Schwannomatosis (NF)

Posted by NFRunner @nfrunner, Nov 20, 2011

Would anyone like to share their experiences with Schwannomatosis? I run, walk, bike, and snowshoe race with the NF Endurance Team and the Children’s Tumor Foundation to bring awareness and advocacy for Neurofibromatosis and Schwannomatosis. I’m passionate in my hope for a cure for NF. I’m a patient at the Mayo Clinic in Rochester, too.

Liked by NORMA JEAN

HOW OLD WERE YOU WHEN YOU FOUND OUT YOU HAVE SCHWANNOMATOSIS? I WAS 30. MY MOM WAS 29. MY OLDEST DAUGHTER WAS 18 AND MY OLDEST GRANDSON WAS 18. MY OTHER TWO KIDS AND GRANDKIDS DO SEEM TO HAVE SCHWANNOMAS. MY BROTHERS AND THEIR KIDS ALSO DO NOT SEEM TO HAVE SCHWANNOMAS.

I’d like to know if I have schwannomatosis. I’ve had four tumors removed from my spine. The first one when I was 19 at S1, the second (S1) and third one (L5) when I was 26, and the fourth one when I was 43. My insurance will never pay for the test to get a definitive diagnosis. The second tumor was a recurrence of the first. It was believed they never fully removed the first. It grew through my sacrum and into my pelvis. It was the size of two large grapefruits and weighed 8 pounds. My pain was repeatedly ignored for seven years. That’s why it was so big. My surgeon’s had to cut the nerve roots at the spine at L5, S1 and S2 so that the tumors would not come back. It took two years before I could walk again. I just had my seventh spine operation in January 2016. My 21st surgery overall. I’ve been in pain since I was 16 (35 years now).

Welcome to Connect, @painwarrior. You have chosen your username wisely. I cannot image the pain you live with. I hope to connect you with other Connect member like @stephbusta as well as @normajean1 @nfrunner who started this thread quite a while back.

@painwarrior – why will your insurance not cover the cost to get a diagnosis?

@painwarrior

I’d like to know if I have schwannomatosis. I’ve had four tumors removed from my spine. The first one when I was 19 at S1, the second (S1) and third one (L5) when I was 26, and the fourth one when I was 43. My insurance will never pay for the test to get a definitive diagnosis. The second tumor was a recurrence of the first. It was believed they never fully removed the first. It grew through my sacrum and into my pelvis. It was the size of two large grapefruits and weighed 8 pounds. My pain was repeatedly ignored for seven years. That’s why it was so big. My surgeon’s had to cut the nerve roots at the spine at L5, S1 and S2 so that the tumors would not come back. It took two years before I could walk again. I just had my seventh spine operation in January 2016. My 21st surgery overall. I’ve been in pain since I was 16 (35 years now).

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It sounds like your journey with NF has been more difficult than I could even imagine experiencing. Obviously, you have great strength. I am not a medically trained person but I belong to 4 NF Foundations and through them I have learned a lot about all forms of NF. The Children’s Tumor Foundation and NF Midwest are great information resources. 1993, at 39yrs, first surgery L2 – L4 and abdominal – NF barely known then. 2008, at 54yrs, second and third surgery – Schwannomatosis was a newly discovered form of NF. My genetic testing was through Mayo Clinic in Rochester. Insurance turned me down too, but Mayo Genetics Clinic and my neuro-surgeon re-applied and re-phrased the need for it 2X before getting approval. The first advice you will always hear is to find a clinic and doctors who are NF knowledgeable/experts. Some of the bigger NF Clinics have specialized pain centers. I love Mayo Clinic, this is where I have come since 1993. I have learned that NF is a genetic mutation, each form of NF a different mutation, there is no cure and no definitive way (yet) to keep tumors from recurring. Tumors grow on nerves, any nerves, anywhere there are nerves in the body. I can picture the tumor having a little root or foot to attach it to the nerve, like you described your surgeon saying. A tumor can be removed from the nerve and maybe it won’t return in that exact same spot, but the genetic defect can cause another tumor to grow right next to it on the same nerve or a nearby nerve. My surgeries did not involve removing any of the nerve. Thankfully, my L2 – L4 area does not hurt me. I incurred some nerve damage in 1993, but it is not in a painful way. Wow, you spent 2 years to walk again? I still remember the feelings and those I will never forget – how stunned, how grateful I felt when I literally walked out of those surgeries. Sadly, pain is one of the criteria most associated with Schwannomatosis. I so hope your last surgery in January was successful and is not causing you more pain. I can’t imagine being without my medical team and their support all these years! A connection, a bond, or just a friendship with them and caring for each other really makes a difference in helping to live with NF. I so hope you have found that too where you go for care. If you like this idea, there is a newly formed Facebook group called Adults with NF – Children’s Tumor Foundation where only adults share their experiences with NF and support each other. My thoughts and hopes are with you. I wish I could be more helpful.

My insurance doesn’t think it’s medically necessary. It’s been a couple of years since I requested the test. Maybe it’s time to have my surgeon try again, especially since I just had surgery. Might be worth a try. If I could get the diagnosis, then maybe my doctors would understand why I’m in pain most of the time. I wish I could go to a Mayo Clinic, but it’s just not feasible.

@painwarrior

My insurance doesn’t think it’s medically necessary. It’s been a couple of years since I requested the test. Maybe it’s time to have my surgeon try again, especially since I just had surgery. Might be worth a try. If I could get the diagnosis, then maybe my doctors would understand why I’m in pain most of the time. I wish I could go to a Mayo Clinic, but it’s just not feasible.

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It might be worth a try, @painwarrior. How are you doing today?

I’m doing okay Colleen, thank you so much for asking. Feeling a little guilty. My husband has to go to Tennessee next month to visit his parents, his Mom has been ill recently. I had to tell him I’m not physically able to go with him. I had surgery January 12, and I’m still in some pain and feeling very weak, and I don’t think I could handle travelling cross country, even if by air. I don’t think he understands. He just told his parents that “Apparently growing bone is tiring, because she’s tired all the time.” It was my seventh spine surgery and my 21st overall. It’s not like I’m in my thirties and able to bounce back right away. I’m 51, and spine surgery seems to get harder and harder.

@painwarrior

I’d like to know if I have schwannomatosis. I’ve had four tumors removed from my spine. The first one when I was 19 at S1, the second (S1) and third one (L5) when I was 26, and the fourth one when I was 43. My insurance will never pay for the test to get a definitive diagnosis. The second tumor was a recurrence of the first. It was believed they never fully removed the first. It grew through my sacrum and into my pelvis. It was the size of two large grapefruits and weighed 8 pounds. My pain was repeatedly ignored for seven years. That’s why it was so big. My surgeon’s had to cut the nerve roots at the spine at L5, S1 and S2 so that the tumors would not come back. It took two years before I could walk again. I just had my seventh spine operation in January 2016. My 21st surgery overall. I’ve been in pain since I was 16 (35 years now).

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I’ve been trying to get in to see a neurosurgeon for a month . A Orthopaedic doctor for a MRI & I have a bulging disk & they are more concern of a 2to 3 mm in maximum diameter on my spine. They are not sure what it is. It may represent nerve sheath tumor, scjeannoma or neurofibromas not sure. A prominsyenhancrment of s adjacent nerve root , apparently the L5. Nerve root with more subtle enhancement of additional nerve roots of the scuds equina a lot not sure of. The one neosurgeron sent me to a doctor who was suppose to perform a spinal tap & found out he doesn’t permit them. Now I’m eaiting to see another neurosurgeon not until March. Doing s lot if praying & trying to be positive.

@nfrunner

It sounds like your journey with NF has been more difficult than I could even imagine experiencing. Obviously, you have great strength. I am not a medically trained person but I belong to 4 NF Foundations and through them I have learned a lot about all forms of NF. The Children’s Tumor Foundation and NF Midwest are great information resources. 1993, at 39yrs, first surgery L2 – L4 and abdominal – NF barely known then. 2008, at 54yrs, second and third surgery – Schwannomatosis was a newly discovered form of NF. My genetic testing was through Mayo Clinic in Rochester. Insurance turned me down too, but Mayo Genetics Clinic and my neuro-surgeon re-applied and re-phrased the need for it 2X before getting approval. The first advice you will always hear is to find a clinic and doctors who are NF knowledgeable/experts. Some of the bigger NF Clinics have specialized pain centers. I love Mayo Clinic, this is where I have come since 1993. I have learned that NF is a genetic mutation, each form of NF a different mutation, there is no cure and no definitive way (yet) to keep tumors from recurring. Tumors grow on nerves, any nerves, anywhere there are nerves in the body. I can picture the tumor having a little root or foot to attach it to the nerve, like you described your surgeon saying. A tumor can be removed from the nerve and maybe it won’t return in that exact same spot, but the genetic defect can cause another tumor to grow right next to it on the same nerve or a nearby nerve. My surgeries did not involve removing any of the nerve. Thankfully, my L2 – L4 area does not hurt me. I incurred some nerve damage in 1993, but it is not in a painful way. Wow, you spent 2 years to walk again? I still remember the feelings and those I will never forget – how stunned, how grateful I felt when I literally walked out of those surgeries. Sadly, pain is one of the criteria most associated with Schwannomatosis. I so hope your last surgery in January was successful and is not causing you more pain. I can’t imagine being without my medical team and their support all these years! A connection, a bond, or just a friendship with them and caring for each other really makes a difference in helping to live with NF. I so hope you have found that too where you go for care. If you like this idea, there is a newly formed Facebook group called Adults with NF – Children’s Tumor Foundation where only adults share their experiences with NF and support each other. My thoughts and hopes are with you. I wish I could be more helpful.

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Hi @nfrunner! Can you share with me who you see at Mayo for your schwannomatosis? I was diagnosed with schwannomatosis in 2011 and am a patient at a prominent medical center with a well-known NF Clinic. However, my pain is just terrible so I want to have a consult at Mayo. When I contacted Mayo, they set me up for an appointment with a neurologist who is not part of its NF department. I had to cancel the appointment because I suffered a spontaneous pneumothorax (collapsed lung) and could not travel. I am ok to travel now so want to reschedule but I think I need to be seen by an NF specialist, no? Or should I just be seen by the neurologist assigned to me? Would appreciate any guidance! Thanks so much.

@keikowacko

Hi @nfrunner! Can you share with me who you see at Mayo for your schwannomatosis? I was diagnosed with schwannomatosis in 2011 and am a patient at a prominent medical center with a well-known NF Clinic. However, my pain is just terrible so I want to have a consult at Mayo. When I contacted Mayo, they set me up for an appointment with a neurologist who is not part of its NF department. I had to cancel the appointment because I suffered a spontaneous pneumothorax (collapsed lung) and could not travel. I am ok to travel now so want to reschedule but I think I need to be seen by an NF specialist, no? Or should I just be seen by the neurologist assigned to me? Would appreciate any guidance! Thanks so much.

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Hi @keikowacko After 1996, I returned to Mayo in Rochester again in 2007. I had the possibility of NF in 1996. I also saw a neurologist first in 2007. With an MRI, I had confirmed spinal tumors. Then, I became a patient of Dr. Robert J. Spinner, a neuro-surgeon. I had two surgeries in 2008. He is an NF and Schwannomatosis expert there. Through Dr. Spinner, Schwan was confirmed by genetic testing in 2008. I return to see him regularly to monitor those tumors. I’m not an expert in the steps for appointments, but you may need to see the neurologist first. The neurologist could choose tests, perhaps MRI to look into a reason for pain. I felt pain in a particular area and that is how my NF had returned from 1996. Since Dr. Spinner is a surgeon, you would go on to see him if you needed surgery. Both times, my primary care physician made the arrangements for me to go to Mayo. I don’t remember the name of the neurologist I saw, a woman, who I saw just once. I know you can contact Mayo on your own, also, and request appointments or doctors. Sorry, that I cannot be more helpful.

Hi – I've had 5 surgeries for Schwannomas once the pain was unbearable. I currently have about 20 – and I'm getting to that pain threshold again. Can anyone tell me whether the Arizona Mayo Clinic is a god one to visit for Schwannomatosis, with pudendal nerve tumors in the ischiorectal fossa area? It's bad. I'm a Kaiser Permanente patient currently – and am looking to be a cash patient for a consult with someone who gets it and has a better plan than just 'well, we'll just cut 'em out! oh well if you lose urological and continence functions – at least you won't have the pain!'. I'm in CA and am hoping the AZ clinic is good.

@schwannjohn

Hi – I've had 5 surgeries for Schwannomas once the pain was unbearable. I currently have about 20 – and I'm getting to that pain threshold again. Can anyone tell me whether the Arizona Mayo Clinic is a god one to visit for Schwannomatosis, with pudendal nerve tumors in the ischiorectal fossa area? It's bad. I'm a Kaiser Permanente patient currently – and am looking to be a cash patient for a consult with someone who gets it and has a better plan than just 'well, we'll just cut 'em out! oh well if you lose urological and continence functions – at least you won't have the pain!'. I'm in CA and am hoping the AZ clinic is good.

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Hello, I was just reading your post and wish you well and a pain free life. I have had severe pain in my rectum on the upper left side for the past 8 years. I have had 4 colon doctors tell me different diagnosis. The last doctor telling me it's not levator ani but torn muscles behind nerves. The doctor said no one would perform surgery because it would leave me incontinent. Do you mind telling where your pain is? My level of pain is so bad and I'm taking dilata to help
Thx. Tom

@schwannjohn

Hi – I've had 5 surgeries for Schwannomas once the pain was unbearable. I currently have about 20 – and I'm getting to that pain threshold again. Can anyone tell me whether the Arizona Mayo Clinic is a god one to visit for Schwannomatosis, with pudendal nerve tumors in the ischiorectal fossa area? It's bad. I'm a Kaiser Permanente patient currently – and am looking to be a cash patient for a consult with someone who gets it and has a better plan than just 'well, we'll just cut 'em out! oh well if you lose urological and continence functions – at least you won't have the pain!'. I'm in CA and am hoping the AZ clinic is good.

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Hello, your post was shared with me because of NF and Schwannomatosis. I am familiar with the Mayo Clinic Rochester only. I see Dr. Robert J. Spinner, a neurosurgeon. My NF/Schwann is very mild and have had only a few tumors and a few surgeries. I know others with more serious cases like yours and I am sorry, I know from them it is very very hard. Dr. Spinner is one of their NF experts and also, with peripheral nerves. There is no cure for NF. There is no medication, unless a form of chemo, to shrink these tumors – to help with the fact that surgery is difficult, because they wrap so much into the nerves. I’ve heard the expression “haircut” in reference to tumors from friends who have had many surgeries. Because nerve damage is at great risk, quality surgery to reduce your tumors may be your best option. I learned from another NF friend that some chemo drugs can help with pain. I want to recall that the drug was Avastin, but you would need to inquire. Dr. Jashiri Blakely at John Hopkins is an expert in NF, Schwannomatosis and Avastin, also. For an opinion beyond general surgery/colon you could consider a good NF Clinic, NF speciality neurological surgeons for a second opinion. I wish the best for you, some choices, answers and less pain.

@tjp4

Hello, I was just reading your post and wish you well and a pain free life. I have had severe pain in my rectum on the upper left side for the past 8 years. I have had 4 colon doctors tell me different diagnosis. The last doctor telling me it's not levator ani but torn muscles behind nerves. The doctor said no one would perform surgery because it would leave me incontinent. Do you mind telling where your pain is? My level of pain is so bad and I'm taking dilata to help
Thx. Tom

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Hi, @tjp4 – thanks for your well wishes for @schwannjohn. It sounds like you've had to deal with pain for a very long time, and that must be extremely hard. Do you also have schwannomatosis, @tjp4?

@nfrunner

Hello, your post was shared with me because of NF and Schwannomatosis. I am familiar with the Mayo Clinic Rochester only. I see Dr. Robert J. Spinner, a neurosurgeon. My NF/Schwann is very mild and have had only a few tumors and a few surgeries. I know others with more serious cases like yours and I am sorry, I know from them it is very very hard. Dr. Spinner is one of their NF experts and also, with peripheral nerves. There is no cure for NF. There is no medication, unless a form of chemo, to shrink these tumors – to help with the fact that surgery is difficult, because they wrap so much into the nerves. I’ve heard the expression “haircut” in reference to tumors from friends who have had many surgeries. Because nerve damage is at great risk, quality surgery to reduce your tumors may be your best option. I learned from another NF friend that some chemo drugs can help with pain. I want to recall that the drug was Avastin, but you would need to inquire. Dr. Jashiri Blakely at John Hopkins is an expert in NF, Schwannomatosis and Avastin, also. For an opinion beyond general surgery/colon you could consider a good NF Clinic, NF speciality neurological surgeons for a second opinion. I wish the best for you, some choices, answers and less pain.

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Thanks for that compassion, @nfrunner – I am grateful to connect with a few fellow travelers along this particular unknown road. I'm hoping to find out more about the Arizona clinic – maybe someone will pop in on that. I wish I could contact Dr. JAshiri Blakely personally to ask professional opinion by email… Anyone know that contact?

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