it covered the whole bottom of my foot.) I was never one to panic before about aches or pains, now I do have to be more aware. I was in the process of trying to get life insurance and was denied the life insurance due to my schwanommas. They told me if I do not have another schwannoma for five years I can apply again. That was hard to hear.
Answer 2
I was diagnosed with Schwannomatosis one year ago along with two of my daughters. My son has recently been tested all clear. Still have four more children awaiting testing for the SMARCB1 mutation. My journey began over 5 years ago when I developed stabbing pains in my foot. I was given an operation to correct hallux rigidus in my big toe and was told that it would cure my pain. It didn't obviously! After years of foot x-rays, foot mri scans, spinal manipulation, epidural injection a doctor decided to send me for a spinal mri. The results came back with several small nodules/tumours in my lumbar spine! Only a few weeks later my then 18 year old daughter suddenly became unable to walk properly. She was taken to A&E where they did various reflex tests and a rectal examination and kept her overnight. In the morning she had an mri scan which revealed two thoracic tumours, 52mm and 18mm. She was moved to a nearby university hospital where they removed both tumours during a 7 hour operation. For days afterwards she couldn't move anything below the waist. She was desperately unhappy and is was so upsetting as her mother seeing her go through this. She eventually got up and about with a zimmer frame after two weeks but kept falling so was confined to bed with a catheter. She was moved to a specialist spinal injury hospital which frightened the hell out of her as there were mostly paraplegics there. After 5 days she discharged herself as she didn't fee she belonged there. She said she would get better more quickly at home where she was happiest. Which turned out to be the right move. She started university 3 months after the operation on crutches. She walked as much as she could and was down to one crutch after a few weeks. By January, 6 months, after the operation she was walking unaided. She continued to improve and two years later she says she is 92% her original health. She still has very slight foot drop but hardly noticeable. Myself, the surgeons won't operate unless my symptoms change affecting my legs or bladder/bowel function! Similarly my other daughter in London. I now have all my fingers and toes crossed that none other of my children are affected.
Sunday, August 16, 2015
How Long Before I Feel Better After a Schwannoma in the Torso?
Hello again all! This is the next in our series of blogs exploring the question of how long recovery takes...in this case recovery from a Schwannoma in the torso of the body. The common Schwannomas of this sort include Retroperitoneal Schwannomas, Brachial Plexus Schwannoma, and a number of others. We decided to put the question out somewhat loosely, attempting to explore what recovery was like for those with Schwannomas anywhere along the torso of the body (not including the spinal column - we did a string of blogs on those as well). Here are the responses we received from the Schwannoma Survivors group and we hope they are useful to you! - Neil
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Answer 1
My first Schannoma was located on the nerves on T5-T7 ( I believe ), it was the size of an orange. That was in 1994. The surgery was quite extensive. The surgeon cut 9 inches below my scapula, split my latissimus dorsi muscle , expanded my rib cage, extracted a rib , collapsed my lung, then removed the tumor. It was summertime and if the room temperature was not set at 70 or lower, I would labor with my breathing and start hyperventilating. I did not gain complete range of motion , of my right arm ever, bit was about 90% 7/8 months later. I still get numbness across my right breast/chest area and tightness/pain in right shoulder, chest, and ribs after tennis, bowling, football, etc. I also feel random " jolts " shooting within that area.
January 28, 2015, I had a rate gastric schwannoma( grapefruit size), stemming from my esophagus attaching to my outer stomach wall.
I am still waiting to feel "normal." The heat and humidity slow me down and I feel pressure in my upper abdomen. My spine often feels weak and pained. Funny, this second schwannoma was not too far from my 1st schwannoma.
My incision site still feels like it is " being pulled" and has pain. I was walking very briskly , about 2/3 miles , every other day, in May, but my body had other plans. So, I listen to my body. Walk 3 miles , but not AS briskly and I started using the Total Gym again.
I still suffer terribly with acid reflux and bowel movements ( sorry if that is too much ).
I'm going for genetic testing tomorrow. We ( my mom's side), we have breast cancer in the family. Grandmother and aunt died. Another aunt has been in remission for 15 years. Her daughter ( my cousin June), lost her 3 month battle with stage 4 triple negative breast cancer , on 12/18/2014. She was 50. My mom has been in remission since May; she is stage 4.
My mom, cousin June and June's sister( Karen) all tested positive for the same BRCA 2 mutation.
They are having their ovaries and other reproductive organs removed.
I have requested to be tested for Schwannomatosis, as well. So, I know I am still recovering . And I know I need to be patient and positive . Let's see what a year post-op brings.
Answer 2
To date no pain and I am on watch and wait. One year duration between MRI Scans. I can see the chest tumor - thus it is difficult to not focus on the fact that they exist and if growth continues - surgery.
Answer 3 (Brachial Plexus Schwannoma)
The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery. More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.
Answer 4 (Retroperitoneal Schwannoma)
It was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain. However, after about five weeks the abdominal pain was very intense and disabling. To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes. On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me! I saw my GP and he said he would admit me to hospital. I did not want this so I had yet another scan which proved to be ok. I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better. He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped. It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process. I still have the same symptoms in my leg although they are no where near as bad as they were before surgery. I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted. I had to rely on being taken out in the wheelchair but I use to look forward to those trips out. I think you have to be positive and literally take one day at a time, and don't think about tomorrow, that's what helped me psychologically.
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____________________________________________________________________
Answer 1
My first Schannoma was located on the nerves on T5-T7 ( I believe ), it was the size of an orange. That was in 1994. The surgery was quite extensive. The surgeon cut 9 inches below my scapula, split my latissimus dorsi muscle , expanded my rib cage, extracted a rib , collapsed my lung, then removed the tumor. It was summertime and if the room temperature was not set at 70 or lower, I would labor with my breathing and start hyperventilating. I did not gain complete range of motion , of my right arm ever, bit was about 90% 7/8 months later. I still get numbness across my right breast/chest area and tightness/pain in right shoulder, chest, and ribs after tennis, bowling, football, etc. I also feel random " jolts " shooting within that area.
January 28, 2015, I had a rate gastric schwannoma( grapefruit size), stemming from my esophagus attaching to my outer stomach wall.
I am still waiting to feel "normal." The heat and humidity slow me down and I feel pressure in my upper abdomen. My spine often feels weak and pained. Funny, this second schwannoma was not too far from my 1st schwannoma.
My incision site still feels like it is " being pulled" and has pain. I was walking very briskly , about 2/3 miles , every other day, in May, but my body had other plans. So, I listen to my body. Walk 3 miles , but not AS briskly and I started using the Total Gym again.
I still suffer terribly with acid reflux and bowel movements ( sorry if that is too much ).
I'm going for genetic testing tomorrow. We ( my mom's side), we have breast cancer in the family. Grandmother and aunt died. Another aunt has been in remission for 15 years. Her daughter ( my cousin June), lost her 3 month battle with stage 4 triple negative breast cancer , on 12/18/2014. She was 50. My mom has been in remission since May; she is stage 4.
My mom, cousin June and June's sister( Karen) all tested positive for the same BRCA 2 mutation.
They are having their ovaries and other reproductive organs removed.
I have requested to be tested for Schwannomatosis, as well. So, I know I am still recovering . And I know I need to be patient and positive . Let's see what a year post-op brings.
Answer 2
To date no pain and I am on watch and wait. One year duration between MRI Scans. I can see the chest tumor - thus it is difficult to not focus on the fact that they exist and if growth continues - surgery.
Answer 3 (Brachial Plexus Schwannoma)
The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery. More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.
Answer 4 (Retroperitoneal Schwannoma)
It was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain. However, after about five weeks the abdominal pain was very intense and disabling. To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes. On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me! I saw my GP and he said he would admit me to hospital. I did not want this so I had yet another scan which proved to be ok. I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better. He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped. It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process. I still have the same symptoms in my leg although they are no where near as bad as they were before surgery. I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted. I had to rely on being taken out in the wheelchair but I use to look forward to those trips out. I think you have to be positive and literally take one day at a time, and don't think about tomorrow, that's what helped me psychologically.
______________________________________________________________________
Tuesday, August 4, 2015
How Long Before I Feel Better After a Schwannoma in an Arm or Leg?
Hello all! This is the next in the series of blogs we are doing which seek to answer what recovery times can be like for people who have had schwannomas in particular parts of the body. In this posting we seek to answer what recovery time was like for anyone who had a schwannoma anywhere in the arms or legs. We thank, as always, friends of the Schwannoma Survivors & Schwannoma Fighters Facebook page who contributed their answers to this question - and we hope you find them useful! - Neil
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Answer 1
I have schwannomas in my legs and feet. I had one taken out from my thigh and it only took a week to recover. The others cannot are causing a lot more pain than the first one. I am seeing my neurologist on Monday to see if they can be removed or not. The one on the bottom of my foot is excruciating, the one in my calf only causes pain if I hit my leg against something or touch the area.
Answer 2
Right Arm dec. 2013 and returned to work in feb. 2014. Pain until mid january. Still numb in 2 fingers and hand. Consistent cramping hand even now cannot hold items long time without cramping even typing writing at times cramps up and at times cramps up no reason. Where removed still tingling but no pain.
Answer 3
Right thigh November 2008. Prior to surgery I was unable to walk or bear weight. I was better IMMEDIATELY after surgery. I would say I had aches and "surgical" pain for 1-1 1/2 weeks after surgery but compared to the presurgical it was nothing!! Currently I have one in my right upper arm and left lower leg confirmed with MRI--surgeon is out of country for a month so waiting to schedule next surgery.
Answer 4
I had one removed from the bottom of my left foot in February of this year, 2015. It spanned 2/3 of my foot and was 9 cm by 4 cm long and a smaller growth in my second toe that was 2 cm by 4 cm. I was off my foot for seven weeks total. I had stitches in the bottom of my foot and couldn't apply any pressure for the first six weeks. I had to go weekly for them to change the bandages and check my foot. The seventh week I could slowly start to put weight on my foot. Even after I could walk again and resume regular activities it still hurt for several weeks. I had numbness in my big toe for almost three months after the surgery. Every once in a while I still have some pain that shoots through my second toe. It's just a sharp pain, but quickly passes over.
Answer 5
I had one egg sized removed thrugh the bottom of my left foot in July of 2014. I could not walk at all for six weeks. The pain was excrurtiating. It continued to hurt for several months. Pain from the scar and the nerve for up to six months. One year later the scar causes minimal discomfort but I do get shooting pains randomly from the nerve. It feels like a sharp pin is stickining up my foot and shoots to my knee.
Answer 6
Just coming off of removal of a cluster of schwannomas in my calf. Had one removed many years ago and a cluster grew back (5) Hurt terribly when I would bump it. (You become so protective of your lumps and bumps because the pain is awful )! Still have some residual nerve pain, but 80% better. So happy I had them removed and will go back to same neurologist to have an acorn sized one in my forearm and multiples on my hand .
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________________________________________________________________________
Answer 1
I have schwannomas in my legs and feet. I had one taken out from my thigh and it only took a week to recover. The others cannot are causing a lot more pain than the first one. I am seeing my neurologist on Monday to see if they can be removed or not. The one on the bottom of my foot is excruciating, the one in my calf only causes pain if I hit my leg against something or touch the area.
Answer 2
Right Arm dec. 2013 and returned to work in feb. 2014. Pain until mid january. Still numb in 2 fingers and hand. Consistent cramping hand even now cannot hold items long time without cramping even typing writing at times cramps up and at times cramps up no reason. Where removed still tingling but no pain.
Answer 3
Right thigh November 2008. Prior to surgery I was unable to walk or bear weight. I was better IMMEDIATELY after surgery. I would say I had aches and "surgical" pain for 1-1 1/2 weeks after surgery but compared to the presurgical it was nothing!! Currently I have one in my right upper arm and left lower leg confirmed with MRI--surgeon is out of country for a month so waiting to schedule next surgery.
Answer 4
I had one removed from the bottom of my left foot in February of this year, 2015. It spanned 2/3 of my foot and was 9 cm by 4 cm long and a smaller growth in my second toe that was 2 cm by 4 cm. I was off my foot for seven weeks total. I had stitches in the bottom of my foot and couldn't apply any pressure for the first six weeks. I had to go weekly for them to change the bandages and check my foot. The seventh week I could slowly start to put weight on my foot. Even after I could walk again and resume regular activities it still hurt for several weeks. I had numbness in my big toe for almost three months after the surgery. Every once in a while I still have some pain that shoots through my second toe. It's just a sharp pain, but quickly passes over.
Answer 5
I had one egg sized removed thrugh the bottom of my left foot in July of 2014. I could not walk at all for six weeks. The pain was excrurtiating. It continued to hurt for several months. Pain from the scar and the nerve for up to six months. One year later the scar causes minimal discomfort but I do get shooting pains randomly from the nerve. It feels like a sharp pin is stickining up my foot and shoots to my knee.
Answer 6
Just coming off of removal of a cluster of schwannomas in my calf. Had one removed many years ago and a cluster grew back (5) Hurt terribly when I would bump it. (You become so protective of your lumps and bumps because the pain is awful )! Still have some residual nerve pain, but 80% better. So happy I had them removed and will go back to same neurologist to have an acorn sized one in my forearm and multiples on my hand .
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Monday, August 3, 2015
How Long Before I Feel Better After Lumbar Spinal Schwannoma?
Hello all! This is the fourth installment of our series as we have been asking members of the Schwannoma Survivors Facebook group how long it took for them to recover normal life functions after having had various kinds of Schwannoma surgery (by various we mean Schwannomas that were in different parts of their bodies.) In this blogpost we have asked our friends with Lumbar Spinal Schwannomas this question - how long before they felt better, i.e., could resume normal life functions - and here are their responses. We hope you find them helpful! - Neil
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First Answer:
I had my tumour out at L4/L5 and a nodule above that. Both were schwannomas. They were inderdural extramedulary. My surgery was 9 weeks ago so I'm still recovering. I had back and pain pain for lots of years before they finally did a MRI and found the tumors. I'm on lot less tablets now than before surgery and only get pain when I over do it. My leg pain is better i would say 80% and I do have few other issues with back as well so know that will take longer to heal.
Second Answer:
Oct 2013, L3L4. Still not doing well. Seeing pain management. Nerve pain is a kill joy, people
Third Answer:
One week after surgery I broke out in a bright red "rash" over the entire ribcage on one side, front and back. That same surgeon misdiagnosed it as shingles, and it was only several years later when I was turned down for insurance that I found out it was post thoracic neuritis. While the recovery for the surgery itself probably wasn't too terrible the neuritis was horrible. I returned to work after 6 weeks but it was months later before the almost unbearable pain from the neuritis lessened, and I still feel it in my ribs with every breath. Having been misdiagnosed with and treated for shingles, there were several mis-starts for treatment. Finally as a last resort I tried acupuncture and fortunately it worked immediately for some relief. I strongly suggest to anyone that they keep looking for a surgeon until they find one with specific experience with schwannomas.
Fourth Answer:
I had a 2cm schwannoma at L4-L5 removed 10 months ago. After 10+ years of intermittent sciatica and back pain, my back feels great. Spent 2 nights in the hospital and went back to work part-time after 4 weeks. It took about 3 months before I could bend over comfortably. For 5-6 months, I felt like there was a rock inside my back at the surgical site. Acupuncture was a great help with this. My tumor did not have a nerve running through it as my surgeon had suspected, but it was stuck to the nerve and had to be peeled off. The left side of my leg and foot have been numb since the surgery, along the S1 dermatome. The numbness isn't a big deal, but my foot aches considerably if I stand too long or walk a long distance. It's been very hard to exercise because of this. Taking neurontin now, which has alleviated the occasional shooting nerve pain, but not the discomfort. Follow-up care has been very lacking. My advice is to ask lots of questions, including how often and who you will be seen by in the months after surgery.
Fifth Answer:
I now have my second spinal schwannoma between L3-L4. It is currently 3 mm so they will not remove it. The first one before discovered got as big as a golf ball before found. I got down to 80 pounds and couldn't use me right side of my body (leg and arm).... I had a full recovery with minor symptoms. I now have a list of symptoms again and told the tumor is to small to remove. I am going to try a spinal block next month to hopefully return to normal life. It is so hard feeling like the crap all the time and just trying to be normal.... I appreciate this web page to know I am not alone. I wish I could have surgery now instead of them allowing it to slowly grow, I also battle scoliosis and going ongoing physical therapy to correct this thanks to the schwannomas.
Sixth Answer:
(Schwannoma) 11cm at L2/3. Two surgeries and total resection. I suffer terrible nerve pain and limited movement in left leg. It had grown some into my psoas muscle.
Seventh Answer:
I had 99% of my intradural extramedullary schwanomma removed which was located at my L4-L5 about a year ago. I felt immediate relief after surgery but went back to doing my norm in about six months. I still feel some nerve pain but it's minimal. Other than that I can do almost anything now.
Eighth Answer:
I had my "ancient schwannoma" removed from my L4 vertebrae 6 yrs ago today actually! Took about 30 days to be able to fully get out of bed without vomiting. I still have a pocket of fluid right there that they supposedly can't do anything about. I still to this day have pain and an 8lb lifting restriction. I have nerve damage in my right thigh and also behind left knee from surgery. It wasn't my first and unfortunately not my last schwannoma.
Ninth Answer:
Had a Schwannoma L5/S1 discovered during August 2012. Had surgery and it was removed. Terrible nerve pain and total numbness of left leg. Left leg very weak with several muscles not functioning. 3 Months ago it was discovered after back pain that the Schwannoma has reoccurred. Neuro Surgeon wanted to remove and give up the L5 nerve root. I did some investigation and went to India Bangalore for Cyberknife treatment. Had 5 sessions and a very good examination with full blood, MRI and CT (PET) scans. Stayed for 2 weeks and only came back the day before yesterday. However the results are not immediate and will take time to get smaller. Now for the wait - 6 months to do another MRI. The HCG Oncology center is actually very good in what they do and the dr's very experienced. Will report back in 6 months time.
Tenth Answer:
Having read peoples experiences here I count myself very fortunate. I started pain in my left leg and groin 2 years ago, it was diagnosed as probably sciatica and prescribed low dose cocodamol. Over time pain increased and was bad at night when flat on my back. Eventually my GP sent me for an MRI scan, this revealed a 17mm spinal tumour. The surgeon was surprised that I could still walk as the tumour was crushing lower body nerves. He told me to expect a numb leg after removal of tumour. In December 2014 I spent one week in hospital following laminectomy of L1, L2 and the complete removal of schwannoma. Thankfully the leg has no numbness, there is a small numb area at base of spin on left buttock. After three months I was able to split logs with an axe and the only reminder of the surgery is some back ache from time to time. Life is completely normal now with no symptoms. May be I have been lucky, may be the tumour will return only time will tell.
Eleventh Answer:
I had surgery for my tumor in February of this year. I had a large schwannoma from L4-S1. My neurosurgeon conducted a laminectomy and was only able to do a partial removal of my tumor because of a great risk of paralysis. After surgery, I was feeling much better and was able to do physical therapy and I also completed 5 weeks of radiation therapy for the remaining tumor. I had no side effects from the radiation throughout the treatment. Two weeks after completing radiation I developed severe diarrhea and skin burns to my back that blistered pretty bad. Pain has also returned to my back and is actually worse than before surgery. Nerve pain radiating down my right leg has also returned with a vengeance. I had a follow up MRI last week and discovered that the tumor had eroded the dura on my spinal cord. So, the spinal fluid has pushed the pia and arachnoid out, creating a large cyst that is now putting pressure on the spinal cord and nerve roots. I am not able to work a full day because of the intense pain. I am now awaiting a second surgery to remove the cyst and repair the hole in the dura.
Twelfth Answer:
I was very lucky with my spinal schwannoma-at least so far. I was not having ANY symptons. This was found when I was being diagnosed with breast cancer via a CT scan. I had my surgery on March 31st. The tumor was the size of a large egg. They were in at my waist and did not get it all during the surgery. He cauterized what was there and, it appears from the MRI I had at the first of June, that it killed it. I will have annual MRIs to monitor this.
______________________________________________________
_____________________________________________________________
First Answer:
I had my tumour out at L4/L5 and a nodule above that. Both were schwannomas. They were inderdural extramedulary. My surgery was 9 weeks ago so I'm still recovering. I had back and pain pain for lots of years before they finally did a MRI and found the tumors. I'm on lot less tablets now than before surgery and only get pain when I over do it. My leg pain is better i would say 80% and I do have few other issues with back as well so know that will take longer to heal.
Second Answer:
Oct 2013, L3L4. Still not doing well. Seeing pain management. Nerve pain is a kill joy, people
Third Answer:
One week after surgery I broke out in a bright red "rash" over the entire ribcage on one side, front and back. That same surgeon misdiagnosed it as shingles, and it was only several years later when I was turned down for insurance that I found out it was post thoracic neuritis. While the recovery for the surgery itself probably wasn't too terrible the neuritis was horrible. I returned to work after 6 weeks but it was months later before the almost unbearable pain from the neuritis lessened, and I still feel it in my ribs with every breath. Having been misdiagnosed with and treated for shingles, there were several mis-starts for treatment. Finally as a last resort I tried acupuncture and fortunately it worked immediately for some relief. I strongly suggest to anyone that they keep looking for a surgeon until they find one with specific experience with schwannomas.
Fourth Answer:
I had a 2cm schwannoma at L4-L5 removed 10 months ago. After 10+ years of intermittent sciatica and back pain, my back feels great. Spent 2 nights in the hospital and went back to work part-time after 4 weeks. It took about 3 months before I could bend over comfortably. For 5-6 months, I felt like there was a rock inside my back at the surgical site. Acupuncture was a great help with this. My tumor did not have a nerve running through it as my surgeon had suspected, but it was stuck to the nerve and had to be peeled off. The left side of my leg and foot have been numb since the surgery, along the S1 dermatome. The numbness isn't a big deal, but my foot aches considerably if I stand too long or walk a long distance. It's been very hard to exercise because of this. Taking neurontin now, which has alleviated the occasional shooting nerve pain, but not the discomfort. Follow-up care has been very lacking. My advice is to ask lots of questions, including how often and who you will be seen by in the months after surgery.
Fifth Answer:
I now have my second spinal schwannoma between L3-L4. It is currently 3 mm so they will not remove it. The first one before discovered got as big as a golf ball before found. I got down to 80 pounds and couldn't use me right side of my body (leg and arm).... I had a full recovery with minor symptoms. I now have a list of symptoms again and told the tumor is to small to remove. I am going to try a spinal block next month to hopefully return to normal life. It is so hard feeling like the crap all the time and just trying to be normal.... I appreciate this web page to know I am not alone. I wish I could have surgery now instead of them allowing it to slowly grow, I also battle scoliosis and going ongoing physical therapy to correct this thanks to the schwannomas.
Sixth Answer:
(Schwannoma) 11cm at L2/3. Two surgeries and total resection. I suffer terrible nerve pain and limited movement in left leg. It had grown some into my psoas muscle.
Seventh Answer:
I had 99% of my intradural extramedullary schwanomma removed which was located at my L4-L5 about a year ago. I felt immediate relief after surgery but went back to doing my norm in about six months. I still feel some nerve pain but it's minimal. Other than that I can do almost anything now.
Eighth Answer:
I had my "ancient schwannoma" removed from my L4 vertebrae 6 yrs ago today actually! Took about 30 days to be able to fully get out of bed without vomiting. I still have a pocket of fluid right there that they supposedly can't do anything about. I still to this day have pain and an 8lb lifting restriction. I have nerve damage in my right thigh and also behind left knee from surgery. It wasn't my first and unfortunately not my last schwannoma.
Ninth Answer:
Had a Schwannoma L5/S1 discovered during August 2012. Had surgery and it was removed. Terrible nerve pain and total numbness of left leg. Left leg very weak with several muscles not functioning. 3 Months ago it was discovered after back pain that the Schwannoma has reoccurred. Neuro Surgeon wanted to remove and give up the L5 nerve root. I did some investigation and went to India Bangalore for Cyberknife treatment. Had 5 sessions and a very good examination with full blood, MRI and CT (PET) scans. Stayed for 2 weeks and only came back the day before yesterday. However the results are not immediate and will take time to get smaller. Now for the wait - 6 months to do another MRI. The HCG Oncology center is actually very good in what they do and the dr's very experienced. Will report back in 6 months time.
Tenth Answer:
Having read peoples experiences here I count myself very fortunate. I started pain in my left leg and groin 2 years ago, it was diagnosed as probably sciatica and prescribed low dose cocodamol. Over time pain increased and was bad at night when flat on my back. Eventually my GP sent me for an MRI scan, this revealed a 17mm spinal tumour. The surgeon was surprised that I could still walk as the tumour was crushing lower body nerves. He told me to expect a numb leg after removal of tumour. In December 2014 I spent one week in hospital following laminectomy of L1, L2 and the complete removal of schwannoma. Thankfully the leg has no numbness, there is a small numb area at base of spin on left buttock. After three months I was able to split logs with an axe and the only reminder of the surgery is some back ache from time to time. Life is completely normal now with no symptoms. May be I have been lucky, may be the tumour will return only time will tell.
Eleventh Answer:
I had surgery for my tumor in February of this year. I had a large schwannoma from L4-S1. My neurosurgeon conducted a laminectomy and was only able to do a partial removal of my tumor because of a great risk of paralysis. After surgery, I was feeling much better and was able to do physical therapy and I also completed 5 weeks of radiation therapy for the remaining tumor. I had no side effects from the radiation throughout the treatment. Two weeks after completing radiation I developed severe diarrhea and skin burns to my back that blistered pretty bad. Pain has also returned to my back and is actually worse than before surgery. Nerve pain radiating down my right leg has also returned with a vengeance. I had a follow up MRI last week and discovered that the tumor had eroded the dura on my spinal cord. So, the spinal fluid has pushed the pia and arachnoid out, creating a large cyst that is now putting pressure on the spinal cord and nerve roots. I am not able to work a full day because of the intense pain. I am now awaiting a second surgery to remove the cyst and repair the hole in the dura.
Twelfth Answer:
I was very lucky with my spinal schwannoma-at least so far. I was not having ANY symptons. This was found when I was being diagnosed with breast cancer via a CT scan. I had my surgery on March 31st. The tumor was the size of a large egg. They were in at my waist and did not get it all during the surgery. He cauterized what was there and, it appears from the MRI I had at the first of June, that it killed it. I will have annual MRIs to monitor this.
______________________________________________________
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