Since the creation of the Schwannoma Survivors FB page and blog, it has been a primary goal of these outlets to get useful, practical advice out there to those who have Schwannomas, or those who have family members affected by Schwannomas. And one thing that keeps coming up in our discussions is how people with Schwannomas are so often referred to physical therapy...and the sometimes terrible pain that results.
Why is this problematic?
Well, first let's start with people who still have a known Schwannoma in their body. As many of you may know, Schwannomas are nerve sheath tumors. They grow from schwann cells which are found in the lining of our nerves. So, in a great many cases, people experience nerve pain, numbness, weakness in the affected limbs, and tingling sensations. One of the options that some doctors chose in order to try and strengthen someone with a schwannoma is to refer them to physical therapy. I myself had this experience when I still had a Schwannoma in my thoracic spine, and it was so painful that I needed at least 2 days after each visit to recover from it. (After my NP found this out, she requested that I stop immediately). And these particular treatments were just laying on my back, going through manipulations of my legs. It was horrible - one of the most painful things I have ever experienced. I raised the issue with others on the SS and SF page, and many who had Schwannomas confirmed that it was a painful nightmare to be sent to physical therapy.
I think that with this issue, we are running up against doctors and medical providers who may not have had extensive experience in the treatment of Schwannomas. In these scenarios, they may simply not know - due to the rarity of these tumors, just how painful physical therapy with a Schwannoma in your body can be. And I must stress that we here at the SS and SF page are advised by physicians, and we benefit greatly from their wisdom and experience. But I wanted to stress to everyone, physicians and patients alike, that physical therapy WITH a schwannoma in your body may be extremely painful. When Schwannomas are stimulated by painful motions, or by touch, the agony can be indescribably painful. If you are referred to PT and you know for sure you have a Schwannoma, we advise you to proceed with extreme caution. And, always ask your physician if he or she has treated many who have had Schwannomas...and if they are aware of relevant success stories in this line of treatment.
Second, I highly suspect, from what I have read and my own personal experiences, that the real chance for physical therapy to succeed in fact lies after a tumor is removed by surgery. Another reason I believe this is that several people on our most recent "physical therapy" related discussion said that their doctors said that PT wouldn't work as long at the tumor was still in the body - squeezing the nerve and causing severe pain. So it is clear that some doctors know this, and yet many patients appear to have learned it through bitter experience.
We should also be honest in mentioning that with the severity of the opioid epidemic in the United States, many medical providers are searching for any treatment options which may strengthen the patient, increase mobility, and decrease pain - without further reliance on medication. However, it must be stressed again that for many people who have not yet had their Schwannomas removed, physical therapy often dramatically increases pain.
Our conclusions are, upon examining this issue are, very simple. If you have a Schwannoma still in your body and your medical provider recommends physical therapy, please proceed with extreme caution. For many, this does not work. However, it appears that survivors report better results when physical therapy is recommended after surgery. Without the tumor no longer there, squeezing the nerve, it appears that better results are very much possible.
I maintain with complete honestly that I believe most medical providers are doing the best they can in the vast majority of situations. However, it may be that with Schwannomas being relatively rare in the general population, physicians simply may not have, in some cases, seen enough of them to understand that physical therapy is painful and sometimes detrimental to a patient. We hope that our experiences may go on to better inform the current and future generations of doctors, so that outcomes can be improved without the punishing affects of terrible pain.
Wishing you all a strong and pain free day!
Neil
Showing posts with label Schwannoma. Show all posts
Showing posts with label Schwannoma. Show all posts
Thursday, December 26, 2019
Thursday, June 13, 2019
Case Study #35, Meera Joshi Shares the Story of Her Spinal Accessory Nerve Schwannoma
Hello everyone! And welcome to our 35th Case Study! This one features the story of our friend Meera Joshi, who battled a spinal accessory nerve schwannoma and was successfully treated by Dr Netterville at Vanderbilt University. We hope you find this story useful, and we thank Meera for sharing her story! - Neil
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1) How old were you at the time of your diagnosis?
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1) How old were you at the time of your diagnosis?
I had just turned 27 years old during my time of diagnosis.
2) Do you have any history of Schwannomas in your family?
No - None that I know of.
3) Where was your Schwannoma located? And what were the symptoms that lead to your
diagnosis?
My Schwannoma was located by my skull base and under my left ear. The tumor itself was quite large and bulging out of my neck but it was hidden behind my ear, so I never noticed until I got diagnosed.
I was moving to another state and all the lifting of boxes caused me a lot of left shoulder pain. I was massaging my neck and noticed that I had this huge lump under my ear. My fiancé, who is completely his residency, did a brief check around my neck and suggested I make an appointment with an ENT as soon as possible.
After several different tests suggested by the ENT (Ultrasound, CT Scan, MRI, and Biopsy), he concluded that I had a Schwannoma Tumor on my Vagus nerve. I then went to go visit a surgeon out of John Hopkins who had me get another MRI that was specific for the head and neck – she/the radiologist concluded that tumor was actually on the spinal accessory nerve that went to my left shoulder but there was no way of being 100% certain until they were able to cut me open.
I have had pain on my left shoulder for the past ten plus years and just blamed it on being lefthanded and using that hand/arm dominantly but after being diagnosed it all made sense. The most recent symptoms, before I had my surgery, were a fire like pain on the muscle of my left shoulder. Some days it was so uncomfortable and unbearable.
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 will never forget the day I had surgery.... March 5, 2019. I would say that my surgery was a SUPER success.
I was extremely unhappy with my surgeon at Johns Hopkins and decided to wait to pursue any kind of surgery until I found the most skilled surgeon who I felt comfortable with. It was an extremely long, nerve wrecking, and heart wrenching process to find a surgeon who specialized in removing Schwannomas successfully. I searched for two years to find a surgeon who was willing to operate on me without leaving me with lifelong neural disabilities on my left shoulder/arm.
Through this very blog, I was able to find Dr. James Netterville at Vanderbilt University. He is not only an extremely skilled surgeon but also an amazing and compassionate human being who truly cares about his work and his patients. I booked an appointment to see him and as soon as I met him, I know he was the one who was going to help me through this.
Dr. Netterville and his team are skilled in performing surgeries to help minimize the risk of nerve damage. They used the method of Electromyography which helps with recording the electrical activity of muscle tissue using electrodes attached to the skin and/or inserted into the muscle. During my surgery, the surgical team found that my tumor was actually on a sensory branch nerve (which was the best-case scenario) and they proceeded to cut the tumor and the nerve out from each end rather than using the technique of Intracapsular Enucleation. Removal of the tumor/cutting the nerve has left me with no sensation on my left ear which I am slowly getting used to as the weeks pass.
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?
Some of the most critical questions to ask include:
1) Do you have experience with Schwannomas?
2) If so, how many and what kind of surgical method did they use for the removal?
1) Do you have experience with Schwannomas?
2) If so, how many and what kind of surgical method did they use for the removal?
3) What are the risks of leaving the tumor alone vs removing it?
4) What their patients’ post-operative outcomes and recoveries were like?
4) What their patients’ post-operative outcomes and recoveries were like?
From my personal experience, if you do not feel 100% comfortable with the surgeon you are seeing do not continue to see them. Bedside manner is just as important as their experience and skill.
My recovery was not what I excepted at all. Since my tumor was coiled up in many nerves including the spinal accessory nerve that went to my shoulder, they had to carefully and skillfully move them all away from the tumor to remove it. I woke up from surgery with all the pain in my shoulder gone but since they had to manipulate the nerve, as a defense mode my shoulder was shrugging. For the first few days, I had to constantly remind myself to relax it and push it down.
I had a drain sticking out of my head for three days to let the access fluid drain out which was extremely uncomfortable once the anesthesia wore off. My neck was extremely stiff and I had no sensation under my left jaw, on my left ear, and the left back side of my head (this has all slowly come back). I was surprisingly in not much pain at all. In fact, I was able to do almost everything after surgery except lift anything above 5 pounds.
My surgical team told me that it would take me up to a year to recover and my swelling would go up and down throughout the year. I went back to work three weeks post-surgery which I would say was too early because I would get extremely tried but I wanted to get back into the routine of things quickly which I would say was one thing that actually really helped me recover even faster. I would say that my recovery has been extremely positive.
Now 10 weeks post-surgery, I am able to do everything I used to before my diagnosis and surgery. The stiffness in my neck has gotten much better and I have almost full mobility to move my neck. The area where the stitches were do get a little stiff some days, but I believe it will get better as time passes.
*If you have this kind of Schwannoma and would like to speak to Meera for advice, feel free to email her at:
*If you have this kind of Schwannoma and would like to speak to Meera for advice, feel free to email her at:
Friday, May 3, 2019
A New Q and A With Dr. Alfred Ogden, Columbia University Neurosurgery
Happy Friday everyone!
Today I'm pleased to present to you a new Q and A with Dr. Alfred Ogden from Columbia University Neurosurgery in NYC. He was kind enough to give us a bit of his time to take these ten questions from the Schwannoma Survivors & Schwannoma Fighters group; and we thank him sincerely for doing so! We hope you find these answers useful, wherever you are on the Schwannoma journey.
all the best,
Neil - group founder and coordinator
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*Dr Ogden's responses are in Italics
Today I'm pleased to present to you a new Q and A with Dr. Alfred Ogden from Columbia University Neurosurgery in NYC. He was kind enough to give us a bit of his time to take these ten questions from the Schwannoma Survivors & Schwannoma Fighters group; and we thank him sincerely for doing so! We hope you find these answers useful, wherever you are on the Schwannoma journey.
all the best,
Neil - group founder and coordinator
__________________________________________________________________________
*Dr Ogden's responses are in Italics
1). Lisa writes:" I would love to hear info if there is a known link between pregnancy, hormones, and schwannomas. There seem to be many of us who became aware of ours during or after pregnancy.”
To my knowledge, no connection has been made. A connection to meningiomas has, which is in the differential diagnosis for many schwannomas.
2). Andra writes: "I have been in pain for years, and just got diagnosed in 2015 with a presacral schwanomma about 3 cm, that has grown in to my sciatic nerve on left. This is the one causing the pain, as when they placed the feducils in for cyber knife, they did a biopsy, and I sat up on table after conscious sedation. I have been on gabapentin, 2700 mg/day, percocet a night, and celexa. The neurosurgeon in KC does not want to touch it, because he has never worked on one there. HE did complete a laminectomy to obtain 2 others at L3 and L5 in 2015. I did have cyberknife on the presacral one 2 years ago, and the growth is stable, but the pain is excruciating at night, and sometimes during day. Do you recommend any thing else, or have u ever operated on one presacrally, and what was the outcome, side effects, losing functionality in bladder, leg, bowels, and or sexual dysfunction?? THOUGHTS or advice? I am trying to get a second opinion, but not sure who has removed this type, or has dealt with this type, as it is rare."
Surgery for pre-sacral schwannomas is indicated if they are growing to the extent that they are likely to cause a problem within the patient's lifetime, or if they are causing significant symptoms. They can be difficult to access, however, depending on the specific anatomy of the patient and the tumor. There are certain nationally recognized peripheral nerve specialists that do this kind of surgery. The closest to you is probably Spinner at the Mayo Clinic.
3). Kristina writes: " I have a Schwannoma tumor the size of a grapefruit in the retro perineal area putting mass pressure on my kidney . Is it ok to monitor the growth of a tumor this large instead of removing it ?"
Large retroperitoneal tumors should be biopsied. If the biopsy shows a benign tumor, it is usually reasonable to monitor it for growth.
4). Vickie writes: "My schwannoma was size of baseball in my chest above my heart. I'm praying it doesn't grow back was wondering in your educated opinion do you think these tumors are auto immune related?"
This is not auto-immune related.
5). Demelza writes: "Hi I wish to ask about the fact that I have recently been tested negative for NF type 3. Yet I fit all the markers for having NF3 and have other family members who have also had Schwannomas. I still have to be regularly tested as such. So why would this happen and not have any genetic markers? My doctor has said they don’t know why this happens. Is there any research being done on people like this who have multiple nerve tumors yet don’t have the genetic disease."
There are many different mutations in the NF gene that can produce neurofibromatosis, and the genetic tests are mutation specific. So it is possible that, if you fulfill clinical criteria for NF, you have the genetic disease but your mutation is simply not one of those that the test encompasses.
6) Erika writes: "I had my schwannoma in the cervical sympathetic removed 8 weeks ago, causing Horner's Syndrome and First Bite Syndrome. Does Horner's Syndrome typically come with extreme dry eye and dry mouth? Other than the over the counter remedies, is there anything that can help these symptoms? Have you found any successful treatment for First Bite Syndrome? Will it eventually go away? And if so, when?"
Horner's syndrome is characterized by a drooping eyelid, constricted pupil, and dry eye. The medical verbiage rhymes, "ptosis, mitosis, and anhydrosis." So yes, dry eye/mouth are part of it. Often this resolves after several months. I would use saline eyedrops to protect the eye but get checked out by an ophthalmologist now.
7). Karen writes: "I have a sub-orbital schwannoma in my left eye. On the CT scan, the tumor is about the same size as my eyeball. Should I be OK with an Opthamologist or should I be consulting with a neurosurgeon too? I’ve been waiting two months for an appointment and things got messed up so I’m finally going to see an ophthalmologist next week. I’m not sure who should really be doing the surgery and I’d love to hear a simple one way or the other."
Most ophthalmologists are not specialized in these kinds of tumors. You need to find an ophthalmologist that specializes in orbital tumors and works regularly with a neurosurgeon. Surgery usually requires a team approach.
8). Caroline writes: " If a piece of a vestibular schwannoma (or any schwannoma) is not removed 100%, what is the probabilty of it NOT coming back/ growing? I was told a piece was left but my first two yearly scans didn't show the piece. Last year a linear piece was seen and is possibly scar tissue. I will repeat MRI this May to check for change. I'm baffled that the Dr said he took 90% so where's the 10%? He said the word zapped it? Thank you! "
There is a good chance that it won't grow back. Sometimes, even when a residual is left, the tissue isn't viable and the residual dies. DO NOT however assume that this is the case! Keep up on your regularly scheduled scans so that if it does come back, you catch it early.
9). Brad writes: "I would like to know what are the best non-opioid medications for treating schwannomatosis pain that cannot be alleviated with surgery. I have cluster of 20-30 tumors on my lower back into my hip and after 3 opinions, “pain management” is where I’ve landed. I’m taking large doses of Neurontin and Tegretol which help some, but I would still like to get rid of as many of the opiates as possible."
You are on the right track trying non-opioid medicines, so-called membrane stabilizers like the ones you are on. There is no "best medication." Every situation is different.
10). Aneta writes: "Almost a year ago, I was diagnosed with a facial nerve schwannoma located on the 7th cranial nerve. I’m 42 and the doctor advised I was too young for a surgery, so I’m currently under observation and scheduled for annual MRIs. I am aware of possible facial paralysis and that scares me to death. I suffer from constant fullness in my ear, tinnitus, and brain fog. I have difficulty concentrating and feel constantly distracted. I have been taking sleeping pills every night in order to get a good night sleep. My question to Dr. Alfred Ogden would be: what are my options at this time? And is there anything that can help with the tinnitus and overall well being? Thank you."
I'm sorry to hear about your situation. I don't have a great solution for you. The tumor should only be treated is it is large or growing.
Friday, June 1, 2018
A Remarkable Story of Hope, Colin MacKenzie Running the London Marathon After Cervical Schwannoma Surgery
Hey everyone! Today I'm pleased to present to you a story that should give us all hope...the story of our friend Colin MacKenzie and his successful run in the London Marathon, after having had cervical Schwannoma surgery. I feel like such stories are truly needed, because for some people, Schwannoma pain can make even the most basic things extremely difficult. For some, just going out to get the mail is an ordeal. Or taking care of a child. Or just making it through a shift at work. However some survivors are people who take the norm and stretch that possibility to the max - and Colin MacKenzie is one of them. Based in the UK, Colin trained for and completed the London Marathon in 3:41:23, after having had surgery for a cervical Schwannoma. Colin was kind enough to answer a few questions about this experience, and we thank him for taking the time to do so - and for demonstrating what is possible for athletes and anyone else who has had a Schwannoma. - Neil
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1). What were your symptoms before your Schwannoma was discovered? How did it affect your running before it was found?
The slow growing nature of Schwannomas meant that my symptoms came on very slowly over a long time. I gave up rowing in 2006 shortly after my daughter was born (but before I noticed any symptoms) and fell out of the routine of exercise. I had a few attempts over the next few years to get fit again but did start to struggle a bit with my feet. The best way to describe it is the feeling you get just before your foot falls asleep, the not quite numb feeling and not quite pins and needles. In some ways it felt a bit like my feet were drunk - I couldn't really rely on them landing correcty and in fact did sprain my ankle when playing around in the park. Over time my legs felt really tired all the time despite not doing any exercise. It is worth saying that I had no pain at all. By the time I went to see my GP I couldn't even run for the bus!
2). When your Schwannoma was located, where was it found? What kind of procedure was performed and was it successful?
I was referred to a neurologist who sent me for a head and neck MRI. He told me he was looking for either compression (eg a tumour of some sort) or inflammation (eg MS or Motor Neuron Disease). It turns out it was a Schwannoma on my spinal cord at C1/C2 (right at the top of my neck). It was surgically removed on 13 June 2012. A follow-up MRI a few months later confirmed it was completely removed and a further MRI in 2017 showed no regrowth. The only side effect I've been left with is a numb patch on the back of my head which corresponds to the specific nerve that was damaged. 3). How long did it take you to train back up to the strength required to run a marathon? What was that process like and how did your body feel after having gone through the experience of having the Schwannoma?
Recovering from the Schwannoma was one thing, recovering from the surgery was another. In the days after the surgery I could feel the feeling returning to my feet quite quickly as my spinal cord decomressed. My neck was very sore and stiff from the surgery though. It took a good 6 months before I had most of my movement back and a year before I felt normal again. August 2013 was the start of my get fit campain. I started on the treadmill and cross trainer before building up slowly to 5km. I was lucky to discover parkrun which is an organisation that puts on weekly free 5km runs in parks all over the world now. This helped with motivation and gradually my times improved. I built up over the next few years and found out I had a place in the 2017 London Marathon in late 2016.
I think the key was taking it slowly and listening to my body. I didn't have any residual symptoms from the Schwannoma, my movement was back to what it was before and it just felt good to be able to run up a flight of stairs again. If I'd been told the day before surgery that the best outcome was that my symptoms wouldn't get any worse I would have leapt at it. But here I was 4 and a half years later starting to train for a marathon.
4). How did you feel during the race? Did you find that it the feelings in your body were greatly different than before the Schwannoma?
The race was an amazing experience. The atmosphere of the London Marathon is incredible. Crowds line the whole course and there is a constant wall of noise of people shouting your name and encouraging you on to the finish. Comparing how I felt now to before surgery was like chalk and cheese. In the months before surgery I couldn't run at all and even walking was becoming difficult. But if I compare back to my rowing days then there was no difference (apart from the march of time from which none of us are immune!) My training had gone very well. I'd clocked up just over 500 miles in the 16 weeks before race day so I was ready for it. I held back a bit in the beginning and it was only at 15 miles where I caught up to my target pace. Rounding the final corner in front of Buckingham Palace was an emotional moment and crossing the line was real celebration of everything I'd been through to get to this point. 5) Lastly, having gone through this experience, what are some of the key points of advice that you'd like to offer to other runners or athletes trying to train back into shape following a battle with a Schwannoma?
Don't try do too much too soon. Runners I know are notoriously bad at taking time to recover from injury. Listen to your body, and get advice from a qualified medical professional if you have any issues. Join a running club or group. Doing it with people around you is so much easier than trying to go it alone. Enjoy it!
___________________________________________________________
You can email Colin at: colin.mackenzie@rocketmail.com
______________________________________________________________
1). What were your symptoms before your Schwannoma was discovered? How did it affect your running before it was found?
The slow growing nature of Schwannomas meant that my symptoms came on very slowly over a long time. I gave up rowing in 2006 shortly after my daughter was born (but before I noticed any symptoms) and fell out of the routine of exercise. I had a few attempts over the next few years to get fit again but did start to struggle a bit with my feet. The best way to describe it is the feeling you get just before your foot falls asleep, the not quite numb feeling and not quite pins and needles. In some ways it felt a bit like my feet were drunk - I couldn't really rely on them landing correcty and in fact did sprain my ankle when playing around in the park. Over time my legs felt really tired all the time despite not doing any exercise. It is worth saying that I had no pain at all. By the time I went to see my GP I couldn't even run for the bus!
2). When your Schwannoma was located, where was it found? What kind of procedure was performed and was it successful?
I was referred to a neurologist who sent me for a head and neck MRI. He told me he was looking for either compression (eg a tumour of some sort) or inflammation (eg MS or Motor Neuron Disease). It turns out it was a Schwannoma on my spinal cord at C1/C2 (right at the top of my neck). It was surgically removed on 13 June 2012. A follow-up MRI a few months later confirmed it was completely removed and a further MRI in 2017 showed no regrowth. The only side effect I've been left with is a numb patch on the back of my head which corresponds to the specific nerve that was damaged. 3). How long did it take you to train back up to the strength required to run a marathon? What was that process like and how did your body feel after having gone through the experience of having the Schwannoma?
Recovering from the Schwannoma was one thing, recovering from the surgery was another. In the days after the surgery I could feel the feeling returning to my feet quite quickly as my spinal cord decomressed. My neck was very sore and stiff from the surgery though. It took a good 6 months before I had most of my movement back and a year before I felt normal again. August 2013 was the start of my get fit campain. I started on the treadmill and cross trainer before building up slowly to 5km. I was lucky to discover parkrun which is an organisation that puts on weekly free 5km runs in parks all over the world now. This helped with motivation and gradually my times improved. I built up over the next few years and found out I had a place in the 2017 London Marathon in late 2016.
I think the key was taking it slowly and listening to my body. I didn't have any residual symptoms from the Schwannoma, my movement was back to what it was before and it just felt good to be able to run up a flight of stairs again. If I'd been told the day before surgery that the best outcome was that my symptoms wouldn't get any worse I would have leapt at it. But here I was 4 and a half years later starting to train for a marathon.
4). How did you feel during the race? Did you find that it the feelings in your body were greatly different than before the Schwannoma?
The race was an amazing experience. The atmosphere of the London Marathon is incredible. Crowds line the whole course and there is a constant wall of noise of people shouting your name and encouraging you on to the finish. Comparing how I felt now to before surgery was like chalk and cheese. In the months before surgery I couldn't run at all and even walking was becoming difficult. But if I compare back to my rowing days then there was no difference (apart from the march of time from which none of us are immune!) My training had gone very well. I'd clocked up just over 500 miles in the 16 weeks before race day so I was ready for it. I held back a bit in the beginning and it was only at 15 miles where I caught up to my target pace. Rounding the final corner in front of Buckingham Palace was an emotional moment and crossing the line was real celebration of everything I'd been through to get to this point. 5) Lastly, having gone through this experience, what are some of the key points of advice that you'd like to offer to other runners or athletes trying to train back into shape following a battle with a Schwannoma?
Don't try do too much too soon. Runners I know are notoriously bad at taking time to recover from injury. Listen to your body, and get advice from a qualified medical professional if you have any issues. Join a running club or group. Doing it with people around you is so much easier than trying to go it alone. Enjoy it!
___________________________________________________________
You can email Colin at: colin.mackenzie@rocketmail.com
Saturday, May 19, 2018
Case Study #34 the Story of Wendy Nesdahl and Her Rare Gastric Schwannoma
Hello everyone and welcome to the 34th case study in our series covering Schwannomas. This case study is from our friend Wendy Nesdahl who kindly offered to answer a few questions about her extremely rare experience of having had a Gastric Schwannoma. We thank Wendy for taking the time to tell a bit of her story, since the more rare the kind of Schwannoma a person has, the more rare the information may be. And we want to make every effort to have our 'Case Study' series reflect the greatest number of different Schwannomas that are possible. Thanks to Wendy for sharing her story! - Neil
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If you are suffering from a similar kind of Schwanomma and would like to send a message to Wendy, you can email her at: wendy.nesdahl
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Case Study Questions
1) How old were you at the time of your diagnosis?
I was 42 years old at the time of diagnosis, but had been to my Primary Dr. and ER several times with no help. One time they even ordered a CT and it showed in the results (my Dr. just showed me this last week 5/18) and the ER sent me home telling me there was nothing they could do for me.
2) Do you have any history of Schwannomas in your family?
We are not positive, my grandmother on my Dads side had a tumor removed from her stomach years ago however we can not ask her as she has passed.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
It was located in my stomach. This tumor was very painful, at times it would feel like someone was stabbing me with a knife and I was doubled over in pain. I had a hard time eating foods when I did eat it went straight through me and I drank a lot of coke. Weird I know but it was the only thing that would somewhat calm my stomach.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
I was finally referred to a gastrenologist who preformed an endoscope and biopsy, which flared the tumor. Within a week I was in surgery with the same Dr. (Still not knowing it was a Schwannoma) and he removed it and 1/2 of my stomach. The tumor was the size of a golf ball. I was supposed to be released the following day however I was in so much pain (I suppose from all the nerve endings he had just cut) I stayed 3 days longer. My tumor was sent off for testing and that is how I found out it was a Gastric Schwannoma. Yes, I would go through it again, I lived pain free for the first two years. I have had three scopes since it was removed to check to see how I was doing. I am currently going through more testing as I have been having a lot of the same pains from the first one for about nine months.
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?
Be persistent! No one believed me for the longest time, lots of Dr’s said because I had Chronic Pain they would not treat me, which was really sad because I was truly sick and in tears when I would show up to the ER having an attack. I was lucky to end up with a very caring Dr. even though he new nothing about Schwannoma’s he has done everything possible for me! My tumor was found in a CT, however did not know what type of tumor until it was sent off for testing. That is when I was told it was a Gastric Schwannoma Nerve tumor.
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
The hardest part of my recovery was now I had a tiny stomach that hurt just not as bad and wow do you use stomach muscles. My Dr. did say after surgery that I had a lot of muscle he had to cut through, which kinda made me laugh cuz I was fluffy just not as fluffy as he thought. As soon as I was allowed to I would take mini walks even if it was one house away. Definitely follow Dr. Orders this probably helped me the most and made it a positive outcome for me.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
I don’t know that I can fairly answer this question for the fact that I feel my tumor probably went undiagnosed longer than normal because I have an internal stimulator in my back to control pain in my back and down my legs, but it also radiates around to my stomach. So even this time I have put off going to see my Dr. for nine months.
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If you are suffering from a similar kind of Schwanomma and would like to send a message to Wendy, you can email her at: wendy.nesdahl
Monday, October 23, 2017
The Inspiring Story of Luke Farrell, Pro Baseball Player & Schwannoma Survivor
Awhile back, a friend of our Schwannoma Survivors page, Michelle Santagata, told me about an exceptional young man by the name of Luke Farrell. Luke is a professional baseball player who is himself a survivor of a brachial plexus Schwannoma. Michelle's own son Craig, also a baseball player, had greatly appreciated the story of a top level baseball player who had faced down the exact same kind of Schwannoma that he is now dealing with. Connections were made and I was fortunate to hear back from Luke and he kindly agreed to do a short 3 question Q and A for us. We greatly welcome Luke's amazing story - and we are so grateful to the example that he provides for Schwannoma survivors everywhere.
So, for all those people who are fighting a Schwannoma right now - people who are wrestling with fear and anxiety for their future, we are proud to offer this fascinating and very positive insight into the experiences Luke, as he wrestled with a Schwannoma, and fought his way to health and a pro baseball career. Our thanks to Luke for taking some time to speak with us! - Neil
_________________________________________________________________
Questions:
1) Being a top level athlete requires a great deal from the human body. Many of us would love to know, what it was you felt (before removal) as you became aware that you had a Schwannoma? Simply put, what was it like to be a baseball player who finds he has a Schwannoma?
When I first found that I had a tumor I was told that we couldn’t accurately determine what it was without surgery. A biopsy was not possible and there were no other indications that left my doctors with the ability to make a diagnosis. Seeing the scans and hearing my doctors tell me they weren’t sure what it was that I had made for some really frightening, uneasy days. My plans to head to college and continue playing baseball just weren’t possible at that time. I quickly learned that a person’s health is the number one priority. It didn’t matter that I had big dreams for my future or that class began in two weeks. Everything else sort of stops and you’re left to face what’s in front of you. I’m thankful that I had people caring for and supporting me as we faced it all head on. Once the surgeries and diagnosis were made, then I could shift my focus to my recovery. Those dreams I had before all this craziness were still intact, they were just made maybe a little more difficult to achieve. I had lost about 25lbs and was in no shape to compete against Division 1 teams. But that was my goal and I was going to do everything I could to make it happen. I chose to believe that everyone is faced with their own set of challenges and this happened to be one of mine. When my schwannoma returned two years later, the process was similar. Absolute shock and a tidal wave of emotion, then trying to shift all my focus on solving this problem and beating it. In many ways, the desire to get back to baseball and school gave me a ton of determination to get through this time.
2) Your story about how bravely you faced surgery and recovery are well known ( we will provide links to articles telling the story ). I would be very curious to know, what was in like to be a baseball player on the road to recovery from a Schwannoma? What were the strategies you used to stay physically and emotionally strong through this process?
Recovery presents a lot of challenges both mentally and physically. In my head I still had a picture of what I should be able to do and the way my body should work on the field. Learning and accepting those limitations wasn’t an easy process. But, I was told that they could be made temporary and I could return to almost completely “normal” if I followed my physical therapy. At that point things were back in my control, which felt great after so much wasn’t for the last few weeks. I approached therapy with the same dedication and effort that I tried to put forth in baseball. In that way it was therapeutic both physically and mentally.
3) Lastly, I said to you previously that I had known a great many people who have accomplished fantastic physical and mental goals after having endured Schwannomas. A friend of our page recently completed the London marathon in very competitive time after enduring a spinal Schwannoma. But you are the first professional athlete that I have spoken with who has had Schwannoma. Being in the unique position you are, what are the words of hope that you may like to offer everyone from young athletes, to average people - moms, dads, and friends who are struggling with Schwannomas?
First, I’m thankful that you reached out and introduced me to this group. Having such a rare tumor has made it difficult to communicate to people exactly what it is that I have. At times that can be very alienating, something I’d think others with a schwannoma have felt. To be able to share and learn about this diagnosis with others who have been affected is really important.
If I were to give any advice to someone reading, it’s to try and take control of your fight as much as possible. Once I got over the initial shock, I did what I could to learn about what it is that I have. With the help of my family, we asked question after question of the different doctors we met until I felt comfortable moving forward. It forced me to have really candid conversations and make difficult decisions at a young age. I also knew I could control my attitude and my determination. When my first surgery failed I felt total despair. To wake up and hear that a 10-hour operation left me no closer to beating this thing is a feeling I don’t have the words for. But in my mind there was never another choice other than to move forward. Fortunately, my second procedure shortly after worked. When I learned my tumor had completely regrown just two years later, we went through this process again. We asked all our questions and made a plan. This time I was faced with radiation, but I wasn’t going to just stop and let this define me, I had to move forward. As of a few weeks ago I’m proud to say I’ve been healthy for 6 years. Each year when I go back for my scans I feel the same anxiety and the same fear. But I do my best to control what I can and go from there. Looking back, these moment have really shaped me and in many ways ended up having a positive impact on my life.
Photo: Luke with Dr. Jay Loeffler
Photo: Luke with Dr. Jay Loeffler
Articles about Luke:
Follow Luke on Twitter at:
@elFarrell52. https://twitter.com/elfarrell52?lang=en
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Saturday, July 29, 2017
Case Study # 30 Nicki Southwell and Her Rare 6th Cranial Nerve Schwannoma
Hello everyone! We are pleased to bring you our 30th case study - this one a Q and A with our friend Nicki Southwell. Nicki describes her experience having an extremely rare 6th cranial nerve Schwannoma. We thank Nicki sincerely for taking the time to tell her story, even with the struggles she continues to face - and we wish her the best to strength and healing in the days ahead. - Neil
_______________________________________________________________
1) How old were you at the time of your diagnosis?
59
2) Do you have any history of Schwannomas in your family?
No
3) Where was your Schwannoma located? And what were the symptoms that
lead to your diagnosis?
I was admitted to hospital from A & E with an excruating headache.
Rushed through for CT Scan which resulted in having another one with dye
injected. They knew I had a tumor. Transferred to bigger
hospital with a neuro department.
MRI confirmed that Schwannoma was growing out of/round C6 in my brain stem. (* Commonly referred to as a 6th cranial nerve Schwannoma )
4) Could you describe, in whatever detail possible, what kind of
surgical treatment was performed on your Schwannoma, and if you would consider it
successful? (Or describe what you may know about the surgery that may yet
be performed, if you haven't been operated on yet)
I had a very lengthy operation to remove as much as possible around C6.
Not sure at the time if all of it was removed, but all that could be
seen.
A follow up MRI and appointment shows that something is still on C6. If
it is more tumour it will grow, could be a lesion and it will remain as
is. Operation appears to have been a success at the moment.
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?
Obviously you need to be certain that you feel they know what they are
doing. Side effects: I did not think I would get hearing loss as well as
diplopia. I do and am trying to get appointments for help, but need to
get used to how things are. Medical team very excited about it being so
rare. I am glad some-one is pleased.
6) Can you describe what the recovery process was like for you – if
you feel you have made a positive recovery…and what things you have done
that have been of most help to you? (Also, you are free to describe what
doctors tell you to expect from your recovery if you haven't been in
surgery yet)
It is quite early on in my recovery. I have learned about the process
through a local charity with support, and what I have read. Aftercare has
not been good, and we have chased up appointments.
Local charity are a great help to us both. They have explained a lot and
are supporting us.
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)
No. Between double vision and loss of hearing on my RH side, I have
little confidence. Walking without help to guide me is difficult. I
have to cover my RH eye to read and block out the RH lens to see around
me. I am hoping that something can be done for my vision and am told
the hearing will improve on its own.
Nicki's email: nicola
*Note from Neil: Here is a link to an English-language Chinese Neurosurgical Journal article detailing other cases of this rare kind of Schwannoma:
https://cnjournal.biomedcentral.com/articles/10.1186/s41016-015-0004-5
_______________________________________________________________
1) How old were you at the time of your diagnosis?
59
2) Do you have any history of Schwannomas in your family?
No
3) Where was your Schwannoma located? And what were the symptoms that
lead to your diagnosis?
I was admitted to hospital from A & E with an excruating headache.
Rushed through for CT Scan which resulted in having another one with dye
injected. They knew I had a tumor. Transferred to bigger
hospital with a neuro department.
MRI confirmed that Schwannoma was growing out of/round C6 in my brain stem. (* Commonly referred to as a 6th cranial nerve Schwannoma )
4) Could you describe, in whatever detail possible, what kind of
surgical treatment was performed on your Schwannoma, and if you would consider it
successful? (Or describe what you may know about the surgery that may yet
be performed, if you haven't been operated on yet)
I had a very lengthy operation to remove as much as possible around C6.
Not sure at the time if all of it was removed, but all that could be
seen.
A follow up MRI and appointment shows that something is still on C6. If
it is more tumour it will grow, could be a lesion and it will remain as
is. Operation appears to have been a success at the moment.
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?
Obviously you need to be certain that you feel they know what they are
doing. Side effects: I did not think I would get hearing loss as well as
diplopia. I do and am trying to get appointments for help, but need to
get used to how things are. Medical team very excited about it being so
rare. I am glad some-one is pleased.
6) Can you describe what the recovery process was like for you – if
you feel you have made a positive recovery…and what things you have done
that have been of most help to you? (Also, you are free to describe what
doctors tell you to expect from your recovery if you haven't been in
surgery yet)
It is quite early on in my recovery. I have learned about the process
through a local charity with support, and what I have read. Aftercare has
not been good, and we have chased up appointments.
Local charity are a great help to us both. They have explained a lot and
are supporting us.
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)
No. Between double vision and loss of hearing on my RH side, I have
little confidence. Walking without help to guide me is difficult. I
have to cover my RH eye to read and block out the RH lens to see around
me. I am hoping that something can be done for my vision and am told
the hearing will improve on its own.
Nicki's email: nicola
*Note from Neil: Here is a link to an English-language Chinese Neurosurgical Journal article detailing other cases of this rare kind of Schwannoma:
https://cnjournal.biomedcentral.com/articles/10.1186/s41016-015-0004-5
Monday, November 28, 2016
An Experience With Cyber-Knife Treatment for Cervical Schwannoma
Hi everyone! Today I'm happy to present the story of lady who is a friend of our page - her name is Rae. Rae has undergone Cyber-Knife treatment for her Schwannoma, and she was kind enough to jot down her notes as the treatments progressed. Since Cyber-Knife is a kind of treatment that people commonly ask about, we thought it may be useful to share Rae's thoughts in the form of a blog. Cyber-Knife is a kind of targeted radiotherapy. It is used to try to shrink tumors, and it is also used to prevent the further growth of partially removed tumors. We encourage you to consult with you neurologist or neurosurgeon about any possible treatment with Cyber Knife - and we hope you find this firsthand experience helpful. Thanks! - Neil
Click here for a description of Cyber-Knife:
http://med.stanford.edu/neurosurgery/patient_care/radiosurgery_cyberknife.html
________________________________________________________________________
(Rae has a Schwannoma at C6 - C7 )
Prior to the first treatment, they made the mask which was a little frightening. It felt like a warm wet pillow held tightly on my face. that was left in place as they did a CT scan. This is what they use to put in the cyber knife machine to pin point the radiation beams on the tumor.
Treatment number one started with them giving me a 0.5 mg dose of Ativan when I arrived at the cancer center. I eventually got another 0.5 mg dose prior to being placed on the table. They strapped my arms and legs down and then placed the mask on my face. It was OK until they anchored it down. That was horrible. Long story kinda short..lol...the Ativan did nothing. They gave me Benadryl which was also not affective. I could not tolerate the mask over my face so they cut out the area of my eyes and nose. this made it much better.
After about 10 minutes into the treatmemnt the back of my head was burning. Once they start the treatment they cannot touch you or reposition in any way. Treatment number 2 was better as far as the pain goes...but not much. That brings me to treatment number 3.
Prior to my treatment I had a lot of back, neck, and arm pain and I took one dose of 10/325 hydrocodone. Then took the valium 30 minutes to the treatment. I still had pain in the back of my neck and head but it was bearable.
The treatments of 4 - 6 were not much different then the previous 3. Still very painful however I did take one norco 5/325 tablet on treatment 5 and two tablets on treatment 6. Treatment 6 was tolerable. Now, I am just waiting for the 3 months to re scan to see if the tumor is shrinking. Today the pain, tingling, and numbness in my arm seems to have increased. I was warned of this so I am trying to stay positive.
The doctor has said that they will do scans in 3 month intervals. The doctor at the cancer center has told me to not be alarmed if within the first 6 mo or so we see the tumor growing and my symptoms increasing ( that is really discouraging) but after that we should see the tumor shrink. They are hoping it will shrink and symptoms are relieved or it is possible the tumor will shrink but I still have symptoms. If that is the case I may then have surgery which will be less invasive.
Since i have finished my cyberknife treatments I continue to have pain and numbness. Some days are worse then others. I dont have a follow up MRI until May as the doctors say that in the first 3 months they generally see growth in the tumor.
Update from Rae, 6 months after
Hello...just thought I would give you an update. It has been 6 months post cyberknife. I had another MRI on the 31st. The tumor has not changed. Remains the same size. My neuro surgeon says that we will MRI again in 6 months. It may take a full year to see change. I continue to have pain and numbness.
Click here for a description of Cyber-Knife:
http://med.stanford.edu/neurosurgery/patient_care/radiosurgery_cyberknife.html
________________________________________________________________________
(Rae has a Schwannoma at C6 - C7 )
Prior to the first treatment, they made the mask which was a little frightening. It felt like a warm wet pillow held tightly on my face. that was left in place as they did a CT scan. This is what they use to put in the cyber knife machine to pin point the radiation beams on the tumor.
Treatment number one started with them giving me a 0.5 mg dose of Ativan when I arrived at the cancer center. I eventually got another 0.5 mg dose prior to being placed on the table. They strapped my arms and legs down and then placed the mask on my face. It was OK until they anchored it down. That was horrible. Long story kinda short..lol...the Ativan did nothing. They gave me Benadryl which was also not affective. I could not tolerate the mask over my face so they cut out the area of my eyes and nose. this made it much better.
After about 10 minutes into the treatmemnt the back of my head was burning. Once they start the treatment they cannot touch you or reposition in any way. Treatment number 2 was better as far as the pain goes...but not much. That brings me to treatment number 3.
Prior to my treatment I had a lot of back, neck, and arm pain and I took one dose of 10/325 hydrocodone. Then took the valium 30 minutes to the treatment. I still had pain in the back of my neck and head but it was bearable.
The treatments of 4 - 6 were not much different then the previous 3. Still very painful however I did take one norco 5/325 tablet on treatment 5 and two tablets on treatment 6. Treatment 6 was tolerable. Now, I am just waiting for the 3 months to re scan to see if the tumor is shrinking. Today the pain, tingling, and numbness in my arm seems to have increased. I was warned of this so I am trying to stay positive.
The doctor has said that they will do scans in 3 month intervals. The doctor at the cancer center has told me to not be alarmed if within the first 6 mo or so we see the tumor growing and my symptoms increasing ( that is really discouraging) but after that we should see the tumor shrink. They are hoping it will shrink and symptoms are relieved or it is possible the tumor will shrink but I still have symptoms. If that is the case I may then have surgery which will be less invasive.
Since i have finished my cyberknife treatments I continue to have pain and numbness. Some days are worse then others. I dont have a follow up MRI until May as the doctors say that in the first 3 months they generally see growth in the tumor.
Update from Rae, 6 months after
Hello...just thought I would give you an update. It has been 6 months post cyberknife. I had another MRI on the 31st. The tumor has not changed. Remains the same size. My neuro surgeon says that we will MRI again in 6 months. It may take a full year to see change. I continue to have pain and numbness.
Saturday, May 9, 2015
Case Study # 16, Susan Hicks and the Story of Her Left Orbital Schwannoma
Hello everyone! As we have been published Case Studies telling that individual stories of those who have had Schwannomas - we have strived, where possible, to tell the stories of the kinds of Schwannomas that are both common, and some which are less common or downright rare. A friend of the Schwannoma Survivor page Susan Hicks got in contact with me regarding a rare Left Orbital Schwannoma (This is a Schwannoma behind the eye)...and since hers was one of the first such cases I had heard of, I asked her if she would do a Case Study for us. She graciously agreed to tell us her story - and we publish it here with the hopes that it may help others. We thank Susan for her time, and wish her the best in her recovery - Neil
____________________________________________________________
1) How old were you at the time of your diagnosis?
I was 51 years old. 2) Do you have any history of Schwannomas in your family?
No. 3) Where was your Schwannoma located?
The schwannoma was located in the left orbit. Initially it was labeled as an angioma. And what were the symptoms that lead to your diagnosis?
We had moved recently. I have glaucoma and the new doctor did not like the look of my optic nerve. I have always been told they are small, almost childlike. I went for the MRI he ordered in January 2013. The MRI discovered a tumor by accident; it was not what was expected. 4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
Initially, they were going in for an angioma, so the procedure was as an outpatient. The Doctor went in at the corner of my left eye. He removed a piece of the skull to get behind they eye. After he got inside he realized it was not an angioma. He removed the tumor and sent it off for biopsy. I was put back together with a titanium plate in the temple. He told me he got 100%. I had double vision for 3 months and the pupil was dilated for 6 months. Then the pupil shrank smaller than normal and no longer responds to light normally. Fast forward 15 months, I was having problems with the left eye. They were minor complaints. Intermittently I would have trouble keeping the eye lid open, at times the eye itself felt like it was pulsing, and increased light sensitivity. I was sent back to the surgeon. He ordered an MRI. There was a 7 MM tumor. Here is where the potential for malignancy is brought up by the doctor. The surgeon sent me back to the neurologist. We waited another 3 months to try and determine if it was growing or what was left behind in the first surgery. We never did a post-surgery MRI. The next MRI showed growth, the tumor was now 1 CM. Now the surgeon and neurologist think malignancy is a real potential. They want to wait another 3 months. I sought out a second opinion at Johns Hopkins. It does take a while to be seen here. At this point, I began to have pain on the left side that would wake me when I slept. Also, a bright room would cause a horrible headache. The next MRI shows marginal growth, now 1.1 CM. Now they want to wait 6 months. I am uncomfortable with this. I kept my Johns Hopkins appointment. This doctor was sure it was a schwannoma again. We discussed the risks of doing nothing, the risk of surgery, and the very off hand chance of malignancy. He recommended surgery. We decided to take this path. I had surgery in March. I was scheduled for an hour but it actually lasted 4 hours. He followed a similar path as the first surgery. The titanium plate was removed and the same pieces of skull were removed. There was so much scar tissue and the tumor was very ingrained in the lateral muscle controlling left and right movement, it turned into more of an event than expected. He also chose not to put the titanium plate back in when he replaced the pieces of skull; he said I would heal faster and with less pain without it. I stayed in the hospital overnight. I can see from that eye but it no longer moves causing double vision. I am also cross eyed on the left. If this does not improve, I will see yet another surgeon in September to center the eye. I may always have some amount of double vision to the side even after the next surgery. He was only able to remove 95% of the tumor. He says it will return but estimates 10 to 20 years. He said sometimes with schwannoma’s you only get only one chance to completely remove them. So we monitor with routine MRI’s. Biopsy reveled it was a schwannoma again. 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?
Getting the right doctor with the correct experience is critical. I was misdiagnosed initially. Ask about all the possibilities. Also, get second and third opinions. Ask about their experience with all the possibilities. If you have a tumor in the orbit, seek out a neuro-ophthalmologist! 6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
The first surgery was rough. I was home and probably should not have been. I was not able to function. I was in this state at least two weeks. Someone had to be around constantly. The white of the eye was gone, replaced with blood. My left eye no longer responded to light normally. There was significant damage to the left optic nerve. The left eye was rotated a bit; the new glasses had to have a 10 degree rotation in the left lens. I returned to work 6 weeks post-surgery. The second one was easier. I was up and moving without assistance within 8 hours post-surgery. The eye was crossed but looked fairly normal. There was white to the eye and no blood at all. I was back to work at 2 weeks post-surgery, from home. I began driving at 3 weeks post-surgery. The doctor told us how to see just one image. Place scotch tape over the left lens of the glasses. It works great. At 4 weeks post-surgery, I was back at the office. 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)
Most things, I still miss seeing from the left side but it will return. I have significant optic nerve damage future. The tumor will also regrow another unknown. I choose not to sit and worry about any of this. Instead, I choose to live and deal with the bumps as they pop up on my journey.
_____________________________________________________
____________________________________________________________
1) How old were you at the time of your diagnosis?
I was 51 years old. 2) Do you have any history of Schwannomas in your family?
No. 3) Where was your Schwannoma located?
The schwannoma was located in the left orbit. Initially it was labeled as an angioma. And what were the symptoms that lead to your diagnosis?
We had moved recently. I have glaucoma and the new doctor did not like the look of my optic nerve. I have always been told they are small, almost childlike. I went for the MRI he ordered in January 2013. The MRI discovered a tumor by accident; it was not what was expected. 4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
Initially, they were going in for an angioma, so the procedure was as an outpatient. The Doctor went in at the corner of my left eye. He removed a piece of the skull to get behind they eye. After he got inside he realized it was not an angioma. He removed the tumor and sent it off for biopsy. I was put back together with a titanium plate in the temple. He told me he got 100%. I had double vision for 3 months and the pupil was dilated for 6 months. Then the pupil shrank smaller than normal and no longer responds to light normally. Fast forward 15 months, I was having problems with the left eye. They were minor complaints. Intermittently I would have trouble keeping the eye lid open, at times the eye itself felt like it was pulsing, and increased light sensitivity. I was sent back to the surgeon. He ordered an MRI. There was a 7 MM tumor. Here is where the potential for malignancy is brought up by the doctor. The surgeon sent me back to the neurologist. We waited another 3 months to try and determine if it was growing or what was left behind in the first surgery. We never did a post-surgery MRI. The next MRI showed growth, the tumor was now 1 CM. Now the surgeon and neurologist think malignancy is a real potential. They want to wait another 3 months. I sought out a second opinion at Johns Hopkins. It does take a while to be seen here. At this point, I began to have pain on the left side that would wake me when I slept. Also, a bright room would cause a horrible headache. The next MRI shows marginal growth, now 1.1 CM. Now they want to wait 6 months. I am uncomfortable with this. I kept my Johns Hopkins appointment. This doctor was sure it was a schwannoma again. We discussed the risks of doing nothing, the risk of surgery, and the very off hand chance of malignancy. He recommended surgery. We decided to take this path. I had surgery in March. I was scheduled for an hour but it actually lasted 4 hours. He followed a similar path as the first surgery. The titanium plate was removed and the same pieces of skull were removed. There was so much scar tissue and the tumor was very ingrained in the lateral muscle controlling left and right movement, it turned into more of an event than expected. He also chose not to put the titanium plate back in when he replaced the pieces of skull; he said I would heal faster and with less pain without it. I stayed in the hospital overnight. I can see from that eye but it no longer moves causing double vision. I am also cross eyed on the left. If this does not improve, I will see yet another surgeon in September to center the eye. I may always have some amount of double vision to the side even after the next surgery. He was only able to remove 95% of the tumor. He says it will return but estimates 10 to 20 years. He said sometimes with schwannoma’s you only get only one chance to completely remove them. So we monitor with routine MRI’s. Biopsy reveled it was a schwannoma again. 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?
Getting the right doctor with the correct experience is critical. I was misdiagnosed initially. Ask about all the possibilities. Also, get second and third opinions. Ask about their experience with all the possibilities. If you have a tumor in the orbit, seek out a neuro-ophthalmologist! 6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
The first surgery was rough. I was home and probably should not have been. I was not able to function. I was in this state at least two weeks. Someone had to be around constantly. The white of the eye was gone, replaced with blood. My left eye no longer responded to light normally. There was significant damage to the left optic nerve. The left eye was rotated a bit; the new glasses had to have a 10 degree rotation in the left lens. I returned to work 6 weeks post-surgery. The second one was easier. I was up and moving without assistance within 8 hours post-surgery. The eye was crossed but looked fairly normal. There was white to the eye and no blood at all. I was back to work at 2 weeks post-surgery, from home. I began driving at 3 weeks post-surgery. The doctor told us how to see just one image. Place scotch tape over the left lens of the glasses. It works great. At 4 weeks post-surgery, I was back at the office. 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)
Most things, I still miss seeing from the left side but it will return. I have significant optic nerve damage future. The tumor will also regrow another unknown. I choose not to sit and worry about any of this. Instead, I choose to live and deal with the bumps as they pop up on my journey.
_____________________________________________________
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