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

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
__________________________________________________________________________

*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.

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

 ______________________________________________________________

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.

____________________________________________________________

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

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

______________________________________________________________________________

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.

_____________________________________________________________________________

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

_____________________________________________________________________________

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.