A Letter with Info on the After-Surgery Phase, for Acoustic Neuroma Survivors

Hi everyone!  One of the goals of the Schwannoma Survivors page and blog is to try to work to fill in the gaps in our knowledge and understanding about various kinds of Schwannomas.  One such gap - something we hadn't explored as much as we would have liked, is what a person goes through after Acoustic Neuroma / Vestibular Schwannoma surgery.  We have two case studies online where people spoke about Acoustic Neuroma, but recently I got more information on some of the treatments and therapies used after surgery, from a lady who had been through it.  The lady who is speaking in the narrative prefers to stay anonymous, though she gave us permission to publish the content of what she has shared on the blog.  The information that she wrote to another friend of the page was something that I think would be useful to others.  So with thanks to her - and she knows who she is :), I present to you this first person account - a kind of informal letter with some details on the treatments and therapies used after Acoustic Neuroma surgery - Neil
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At the time it was found (in late April / early May 2005), my tumor was the size of an apricot, adhered to the spinal lining, grown into the acoustic nerve, and beginning to tear the facial nerve.  (All I knew until the tumor was discovered was that I was always very subtly off balance, had lost much of my hearing in my left ear, and was feeling very gentle spiders walking along the area near my upper left lip.  I understand only after the second surgery that the spiders-walking feeling was the facial nerve being pressed.  I got the tumor headaches about two weeks after discovering the tumor.)  

In June  I was in surgery to reduce the size of the tumor so that we could do Cyberknife radiation treatment on it.   I was in a lot of pain.  I think I was in the hospital for at least four nights, at my grandmothers house for a night as a staging way to get me back home.   At home I was bedridden for at least a couple more days — I could walk down the hall, barely, using the wall to keep me upright.  Over the next three weeks I walk a little bit further each day.  Getting to the end of the drive with my husband was HUGE, then I went back to bed.   I went back to work on week 5, but only half time for the first two or three weeks.  I’d get to a point around 11am where an easy jig-saw-like task that would typically take me 15 minutes became impossible to figure out.

In November I was back in surgery because even though they pulled out 80% of the tumor the first time, it still wasn’t small enough for Cyberknife.   When I woke from that surgery, the left side of my face was completely unresponsive and I couldn’t hear at all out of my left ear.   I was in much less pain by the time I got home — barely used any of the pain pills.  Some of the experience I described in my email to (name kept anonymous).  I’m happy to give you more info if it helps as when I sent her was related specifically to the paralysis and the physical therapy.  Note, though, my doctor told me not to tape my eye shut as it could scratch the cornea.

In January (2006) I did the Cyberknife treatments.   (Off topic — have I ever shown you the mask made for me for the Cyberknife?  Freaky-cool.   Like Geiger molded my face.)  I was still recovering; I had some very interesting logical lapses during January.  I probably went back to work (the second time) in February.  I probably went to the doctors in March or April (so 4 to 5 months after surgery).    

We think the Cyberknife treatments finished off whatever hearing I had left.   If it means the tumor won’t grow again (which was the aim of the radiation), it’s a good trade.

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*Note from Neil, here is a 2nd part that was written, which she also gave permission to share

Neil and I talk sometimes, in general terms, about the schwannoma page he runs. He mentioned that you were looking for information about what to do post-op, related to facial paralysis. Here’s a little background on me: I underwent surgery for an acoustic neuroma about 10 years ago. Actually, two surgeries, to reduce the size of the tumor. After the second surgery the left side of my face was completely paralyzed. (Don’t blame the doctors. It was a miracle I didn’t have problems earlier.) The doctors and hospital staff were very uninformed about it — the best they had was “most of the time things return to normal in about 3 months.” Four months later I was in to see the nurse practitioner for an unrelated visit. She gave me the name of the physical therapist who worked on facial paralysis (whom she knew about because her son mentioned his therapist did facial work…) So I have no reference for how to find people who deal in facial paralysis but I can tell you some of what he and I did together to improve the movement and symmetry in my face.

We started with a nerve conduction test (I don’t promise that’s what it was actually called, though) which indicated which areas were least / most damaged and therefore most / least likely recoverable. He video taped me talking so we could view facial movement more objectively and selectively.

In our visits he showed me exercises to do which targeted specific muscle movements to work on at home. When I first began, I had no movement in the left side of my mouth outside of what moving my jaw produced. I had to focus on one movement. I think we began with the corner of my mouth. He demonstrated the movement. (Watch someone smile gently, lips closed, with just one side of their mouth.) My job was to relax every muscle in my face then move just the corner of my mouth up. I had to practice this in the mirror every day. I don’t remember if we did just the corner of the mouth then two weeks later did the upper lip movement, then… or if he showed me how to isolate each and I practiced it all every night. But I do remember it was very frustrating, and very difficult to convince myself to go back to it day after day. I also remember when — two weeks later? three? — the corner of my mouth started to move.

At nights I slept attached to a device that sent periodic pulses of electricity to the muscles as a way to stimulate the nerves. The sensation was a bit like being tapped lightly. I can’t remember what the device was called - or really how long I had it. My husband and I recall the timing for this differently. He thinks “not long”, but I’m fairly sure I had this device for close to a year.

The therapist also had me work with a small biofeedback machine for a couple of months. I stuck a pad to a target area on my face and attached the pad to the machine, then focused on muscle movement. We began biofeedback after some of my mouth muscle began moving, and used it as a continuation of that work. So, if I attached it a little above the left side of my mouth, I then relaxed all the muscles in my face and focused on raising the top part of my lip in such a way it registered on the machine.

When I had more muscle movement, he had me practice certain phrases and tongue twisters in the mirror with the focus on keeping the mouth symmetrical when pronouncing letters such as p and r.

The last piece that I recall came several months later, when I’d regained muscle movement and symmetry. We did more muscle isolation exercises specific to counteracting the synkinesis he saw. (Synkinesis, if that’s unfamiliar, is when the nerves get a bit mis-wired and moving one area causes a completely unrelated area to move. For a couple weeks, for me, raising my right (unaffected) eyebrow also caused the left corner of my mouth to move a small amount.)

I don’t remember how long I worked with the therapist, but I’m sure it was over a year. It may have been as long as two. My face is still partially paralyzed, but it is a huge improvement over what I had just after surgery. My eye still doesn’t blink quickly, but that was one of the areas the first test showed unlikely to recover. However, while I cannot grin, I can smile. I can pronounce words properly (just after surgery I couldn’t pronounce my phone number. About the time I began with the therapist I could but needed to speak it slowly.) My face is still asymmetrical, but is not nearly as pronounced as it was before. And I have a suspicion that I’d have much more muscle movement if only I’d been a bit better at convincing myself to do those muscle isolation exercises.

I hope there is some piece here that helps you find the answers to your questions. Facial paralysis I found deeply saddening at first, then just an annoyance.
My best to you as you heal.
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Our thanks to the person who allowed us to share some of this correspondence.  We hope it is of assistance to those of you recovering from acoustic neuroma! - Neil

Schwannomas, a Story of Discounted Tumors and Misunderstood Pain

'Well at least it wasn't cancer!'

'But your tumor was benign, right?'

We've all heard these things said before.  To be quite honest, they are usually said by very well meaning people who try to be encouraging.  (I have also heard it said by doctors who have a more specific reason, wanting to clearly make the medical distinction of what a Schwannoma is, versus cancer).

Certain things have become quite clear to me, after having worked on Schwannoma issues and survived one myself - and that is, that Schwannomas are frequently discounted.  And by that I mean they are not taken as seriously as other tumors or conditions.  I have frequently talked to people on the Schwannoma Survivors page who mention having difficulty helping family and loved ones understand just what they are going through.  The truth is, these tumors can be very, very bad.  They can impact your life and bend every part of your daily experience around the pain and neurological deficits that they create.  So why is it that people discount Schwannomas so frequently?

Part of the problem is the simple fact that they are not very well known.  Go pick ten people off the street and ask them what a Schwannoma is, and there is a good chance that you will run 0 for 10, and find absolutely nobody who knows what they are.  So just making these tumors better known is a paramount goal that we should all try to aspire to.  We have to share our stories, because raising awareness for rare diseases, conditions, and tumors - is always a good thing.  And we will never suffer for our becoming wiser in that regard.

But the ugly truth still prevails...most people have no idea what a Schwannoma is.  So it follows that they will not likely have any kind of mental architecture for coming up with a way to encourage and support someone who has a Schwannoma.  If we mention Cancer, Diabetes, Heart Disease, etc - there is immediately something that people can grasp and there are even entire support networks there to inform and assist families.  Very little, to almost none of that - exists for Schwannoma Survivors.  So, strange as it may seem - it is up to the person with the Schwannoma to often try educate others or help people understand what these insidious tumors can do.  So as we suffer, we have to explain.  We have to try to share what the reality of our lives is like, and we have to pull that word "Schwannoma" out of the dark and put it up in lights.

Awhile back I was doing more online reading on Schwannomas and I came across a discussion where several people mentioned that they didn't like the word "survivor" being used in association with Schwannomas.  Our page and blog are called "Schwannoma Survivors & Schwannoma Fighters" so I took some time to think about it.  Of course, a person may self-identify any way they wish.  They can call themselves a flying goat headed crocodile zombie if they like! :)  How a person self-identifies is very personal, and they have that right to assert whatever label they wish in a non-harmful manner.  All of this called to mind the first thought I had when I thought about Schwannomas being discounted tumors - and that is, that if we have no mental frame of reference for understanding a Schwannoma, especially on a societal level - it would stand to reason that some people may not understand why some of us prefer to call ourselves 'Survivors'.  (And for some, no amount of suffering is enough to raise to this level.)

The simple truth is this; Schwannomas CAN be that bad.  I have read so many examples of the relentless, grinding misery these tumors can cause - I learned early on not to discount them the way others do.  For example, when more than one person says to me that they were at the point of contemplating ending their lives just to get OUT of the pain caused by Schwannomas, that would make most people to sit up and take notice.  These are usually very normal, well adjusted people who love life - but when they have told me that the pain was so unbearable that they were to the point of even contemplating ending their own lives, then we must understand how serious that is.

When people write me and tell me that they have the condition of Schwannomatosis - and that they have more Schwannomas than a doctor can count in their spinal cord alone, then it is really that serious.  When you hear of them speak of multiple surgeries, and still struggling with pain and neurological deficits in multiple points of their bodies, then you can't cheapen or lighten that story.

When someone has an acoustic neuroma...and they detail the experience of loosing hearing on one side, or having their facial muscles paralyzed.  Having to tape their eyelid shut just to sleep.  Having balance problems, nausea, and most of all - carrying on as the wonderful people they are while presenting to the world a face that has been affected by facial paralysis - then it is that serious.  And this is a tumor that often has to be surgically operated on near the base of the skull, just below or beside the brain.  Most of us with normal faces can't properly contemplate the struggle and the courage that it takes to show themselves to the world, while hearing impaired or deaf on one side, struggling to maintain balance, and still mustering the courage, beauty, and dignity to present themselves to the world.  And these amazing people do it again and again each day.  Yes, these tumors are that serious.

When a person can take a strong, narcotic medication in a desperate attempt to reduce pain - and it does almost nothing to reduce the pain...then yes, they can be that serious.

When people like myself tell their stories of spinal cord Schwannomas - and they talk about lying curled up on the bed in pain, unable to lie down flat at night - and therefore, unable to sleep...the twin effects of sleep deprivation and chronic pain ravaging tired bodies and minds, sometimes for years...

When a person tells you about their Cervical Spinal Schwannoma - which leaves shooting pain and weakness down their arms.  When the weakness and nerve shocks affect everything below their necks...

When a person tells you about the damage done by a particularly bad Lumbar or Sacral Schwannoma which leaves them with a permanently debilitated bowel and bladder...

When a neurosurgeon tells one of our page members that the worst Spinal Cord Schwannomas can feel like "The pain of terminal cancer, without the relief of death," then they are really that serious.  (Don't misunderstand me friends, I do not, in return, seek to cheapen the experience of having cancer.  I too have had multiple family members lost to this scourge of a disease.  Almost all Schwannoma Survivors will emerge from the experience with our lives - however the point about the pain Schwannomas cause is striking, and worth taking note.)

When people have Schwannomas in their arms and legs, and the million small gestures we all take for granted...reaching out to pick up something, lifting a leg, standing up, become acts of pain and grit...

Take it from me, the guy who has read the entire inbox of the Schwannoma Survivors & Schwannoma Fighters page - these tumors can be that serious.  No, not all are serious in that way, or to the same extent - but the simple truth is that they CAN be.  A certain number of people have very successful Schwannoma removals, suffer minimal side affects, and are able to resume a healthy and vigorous life.  And for those folks, if the winds of fortune were kinder to you - then we celebrate that and are delighted that you passed through the storm with minimal damage.

But the argument I make is that if a person with a Schwannoma wishes to call themselves a 'Survivor' then that should be respected.  You do not have to call yourself that, if you wish not to.  But respect it if another person does.

For Schwannoma Survivors we have no charity walks.  We have no telethons.  We have no celebrities advocating our cause.  If we are diagnosed with a Schwannoma, it is an extreme rarity if we will even have any relative, friend, or loved one, who even knows what we, or our doctors, are talking about.  And so it's not a stretch to realize, often to our dismay, that finding others to relate to is not easy - and that is why I created the Schwannoma Survivors page and blog.  And that is why I have continued to be inspired and amazed by the gritty, beautiful, and fascinating people that I have met on the page.

We are people who have been handed a burden that almost no one else understands.  We have often felt that we were walking in the dark.  Slowly, as a result of efforts made in the years since, lights have appeared and illuminated other Schwannoma Survivors - and we can look across the space of the internet and at least take comfort in the fact that we are not alone.  There are still those spaces of darkness, ignorance, misunderstanding - and spaces filled with that giant, often prevailing notion that Schwannomas are discounted tumors.  It will be up to us to light those spaces up and help others understand that these tumors can be extremely serious, and they can have far ranging, lasting affects on innocent people's lives.

We can call ourselves whatever we like...

Myself, I am a proud 'Schwannoma Survivor.'

- Neil

*This blog is dedicated to one amazing anonymous survivor and contributor to the Schwannoma Survivors Facebook page and blog.  You know who you are :)

Schwannoma Case Study #15, Tina Baker, and the story of her Retroperitoneal Schwannoma

Hello all! We are happy to present to you our 15th case study, this one the story of our friend Tina Baker and her retroperitoneal schwannoma (This is a schwannoma near a person's kidney). Schwannomas of this kind are quite rare, and we certainly thank Tina for taking the time to sit down and share her story, in hopes of helping others who may be seeking treatment or answers!  -Neil
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1)  How old were you at the time of your diagnosis?

47

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?

It was a right sided schwannoma between quadratus lumborum and psoas at the L5 level.

My diagnosis was an incidental finding.  In September 2012 I had a fall down a flight of steep brick steps and badly hurt my back.  After a couple of months I noticed I was having shooting pains in my right leg, especially when walking down steps.  I informed my back specialist of this (who I was under since the fall).  He requested a MRI scan.  This showed something up but I needed a CT scan with contrast for more defined results.  I had the CT scan (and ended up as an inpatient as I had a severe allergic reaction to the contrast medium).  A couple of days later I received a call from my back specialist to see him urgently.  He told me the scan had revealed a tumour next to my kidney.  He said he was referring me to another hospital to have a needle biopsy.  This was arranged and the result was a schwannoma. After this is where my visits to numerous hospitals seeing different surgeons really took off.  

My symptoms escalated from the shooting pains, to constantly having electric shock feelings from my thigh down to my knee, numbness and pins and needles.  I had pain in the hip area and back pain ( although I have suffered with back pain for many years and was badly bruised from the fall so can't really say if any back pain was associated with the schwannoma). 

The first Surgeon I saw at a London Hospital said he didn't think the symptoms in my leg was associated with the schwannoma.  He referred me to a neurologist.  The neurologist requested a full head and body scan to ensure there were no other schwannomas and EMG testing.  These tests confirmed an absent response from the symptomatic right lateral cutaneous nerve of the thigh in keeping with the known schwannoma around this nerve.  I then went back to the Surgeon and he said in order to remove the schwannoma it would mean major surgery, open abdomonial surgery.  He would have a mdt meeting to discuss the surgery and then I was to see him after.  At the following meeting he confirmed he did not want to operate taking into account the risks, he said I might never walk again.  He referred me to another Surgeon at another London hospital.  At this meeting I was told I had a form of cancer and it needed to come out!  As we know schwannomas are benign in the majority of cases so I don't know why he said this to me.  He said he was confident to do the surgery despite the risks.  However, he too changed his mind and my confidence in the Surgeons was rapidly diminishing.  By the summer of 2013 my leg was really symptomatic and it would be embarrassing when out and I am jolting with the electric shocks.  Walking was getting more difficult.  I was getting very frustrated as after the biopsy in January I was told I would not have to wait long for surgery in London, yet it was six months on, symptoms much worse and nobody wanted to do the surgery despite agreeing I needed surgery.

I then contacted the nurse I had been allocated and shared my frustration.  I asked if I could be referred to The Royal Marsden Hospital which is a cancer specialist hospital.  Although my tumour was not cancerous I felt that The Royal Marsden may be able to help me.  This was the turning point.  I met with a Surgeon whose special interest was schwannomas.  He had dealt with schwannomas before and although he informed me of the risks he felt things would be fine.  He said he would have to use the open surgery approach as it was important for him to be able to manipulate the nerve.  For the first time I felt optimistic about the surgery and felt I would be in good hands.  He booked me in for surgery two weeks later, 23 October.

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)

Through a lower abdominal mid line incision the cavity was entered.  The colon was mobilised out of the right peritoneum to the mid line.  The schwannoma situated in the lateral cutaneous nerve or just after it rises from the femoral nerve and was easily discovered.  The capsule was carefully opened in the direction of the nerve fibres and the schwannoma enucleated with ease.  The nerve was intact at the end of the procedure.  The organs returned to its normal place.  I was in ICU after surgery and remained in hospital for six days.  On day two during the night I was woken for X-rays as my right lung was being 'lazy' but I was closely monitored and was ok.  I came home with a walking aid and crutches and of course plenty of pain medication.

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?

It is crucial to find a Surgeon who has experience with schwannomas although be prepared it may take longer.  My experience with the Surgeons was they were eager to inform me of the risks associated with the surgery, which of course they have to, but not so keen on any optimism for the surgery.  As well as asking/being told of the risks and all the bad bits, ask how well it may also go and what the best outcome may be post surgery.  This will give you a basis to really weigh up the pros and cons and if you have to have surgery because of symptoms ruining your quality of life, hopefully enable you to go into surgery with some optimism that all will be well, rather than is it a gamble you are embarking on.  Ask about the pain afterwards and is it likely you may suffer with adhesion pain.  I was not warned of adhesion pain at any time.  Also ask the Surgeon for a realistic estimate of time before you will get back to some kind of normality although I understand everybody is different and may be a difficult question to answer.

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 was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain.   However, after about five weeks the abdominal pain was very intense and disabling.  To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes.  On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me!  I saw my GP and he said he would admit me to hospital.  I did not want this so I had yet another scan which proved to be ok.  I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better.  He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped.  It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process.  I still have the same symptoms in my leg although they are no where near as bad as they were before surgery.  I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted.  I had to rely on being taken out in the wheelchair but I use to look forward to those trips out.  I think you have to be positive and literally take one day at a time,  and don't think about tomorrow, that's what helped me psychologically. 

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

Yes most things, although walking for a long while can still be an issue sometimes as I can get hip pain (as well as back pain, but I don't think the back pain is related) and the symptoms in my leg can become worse and it feels numb.  I am still mindful that I can't lift anything heavy as I still have some abdominal pain which varies according to my activity. Despite this I am glad I had the surgery, it was worth it.