New member seeks advice

[tinabean925]

Watch and wait may be best for some. For example my son is 17 with NF2 and no symptoms yet. He has many AN's and meningiomas in his brain and spine. Once surgery or radiation is performed (so I'm told) quality of life may never again be the same. Also if you have no symptoms why would you want to risk premature hearing loss or facial paralysis. I think those common side effects would be more scary than watching and waiting. Either way, this disease is extremely difficult to deal with. Basically its a "what if" scenario when it is so new with so few symptoms. And you cannot reverse whatever actions are taken. All around its nerve wrecking and stressful. Therapy is a great treatment!

FYI I was notified about this FREE RELAXATION TECHNIQUE STUDY for anyone interested. It can be done online as well as in person:

Are you feeling stressed?
The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting a research study to see if relaxation practice may be useful for adults with NF1, NF2, or schwannomatosis.
 
What does it involve?
 
8 group stress-reduction sessions led by Ana-Maria Vranceanu, PhD, a licensed Massachusetts General Hospital (MGH) psychologist You will be asked to fill out a questionnaire on the computer at the beginning, end, and 6 months after the sessions. All sessions will take place from your home, using Skype, a software program you can use with a computer and a webcam to have live video-conferences

Sessions are 1.5 hours long and held once a week
This study DOES NOT involve taking medication

Who can participate?
We are looking for people ages 18 and older who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.
 
What are the possible benefits?
 
If you participate in this research study, you will be taught relaxation exercises that you can continue to use after the study. There is no cost to participate in this study and your decision to participate will not affect your care at MGH.
 
How do I join?
If you would like to learn more about this research study, please contact the study coordinator, Emily Drewel, at 617-643-6036 or at edrewel@partners.org.

Thank you for considering our research study!

You will be helping us gather important information about a training that may help other patients in the future.
 


For questions or concerns, contact the study investigator: Dr. Ana-Maria Vranceanu, PhD, at (617) 643-7996 or avranceanu@partners.org

[rodneyd]

Hi Keep Smiling:

I agree with v357159 - W & W should be accompanied by periodic MRI's to keep track of tumor growth (or no growth).

You seem angry that your husbands condition was not diagnosed properly.  Since an AN is relatively rare (1 in 100,000 people) it seems likely that a lot of people with an AN will not be properly diagnosed.

From what I have read on this forum as well as in other literature, the onset of deafness in an ear may occur overnight.  Many people have reported waking up with a fullness in their ear, followed almost immediately by some or total deafness.  The fact that your husband lasted 27 months without being deaf may have been fortunate.
 
One statement I see from some surgeons is "watch and wait for what?"

In my case (.9 cm AN in left ear, diagnosed in October, 2013), I have had no deafness, just balance problems, which I can live with for now.  If I had surgery or radiation, there would be a good chance that I would lose all hearing in the AN ear.  So I asked myself a key question:  "Why would I go through a procedure that made me deaf in that ear?"   My answer is "I don't want to do that".  I would be happy to go 27 months without losing my hearing, because I would have been able to hear for that time frame and my quality of life would be better than being deaf in that ear.  So for me personally, I am happy to be on the W & W side.  If and when the AN affects my hearing (or the periodic MRI shows accelerated growth), then I will deal with it. 

[v357139]

Watch and wait is certainly an option for some.  If the tumor is not causing problems and not growing, then it can make a lot of sense.

[Cheryl R]

There is also a good chance with the small AN that mid fossa with a very experienced surgeon who does them that you might never lose hearing at all.        Not all surgeons do them.       My dr at Univ of Iowa does and does more than Mayos in Rochester.         One just does not know what the future does hold for you, if there could be sudden loss, if tumor will not grow, if one does the surgery and one does lose it with the surgery due to what the tumor might be doing to the nerve,                The surgery is only done for AN's under a certain size.   1.5cm I think.   Or the tumor is removed with hearing saved.               Not an easy decision.                                Cheryl R