As I work with the group "Schwannoma Survivors & Schwannoma Fighters" I am often fielding lots of messages in the attempt to answer basic questions about Schwannomas for people who are newly diagnosed. Some of the questions and answers are often very similar, and so I thought that it may be a good and useful idea to simply put some of the basics down about Schwannomas - a kind of introductory guide for a person who knows nothing about Schwannomas and needs a leg up in starting to understand them. So here are a few questions with answers - the basics that I can share to help those newly diagnosed! - Neil
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1) What is a Schwannoma?
A Schwannoma is a nerve sheath tumor that is made up of schwann cells. These cells are known, in rare cases, to grow abnormally and cause the tumors we know as Schwannomas.
2) What are the symptoms of a Schwannoma?
As a person who is not a physician, but who is a survivor and someone who works with survivors - I can share with you that the most common symptoms I hear about are extreme pain, with numbness, loss of nerve sensation, and sometimes extreme weakness in the areas of the body affected by the Schwannoma. People do report nerve shocks, and feelings like tingling sensations. (I had all of these while I was suffering with a Schwannoma)
3) Are Schwannoma's benign or malignant?
Neurosurgeons have stated to me that the vast majority of Schwannomas are benign. Though it should be emphasized that they can still wreak havoc on a person's life. And also the majority of them are usually one off tumors, not multiple ones. Though malignancy is rare, the exact nature of the tumor is usually confirmed by a biopsy that is conducted after some or all of the tumor is removed via surgery. (In some cases, when it access to the tumor is easier, a biopsy may be performed before surgery to determine the exact nature of the tumor.)
4) Can Schwannomas turn into cancer?
In the vast majority of cases cancer and Schwannoma do not cross paths. A neurosurgeon confirmed to me that normally only those who have the condition of neurofibromatosis are at a higher risk of malignant, cancerous Schwannomas. When people hear the word 'tumor' they tend to think CANCER! Schwannomas are a different beast. Obviously you should consult with your doctor as to the exact nature of your own tumor, if you have been diagnosed - but for our purposes of speaking in general terms, it should be enough to say that Schwannomas and cancer crossing paths is extremely rare. Doctors with access to modern imaging machinery such at MRIs, will use every means available to them to try to accurately determine the nature of the tumor, and post operative biopsies are usually performed as well, to determine with certainty the confirmation of what kind of tumor it is.
5) If I have multiple Schwannomas, what is going on?
Though this is a question best answered by a doctor with experience in treating this condition, if you have been diagnosed with multiple Schwannomas, a chance exists that you may have the condition called Schwannomatosis. Schwannomatosis, generally speaking is a genetic condition that predisposes a person to multiple Schwannomas that may occur along almost any nerve pathway in the body - except along the auditory nerves where acoustic neuromas / vestibular schwannomas sometimes grow. Genetic testing is available to help confirm Schwannomatosis - however it has been expressed to me that in cases where a person has had multiple Schwannomas, some physicians may simply presume that diagnosis clinically, and treat the condition accordingly, whether genetic testing has taken place or not.
6) Where can Schwannomas grow in the body?
Simply put, they can theoretically grow along any nerve pathway in the body. Working with survivors I have seen that this is indeed true, and treatments have to be targeted towards people differently based on where their Schwannoma is, where it is located, and how it is affecting the body.
7) What are the treatment options for Schwannoma?
The most common treatment option is surgery. Newer treatment options like Cyber Knife treatments and minimally invasive treatments are becoming more common - however what I see from the survivors group is that a sizable number of people still have conventional open surgery to remove their Schwannomas. Treatment options are always best decided upon with the help of your doctor - and the strategy can be different based on the location of the Schwannoma, it's size, and the extent to which it affects a person's quality of life. And medication is often necessary to control the pain caused by the tumor, and to treat the interference in the normal functioning of the nerve by the squeezing of the tumor upon the nerve.
8) Can a person have a good quality of life after Schwannoma Surgery?
Yes indeed, a person can. I, for one, have a much better quality of life without the extreme pain of the Schwannoma I had. However, speaking generally, surgery on any nerve anywhere in the body is risky, and there will always be some chance of loss of function or residual pain resulting from the surgery - and also from the pressure the Schwannoma itself has exhibited on the affected nerve. A person has to weigh the prospects of surgery in consultation with their doctor. Many of the people in the Schwannoma Survivors group do still have residual pain and some issues even after Schwannoma surgery - I have said to people that I am about 85% as good as I was on my best days before being affected by the Schwannoma. This is certainly acceptable to me, personally. No, not every story of removal is a happy one - but there are reasons to stay optimistic due to the significant number of successful removals via surgery, and the people who have had a good recovery of their quality of life after surgery.
