Hi there everyone! This is Neil the coordinator of the group "Schwannoma Survivors & Schwannoma Fighters". In 2009, when I was diagnosed with a Schwannoma I often tell people that despite the fact that I am an educated guy, I had NEVER even heard the word Schwannoma. This is something that is really not well known to the general public. So I created the Schwannoma Survivors Facebook page and blog, and now we are on our way towards helping Schwannomas and treatments become better known, and also answering practical questions so that we may be the best, smartest patients when we sit down to speak with our own doctor.
So I thought it would be great to make this blog about simple, useful questions that a person newly diagnosed may wish to ask their doctor.
Here are some basics:
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1) What is a Schwannoma, and how many of them have you seen in your years of medical practice?
Why this question; I would ask this question because physicians have varying degrees of experience with regards to their own ability to treat Schwannomas. Some people have told me that in no uncertain terms, that they saw doctors that had scant little experience dealing with Schwannomas. Neurosurgeon's tend to have the best resumes in treating or removing Schwannomas, and they are often best acquainted with what may be required to treat the Schwannoma you have.
2) Where is my Schwannoma located?
Why this question; where a Schwannoma is located has much to do with a host of things, including how difficult it may be to remove , how serious the attending nerve deficits may be, and what your prognosis may be after surgical removal. The best means, and the most common means to answering this is evaluation after an MRI with contrast has been performed.
3) Why am I experiencing these symptoms?
Why this question; the doctor can hopefully help you understand why or how the Schwannoma is interfering with the proper functioning of the affected nerves in your body.
4) How large is the Schwannoma I have?
Why this question; another basic thing - how large the Schwannoma is is a critical factor in the difficulty or ease of it's removal, and the amount to which it is interfering with your nerves or other organs that it may be pressing on as it has grown. This also is important in developing a prognosis to hopefully decide how well you can do after surgery.
5) What are my surgical options? And is Cyber-knife a viable treatment option for me?
Why this question; in the vast majority of cases conventional resection, i.e., conventional surgery is used to remove the Schwannoma from the affected nerve. New treatments are available, such as Cyber-knife treatment. I have only personally heard of a handful of people being treated with Cyber-knife, however it is reasonable to expect that less invasive procedures will become more advanced in the future, and will be used with greater regularity. It is always worth asking if a less invasive form of surgery or treatment is a viable option. You may also wish to ask if I.E. surgical treatment (Intracapsular Enucleation) is an option if you have a schwannoma in a particularly difficult location - I.E. surgical treatment has been repeatedly used successfully on schwannomas of the Vagus nerve, as well as some other schwannomas that are found in locations that make conventional surgery problematic or very risky.
6) How many Schwannomas have you removed?
Why this Question; another surgeon told me that this is a good question to ask, especially of your neurosurgeon - and it should immediately tell a patient whether or not they have a surgeon who is experienced with Schwannomas, or one who is not. Reason dictates that you don't want to be someone's test case. So ask the question - it is worth it.
7) How much of my ability can I stand to gain back after surgery?
Why this question; being perfectly honest, many of us regain a good amount of ability after surgery - but many of us (myself included) are not 100%. Being perfect after Schwannoma surgery is a rare thing. Therefore it is good to want to know, as much as is possible, what your quality of life can be post surgery.
8) What are the risks of surgery?
Why this question; all surgeries contain risks, and surgical procedures on major nerves, like the spinal cord for example, contain a significant amount of risk. A surgeon once told me that some Schwannomas almost pop off. Others must be cut out. Others reveal themselves too difficult to be removed completely and are partially removed. It is important to have a physician tell you, with as much accuracy as possible, what the risks are with surgery. Because this gives way to the inevitable act of having to balance the risks against the rewards, when deciding whether to have surgery, or opt for some other course.
9) How long will my recovery time be?
Why this question; this is a thorny question and it may not have an exact answer - but it is still worth asking. We all want to know how much time from our lives recovering from surgery is really going to take - and it is my experience that recovery from Schwannoma surgeries - especially Schwannomas removed from the spinal cord or acoustic neuromas - can be protracted. Recovery times really can vary, but my cautious opinion from experience tells me they often run long.
