Physical Therapy is Often Extremely Painful if You Have a Schwannoma

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

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?

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? 

3) What are the risks of leaving the tumor alone vs removing it?
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. 

6). Can you describe what the recovery process was like for you - if you feel that you have made a positive recovery…and what things you have done which have been of most help to you?  

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. 

7).  Are you able to do most things that you did before?

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: meera0503@gmail.com 

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

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.

Moms With Schwannomatosis Tell Their Stories

Hello!  And welcome to a short blog-article on the subject of moms with Schwannomatosis!

Recently when we asked for feedback and experiences from moms who had battled Schwannomas - we noticed we also received comments from moms who had the condition of Schwannomatosis (This is a condition that pre-disposes a person to Multiple Schwannomas, sometimes clustered in a single limb, or sometimes throughout multiple nerve pathways in the body).

We send our sincerest thanks to the mom's who shared a bit of their stories in hopes of helping others.  Wishing you all a strong and pain free day!

Neil
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Here are the comments we received from mom's with Schwannomatosis:

First response: I actually found my first Schwannoma due to a pregnancy. It was discovered during an ultrasound. I ended up miscarrying and they sent me for an MRI. Long story short, after surgery, and biopsy I discovered it was a Schwannoma. This began a discovery of several more, another one removed in my foot.  I was diagnosed five years ago with Schwannomatosis . I have had two successful pregnancies since then. My first pregnancy I didn’t have any problems, but my second one I did. My son was a large baby and I think he put pressure on the one in my pelvic area. I couldn’t sit for long periods of times, and had trouble getting up. It would cause numbness in my legs. It was only the last two months of pregnancy, but it was hard. I still managed to work and work out, just had to move through the pain. I just had my son two months ago, and have my annual MRI to check the growth of the one in my pelvic area. My doctor said the type of Schwannomas I have though, pregnancy hasn’t been known to cause any major changes in the growth. Again, not a lot of research, but if made me feel better.  Like the other women said I do worry that I passed these along to my boys.  After my first son I really didn’t want another because of this fear.  I realized how much I wanted a family though and I couldn’t let the disease get the best of me.  In the future I would like to get testing done and have my boys tested, but for now just making them aware and being conscious of any pains they have. I mean I didn’t discover mine until I was 30.

Second Response:  I have Schwannomatosis & was scared that I would develop other tumors due to pregnancy hormones. I have, so far, only had two Schwannomas. One in my left calf muscle removed Feb. 2012 & one on the bottom/ middle of my right foot which was removed in Dec. 2016. 

So far I have not shown any signs of other tumors, and hope that remains the case.
I am fearful that I will pass Schwannomatosis to my child and future children, but I do not want a disease to fill my life.
When I got pregnant I had been off of any pain medicine for 9 months. I’m not sure I would have tried for biological children if I couldn’t have my tumors removed. My pain was very severe and I couldn’t imagine dealing with the pain without medication.

Also. I didn’t state this. I had my daughter July 2018. No tumors at that time just previous, ones that had been removed.

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Moms Who Have Had Schwannomas Share Their Stories

Good morning everyone!  Today I am pleased to bring you our newest blog-article compilation.  This one is an article featuring experiences and stories from moms who have had Schwannomas.  In most cases, when we have created blogs on particular topics, the topics in question have come from questions that we get asked all the time.  Most recently, a good number of women have chimed in wanting to hear from other women about their experiences having had Schwannomas and being moms.  Some of the women interested currently have known Schwannomas and are wanting to know how other moms have handled pregnancy in addition to the Schwannoma issues.  Recently, on the SS and SF Facebook page we asked for moms to tell us some of their stories, and below are some experiences and responses from mothers who were kind enough to share them.  Thank you so much to the moms who have shared their stories!  We hope this article brings some much needed help and perspective to new moms to be who are also battling Schwannomas! - Stay strong, Neil

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Response #1:

Hey, guys! I am so happy I found you! I was experiencing back pain for 3 years now. I thought it was sciatica. I got pregnant and the pain stopped. 6 weeks after the baby was
born, my pain was back. I did an MRI and found out that I have a Schwannoma (L1-L2) and I
need surgery. What to do? I was breastfeeding and I was afraid.  I talked to several doctors here,
in Romania, and decided to postpone the surgery until the baby is 6 months old.  Meanwhile, to
cope with the pain, I took ibuprofen (200mg) once a day. My baby is going to be 6 months old in a
week and I am thinking that I should get the surgery.  I am very afraid that's why I'm so happy I found you. I hope to find the strength I need here, with other Schwannoma survivors, even though.  I am from another country. Thank you!

Response #2

 I was diagnosed in 2011 when I was 18 with one in my pelvic area...had it removed about four months after as it was causing me a lot of pain down my right leg and foot...had my first child in 2014 and had no problems and again in 2018 had my second and no problems at all.

Response #3

 I am a Mom and was diagnosed with a large sciatic nerve root Schwannoma
in 2002. I began experiencing pain in 1998. Saw several doctors and surgeons, had several
MRIs of my lumbar spine. The MRIs showed some mild bulged disks, but ultimately diagnosed with sciatica and piriformis syndrome. In 2000 I became pregnant with my son. As he began to grow, the pain became more intense and I was unable to take anything stronger that regular
strength Tylenol. In my 3rd trimester my OB/GYN approved an epidural type procedure that
would direct pain relief directly to the piriformis muscle and would not affect the baby. It didn't do much so I had to bear the pain. I remember taking lots of baths to relive the pain and I could lie
down in certain positions that helped. A few months after my son was born, I was back in the
doctor’s office and by now they thought I was drug seeking! Very frustrating! Finally in early 2002
I was referred to a chronic pain specialist and he suggested an MRI of my pelvis, finally!! So get a
call less than a week later and of course they tell me its a mass in my pelvis and I am now
freaking out thinking I have cancer, ugh! In May 2002 I was referred to a neurosurgeon and had
the surgery. It was successful and the tumor was benign. What a relief! Since the surgery I have
experienced numbness in my buttock down to my knee and its never improved after all of these
years. The nerve damage doesn't really affect my daily life, but I didn't realize it would be life long.

Response #4

I was diagnosed with an acoustic neuroma and multiple sclerosis on
the same day 5 years ago. I went on to have brain surgery to remove the neuroma. I was left with
a bit of temporary facial paralysis and a loss of hearing in my left ear. We got pregnant about 3
years later and have a healthy 8 month old baby. Being pregnant was the best I’ve felt since high
school. I was always scared about how pregnancy would affect my health, but my body flourished
during those 9 months. The postpartum period proved to be a little more difficult but I’m finally
leveling out again about 8 months later. I too worried about passing a genetic risk onto my child
but he is a robust 24 pound 8 month old and is seemingly very healthy. The vertigo that I
experienced after surgery has reoccurred in the postpartum period. I am thankful that I decided to
have a mother despite my previous reservations.

Response #5

 I had an intradural extramedually thoracic Schwannoma removed in 2013 and have
since had two children in 2017 and 2018. Made aware I would be unable to have an epidural
(wasn’t in my optimal birth plan anyway) due to cord compression and would need to be put
under general anesthetic if necessary but I labored fine with both children. Prior to pregnancy I
experienced regular nerve pain but both pregnancies seemed to alleviate all of those problems.

Response #6

I have Schwannoma’s and had during my pregnancy. Once I felt the life growing
inside me that’s all I focused on.  I had a son, perfect in every way.  I had a C-section that caused me a little hospital time. I was able to have my son sleep on my chest everyday thanks to a friend you would bring him in and stay with me to help change diapers, etc.  Because of all the meds I was not able to breastfeed.  It was mind over matter.  I was so at peace with them coming to the hospital everyday I put the pain aside to enjoy every moment.  It’s amazing how a baby can change your life for the better!!

Response #7

After birth of my daughter Nov 2012, I began having much right leg pain, heaviness, and numbness. Being military at the time it was a priority that I get back into physical shape by 6 months. My time limit passed and the pain became unbearable by the fall 2013. In June 2014 during incidental finding I had a pelvic 4cm plum on the right femoral/sciatic nerve. After finding a neurosurgeon to even see me, I found out I was pregnant with my third child at same time. So I was monitored for growth of the Schwannoma and went through the pregnancy without any medication. Pregnancy went perfect, no complications, Natural childbirth.  Tumor was surgically removed June 19, 2015. Unfortunately for me, my Schwannoma returned in 2016, same location and is currently 6 cm.

Response #8

I have a spinal Schwanoma that was discovered two months after the birth of
my daughter. I went on to have Cyber knife Radiation. Two years later with no tumor growth I had
a little boy. This pregnancy was very uncomfortable and I ended up need physical therapy for my
neck pain. I still have numbness and loss of feeling in my left arm. But both of my children are
happy &  healthy.

Response #9

I did and I'm raising 2 sons, one severely autistic.

Response #10

I’ve not had any more children (mostly by choice); however, my grandma went on
to have my dad after having what we think was a Schwannoma removed from her pelvic area. 
Also so many women have pelvic cysts, polycystic ovaries, etc., removed and still go on to have
successful births.

Response #11

 I have a 16year old and a 4 year old. I was not diagnosed until 2017. I. was told based on size of my trigeminal Schwannoma it was likely that it developed 10-15 years.  So my oldest was between 1-6. Only symptom I had was migraines and until 2017 was considered hereditary. No other issues pregnancy related known

Response #12

I have multiple Schwannomas. I had 2 miscarriages and 2 deliveries at term. I
was not diagnosed with Schannomas until almost 4 years after having my 2nd child. However I
have imaging that shows Schwannomas on the Iliopsoas muscle dating back to when I had my
second child. My sister who has passed away also had 3 successful pregnancies.

Response #13

My pain appeared months after my first pregnancy, and a year later while
rehabbing my suspected “herniated disc” I became pregnant with my second child. My pain
progressed tenfold during that pregnancy. I had an MRI 6 week’s post-partum and got my L5
nerve root Schwannoma diagnosis. I found that my nerve pain quickly accelerated after childbirth.
Not sure if it was related to delivery, hormones, stress, etc. After a grueling year of trying to
manage a toddler and newborn while living with chronic pain, I had my Schwannoma removed at
Mayo 3 months ago. My decision to have surgery was due in large part to my desire to have
another baby, as I know my body couldn’t have handled it in that state. At this moment my nerve
pain is nearly undetectable. I find myself terrified of having another pregnancy as I feel it may
jeopardize my progress. I would love to see any research that discusses pregnancy/hormones
and Schwannomas.

Response #14

Had my Schwannoma from my neck removed when my kids were 10 and 8. Doctor said by the size of it, I had it for about 15 years. Had good pregnancies with 1 miscarriage in between the 2. Although; never went into labor, and had C-sections for both. Have paralysis in my left vocal cord from the removal and I hate sounding so gruff for the past 20 years.  Still miss my old voice.

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!

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You can email Colin at: colin.mackenzie@rocketmail.com

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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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@gmail.com