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 

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

The Inspiring Story of Luke Farrell, Pro Baseball Player & Schwannoma Survivor

Photo: Luke Farrell on the field with the Cincinnati Reds...his Schwannoma scar visible along the top of his neck.  

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

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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 

Articles about Luke:

http://www.kansascity.com/sports/mlb/kansas-city-royals/article137962343.html

http://www.espn.com/mlb/story/_/id/20796689/luke-farrell-cincinnati-reds-first-pitch-team-managed-father-mlb-game

Follow Luke on Twitter at:

@elFarrell52.   https://twitter.com/elfarrell52?lang=en

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Case Study # 26 Lori Carlberg and the Story of Her Jugular Foramen Schwannoma

Hello everyone!  Today I am pleased to present our 26th Case Study, this one the story of our friend Lori Carlberg and her jugular foramen Schwannoma.  This is another kind of rare Schwannoma, and we are so very grateful that Lori took the time to share her story.  She has been through quite a struggle - and she has been kind enough to share her story in the hopes of helping others.  Thanks so much to Lori for sharing her experiences! - Neil 

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1)  How old were you at the time of your diagnosis?

I was 39 when I was diagnosed

2)  Do you have any history of Schwannomas in your family?

 There is no history of schwannomas in my family

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

 My schwannoma is located in my jugular foramen.It affects cranial nerves 9, 10 and 11. I had terrible headaches mostly on the left side of my head. The pain would start in my neck and travel up through my head and would just ache and pound and nothing helped it. I could barely get out of bed, I would constantly vomit and the pain was just too much for me. My husband was in Iraq at the time (he is active duty Army) so my daughters who were 14 and 17 at the time had to take care of me. My oldest took me to the emergency room and long story short, they couldn't find anything wrong so just loaded me up with painkillers. I didn't care at that point. I just wanted to sleep and be pain free. The painkillers basically knocked me out for 18 hours a day. When I was awake the pain was still there. My daughter took me back to the ER the next week. They did CT scans, blood work and still nothing. They told me to see a neurologist. I went the following week to see a neurologist and he immediately sent me for an MRI. That is when they found out it was a 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 have had 3 craniotomies. The first one was Sept of 2009. My schwannoma is dumbbell shaped so part is in my head and the other part is my neck. When the surgeons first went it, they were going to try to get the whole tumor but they only opted to get the top part. After the surgery the surgeons told me in order to get the whole thing, they'd have to cut my facial nerve, cut my auditory nerve (then I'd always be deaf in my ear) and I may possibly need to have a feeding tube because I could have swallowing issues. I actually felt pretty good after that surgery. I had been going for bi-annual MRI's to keep an eye out for regrowth. In 2011 they found it growing back (it grows back like a fluid filled cyst which causes problems as in headaches and head/neck pain) My neurosurgeon said it was time to operate again so he did in the summer of 2011. The following spring the tumor was growing back again in that fluid filled cyst. I then had the cyberknife performed to see if the radiation could finally get rid of it. All seemed well until the summer of 2014. I started getting headaches again and I just wasn't feeling myself. I told my husband that I think the tumor is causing problems again. I ended up in the ER twice in the same week. 5 days later, I had my 3rd craniotomy. It's been a long road. I just had an MRI yesterday to check the growth. I've been having head pain again so I'm not sure what's going on. I would say my surgeries have been successful but in my instance my tumor keeps coming back in cyst form which causes problems with cranial nerves 9-11.

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?

 As far as questions go, I feel I asked my dr's quite a few questions and my dr's were very open and honest about what could happen. Because my tumor is in such a rare spot, a lot of different things could go wrong. There are so many nerves that could be affected. I would just tell people to ask any questions whether you think it's a dumb question or not. Make sure the dr's tell you what exactly to expect when you are healing. That's one area where I don't think my dr's were clear about and of course I had no idea what to expect. It's not fun recovering after brain surgery. But I've had 3 now so I know exactly what to expect. On a side note, I have dealt with a couple issues that happened during my surgeries. After my first surgery I started having problems with my shoulder. Come to find out, they think it happened because of the way I was positioned for so long. After my 2nd surgery, my voice started getting very weak. They nicked my vocal cord during surgery and now I have a paralyzed vocal cord. So, there are always other things that you have to be careful about during these risky surgeries.

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)

 I have definitely made a positive recovery but I feel like I'm still dealing with it 8 years later. I am a positive person so I try to look for the good in everything. There is a good chance I will be having another surgery but I totally know what to expect now. I'm always in ICU for 5 days after surgery then they let me go home. The first 5 days are NOT fun. I want to get out of the hospital so badly. It's so hard to sleep there and it's so uncomfortable. After I come home, I have another rough 5 days. I try to start weening off the painkillers about then. Painkillers and I don't mix well. They usually make me nauseous so I try to get off them as soon as possible. 

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)

 For the most part, I'm able to do everything I did bt (before tumor) I try to avoid roller coasters or anything that could hurt my neck. I feel my neck isn't strong and since I still get headaches/head pain frequently, I shy away from activities that could make it worse. I may always have part of this tumor in me unless the dr's decide to try to go in and remove the entire thing. In that case, I'd be deaf in one ear and possibly have facial paralysis and swallowing issues. I really hope that never happens. In the meantime, I enjoy my life fully everyday. I think God for all my blessings and even my hard times. It is what makes us stronger people. 

Lori Carlberg

beachmama2005@yahoo.com

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How Long Before I Felt Better After Thoracic Spinal Schwannoma?

Hello everyone!  We are continuing our series of blogs where people with Schwannomas answer the question "How long before you felt better (i.e., able to resume normal life)?" After their particular kind of Schwannoma.  Today's installment were the replies that Schwannoma Survivors gave who have had Thoracic Spinal Cord Schwannomas.  We hope you find them helpful!  Neil
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First Answer:

My surgeon and hospital letters always referred to my schwannoma as being in the lumbar area but it was actually t10-t11.  I was in hospital for 9 days post op. I was off work for 12 weeks with a 6 week phased return after that. It was about 4weeks post op before I started to extend walking from what was necessary to trying to push my body. Lifting things took lots longer- simple things like lifting the kettle took about 6-8weeks before I could attempt.

Second Answer:

My tumor at T4-5 was removed last May. Since partial vertebrae had to be removed to get at it, I have a rod from T3-6 and screws. It was a difficult recovery. The first 3 months were challenging. I still have a great deal of right thoracic pain. Also, some weakening or slumping of shoulders. 

The one-year MRI follow-up showed what appeared to be scar tissue and a bit of hemorrhage.  I had an epidural 3 weeks ago, but haven't had much relief.
On the plus side, prior to surgery I had terrible cardiac-like pain. The removal of the tumor cured that.

Third Answer:  

I had a tumor in T12 removed in 2001. It took 6 weeks before I could walk a reasonable distance. I couldn't pick anything up or put any washing on for around 4 weeks. I was in hospital for 2 weeks including 3 days in intensive care as I had some complications. I also suffered a blood clot on my lung not long after surgery. Apart from all that I am 14 years down the line and I suffer with a lot of nerve pain but I do live a normal life. I have a full time job, go to the gym 4 times a week and have a great social life. The pain before tumor removal was unbearable but now I can bear the pain. 

Fourth Answer:

Thoracic Spinal cord schwannoma was the one that I had (Neil) and when I wrote about this process some time ago in a blog / article, here is how I put it " It was probably a year before I felt fully functional. I was able to walk, with difficulty, within a week or two after surgery. I was able to help take care of our infant son after about 2 weeks. I did have to use small amounts of medication, and still do occasionally. About 2 and a half years after surgery, I got up the courage to try jogging and found that I could do it. I still do struggle with back pain but I have to live with the fact that I have permanent softening of my spinal cord in the area where the tumor was...and that has resulted in pain and discomfort, and some numbness around my stomach." I do still have some nagging issues with stiffness, back pain, and electring tingles down my right leg...but these are manageable, and I still feel quite lucky to have come through the ordeal - Neil (page coordinator)

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A Q and A with Dr. Anne Barnes, Psychiatrist, on the Mental Aspects of Dealing With Schwannomas & Chronic Pain

Hello everyone! This week I'm pleased to present to you a very special Q and A with Dr. Anne Barnes, psychiatrist (*Small note worth mentioning - psychiatrists are also medical doctors, so that is why I much preferred to have a psychiatrist assist us, because they stand a better chance at also understanding the physical issues Schwannoma Survivors endure).  Dr Barnes has graciously volunteered her time to answer 5 questions on the mental aspects of dealing with Schwannomas and chronic pain.  And since this Q and A covers a slightly different area than previous ones - I wanted to be clear about one thing; the only goal I have here in introducing this subject is related to the very real fact that many Schwannoma Survivors, including myself, have admitted privately that there is a mental component to dealing with Schwannomas.  People have confided this to me privately many times, and I have written about it as well.  This Q and A is meant, very simply, to learn a bit more about this reality, and hopefully help us learn how to keep our mental health in the best possible shape, while dealing with the physical issues.  We thank Dr. Barnes for her time and insights, and you can read a brief bio about her at the end of this blog.  Have a great day! Neil

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1)  Nearly all of those who are survivors of Schwannoma tumors have had to deal with pain- sometimes a great deal of it, and even severe chronic pain.  As a mental health professional, can you tell us a little bit about some of the techniques that concerned psychiatrists use in order to help the patient combat chronic pain, and hopefully regain a better quality of life, mentally and physically.

Many mental health professionals (including psychiatrists, psychologists, social workers, and marriage and family therapists) have been trained in psychotherapies that help patients combat chronic pain.  Cognitive Behavioral Therapy (CBT) is one form of therapy with a significant evidence base for its effectiveness in treating chronic pain.  In CBT, a person learns to notice the negative “automatic thoughts” that surround the experience of chronic pain.  These thoughts are often distortions of reality.  Cognitive therapy can teach a person how to change these thought patterns and improve the experience of pain.  CBT teaches pain patients how to avoid fearful anticipation, get rid of discouraging thoughts, and adjust everyday routines to help prevent physical and emotional suffering.  CBT is also a proven treatment for depression and can reduce symptoms of anxiety in chronic pain. 

CBT is also a form of skills training and gives patients coping skills.  Patients find that they can use these coping skills in other stressful areas of their lives. 

Examples of coping skills that patients are encouraged to develop include:

-Staying active and continuing to do activities they enjoy

-Exercising (especially low impact exercise such as yoga or walking)

-Developing social connections (e.g., making a lunch date with a family or friend)

-Utilizing distraction techniques when pain flares (e.g., engaging in a pleasant experience such as taking a walk or watching a movie)

-Utilizing relaxation techniques such as meditation or breathing exercises to keep stress levels under control.  (Jon Kabat-Zinn, PhD has done wonderful work on mindfulness meditation for chronic pain and has CD’s available that teach this)

-Other forms of self-care including healthy sleep and eating habits

CBT can be provided individually or within a group format.  Sessions are usually 1-2 hours in length and treatment lasts approximately 10 to 20 sessions.  CBT does involve homework and active participation from the patient in order to reinforce the skills learned.

The goal of CBT in regard to chronic pain is symptom reduction and functional improvement, rather than complete pain relief. 

To treat chronic pain, CBT is most often used together with other methods of pain management.  For example, some antidepressants have been shown to help reduce pain and may be prescribed as part of a patient’s pain treatment plan. 

2)  There is a sub-group of people who are Schwannoma Survivors who have the genetic condition of Schwannomatosis.  They may have anywhere from a handful of tumors in their body all the way up to some who have too many to count.  As a counselor, what are some good first steps in trying to deal with a condition that may be inoperable?  How might a counselor help a person come to grips with what such a serious condition might mean for their mental health going forward?

I think that good first steps include helping to empower a patient as much as possible in understanding their illness and gaining support from others.  A counselor may encourage patients to not isolate themselves and to reach out to family and friends for support.  If a patient does not have a solid support system already in place, then the counselor may support them in taking steps to build one.  For example, there may be support groups available or other community resources that the patient could utilize.   A counselor may also encourage patients to learn as much as possible as they can about their condition. In this way, patients can ensure that they are getting the best treatment available.  This will also help increase a patient’s sense of independence and control.  Counselors can also help ensure that patients have medical support from experts they trust and encourage patients to talk to their health providers openly about ongoing questions and concerns regarding their illness as well as the treatment they are being provided (e.g., concern about side effects from medications or pain).  Counselors may also encourage patients to keep doing the things they like to do, especially as this can help them remain connected to others and boost their self-confidence.

A counselor should also be aware of the increased risk of major depressive disorder occurring in patients with a chronic illness and to also monitor for symptoms associated with this disorder.  Living with a chronic illness is a challenge and it is normal for patients to feel grief and sadness as they come to grips with their condition and its implications.  However, if these feelings don’t go away (i.e., last for more than a few weeks) or patients start having trouble sleeping or eating or if they lose interest in the activities they normally enjoy, these may be symptoms of depression. 

Symptoms of depression include:

-Ongoing sad, anxious or empty feelings

-Feeling hopeless

-Feeling guilty, worthless, or helpless

-Feeling irritable or restless

-Loss of interest in activities or hobbies once enjoyable

-Feeling tired all the time

-Difficulty concentrating, remembering details, or making decisions

-Difficulty falling asleep or staying asleep or sleeping all the time

-Overeating or loss of appetite

-Ongoing aches and pains, headaches, cramps, or digestive problems that do not ease with treatment

-Thoughts of death or suicide attempts

Early diagnosis and treatment of depression can ease distress along with the risk of suicide.  It can also improve the patient’s quality of life and increase their likelihood of sticking with the treatment plan that their medical team has created for them.

3) Several people in the Schwannoma Survivors group have been quite upset by having been told by doctors that the source of their physical pains were mental.  Some doctors have suggested that they see a mental health professional- when what is actually going on is that doctors attending to the physical condition are sometimes mis-diagnosing an undiscovered physical problem as a mental one.  So when it turns out that the problem later proves absolutely to be physical, survivors are understandably none too happy at the implication “It was all in your head”.  With that in mind, I am curious to know what kinds of signs a psychiatrist would look for if a misdiagnosed patient (someone who actually had a tumor or serious medical issue that is physical in nature) shows up at your door, and what kinds of signs might alert you to the fact that this person’s condition has a physical, rather than mental cause? 

  

If a patient feels that their doctor is unable to diagnose the cause of their pain, is unfamiliar with their type of pain, or is unsure of how to treat it, then I would encourage them to ask for referral to another doctor who has experience with their particular symptoms or disease.  Also, if pain lasts much longer than expected, or a primary care doctor or specialist hasn’t been able to treat his or her chronic pain satisfactorily, then a patient could ask for a referral to a pain specialist. 

Signs that would indicate that the pain probably has a physical cause and that I would be very concerned about would include:

-Changes in bowel or bladder function

-Numbness and/or tingling in the arms and/or legs

-Muscle weakness and loss of balance/falls

-Chills or fever

-Unintentional weight loss

-Headaches that do not go away or get better with treatment

-Shortness of breath

-Nausea, vomiting, diarrhea, loss of appetite

These symptoms could be signaling a serious problem that requires medical intervention soon.

4) Could you expand a little on the links between depression and chronic pain?

Some of the overlap between depression and chronic pain can be explained by biology.  Depression and chronic pain share some of the same neurotransmitters which are brain chemicals that act as messengers traveling between nerves.  Depression and chronic pain also share some of the same nerve pathways.  The impact of chronic pain can force someone to struggle with tremendous losses, such as the loss of sleep, exercise, social networks, relationships, sexual relationships, or a job and income.  These losses can make a person feel depressed.  Depression then magnifies the pain and reduces one’s coping skills.

People who suffer from both chronic pain and depression (as opposed to only chronic pain) often report experiencing more intense pain as well as feeling less control of their lives.  They also tend to engage in more unhealthy coping strategies. 

Because chronic pain and depression are so interconnected, they are often treated together.  Since chronic pain and depression involve the same nerves and neurotransmitters, antidepressants are used to treat both chronic pain and depression.  Antidepressants work on the brain to reduce the perception of pain.  Research has demonstrated the effectiveness of tricyclic antidepressants such as Elavil and doxepin in treating chronic pain.  However, the side effects associated with the tricyclic antidepressants sometimes limits their use.  There are newer antidepressants available such as Cymbalta and Effexor that act on the neurotransmitters of serotonin and norepinephrine.  These newer antidepressants also seems to work well for chronic pain and tend to have fewer side effects than the tricyclic antidepressants.

Exercise can also be helpful in chronic pain.  Exercise also helps improve depression by releasing the same kind of brain chemicals that antidepressants release.  Patients should consult a physician about designing an exercise plan that will be safe and effective for them as this can be helpful in treating both chronic pain and depression.

 5)  One issue that does come up with tumor survivors is how we deal with family.  We recently had a very courageous group member write a message- which was something of a “coming out” about their own continued pain and also the discovery of what may be another tumor in their body.  Other people seem to prefer to deal with their illness/tumors very privately.  Do you find, in your capacity as a counselor, that one strategy is more beneficial than the other?

I think that this is a deeply personal decision for each patient and that one strategy is not always going to be more beneficial in every situation.  However, I do encourage patients to develop as much of a support system in whatever way they can, to not isolate themselves, and to reach out to family and friends if possible.  Some patients may have reasons for not wanting to tell others, however.  Some patients may have a history of unhealthy family dynamics or abuse by family members and don’t experience these family members as being supportive.  Being able to decide who and who not to tell may provide a sense of control in a situation where the patient feels like they have very little control.  They also may have professional concerns regarding how they will be treated if their work finds out.  Some patients may also not want to have others bear the perceived emotional burden of their situation.  They may just want to be treated “normally” instead of as in the sick role and derive strength from that. However, I do think that it is important for the counselor to work through this decision making process (regarding whether or not to share their diagnosis with family or friends) with the patient.    A counselor can also help patients to identify other sources of support (e.g., support groups, community resources) that can be helpful whether or not they decide to share their diagnosis with their family or friends.  A counselor can also provide a significant source of support for patients in their treatment relationship as well.

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A Brief Bio of Dr. Barnes:

Dr. Barnes is a psychiatrist who is board-certified in both child/adolescent psychiatry as well as adult psychiatry.  She is a member of the American Academy of Child and Adolescent Psychiatry.  She grew up in North Carolina and attended medical school at the Brody School of Medicine at East Carolina University, performed her residency in adult psychiatry at Emory University, and did her fellowship in child and adolescent psychiatry at Stanford University.  Dr. Barnes believes in providing evidence-based treatments as well as focusing on the strengths of the individuals and families that she works with.  Dr. Barnes also has a special interest in integrative and holistic treatments in mental health and is a diplomate of the American Board of Integrative and Holistic Medicine.  She is particularly interested in treating individuals with ADHD, mood disorders, and anxiety.   She has a private practice and also works at a community mental health center in San Francisco, CA.  She can be reached at annebarnesmd@gmail.com

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Disclaimer: Dr. Barnes assumes no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Barnes has offered her advice generally on the issues relating to treatment of Schwannomas - however Dr Barnes and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.