Author Topic: radiation vs surgery for NF2  (Read 5558 times)

tinabean925

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radiation vs surgery for NF2
« on: January 26, 2014, 09:50:40 am »
We accidentally found a 2.5cm AN and NF2 in my 17 year old son on Dec 4, 2013. We were told watch and wait is not an option. We have to make a decision as to radiation or surgery.

Our first Neurologist at Albany Medical Center suggested LINEAC and told me there was no chance for malignancy from this radiation. Of course I ran for a second opinion to Mass General Hospital where they specialize in AN for NF patients. We are dealing with insurance issues now, but i'm feeling hopeful.

I have a feeling that this second opinion is going to urge us to do surgery. My son has no symptoms yet. His hearing and eyes are perfect. I don't know if he would be able to handle the possible outcomes. It seems likely that he would lose at least some hearing during surgery and possibly even facial paralysis. It doesn't seem fair and I am terrified for him. I'm sure it seems rather extreme through the eyes of a 17 year old. And I am willing to bet he would choose gamma knife over surgery just as the safer option. Ultimately the decision will not be his alone.

Has anybody ever heard of or known someone who had surgery before any symptoms were present? 

Kathleen_Mc

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Re: radiation vs surgery for NF2
« Reply #1 on: January 27, 2014, 04:54:41 am »
2.5 cm and no symptoms? WOW! Absolutely no symptoms? Has he had a hearing test? Nerve conduction studies? I wasn't aware of the hearing loss I had until they tested the nerves and found they weren't functioning properly and was 50% deaf in that ear.
NF2? Has he tumors elsewhere? What are the symptoms/signs of NF2?
Given the size decision has to be made about treatment, getting too big for gamma etc. and that would only leave surgery with it's more "side effects". If my tumor had been found small enough for gamma (if we had it in Canada at that time, which we didn't) I know I would have preferred going that route......I was 23, had been misdiagnosed since about age 17.
Let's hope your second opinion is helpful in helping your son make a decision
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

tinabean925

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Re: radiation vs surgery for NF2
« Reply #2 on: February 03, 2014, 02:45:56 pm »
Actually I was estimating the size. I checked and it is actually 2.8cm. That is correct he has no symptoms according to him. His audiology test is normal range although less on the left where the larger tumor is. He also has a small tumor on the right nerve  1.4cm. Opthomologist test was normal, he does have lisch nodules which are common in NF2. He has not had nerve testing, but does well in sports at school and passes all the push, pull, walk tests they always do.  He also has a large meningioma in the brain area. There were also multiple what "appear to be" ependymomas and/or meningiomas on the spine.

I've read of people having symptoms with even smaller AN's. I guess he has been very lucky so far.



Susan A

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Re: radiation vs surgery for NF2
« Reply #3 on: February 08, 2014, 09:34:59 am »
Tinabean - will you be seeing Dr Plotkin at MGH? He runs the NF2 clinic there. He will not recommend surgery unless he truly feels it's necessary. I've been on watch & wait since I first saw him almost 3 years ago. There are some excellent surgeons at MGH tho I'm sure none of them will guarantee no loss of hearing or facial paralysis - and I heard the surgeon Dr Brad Welling from Ohio is joining the team there at the beginning of March and the NF2 folks out there are devastated he's moving east. Dr Plotkin is a neuro-oncologist, Dr Welling is a neurotologist.

I discussed possible treatments when I saw Dr Plotkin in October as one of my meningiomas is steadily growing. He said he would feel reasonably comfortable recommending radiation for me because of my age (early 50s) but warned that malignancy even 20 years after treatment is a possibility. He said he is unlikely to recommend it for younger patients.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

tinabean925

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Re: radiation vs surgery for NF2
« Reply #4 on: February 09, 2014, 09:56:01 am »
Yes we will be seeing Dr Plotkin and Dr Barker at MGH. I hear they are the best! I also got some news that the original size estimate given to us from  the first and only brain MRI is incorrect. It is actually smaller, so we may  also have to wait and watch. We will  schedule our first appt at MGH this week probably for March. I'm feeling more hopeful now that our insurance is approved!

Susan A

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Re: radiation vs surgery for NF2
« Reply #5 on: February 09, 2014, 01:08:52 pm »
Excellent Tina - I'm really glad to hear your insurance approved the visit to Boston! I'm going to see Dr Plotkin in March too.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA