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
