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
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*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.
