Q and A on Schwannomas with Dr. Bohdan Chopko, from Stanford University Medicine

Hello everyone!  I'm very pleased to bring you our 4th physician Q and A, this one featuring Dr. Bohdan Chopko of Stanford Medicine.  Dr Chopko kindly offered his time to help us answer a short set of questions on Schwannomas.  On a personal note I wanted to let you all know that this gentleman is a very nice guy, and offered his expertise gladly - and all of us at the Schwannoma Survivors group send him our warmest thanks.  Allow me also to note that it was Dr. Chopko who successfully removed a 9 POUND Schwannoma from one of our group members!  When I heard that, I was eagerly hoping to speak to him and am delighted to have him join our Q and A series!

You can read Dr Chopko's bio here: https://med.stanford.edu/profiles/bohdan-chopko

1)   Can you share any surgical expertise that might give light to whether or not, or how common is – nerve regeneration?  It’s been stated generally that peripheral nerves show a better tendency to heal than do central nerves – like the spinal cord.   Do you find that this is true?  And what thoughts might you offer on the subject?

 Nerve regeneration can certainly occur, and is much more likely when involved with the peripheral as opposed to the central nervous system. That said, nerve regeneration, if it does occur, will occur very slowly, perhaps at best a rate of 1 mm a day. In order for a peripheral nerve to regenerate, however, certain conditions need to be met. The most important is that a continuous bridge, or conduit, composed of the critical components of the outer nerve sheath, be present across the damaged nerve site. Also, the parent cell that is contributing to the severed and regenerating nerve pathway needs to be healthy. If the parent cell is unhealthy, then the critical signaling molecules necessary for nerve regeneration will not be present. As far as the central nervous system is concerned, the hurdles to create a reparative environment are much, much higher, and hence progress has been extremely slow from the standpoint of practical applications.

2)   Many people fervently wish for tumors to be treated with newer technologies like Cyber Knife.  Cyber Knife seems to have only been used on a few occasions to treat members of the Schwannoma Survivors & Schwannoma Fighters group.  Can you shed any light on its usage, and why it would appear that conventional surgery is still predominant?

Cyberknife is a very precise method of delivering therapeutic radiation, and is similar to other techniques (such as Gamma knife, IMRT and LINAC) that are broadly referred to as “radiosurgery.” Radiation works best on destroying rapidly growing cells, and highly vascular (or bloody) tumors. Schwannomas tend to be neither rapidly growing nor highly vascular, so radiation is not an ideal treatment approach. That said, radiation can still be useful for shrinking or stabilizing a Schwannoma. Radiation also does have side effects, some of which will not be apparent for 1 to 2 years after the treatment has been delivered. Because of these issues, most skull base surgeons, myself included, use radiation as a second choice, salvage procedure, or in patients who may be at high risk for complications from conventional open surgery.

3)   Some people with schwannomas are very dismayed to wake up from surgery and find that their tumor was only partially removed.  Can you share any thoughts as to why, very specifically, might a surgeon opt for a partial removal?  And, do you find that patients are generally granted relief and some manner of return to health by a partial removal?

The judgments made during surgery are critical for the overall welfare of the patient. Although it is always our dream to remove every last speck of a tumor and cure a patient, this goal is not always realistic. Partial resection, or debulking, is a common and valid approach in all forms of skull base tumor surgery. If during surgery I conclude that removing a component of a tumor that is related to a vital structure will lead to destruction of that vital structure, then I will make no attempt to remove that component of the tumor. Debulking a large amount of the tumor is in essentially every case a meaningful maneuver for the patient and will typically lead to a resolution of at least some of the signs and symptoms. There are many cases where “going for broke” is pure foolishness, and destined to lead to a bad patient outcome, and a patient needs a surgeon with the wisdom to understand when to stop.

4)   Many Schwannoma Survivors are interested to know, when it is a that a doctor changes their working diagnosis from schwannoma to Schwannomatosis?  Is simply having a 2^nd tumor of any sort considered sufficient evidence for Schwannomatosis, or does a surgeon wait for genetic testing or further scans to confirm it?  

 Schwannomatosis is, in my view, a diagnosis that requires genetic testing and consultation in order to firmly establish the presence of the syndrome. A precise diagnosis is especially important in patients who either have children, or are planning on having children, so the family knows what to expect. 

5)   Lastly, there are people who have surgery and who still have significant symptoms.  Such as pain, electric feelings, pins and needles, numbness, etc.  What useful advice might you share with those people, to hopefully encourage them in their recovery process and also assist them in getting the best recovery in the long run?

Persistent abnormal or painful feelings in the affected nerve after tumor resection is not unusual, and does not necessarily portend a permanent situation. A nerve can have a “memory” so to speak for pain, even after the tumor has been resected and the pressure relieved, much like a gong that has been stuck 1 minute ago remains vibrating. If such uncomfortable feelings persist beyond a few weeks, a patient should discuss this with his or her physician. Techniques for managing persistent pain include membrane stabilizing medications (such as anti-seizure medications), and functional procedures, such as direct nerve stimulation.

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 **     Disclaimer: Dr. Chopko and Stanford University Medical Center assume no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Chopko has offered his advice generally on the issues relating to treatment of Schwannomas - however Dr Chopko 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.

Schwannomas and Anxiety

On occasion, as I have been working with Schwannoma Survivors, certain issues come up over and over again.  For those who have visited the Schwannoma Survivors & Schwannoma Fighters Facebook page you will have read my attempts to tackle issues that come up - and I think that our blog is also a wonderful place to touch base with those things most important to Schwannoma Survivors.  One such thing I wanted to speak on briefly in this blog is anxiety - specifically anxiety related to Schwannomas.

First of all this is real.  It's best to just be upfront and acknowledge it is real.  It should not be swept under the rug or ignored - if you feel that anxiety, related to any part of the Schwannoma survivor journey, is something that is getting in the way of healing or at least progressing in your life, I certainly urge you to consider useful options.  It is very hard for many people to seek professional counseling because it still has attached to it a stigma of weakness - which is, of course, not true.  People seek counseling for many reasons, and if a person feels that it may contribute to their overall well being, or if they feel that they have an anxiety issue related to Schwannomas, I would urge them to at least consider it.  Though there are other approaches that may be of service to someone if they are open for it.  Meditation, reflection, the trust of friends - any number of these things are possibilities.

My understanding is that there is good evidence, from tribal medicine up to modern medicine, that our mental state affects our physical state.  One example I have given is that when one of my small kids starts screaming, or when I have to deal with a monster tantrum - I feel my right leg light up with nerve shocks and often feel increased back pain.  My Thoracic Spinal Schwannoma was removed completely in 2009 and has not regrown.  However I do deal with the nerve issues left over after surgery, and I have found that a screaming toddler can easily have an affect on the kind of day I am having - as well as my pain level.  It is surprising to me how fast my body reacts to it.

Many people I talk to feel a number of anxiety related issues when it comes to Schwannoma.  Some seem to border on panic attacks.  Others report a more generalized anxiety.  Some have a great fear that their previous Schwannoma will regrow.   Others are troubled mentally by the fact that they only had a partial removal of their tumor - so when their bodies react badly, when nerves fire or when pain comes - they are left perpetually wondering if the tumor will regrow further, of if they are feeling that very process of the tumor enlarging itself and coming back into their lives - signaling more trouble ahead.

I have also spoken to people who have made it very clear that family members, even sometimes well meaning ones, didn't seem to understand what they were going through.

I myself have had surreal, and sometimes irritating, conversations that were something like "Oh, you have back pain...my uncle he had this disk thing..."  And when you try to clarify that you had a relatively rare nerve sheath tumor you can see their eyes glaze over in confusion - about 1 second before they mentally check out.  In my own case I had a Schwannoma in my spinal cord so I too have had to deal with trying to express that this isn't just run of the mill back pain - this was a tumor inside my spinal cord.  This kind of reaction also speaks to the fact that Schwannomas are rare - you will be very lucky ever to casually meet someone who has had one.  So, in turn, if so many have no idea what they are, then they have no idea how to react to someone who has this.  And we realize that only by making Schwannomas better understood, generally, can we equip others with the ability to be compassionate and understanding about dealing with them.

I do find that most people do mean well.  Most of them want to be compassionate and understanding....if they can get their head around what the problem is.  If they can't, then the Schwannoma Survivor is left, yet again, staring at a friend or family member who wishes well but doesn't know where to start.

Also, as we explore the issue of anxiety relating to Schwannomas, I think it is fair to say that it happens for people quite differently, one to another, and it changes according to the stage one is at relative to their Schwannoma.

Commonly, if a person has just been diagnosed they feel a great level of anxiety because they have been diagnosed with a relatively rare nerve sheath tumor.  Many of us, such as myself, had never even heard of them before we were told we had one.  This stage of anxiety speaks to a very primitive and natural human response.  Few of us can remain calm when a doctor says "You have a tumor."  And I find that for those newly diagnosed, sensible, distilled information is of the greatest help.  This is the primary goal of the Schwannoma Survivors & Schwannoma Fighters Facebook page and blog.  To ask sensible questions and get practical answers.  The hope here is that if a newly diagnosed person gets practical, useful advice - the natural anxiety that comes with this process will be diminished, and hopefully less difficult all around.

There is another stage of anxiety for Schwannoma Survivors in that the surgery which is often required for Schwannoma removal, is frequently problematic - even when everything goes well.  A person can still be left with lingering nerve issues, strange feelings, any number of things - after surgery.  So once they have done their homework they are often left standing at this fork in the road - where the matter comes down to opting for surgery, with its built in risks and issues - or not for surgery, which so frequently turns into a more anxious and difficult waiting game as symptoms progress and the tumors often grow.  Many of us, in our minds, we like clean solutions.  Schwannoma surgery doesn't usually offer one.  Surgery can usually alleviate the worst of the symptoms, and, in many cases, remove the entire tumor - but one can still be left with nerve issues and difficulties that they may have to deal with from that point going forward.  Most people do opt for surgery - unless there are very specific, physician informed, medical reasons for not doing so.  However plenty of stress and anxiety is built into this process of having to commit to a course of action about what to do.

Post surgery there is anxiety as well.  As a person begins to relearn their own body and rehab themselves from what is, very often, difficult surgery - the question of how much ability one can regain, and how quickly, constantly pursues a person during the recovery stage.  And I can also say that from my work, I have noticed that Schwannoma recoveries usually run longer rather than shorter - especially ones of the acoustic neuroma or spinal cord variety.  So people can feel frustration at this long, slow journey back to health.

And it would not be fair to not mention our dear survivor friends who have Schwannomatosis.  (Schwannomatosis is the genetic condition that leaves a person pre-disposed to Schwannomas along multiple nerve pathways in the body)  All of the concerns listed above are multiplied times a thousand for that handful of people who fight Schwannomatosis.  The quality of life concerns, the anxieties about whether to have, or not to have, the entire body scanned.  The treatment issues as one hopes to keep the best quality of life when dealing with multiple Schwannomas - often multiples at once, those are all very stressful and hard to keep a grip on.  I hope that those who have Schwannomatosis have the love, support, and even counseling if needed - so that they can, while trying to keep their bodies in the best condition possible - keep their minds well and their spirits up.

The entire whirl of experiences - the things that happen to a person after being told they have a Schwannoma, these things have many layers and require a great deal of good common sense and compassion to deal with.  First comes with acknowledgement - but the experience I speak to also tells me that these mountains can be conquered.  People do - and people will continue to do so.  Maybe it is up to us, when dealing with anxiety issues that are attached to Schwannomas - to have faith enough in others to believe that they can understand, if we do a good job of expressing to others what we are going through.

There is an old Buddhist saying "If your compassion does not include yourself, it is incomplete."  So we should hope, that we remember this at every point along the way of our Schwannoma journey.  After all, it really isn't the Schwannoma's journey.  It is your life's journey - the Schwannoma is an intruder :)  Let us deal with the intruder as best we can - and stubbornly refuse to give up the beauty of the journey.

Neil