Hi there everyone! This is Neil the coordinator of the group "Schwannoma Survivors & Schwannoma Fighters". In 2009, when I was diagnosed with a Schwannoma I often tell people that despite the fact that I am an educated guy, I had NEVER even heard the word Schwannoma. This is something that is really not well known to the general public. So I created the Schwannoma Survivors Facebook page and blog, and now we are on our way towards helping Schwannomas and treatments become better known, and also answering practical questions so that we may be the best, smartest patients when we sit down to speak with our own doctor.
So I thought it would be great to make this blog about simple, useful questions that a person newly diagnosed may wish to ask their doctor.
Here are some basics:
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1) What is a Schwannoma, and how many of them have you seen in your years of medical practice?
Why this question; I would ask this question because physicians have varying degrees of experience with regards to their own ability to treat Schwannomas. Some people have told me that in no uncertain terms, that they saw doctors that had scant little experience dealing with Schwannomas. Neurosurgeon's tend to have the best resumes in treating or removing Schwannomas, and they are often best acquainted with what may be required to treat the Schwannoma you have.
2) Where is my Schwannoma located?
Why this question; where a Schwannoma is located has much to do with a host of things, including how difficult it may be to remove , how serious the attending nerve deficits may be, and what your prognosis may be after surgical removal. The best means, and the most common means to answering this is evaluation after an MRI with contrast has been performed.
3) Why am I experiencing these symptoms?
Why this question; the doctor can hopefully help you understand why or how the Schwannoma is interfering with the proper functioning of the affected nerves in your body.
4) How large is the Schwannoma I have?
Why this question; another basic thing - how large the Schwannoma is is a critical factor in the difficulty or ease of it's removal, and the amount to which it is interfering with your nerves or other organs that it may be pressing on as it has grown. This also is important in developing a prognosis to hopefully decide how well you can do after surgery.
5) What are my surgical options? And is Cyber-knife a viable treatment option for me?
Why this question; in the vast majority of cases conventional resection, i.e., conventional surgery is used to remove the Schwannoma from the affected nerve. New treatments are available, such as Cyber-knife treatment. I have only personally heard of a handful of people being treated with Cyber-knife, however it is reasonable to expect that less invasive procedures will become more advanced in the future, and will be used with greater regularity. It is always worth asking if a less invasive form of surgery or treatment is a viable option. You may also wish to ask if I.E. surgical treatment (Intracapsular Enucleation) is an option if you have a schwannoma in a particularly difficult location - I.E. surgical treatment has been repeatedly used successfully on schwannomas of the Vagus nerve, as well as some other schwannomas that are found in locations that make conventional surgery problematic or very risky.
6) How many Schwannomas have you removed?
Why this Question; another surgeon told me that this is a good question to ask, especially of your neurosurgeon - and it should immediately tell a patient whether or not they have a surgeon who is experienced with Schwannomas, or one who is not. Reason dictates that you don't want to be someone's test case. So ask the question - it is worth it.
7) How much of my ability can I stand to gain back after surgery?
Why this question; being perfectly honest, many of us regain a good amount of ability after surgery - but many of us (myself included) are not 100%. Being perfect after Schwannoma surgery is a rare thing. Therefore it is good to want to know, as much as is possible, what your quality of life can be post surgery.
8) What are the risks of surgery?
Why this question; all surgeries contain risks, and surgical procedures on major nerves, like the spinal cord for example, contain a significant amount of risk. A surgeon once told me that some Schwannomas almost pop off. Others must be cut out. Others reveal themselves too difficult to be removed completely and are partially removed. It is important to have a physician tell you, with as much accuracy as possible, what the risks are with surgery. Because this gives way to the inevitable act of having to balance the risks against the rewards, when deciding whether to have surgery, or opt for some other course.
9) How long will my recovery time be?
Why this question; this is a thorny question and it may not have an exact answer - but it is still worth asking. We all want to know how much time from our lives recovering from surgery is really going to take - and it is my experience that recovery from Schwannoma surgeries - especially Schwannomas removed from the spinal cord or acoustic neuromas - can be protracted. Recovery times really can vary, but my cautious opinion from experience tells me they often run long.
Thursday, June 19, 2014
Schwannoma Case Study #8, Kayla Collins and her Battle with Acoustic Neuroma / Vestibular Schwannoma
Welcome to Schwannoma Case Study # 8! This one features our friend Kayla Collins and details her experiences with Acoustic Neuroma / Vestibular Schwannoma. (These are also sometimes referred to as Acoustic Schwannomas - the three names can sometimes create confusion ) In our case study series we are trying to get as many different stories as possible, and I felt early on that it was very important to get the story of a survivor who had experienced an Acoustic Neuroma. Myself and others in the group Schwannoma Survivors & Schwannoma Fighters want to thank Kayla immensely for her well written and very detailed story - and we hope it is of use and interest to you! - Neil
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1) How old were you at the time of your diagnosis?
48
48
2) Do you have any history of Schwannomas in your family?
No
No
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
My schwannoma was a skull base tumor. It sat between the cerebellum and pons, otherwise referred to as the cerebellopontine angle. Final diagnosis was that it was an Acoustic Schwannoma.
I had symptoms for over a year. They were symptoms I could easily write off such as clumsiness (because I am) but gradually became more pronounced. Tripping and noticing an increased lack of coordination were becoming more evident. I am a runner and I began to notice that I couldn’t turn my head to look for traffic without becoming dizzy (and eventually not able to at all). Or look up at street signs without feeling like I would fall backwards. Balance was increasingly more difficult when running as I noticed I really had to pick up my right leg as to not trip.
Also during this time I noticed my eyes didn’t seem to focus right. I couldn’t seem to see right with my contacts and wore my glasses but it was still difficult. I had gone to progressive lenses so I thought that I just wasn’t used to them or the prescription wasn’t quite right.
When the right side of my face went numb and never came back I knew something was wrong. However, being extremely busy with work, school, coaching, moving – I felt that I was maintaining and would try to prepare for what may lie ahead. Knowing I could not close that can of worms once opened, hence MRI, I started preparing. I never said anything to anyone until I got moved, finished coaching and completed my finals. I made an eye doctor appointment to confirm it wasn’t my eyes and when that was done I called my doctor.
I had my MRI, confirmation of brain tumor and an appointment with a brain surgeon within that week. My schwannoma was larger than the doctors are used to seeing. Because I had severe symptoms they couldn’t determine which nerve the tumor was attached to-. I had symptoms from the trigeminal, optic and acoustic nerve. I was not confirmed until I had the surgery.
My schwannoma was different than the textbooks in the fact of the direction it was growing. End result is that I had an acoustic however I did not have the normal symptoms for that type.
Usually when people find out they have an acoustic, the thing that brings them to the doctor is that they suddenly lose their hearing. They have it one minute and then it is suddenly gone and doesn’t return. After I was diagnosed with the tumor, I did have a hearing test and had slight hearing loss in that ear. It was so minimal I didn’t even realize it. I was told that if it was an acoustic that I would lose my hearing because that nerve would be severed to remove the tumor. This is indeed what happened. Also, I never had headaches, which is a common symptom.
My tumor was growing in the direction of my brain stem as opposed to outward and into my ear canal. This is what caused all of my other symptoms. The tumor was pressing on my trigeminal and optic nerves and had grown to almost 4 cm. This was too large to do any type of laser radiology and must be done via craniotomy. Had I gone in a year earlier it might have been small enough to do via gamma knife (pinpoint radiation).
I found it interesting in my research and talking to doctors, that there are a lot of people that have different types of brain tumors that are discovered by MRI’s done for other reasons. Discovered quite by accident and don’t encourage doing anything about them unless they cause symptoms. My doctor thought I could have possibly had this tumor for 25-30 years. The tumor itself didn’t cause any problem, it was the fact that the tumor grew and pressed on the other nerves and my brainstem that caused the problem.
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?
I had a keyhole craniotomy, or Retro-sigmoid craniotomy. This is an incision behind the ear (my incision is probably 6 inches long). This gives the surgeon access to the cerebellum and brainstem. I also had a drain for cerebral spinal fluid, or CSF. I think it is important to mention this because it was an option that my surgeon wasn’t sure he would do. This is a device that relieves elevated intracranial pressure. He did opt to insert the drain and it turns out that it was needed in my case. Had I not had this the pressure would have built up in my brain and would have caused emergency brain surgery which would have been much more difficult to recover from.
My surgery was a complete success. They were able to resect my tumor 100% so there was no followup of radiation. The healing was very quick. Staples and stitches were out within 2 weeks. Each day I was stronger and saw progress.
My surgery was January 31, 2014. I am about 4 ½ months post op at the time of this writing. My dizziness was immediately better. I have noticed that when I turn quickly to look right my head is still swimming a little – but it is SO much better. I can only hope that will be better as I continue to heal. The right side of my face as well as my teeth and gums are still numb. Not totally numb but it feels like it’s asleep, sort of. I completely lost my hearing which has been an adjustment. I am hoping to research and see if some type of implant might be an option to help regain that – but I haven’t pursued that yet. The absolute worst part of my post op was my right eye! When I came out of surgery the right side of my face was completely paralyzed. Each day it was a little bit better and today is almost normal. Most people can’t tell any droop or notice my eye unless they really look. But after surgery my eye wouldn’t close at all. I had to tape it closed and wore a patch. It was extremely sensitive to light or wind (even the ceiling fan or AC). Blinking in not over rated!! I used ointment and gel drops constantly. My vision was affected. I couldn’t hear or see and was pretty frustrated. At about the 3 month point I was able to return to work and my eye was finally on the mend. It still doesn’t blink as much as it should but is SO much better! I work in an ER for 12 hour shifts and it is pretty physically demanding. I was able to return April 1 and have done great. I also returned to school on May 5. Looking at a computer has been a little difficult as my vision isn’t 100% yet – but again, things are getting a little better every day and I trust I will have 100% recovery, except for my hearing.
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?
The most difficult thing for me was finding the right doctor. First of all, this is a fairly rare tumor. Usually these tumors are discovered and dealt with when smaller so surgery isn’t necessarily needed. The route would be gamma knife or something in line with that. What this means is that this isn’t a “routine” type of surgery – one they do every day. I wanted to make sure my surgeon had performed enough of these that he knew what to possibly expect. I went thru several doctors and liked them all. I totally went with my gut as to who to pick. When I asked the specific question of “How many times have you performed this surgery”, I was told by the first two doctors that they had done enough and had plenty of experience – but no number. The one I chose gave me a direct answer that he had performed this procedure over 20 years and does 5-10 a year (he does the most in my area). I just thought that if he does the most around here and only does this many, how much experience could the others really have? I think they were probably fine, I really liked them, it was just my gut telling me to go with this doctor. I will also mention that I had already scheduled my surgery with another doctor and changed just a few weeks before. When I went to see him, I was candid and told him I was just getting another opinion to see if he could tell me anything I hadn’t yet heard. He didn’t tell me anything different – but his willingness and understanding to talk to me knowing that it was only a consult and I had already scheduled – his demeanor of experience – just made me change. I say this just so you know and realize that this is your journey and you are in control of it. Don’t be scared to hurt feelings. I felt terrible to cancel on the other doctor but it was MY brain they were cutting into and I had to make the best choice for me! It was nothing personal.
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?
I think I have already covered this in the above question but I will say….keep it positive! You have had major surgery (mine was 12 hours long) and you are going to need to be gentle with yourself. I finally let this be a ticket to let my family take care of me…for the first few weeks anyway.
I was supposed to be in the hospital 2 weeks – I was home in 5 days. I didn’t overdo it but I did keep moving . In the hospital I was walking the halls, when I got home I was walking the neighborhood – not by myself (I couldn’t see or hear on the right!) Don’t get lazy – your body will thank you for it. I was discharged from the doctor with no restrictions at 6 week’s post op. I ran 6 miles the next day – I knew I was back on the road to my life and was/am so blessed and grateful to be living it! Yes, I have a few deficits – but it is my new normal…I’m good with that!
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)
Except hear in my right ear I am blessed to be able to do everything I could before. I am more careful when it comes to balance, like getting up on a ladder, than before. I move a little slower because I am a bit more cautious.
Monday, June 2, 2014
An Introduction to Schwannomas - Some Basic Facts About Schwannomas for Those Who Are Newly Diagnosed
As I work with the group "Schwannoma Survivors & Schwannoma Fighters" I am often fielding lots of messages in the attempt to answer basic questions about Schwannomas for people who are newly diagnosed. Some of the questions and answers are often very similar, and so I thought that it may be a good and useful idea to simply put some of the basics down about Schwannomas - a kind of introductory guide for a person who knows nothing about Schwannomas and needs a leg up in starting to understand them. So here are a few questions with answers - the basics that I can share to help those newly diagnosed! - Neil
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1) What is a Schwannoma?
A Schwannoma is a nerve sheath tumor that is made up of schwann cells. These cells are known, in rare cases, to grow abnormally and cause the tumors we know as Schwannomas.
2) What are the symptoms of a Schwannoma?
As a person who is not a physician, but who is a survivor and someone who works with survivors - I can share with you that the most common symptoms I hear about are extreme pain, with numbness, loss of nerve sensation, and sometimes extreme weakness in the areas of the body affected by the Schwannoma. People do report nerve shocks, and feelings like tingling sensations. (I had all of these while I was suffering with a Schwannoma)
3) Are Schwannoma's benign or malignant?
Neurosurgeons have stated to me that the vast majority of Schwannomas are benign. Though it should be emphasized that they can still wreak havoc on a person's life. And also the majority of them are usually one off tumors, not multiple ones. Though malignancy is rare, the exact nature of the tumor is usually confirmed by a biopsy that is conducted after some or all of the tumor is removed via surgery. (In some cases, when it access to the tumor is easier, a biopsy may be performed before surgery to determine the exact nature of the tumor.)
4) Can Schwannomas turn into cancer?
In the vast majority of cases cancer and Schwannoma do not cross paths. A neurosurgeon confirmed to me that normally only those who have the condition of neurofibromatosis are at a higher risk of malignant, cancerous Schwannomas. When people hear the word 'tumor' they tend to think CANCER! Schwannomas are a different beast. Obviously you should consult with your doctor as to the exact nature of your own tumor, if you have been diagnosed - but for our purposes of speaking in general terms, it should be enough to say that Schwannomas and cancer crossing paths is extremely rare. Doctors with access to modern imaging machinery such at MRIs, will use every means available to them to try to accurately determine the nature of the tumor, and post operative biopsies are usually performed as well, to determine with certainty the confirmation of what kind of tumor it is.
5) If I have multiple Schwannomas, what is going on?
Though this is a question best answered by a doctor with experience in treating this condition, if you have been diagnosed with multiple Schwannomas, a chance exists that you may have the condition called Schwannomatosis. Schwannomatosis, generally speaking is a genetic condition that predisposes a person to multiple Schwannomas that may occur along almost any nerve pathway in the body - except along the auditory nerves where acoustic neuromas / vestibular schwannomas sometimes grow. Genetic testing is available to help confirm Schwannomatosis - however it has been expressed to me that in cases where a person has had multiple Schwannomas, some physicians may simply presume that diagnosis clinically, and treat the condition accordingly, whether genetic testing has taken place or not.
6) Where can Schwannomas grow in the body?
Simply put, they can theoretically grow along any nerve pathway in the body. Working with survivors I have seen that this is indeed true, and treatments have to be targeted towards people differently based on where their Schwannoma is, where it is located, and how it is affecting the body.
7) What are the treatment options for Schwannoma?
The most common treatment option is surgery. Newer treatment options like Cyber Knife treatments and minimally invasive treatments are becoming more common - however what I see from the survivors group is that a sizable number of people still have conventional open surgery to remove their Schwannomas. Treatment options are always best decided upon with the help of your doctor - and the strategy can be different based on the location of the Schwannoma, it's size, and the extent to which it affects a person's quality of life. And medication is often necessary to control the pain caused by the tumor, and to treat the interference in the normal functioning of the nerve by the squeezing of the tumor upon the nerve.
8) Can a person have a good quality of life after Schwannoma Surgery?
Yes indeed, a person can. I, for one, have a much better quality of life without the extreme pain of the Schwannoma I had. However, speaking generally, surgery on any nerve anywhere in the body is risky, and there will always be some chance of loss of function or residual pain resulting from the surgery - and also from the pressure the Schwannoma itself has exhibited on the affected nerve. A person has to weigh the prospects of surgery in consultation with their doctor. Many of the people in the Schwannoma Survivors group do still have residual pain and some issues even after Schwannoma surgery - I have said to people that I am about 85% as good as I was on my best days before being affected by the Schwannoma. This is certainly acceptable to me, personally. No, not every story of removal is a happy one - but there are reasons to stay optimistic due to the significant number of successful removals via surgery, and the people who have had a good recovery of their quality of life after surgery.
________________________________________________________________________
1) What is a Schwannoma?
A Schwannoma is a nerve sheath tumor that is made up of schwann cells. These cells are known, in rare cases, to grow abnormally and cause the tumors we know as Schwannomas.
2) What are the symptoms of a Schwannoma?
As a person who is not a physician, but who is a survivor and someone who works with survivors - I can share with you that the most common symptoms I hear about are extreme pain, with numbness, loss of nerve sensation, and sometimes extreme weakness in the areas of the body affected by the Schwannoma. People do report nerve shocks, and feelings like tingling sensations. (I had all of these while I was suffering with a Schwannoma)
3) Are Schwannoma's benign or malignant?
Neurosurgeons have stated to me that the vast majority of Schwannomas are benign. Though it should be emphasized that they can still wreak havoc on a person's life. And also the majority of them are usually one off tumors, not multiple ones. Though malignancy is rare, the exact nature of the tumor is usually confirmed by a biopsy that is conducted after some or all of the tumor is removed via surgery. (In some cases, when it access to the tumor is easier, a biopsy may be performed before surgery to determine the exact nature of the tumor.)
4) Can Schwannomas turn into cancer?
In the vast majority of cases cancer and Schwannoma do not cross paths. A neurosurgeon confirmed to me that normally only those who have the condition of neurofibromatosis are at a higher risk of malignant, cancerous Schwannomas. When people hear the word 'tumor' they tend to think CANCER! Schwannomas are a different beast. Obviously you should consult with your doctor as to the exact nature of your own tumor, if you have been diagnosed - but for our purposes of speaking in general terms, it should be enough to say that Schwannomas and cancer crossing paths is extremely rare. Doctors with access to modern imaging machinery such at MRIs, will use every means available to them to try to accurately determine the nature of the tumor, and post operative biopsies are usually performed as well, to determine with certainty the confirmation of what kind of tumor it is.
5) If I have multiple Schwannomas, what is going on?
Though this is a question best answered by a doctor with experience in treating this condition, if you have been diagnosed with multiple Schwannomas, a chance exists that you may have the condition called Schwannomatosis. Schwannomatosis, generally speaking is a genetic condition that predisposes a person to multiple Schwannomas that may occur along almost any nerve pathway in the body - except along the auditory nerves where acoustic neuromas / vestibular schwannomas sometimes grow. Genetic testing is available to help confirm Schwannomatosis - however it has been expressed to me that in cases where a person has had multiple Schwannomas, some physicians may simply presume that diagnosis clinically, and treat the condition accordingly, whether genetic testing has taken place or not.
6) Where can Schwannomas grow in the body?
Simply put, they can theoretically grow along any nerve pathway in the body. Working with survivors I have seen that this is indeed true, and treatments have to be targeted towards people differently based on where their Schwannoma is, where it is located, and how it is affecting the body.
7) What are the treatment options for Schwannoma?
The most common treatment option is surgery. Newer treatment options like Cyber Knife treatments and minimally invasive treatments are becoming more common - however what I see from the survivors group is that a sizable number of people still have conventional open surgery to remove their Schwannomas. Treatment options are always best decided upon with the help of your doctor - and the strategy can be different based on the location of the Schwannoma, it's size, and the extent to which it affects a person's quality of life. And medication is often necessary to control the pain caused by the tumor, and to treat the interference in the normal functioning of the nerve by the squeezing of the tumor upon the nerve.
8) Can a person have a good quality of life after Schwannoma Surgery?
Yes indeed, a person can. I, for one, have a much better quality of life without the extreme pain of the Schwannoma I had. However, speaking generally, surgery on any nerve anywhere in the body is risky, and there will always be some chance of loss of function or residual pain resulting from the surgery - and also from the pressure the Schwannoma itself has exhibited on the affected nerve. A person has to weigh the prospects of surgery in consultation with their doctor. Many of the people in the Schwannoma Survivors group do still have residual pain and some issues even after Schwannoma surgery - I have said to people that I am about 85% as good as I was on my best days before being affected by the Schwannoma. This is certainly acceptable to me, personally. No, not every story of removal is a happy one - but there are reasons to stay optimistic due to the significant number of successful removals via surgery, and the people who have had a good recovery of their quality of life after surgery.
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