Hi there, I'm Neil Myers and I am the coordinator of the online group "Schwannoma Survivors & Schwannoma Fighters". We have this blog by the same name, and also a Facebook page with approximately 140 members. Probably 95% of those people have either been diagnosed with one or more Scwhannomas, or they have a family member who has.
This short blog is for anyone who is doing research on Schwannomas. We want to let you know that we are here, and some of us would be willing to share some our stories and our medical specifics with anyone who is doing medical research on Schwannomas.
When I founded the page nearly a year ago, I looked around on Facebook and other places to see if there were any groups for people who have had Schwannomas. I didn't find any. Even the medical information available was not very clear, and sometimes simply matters mentioned in very densely worded medical journals. I wanted to make a page that would provide support and information for those who have had or currently have Schwannomas. And one of the stated purposes was to bring light on these tumors - which are not terribly common. (Though I have not read or been made aware of statistics that can state exactly how rare.)
If any Physician or person doing medical research on these tumors would like to contact us, visit us on the facebook page at:
https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
Or email me at: neilmyersart@gmail.com .
We are here. Let us know if we can help!
Neil Myers
Survivor of Thoracic Spinal Schwannoma, removed in 2009
Sunday, October 6, 2013
Saturday, June 15, 2013
A Short Q and A with Dr George Jallo - Answering Some Basic Questions About Schwannomas
This post I am very happy to share with everyone - Dr George Jallo of Johns Hopkins Hospital was kind enough to agree to answer a short Q and A to try to help us with some clear answers to fundamental questions about Schwannomas and what is typical for those who have been diagnosed with one or more of them. Dr Jallo is Professor of Neurological Surgery, Pediatrics and Oncology, Clinical Director, Pediatric Neurosurgery, Director, Neurosurgery Residency Program at Johns Hopkins. I told him that I hope that we can answer some of the basic questions about Schwannomas so that we may be able to fill a gap that there seems to be in people's knowledge of these tumors, and here are his answers to a simple set of questions I sent him. - Neil
I would say that I have only observed 10% of patients as the remaining patients (patients that do not have their Schwannomas removed). We do not operate on some smaller tumors in older patients. Of the Schwannomas we see we operate on approximately 90% due to the fact that patients either have symptoms from the tumor or the tumor has grown on serial MRI scans.
I do not recommend any specific hospital but to ask your surgeon how many such tumors he/she has operated on and long term results. You just want to have an experienced surgeon perform the operation.
1)
Being diagnosed with a Schwannoma is a frequently
confusing and upsetting situation for those who are affected by these
tumors. What would you say is the most important advice that you would
give someone newly diagnosed with a Schwannoma?
What are, in your opinion, are wise first steps to take ?
The best advice if once diagnosed with a Schwannoma is to confirm the diagnosis and obtain all the details. Where
is the tumor, how large is it? Is it compressing by spinal cord or brain? Do I need to be screened for other tumors. Fortunately
the vast majority of these tumors are benign and do not require any
treatment further than surgery. One needs to be certain it is a
schwannoma and not another tumor type.
However the only sure way to have the correct diagnosis is surgery and
then histological analysis/biopsy of the tumor
2)
I have said to people on our FB page that, from my own experience,
being diagnosed with a Schwannoma usually means that one will face
surgery at some point, now or later. I asked my own GP and neurosurgeon
if they would validate that statement, generally, and they both said
yes. Do you also take this view that Schwannomas will, in most or
almost all cases, require surgery at some point? And what are some
cases, if you can give any general or specific advice,
in which one may NOT want to opt for removal of their Schwannoma?
Please share any specifics you can to shed some light on the removal or
non-removal of Schwannomas.
Once diagnosed most people will
require surgery as although these tumors are benign they do grow slowly.
The only exception that surgery is not needed is when these tumors are
very small or in a location which does not compress the
spinal cord, brain or nerves.
3)
In your own career as a surgeon, in the cases where you have had to
help patients confront Schwannomas, approximately what percentage of
those were removed by surgery? I understand specifics may not be
possible,
but a general estimation would perhaps be helpful in helping people
understand how many have to come out, and how many are treated or
monitored by other means.
I would say that I have only observed 10% of patients as the remaining patients (patients that do not have their Schwannomas removed). We do not operate on some smaller tumors in older patients. Of the Schwannomas we see we operate on approximately 90% due to the fact that patients either have symptoms from the tumor or the tumor has grown on serial MRI scans.
4) People are
frequently confused and feeling a bit lost after diagnosis with a
Schwannoma. Are there any online resources that you would suggest for
those who are newly diagnosed? Anything to help them understand
their situation better?
No good sites as most focus on multiple schwannomas or neurofribromatosis. *Note from Neil - we hope to remedy this!
5) Do you have a
suggestion as to what hospitals and research hospitals are the best when
it comes to Schwannoma surgery? We all understand that Johns Hopkins,
your hospital, is one of the top facilities anywhere
- but for those in other parts of the country who may not have easy
access to JH, are there any other excellent programs that you would
suggest? I do not recommend any specific hospital but to ask your surgeon how many such tumors he/she has operated on and long term results. You just want to have an experienced surgeon perform the operation.
Dr. George I. Jallo
Professor of Neurological Surgery, Pediatrics and OncologyClinical Director, Pediatric Neurosurgery
Director, Neurosurgery Residency Program
Director, Neurosurgery Residency Program
CONTACT INFORMATIONThe Johns Hopkins Hospital
Department of Neurosurgery
600 N. Wolfe Street, Phipps 556
Baltimore, MD 21287
Department of Neurosurgery
600 N. Wolfe Street, Phipps 556
Baltimore, MD 21287
410-955-7851 (p)
410-955-7862 (f)
(Disclaimer: advice shared on this
blog or on our related Facebook page cannot be a replacement for proper
medical treatment by a trained physician. Speak with a Doctor before
making any medical decisions.)
Wednesday, May 1, 2013
Moral Support, Surviving Schwannomas With the Help of Family and Friends
Sometimes the answer to something fairly complex is right in front of you. These days we just have to take a moment, and hopefully stop looking at our gadgets, and realize the obvious. I was thinking about all this as it regards recovery from illness. When you meet people who have suffered something similar to you, there is a natural tendency towards shop talk. Ie, what medications you find have worked for you....how you manage chronic pain afterwards...or what kind of experience did you have with physio-therapy afterwards. This is the case frequently with Schwannoma survivors, and that is all well and good - and natural. Yet there is another element that looms large over one's ability to recover from illness, and that is the moral support from family, friends, and loved ones.
I should say that one of the things I hear most often, as the coordinator of the "Schwannoma Survivors and Schwannoma Fighters" Facebook page, is how grateful people are for the support of other survivors that are a part of the page. Kinds of comments like "I am so glad to talk to people who really understand"...and "Thanks so much for doing this" etc. What I realized in my countless conversations with these wonderful people is that one of the things that they value most is the moral support from other people who have been through the same experience. I told someone it might be a little like the feeling of kinship that soldiers have if they have been to war together - but in our case, the war was in our own bodies. It has been a happy and humble journey, on my part at least, to feel the kindness and warmth coming back at me from people who now have a way to talk to others who have been through this. And there is a tone almost of relief - that intangible moral support is something that is, I think, not talked about enough.
I have told many Schwannoma Survivors that in my worst moments, in late 2008 and early 2009 - I didn't much care about anything. Just simply getting through one day and onto the next was a task that required every ounce of my energy, both mental and physical. I didn't care about my paintings - which have been my life's work. I didn't care about those beautiful places I was sure I would never see. Even the presence of my extended family, who I all love dearly, receded into the background when each day just became a grinding, grueling struggle against constant pain. When I think back to what sustained me, it was really only two things; my lovely wife, and our baby son who was born in March of 2009. Little else mattered. I felt like an airplane descending, and I knew that when I finally hit the ground, I would be in a wheelchair and life would be unalterably different. But my wife kept at me. She kept me going to Doctor's appointments. She kept me pushing on, even when I was miserable. And our beautiful little boy, Liam, needed only his smile and his being there to remind me that I had a home team worth fighting for. In the end, in all came down to my wife and son - and to be honest, and I have told some close friends - and I believe I am saying this publicly for the first time now; if it weren't for those two people I would have had no qualms whatsoever about ending my life, by one means or another. And I value life above all things. I am not religious so I live on the assumption that this may well be the only life we have. I would not waste it or throw it away on a whim. But when pain has ground you down - those thoughts do creep in. A pain sufferer's mind is ruled by that one inescapable thought...I want this to STOP.
Fortunately, my tumor was found and removed and I have lived not only to enjoy my days with my wife and son, but in November of this past year we welcomed our second son into the world. I now feel that I could be broke and on my last penny and still be a rich man in this world.
So it is my hope that if there is someone out there fighting a hard fight, I hope you have your family or someone you love and care for and who do the same for you. And I hope that there are people in your life that don't let you go when you are upset - who tell you and believe that you can conquer any mountain before you. I have said before that you can do anything if you are loved - and whatever you do if you don't have love in your life won't mean diddly shit. I hope we can all remember the value of not just the empirical knowlege, but the moral support and no-strings attached friendship that gets us through rough times.
Many times in the past I have done things for people and they would look at me like "Uh, thanks, but what's your deal?" I actually enjoy just trying to do good with NO expectation of reward. But in fact, I think what the Dalai Lama said is true - that trying to live a life guided by kindness and compassion is as much for yourself as the others you help. My payment for doing good - or trying to, is that good feeling I get when I put my head down to sleep at night. I don't expect a pot of gold on my doorstep. And I am suspicious of people who do good with clear expectation of reward. No, I try to do good - to offer friendship and moral support because it makes me feel good. And maybe...just maybe, it makes this venemous world a little more tolerable for people who want to live well in it.
So I say hat's off for that most intangible kind of support - that slap on the back. That hug that you weren't expecting. That extra beer you had with your friend when you could tell that they needed to talk. And to that grateful, kind look that says back to you "I'll be there for YOU if you ever need ME." Much of the world makes a virtue of being tough - and that of course has it's uses. But I for one think that people who strut around and act tough are probably much like those boxers with a glass chin. I know, and I have no doubt about this - that the people who really are tough are ones who have been through the fight and know just how low the bottom really is. And they had people around them love them and lift them up to keep them afloat. I had this. You can't put a price on it. You can't put it in a bottle and sell it. But you sure you know it when you have it...
Neil
(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
I should say that one of the things I hear most often, as the coordinator of the "Schwannoma Survivors and Schwannoma Fighters" Facebook page, is how grateful people are for the support of other survivors that are a part of the page. Kinds of comments like "I am so glad to talk to people who really understand"...and "Thanks so much for doing this" etc. What I realized in my countless conversations with these wonderful people is that one of the things that they value most is the moral support from other people who have been through the same experience. I told someone it might be a little like the feeling of kinship that soldiers have if they have been to war together - but in our case, the war was in our own bodies. It has been a happy and humble journey, on my part at least, to feel the kindness and warmth coming back at me from people who now have a way to talk to others who have been through this. And there is a tone almost of relief - that intangible moral support is something that is, I think, not talked about enough.
I have told many Schwannoma Survivors that in my worst moments, in late 2008 and early 2009 - I didn't much care about anything. Just simply getting through one day and onto the next was a task that required every ounce of my energy, both mental and physical. I didn't care about my paintings - which have been my life's work. I didn't care about those beautiful places I was sure I would never see. Even the presence of my extended family, who I all love dearly, receded into the background when each day just became a grinding, grueling struggle against constant pain. When I think back to what sustained me, it was really only two things; my lovely wife, and our baby son who was born in March of 2009. Little else mattered. I felt like an airplane descending, and I knew that when I finally hit the ground, I would be in a wheelchair and life would be unalterably different. But my wife kept at me. She kept me going to Doctor's appointments. She kept me pushing on, even when I was miserable. And our beautiful little boy, Liam, needed only his smile and his being there to remind me that I had a home team worth fighting for. In the end, in all came down to my wife and son - and to be honest, and I have told some close friends - and I believe I am saying this publicly for the first time now; if it weren't for those two people I would have had no qualms whatsoever about ending my life, by one means or another. And I value life above all things. I am not religious so I live on the assumption that this may well be the only life we have. I would not waste it or throw it away on a whim. But when pain has ground you down - those thoughts do creep in. A pain sufferer's mind is ruled by that one inescapable thought...I want this to STOP.
Fortunately, my tumor was found and removed and I have lived not only to enjoy my days with my wife and son, but in November of this past year we welcomed our second son into the world. I now feel that I could be broke and on my last penny and still be a rich man in this world.
So it is my hope that if there is someone out there fighting a hard fight, I hope you have your family or someone you love and care for and who do the same for you. And I hope that there are people in your life that don't let you go when you are upset - who tell you and believe that you can conquer any mountain before you. I have said before that you can do anything if you are loved - and whatever you do if you don't have love in your life won't mean diddly shit. I hope we can all remember the value of not just the empirical knowlege, but the moral support and no-strings attached friendship that gets us through rough times.
Many times in the past I have done things for people and they would look at me like "Uh, thanks, but what's your deal?" I actually enjoy just trying to do good with NO expectation of reward. But in fact, I think what the Dalai Lama said is true - that trying to live a life guided by kindness and compassion is as much for yourself as the others you help. My payment for doing good - or trying to, is that good feeling I get when I put my head down to sleep at night. I don't expect a pot of gold on my doorstep. And I am suspicious of people who do good with clear expectation of reward. No, I try to do good - to offer friendship and moral support because it makes me feel good. And maybe...just maybe, it makes this venemous world a little more tolerable for people who want to live well in it.
So I say hat's off for that most intangible kind of support - that slap on the back. That hug that you weren't expecting. That extra beer you had with your friend when you could tell that they needed to talk. And to that grateful, kind look that says back to you "I'll be there for YOU if you ever need ME." Much of the world makes a virtue of being tough - and that of course has it's uses. But I for one think that people who strut around and act tough are probably much like those boxers with a glass chin. I know, and I have no doubt about this - that the people who really are tough are ones who have been through the fight and know just how low the bottom really is. And they had people around them love them and lift them up to keep them afloat. I had this. You can't put a price on it. You can't put it in a bottle and sell it. But you sure you know it when you have it...
Neil
(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Monday, April 22, 2013
Sailing the High Seas - The Crossing to Recovery, by Vitor De Souza Carneiro
(Here is a new post by Vitor De Souza Carneiro, a great friend of the "Schwannoma Survivors" Facebook page and blog. He just recently had surgery to remove a Schwannoma, and was kind enough to write a bit about his experiences post surgery. Thanks Vitor! Neil)
And the Big Day came. I was feeling great the day I went to hospital to have the operation. The main reason was that I had managed to organize almost everything before hand so I could come back to what I call a “Recovery Temple”. The day before surgery was also special. I spent all day with my wife, enjoying, not even thinking about surgery.
I know it sounds weird, but I was actually excited about the whole thing. Finally a major mile stone on the healing process: The removal of the tumor. My neurosurgeon came into the room and we had a nice chat. I told him I hadn’t felt any pain, what so ever, for the last 3 months. With a tumor the size of mine, that was pretty unusual and he took the time again to look at the images and discuss the importance of the operation. I really appreciated that. The last thing I told him was: “Doc, you got my back!”
I knew it would be straight forward, in and out. Done. My wife said it was the 5 longest hours of her life (4 hr of actual procedure). When I opened my eyes I felt like I had been chopped in half by a chainsaw. But that only lasted a few seconds and they gave me a nice relaxing happy something that had me feeling ‘no worries’ for the next 48 hrs. The doctor was very happy with the procedure. They managed to remove all the tumor and there was no major complications. He even showed me pictures of the procedure while I was in ICU.
I spent a total of 7 days in hospital. Bloody long time, but not really. I knew that every second there was important. I was being looked after so well by all the staff. There were, as expected, a few small challenges though. I had really strong headaches and was feeling nauseated and vomiting for good 3 days. Then, they wanna get you up and going as quick as possible. But because my body was still producing the liquid that soaks our nervous system, I had this massive headache and my eye balls felt like they were going to pop out.
That is when surrender and patience come into play. Even though having a major spinal surgery is not the most smooth experience one can have, if you are patient, things will stabilize again. Well, the days went by and the so awaited discharge came. Quick note: Here might not be the place to express my reflections on Patience and other philosophical question about life, but feel free to write me and we can exchange ideas.
It felt really good to be home. Special friends came for quick visits and I was slowly getting my bearings. But once again, I had to surrender and accept. For someone hyperactive active (when I say hyper I mean suppa duppa Hyper active) to be so deprived of free and easy mobility is a major issue. Again, patience and relearning. I have to be really respectful and mindful of all my movements and almost everything needs to be calculated. After a while we just figure things out and adapt. So, in regards of the practical sides of things my wife is being superb and we are making things happen, very slowly. The boat is just Sailing by...
But it didn’t take long until I started to see a few nasty looking clouds forming in the horizon. And before we could do much the storm hit us. I used to sleep like a sloth, not anymore. My bowel used to function like a swiss clock, not anymore and I used to have a good humor, not anymore. That hit us day 2/3 at home. This is the message I sent my friend Neil of how I could better describe how I was feeling:
“We are sailing the storm. The sea is a bit rough, bumpy and gusty but we got the boat under control. The forecast looks good. For the moment we can only keep steering and getting used to the "roughness".Will see a good Physio tomorrow. “
And sure enough the storm passed. Through natural medicines we manage to get my guts working again (gosh, that felt good) and reestablish a decent sleep. But I know that this recovery is like a ocean crossing: we might know the prevailing winds and currents but anything can happen, any time. So, we take as it comes. Sometimes uncomfortable, sometimes magic like a beautiful sunset in the middle of the Atlantic. The most important thing is that I am learning heaps about myself, about life and about LOVE.
(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
And the Big Day came. I was feeling great the day I went to hospital to have the operation. The main reason was that I had managed to organize almost everything before hand so I could come back to what I call a “Recovery Temple”. The day before surgery was also special. I spent all day with my wife, enjoying, not even thinking about surgery.
I know it sounds weird, but I was actually excited about the whole thing. Finally a major mile stone on the healing process: The removal of the tumor. My neurosurgeon came into the room and we had a nice chat. I told him I hadn’t felt any pain, what so ever, for the last 3 months. With a tumor the size of mine, that was pretty unusual and he took the time again to look at the images and discuss the importance of the operation. I really appreciated that. The last thing I told him was: “Doc, you got my back!”
I knew it would be straight forward, in and out. Done. My wife said it was the 5 longest hours of her life (4 hr of actual procedure). When I opened my eyes I felt like I had been chopped in half by a chainsaw. But that only lasted a few seconds and they gave me a nice relaxing happy something that had me feeling ‘no worries’ for the next 48 hrs. The doctor was very happy with the procedure. They managed to remove all the tumor and there was no major complications. He even showed me pictures of the procedure while I was in ICU.
I spent a total of 7 days in hospital. Bloody long time, but not really. I knew that every second there was important. I was being looked after so well by all the staff. There were, as expected, a few small challenges though. I had really strong headaches and was feeling nauseated and vomiting for good 3 days. Then, they wanna get you up and going as quick as possible. But because my body was still producing the liquid that soaks our nervous system, I had this massive headache and my eye balls felt like they were going to pop out.
That is when surrender and patience come into play. Even though having a major spinal surgery is not the most smooth experience one can have, if you are patient, things will stabilize again. Well, the days went by and the so awaited discharge came. Quick note: Here might not be the place to express my reflections on Patience and other philosophical question about life, but feel free to write me and we can exchange ideas.
It felt really good to be home. Special friends came for quick visits and I was slowly getting my bearings. But once again, I had to surrender and accept. For someone hyperactive active (when I say hyper I mean suppa duppa Hyper active) to be so deprived of free and easy mobility is a major issue. Again, patience and relearning. I have to be really respectful and mindful of all my movements and almost everything needs to be calculated. After a while we just figure things out and adapt. So, in regards of the practical sides of things my wife is being superb and we are making things happen, very slowly. The boat is just Sailing by...
But it didn’t take long until I started to see a few nasty looking clouds forming in the horizon. And before we could do much the storm hit us. I used to sleep like a sloth, not anymore. My bowel used to function like a swiss clock, not anymore and I used to have a good humor, not anymore. That hit us day 2/3 at home. This is the message I sent my friend Neil of how I could better describe how I was feeling:
“We are sailing the storm. The sea is a bit rough, bumpy and gusty but we got the boat under control. The forecast looks good. For the moment we can only keep steering and getting used to the "roughness".Will see a good Physio tomorrow. “
And sure enough the storm passed. Through natural medicines we manage to get my guts working again (gosh, that felt good) and reestablish a decent sleep. But I know that this recovery is like a ocean crossing: we might know the prevailing winds and currents but anything can happen, any time. So, we take as it comes. Sometimes uncomfortable, sometimes magic like a beautiful sunset in the middle of the Atlantic. The most important thing is that I am learning heaps about myself, about life and about LOVE.
(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Thursday, March 21, 2013
Do You Have a Story About Fighting a Schwannoma? An Invitation to Submit a Blog Post
Hi everyone this is Neil - I had a thought the other day that I felt might be useful. Frequently when new people come on to our Facebook page "Schwannoma Surviviors and Schwannoma Fighters" I invite them to submit a blogpost on their experiences. I have said to countless people that I had never heard the word "Schwannoma" before my surgeon told me that I had one in my spinal cord in 2009. In thinking about this I know that everyone wants to "raise awareness" about everything under the sun, including rare diseases and conditions. That, of course, is a good thing. But I have always been interested in doing more than just letting people know what a Schwannoma is and what it does to you. I had the idea that because of the gap in information, that we needed to answer useful questions about Schwannomas and their effects. I thought that one of the best ways to do this would be to create a blog, affiliated with our Facebook page, that could be used to publish firsthand stories of people dealing with Schwannomas. It seemed to me that if we put as many stories online as possible, then when other people went searching - feeling lost and confused as so many of us have, then they could find these blogposts and read whatever might be relavent to their lives.
So far, I have invited only those people who are affiliated with our Facebook page - but I also wanted to extend the invitation to anyone, anywhere, who has a story to tell about the way that Schwannomas have affected their lives. (Et aussi, je parle Francais, si vous avez besion d'envoyer un blogpost, peut etre, pas trop grand - en Francais, sur le sujet des Schwannomas) A lot of the world is on Facebook, sure, but for those of you who are not, I wanted to invite you all to contact me at:
neilmyersart@gmail.com
You don't have to be a poet or master of prose to submit a piece for the blog. I have posted almost everything unedited, except for corrections on a few misspellings and tiny things. We want to hopefully get enough stories out there to provide some hope and consolation to people who are or have been struggling with these terrible tumors. And all stories will be welcome - I have had people contact me whose outcomes after surgery were not the best. The blog is not intended to highlight only the sunny results - we will tell the story completely and as honestly as possible.
So please remember that if you or a family member has been affected by a Schwannoma, you are invited to write a post for this blog. Perhaps in doing so we can alleviate some of the confusion and suffering for those who are newly diagnosed - and know that our own suffering hasn't been in vain if we try, with all our might, to turn it to something good and useful. Thanks all!
Neil
Visit the facebook page at: https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
So far, I have invited only those people who are affiliated with our Facebook page - but I also wanted to extend the invitation to anyone, anywhere, who has a story to tell about the way that Schwannomas have affected their lives. (Et aussi, je parle Francais, si vous avez besion d'envoyer un blogpost, peut etre, pas trop grand - en Francais, sur le sujet des Schwannomas) A lot of the world is on Facebook, sure, but for those of you who are not, I wanted to invite you all to contact me at:
neilmyersart@gmail.com
You don't have to be a poet or master of prose to submit a piece for the blog. I have posted almost everything unedited, except for corrections on a few misspellings and tiny things. We want to hopefully get enough stories out there to provide some hope and consolation to people who are or have been struggling with these terrible tumors. And all stories will be welcome - I have had people contact me whose outcomes after surgery were not the best. The blog is not intended to highlight only the sunny results - we will tell the story completely and as honestly as possible.
So please remember that if you or a family member has been affected by a Schwannoma, you are invited to write a post for this blog. Perhaps in doing so we can alleviate some of the confusion and suffering for those who are newly diagnosed - and know that our own suffering hasn't been in vain if we try, with all our might, to turn it to something good and useful. Thanks all!
Neil
Visit the facebook page at: https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
Thursday, March 14, 2013
Progress Report After Schwannoma Surgery, Four Months Later, by Jamie Dubinsky
One of my stated goals with our Facebook page and this blog is to get as many stories online as possible from people who are at every stage of dealing with schwannoma tumors. This includes checking in with those who have had surgery recently to see how their recovery is going and share what life is like after. My dear friend that I refer to as my "partner in crime" for this blog and facebook page, Jamie Dubinsky, has been kind enough to write a short blog with some information about her condition 4 months after spinal schwannoma surgery. Thanks to Jamie for sharing!
Neil
My Self Progress Report (4 Months Post-Op)
It’s been about 4 months and 1 week since my November spinal
cord schwannoma removal. It seemed like
I would never reach this point, but I am 95% back to my normal activities. I still suffer lack of flexibility in my left
hamstring and experience slight numbness in the front of my left thigh. I also experience pain around my surgical
site, with sensations of muscle tightness and bone pain radiating to my
sacral-iliac joint. Since my surgery
involved drilling of a hole through the L2 vertebrae and the requirement of a
year for the bone to heal, I would think this is normal post-op pain.
Although I am back to my normal fitness activities, I still
need to exercise caution with some physical movements. I absolutely cannot lie on the floor to
perform abdominal crunches for the surface of the floor (carpet, a soft mat) is
too hard on my back. If I lie on a hard
surface for too long I cannot sit straight up, but need to roll onto my side to
avoid the pain in my mid-back. I was
also told “No high impact sport activities for one year” by my surgeon. Yet, approximately 1 month ago I was running
through a snowy field after my dog and I tripped over a hidden tree branch (I
guess this constitutes a high impact fall!).
The impact from the fall definitely induced pain and side effects that
had previously subsided since November.
Shortly after taking the spill in the field I had my follow up MRI,
which revealed no damage to the bones and spinal cord!
Prior to surgery I could not sleep through a night, but now
the only time I wake up through a night’s sleep is if I had too much water before
bed! I could not run, jump or even
throw a ball to my dog without searing pain shooting through my body; now I
can do all of these things without this overwhelming sensation. I am 100% happy with my decision to go
through with the surgery. I can finally
live life like a healthy human being again!
(Disclaimer: advice shared on this
blog or on our related Facebook page can not be a replacement for proper
medical treatment by a trained physician. Speak with a Doctor before
making any medical decisions.)
Tuesday, March 5, 2013
The Time Before Schwannoma Surgery, by Vitor De Souza Carneiro
Hi everyone! I'm very pleased to share with you guys a blogpost from our 3rd individual contributor to the blog, this one from Vitor De Souza Carneiro, from Sydney Australia. He has graciously offered to write a bit about his experience with his Schwannoma in the period leading up to surgery. I'm very grateful to Vitor for sharing his story, and we all join in wishing him well in surgery, healing and recovery. Neil
Five weeks before my surgery. Since I discovered the tumor in my spine (October, 2011) the thought of not having it removed has always roved my mind. When I first heard I had the tumor it wasn’t as bad as the news I had to get it removed by surgery.
The first Neurosurgeon I saw was very straight to the point and dealt with the situation in a very cold manner. I did not receive that well. He was a very reputable doctor but at the time I wasn’t prepared to surrender for such objectivity and coldness.
I went home after that consultation and started a long process of researching about my condition. Nowadays it is relatively easy to access information (which is totally different than knowledge) and draw a map of the situation. And that is what I did. I read about schwannomas, it is growing nature and tendencies, about the procedures, watched youtube videos of surgeons operating on, read peer reviewed articles on the spinal surgery and schwannoma theme. Well, that is the easy bit... It is all there for us to see... But when I look at the bigger picture, it gets complex.
The information I mentioned above is rooted in science, and as we all know (or should know), it has its limitations. The blunt truth is: I am a lab rat and a solid knowledge about tumors and how to deal with them in a effective way is still being developed. This is the reason why we are so scared about dealing with spinal tumors. We have no guarantees whatsoever and our options are very restricted. Unfortunately, it is a gamble, and I can only hope for the best (that is how I feel).
I went on to look at other alternatives. I got to know about people that chose not be operated to remove cancer and are doing fine, people that cured their conditions by changing their diet, acupuncture, herbs, yoga, meditation... and so on. It was very important for me. I really enjoyed experiencing this whole new field of possibilities. Learning about other ways to understand myself and this new moment. I understood that It wasn’t about simply removing the tumor... It was about living, about how to deal with the unknown, about what really matters in my life. It was about self discovery.
It sounds weird but I kinda gotta excited about the whole thing. I traveled to be close to my family and dear friends. I spent time and talked with them. They listened and helped me realize something important: I shouldn’t deny western medicine, I should balance my live and a complementary approach was the way. Complementary in a sense that I will make use of different approaches to deal with the tumor and the outcome of the surgery.
While I was away, I also met this guy in a party. He had had surgery about 2 years ago to removed a Schwanomma from his lower back. He had no leftovers and lived life to the fullest.
Got back home last October (2012) and went to meet another doctor to have a second opinion. He was a bit more opened then the first one. Took the time to explain better my condition and possible problems if I didn’t remove the tumor. Maybe the first doctor did the same thing but I wasn’t prepared to listen. He wanted to operate soon. I said I needed more time because of a few personal issues (work related). We booked the surgery for 6 months later. Before I leave his room I shook his hand strong and looked in his eyes. I said: We doing it doc, we doing it together. He gave me a look like: Weird, this guy is weird. Oh, well...
Now it is getting close. I have been preparing myself. Eating good food, being healthy, doing yoga, running, swimming, loving... keeping a high spirit, enjoying each moment. Sometimes I get scared as well. Is it gonna be all right? I know it is going to hurt. It is a little bit like going on a big adventure. Exciting but scary at the same time.
I am glad I took the time I needed for it all to sink in. I feel a lot more grounded now. This group has helped me heaps and I hope that by sharing my experience I can help other people.
Vitor De Souza Carneiro
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Five weeks before my surgery. Since I discovered the tumor in my spine (October, 2011) the thought of not having it removed has always roved my mind. When I first heard I had the tumor it wasn’t as bad as the news I had to get it removed by surgery.
The first Neurosurgeon I saw was very straight to the point and dealt with the situation in a very cold manner. I did not receive that well. He was a very reputable doctor but at the time I wasn’t prepared to surrender for such objectivity and coldness.
I went home after that consultation and started a long process of researching about my condition. Nowadays it is relatively easy to access information (which is totally different than knowledge) and draw a map of the situation. And that is what I did. I read about schwannomas, it is growing nature and tendencies, about the procedures, watched youtube videos of surgeons operating on, read peer reviewed articles on the spinal surgery and schwannoma theme. Well, that is the easy bit... It is all there for us to see... But when I look at the bigger picture, it gets complex.
The information I mentioned above is rooted in science, and as we all know (or should know), it has its limitations. The blunt truth is: I am a lab rat and a solid knowledge about tumors and how to deal with them in a effective way is still being developed. This is the reason why we are so scared about dealing with spinal tumors. We have no guarantees whatsoever and our options are very restricted. Unfortunately, it is a gamble, and I can only hope for the best (that is how I feel).
I went on to look at other alternatives. I got to know about people that chose not be operated to remove cancer and are doing fine, people that cured their conditions by changing their diet, acupuncture, herbs, yoga, meditation... and so on. It was very important for me. I really enjoyed experiencing this whole new field of possibilities. Learning about other ways to understand myself and this new moment. I understood that It wasn’t about simply removing the tumor... It was about living, about how to deal with the unknown, about what really matters in my life. It was about self discovery.
It sounds weird but I kinda gotta excited about the whole thing. I traveled to be close to my family and dear friends. I spent time and talked with them. They listened and helped me realize something important: I shouldn’t deny western medicine, I should balance my live and a complementary approach was the way. Complementary in a sense that I will make use of different approaches to deal with the tumor and the outcome of the surgery.
While I was away, I also met this guy in a party. He had had surgery about 2 years ago to removed a Schwanomma from his lower back. He had no leftovers and lived life to the fullest.
Got back home last October (2012) and went to meet another doctor to have a second opinion. He was a bit more opened then the first one. Took the time to explain better my condition and possible problems if I didn’t remove the tumor. Maybe the first doctor did the same thing but I wasn’t prepared to listen. He wanted to operate soon. I said I needed more time because of a few personal issues (work related). We booked the surgery for 6 months later. Before I leave his room I shook his hand strong and looked in his eyes. I said: We doing it doc, we doing it together. He gave me a look like: Weird, this guy is weird. Oh, well...
Now it is getting close. I have been preparing myself. Eating good food, being healthy, doing yoga, running, swimming, loving... keeping a high spirit, enjoying each moment. Sometimes I get scared as well. Is it gonna be all right? I know it is going to hurt. It is a little bit like going on a big adventure. Exciting but scary at the same time.
I am glad I took the time I needed for it all to sink in. I feel a lot more grounded now. This group has helped me heaps and I hope that by sharing my experience I can help other people.
Vitor De Souza Carneiro
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Thursday, February 28, 2013
Having a Tumor and Chosing Not to Have it Removed
A couple of days ago I read something that really worried me. A lady was on Facebook relaying a nightmare story about a back surgery (tumor removal) that went wrong and the terrible events in her life that followed. That alone wasn't what alarmed me, because surgery IS surgery and outcomes can never be guaranteed. I had an irrational fear that I would be one of those poor unfortunates that never wakes up from anesthesia - but we all have those kinds of worries the creep in around the time of a major surgery - either our own, or that of a loved one. But what alarmed me most was a lady who had posted a reply saying in effect "That is why I am never going to get my tumor removed"! That comment was one which literally had me losing sleep.
Of course we have and should have dominion over our own bodies. And as the old Rush song goes "If you chose not to decide you still have made a choice". I recognize that some may consciously decide not to have a tumor removed, and that is their right. However I wanted to advocate, to all who may listen, in the strongest possible terms - that you should get a full range of opinions on your medical situation before opting for inaction. If you decide to try to live with your tumor, whatever kind it may be, then do so consciously. Not out of vague fear or just the inability to confront what it might mean for your life. But chose this very deliberately - and I would counsel as well that if a majority of Physicians do not agree that you should just leave your tumor in your body - then you should take a long hard look in the mirror and at least consider confronting the option of removal.
I know surgeons are frequently hotshots, and they will jump over one another to be the one to attempt a risky or complicated surgery. That is the nature of the beast. You have to be confident to open up another person's body. I was lucky that, when the time came for my Schwannoma removal in mid 2009, my surgeon was an honest and thoughtful person. He gave me the best possible assessment of the risks and they rushed me to surgery in four days. When we chatted on the phone he also made a point to hypothetically tell me what one could expect if I were to continue to try to live with this tumor in my spinal cord. In so many words, he told me that the prognosis would simply be more debilitation, progressively getting worse as the tumor squeezed what was left of the spinal cord - until a wheelchair became my home with the likely loss of all my lower body functions. I was already experiencing mind bending pain, extreme nausea, a horribly irritated prostate, and for me the decision was made the moment the tumor was found. I rationalized that my quality of life was already so low - that even if I got back 50% it would be a drastic improvement. As it happened, I got back much more than that. And though I am still a chronic pain sufferer - for sure, I am still VERY glad I went ahead with surgery. And still very proud of Dr Scully from Northwest Neurospecialists in Tucson - for the fine job he and his team did in my surgery and recovery.
I remember a great general was quoted as saying "Never take the counsel of your fears." And I think that is great advice. When fear takes over our decision making it is not always leading us to the right conclusions. Some risks are indeed worth taking. Sometimes the cost of inaction is so high - that a risk must be taken for anything to be saved at all. I am glad I took the risk - because even my worst days now are much, MUCH better than my best days with the tumor in my spinal cord.
I can only urge people, especially those with spinal tumors like I had - to make sure they have looked at every option before going ahead with either surgery, or trying to continue to live with a tumor. Reason dictates that these things are easier to remove when they are smaller - and if left alone to enlarge, they have all the potential to continue to lower one's quality of life. So think hard and get all the information you can. And whatever you chose, chose consciously - and don't let fear override what is obvious, or what common sense tells you.
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Of course we have and should have dominion over our own bodies. And as the old Rush song goes "If you chose not to decide you still have made a choice". I recognize that some may consciously decide not to have a tumor removed, and that is their right. However I wanted to advocate, to all who may listen, in the strongest possible terms - that you should get a full range of opinions on your medical situation before opting for inaction. If you decide to try to live with your tumor, whatever kind it may be, then do so consciously. Not out of vague fear or just the inability to confront what it might mean for your life. But chose this very deliberately - and I would counsel as well that if a majority of Physicians do not agree that you should just leave your tumor in your body - then you should take a long hard look in the mirror and at least consider confronting the option of removal.
I know surgeons are frequently hotshots, and they will jump over one another to be the one to attempt a risky or complicated surgery. That is the nature of the beast. You have to be confident to open up another person's body. I was lucky that, when the time came for my Schwannoma removal in mid 2009, my surgeon was an honest and thoughtful person. He gave me the best possible assessment of the risks and they rushed me to surgery in four days. When we chatted on the phone he also made a point to hypothetically tell me what one could expect if I were to continue to try to live with this tumor in my spinal cord. In so many words, he told me that the prognosis would simply be more debilitation, progressively getting worse as the tumor squeezed what was left of the spinal cord - until a wheelchair became my home with the likely loss of all my lower body functions. I was already experiencing mind bending pain, extreme nausea, a horribly irritated prostate, and for me the decision was made the moment the tumor was found. I rationalized that my quality of life was already so low - that even if I got back 50% it would be a drastic improvement. As it happened, I got back much more than that. And though I am still a chronic pain sufferer - for sure, I am still VERY glad I went ahead with surgery. And still very proud of Dr Scully from Northwest Neurospecialists in Tucson - for the fine job he and his team did in my surgery and recovery.
I remember a great general was quoted as saying "Never take the counsel of your fears." And I think that is great advice. When fear takes over our decision making it is not always leading us to the right conclusions. Some risks are indeed worth taking. Sometimes the cost of inaction is so high - that a risk must be taken for anything to be saved at all. I am glad I took the risk - because even my worst days now are much, MUCH better than my best days with the tumor in my spinal cord.
I can only urge people, especially those with spinal tumors like I had - to make sure they have looked at every option before going ahead with either surgery, or trying to continue to live with a tumor. Reason dictates that these things are easier to remove when they are smaller - and if left alone to enlarge, they have all the potential to continue to lower one's quality of life. So think hard and get all the information you can. And whatever you chose, chose consciously - and don't let fear override what is obvious, or what common sense tells you.
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
Tuesday, January 15, 2013
How Long Before I Feel Better? Recovery After Schwannoma Surgery
Happy 2013 Everyone! I hope 2013 is a year of health and happiness - or a year of recovery and strength if that is what's required...
I had a very good question put to me by Shaun on the "Schwannoma Survivors & Schwannoma Fighters" Facebook page; he asked how long it took before you felt normal, or much like yourself, after Schwannoma surgery. Obviously this is a very good question but a very fraught one at the same time. People have a HUGE range of results from their schwannoma surgeries. I have found that my results were probably better than average - so I try hard not to let myself up on any high horse or take too much credit for a fortunate, or better than average, result. Also where your schwannoma was located in your body, or is, has a great deal to do with it. Mine was in the center of my back, inside my spinal cord - just below my shoulder blades.
As I told Shaun, it was probably a year before I felt fully functional. I was able to walk, with difficulty, within a week or two after surgery. I was able to help take care of our infant son after about 2 weeks. I did have to use small amounts of medication, and still do occasionally. About 2 and a half years after surgery, I got up the courage to try jogging and found that I could do it. I still do struggle with back pain but I have to live with the fact that I have permanent softening of my spinal cord in the area where the tumor was...and that has resulted in pain and discomfort, and some numbness around my stomach. But I try to keep a positive attitude, with the knowledge that a wheelchair and a very different life could have been waiting for me if I had not had surgery.
I actually just visited my regular doctor this past week and he told me that when people have major surgery they frequently get impatient with themselves, and that they should expect a recovery period of a year or longer. I found that this was quite true in my case.
Truth be known, if you find that you are in recovery from a schwannoma, you simply can't know exactly how long the recovery will be, and how much function you will recover afterwards. But keep the lines of communication open with your doctor. Talk to others on the FB page for feedback and ask around a bit. The main lesson I learned was to be patient with my body. It is all too easy just to get angry, frustrated, or dismissive of a body that doesn't behave exactly as it should. Patience really is a virtue with a long recovery. Do whatever you can do in the way of healthy living - eat well and get whatever exercise you can. But most of all be patient. We all know mountains are conquered one step at a time.
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
I had a very good question put to me by Shaun on the "Schwannoma Survivors & Schwannoma Fighters" Facebook page; he asked how long it took before you felt normal, or much like yourself, after Schwannoma surgery. Obviously this is a very good question but a very fraught one at the same time. People have a HUGE range of results from their schwannoma surgeries. I have found that my results were probably better than average - so I try hard not to let myself up on any high horse or take too much credit for a fortunate, or better than average, result. Also where your schwannoma was located in your body, or is, has a great deal to do with it. Mine was in the center of my back, inside my spinal cord - just below my shoulder blades.
As I told Shaun, it was probably a year before I felt fully functional. I was able to walk, with difficulty, within a week or two after surgery. I was able to help take care of our infant son after about 2 weeks. I did have to use small amounts of medication, and still do occasionally. About 2 and a half years after surgery, I got up the courage to try jogging and found that I could do it. I still do struggle with back pain but I have to live with the fact that I have permanent softening of my spinal cord in the area where the tumor was...and that has resulted in pain and discomfort, and some numbness around my stomach. But I try to keep a positive attitude, with the knowledge that a wheelchair and a very different life could have been waiting for me if I had not had surgery.
I actually just visited my regular doctor this past week and he told me that when people have major surgery they frequently get impatient with themselves, and that they should expect a recovery period of a year or longer. I found that this was quite true in my case.
Truth be known, if you find that you are in recovery from a schwannoma, you simply can't know exactly how long the recovery will be, and how much function you will recover afterwards. But keep the lines of communication open with your doctor. Talk to others on the FB page for feedback and ask around a bit. The main lesson I learned was to be patient with my body. It is all too easy just to get angry, frustrated, or dismissive of a body that doesn't behave exactly as it should. Patience really is a virtue with a long recovery. Do whatever you can do in the way of healthy living - eat well and get whatever exercise you can. But most of all be patient. We all know mountains are conquered one step at a time.
(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
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