38 y.o. moderate/severe hearing loss, balance & facial tingling

[TwistedSissta]

I am researching as much as possible without going crazy and being completely consumed (not easy). I keep seeing it mentioned on here as well as other sites that "Younger age is generally a factor for choosing surgery." Can anyone explain this to me? I consider myself to be fairly young but haven't seen what they consider young in this circumstance . . . I seem to be leaning towards surgery, but I am unsure as to why exactly. Cancer scares the heck out of me, maybe the unknown links between radiation and cancer are what I'm afraid of. But surgery is obviously scary too and when you compare the recovery between the 2 options, I am at a loss. Any info would be much appreciated! Thank you!  

[Echo]

I believe surgery is preferred for younger people because there are not a lot of statistics beyond 20 years for long term outcome from radiation.  That number may actually be closer to 25 years, but I'm not sure - hope others here can confirm.  Your neurosurgeon would be the best person to advise you of the age they determine as "younger".  I was 58 when I had my Gamma treatment so I'm not old, but definitely not on the younger side. 

Both surgery and radiation come with risk factors.  There really is no easy answer to provide for you.  Do your research, have more than one consult, make a list for each treatment available to you with the pros and cons that you can live with and follow your heart.  You will eventually know what is right for you. 

Best of luck - I know how tough this is for you, but it does get better!
Cathie

[sandyinwisconsin]

I'm 44 and had radiation 3 months ago. 
My tumor is the same size as yours. 

Trust me, I know the fears of radiation, but I went ahead anyway.
I asked my radiologist several times, "Am I too young?" and he said in the eyes of the medical field,
I'm not young.  I know you are several years behind me, so I can see your concern.
I did not want radiation either at first until I met with a radiatiogist who really really looked out for my best interest.
I even scheduled surgery twice and my surgeon cancelled the surgery after he saw my anxiety.   

If you have the financial freedom to go to House or any other good doctor, please do so.
If I could have gone to House, I definitely would have due to their reputation and volume of surgeries.
I'm sure they would get it out without any problems, and you may save some hearing if you have any left.

Sandy

sandyinwisconsin

[ASG]

I had a 2.9cm AN radiated (GK) last September at age 31.  I had about 5 consultations with a variety of specialists prior to making what at the time was an incredibly tough decision.  Like everybody, I heard a range of opinions depending on who I asked.  ENT's who assisted with surgery and had no radiation background flat out said I could not have radiation.  Well known surgeons (including one at House) said I could do both, but recommended surgery due to my young age and cited a lack of 30-40 year radiation outcome data as a reason.  However, surgeons noted that malignancy was probably very unlikely long term and even if it occurred, I'd likely survive.  Radiation specialists (Dr. Chang @ Stanford and Dr. Lunsford @ UPMC) said lifetime likelihood of malignancy was 1 in 1,000 to 1 in 10,000 or even 1 in 20,000.  Chang and Lunsford said long-long term data don't exist in part because malignancy is so incredibly rare studying it is not scientifically feasible.

Bottom line- there's no free lunch.  I still feel great and at peace about my decision- mostly because I did so much research, including talking to both surgeons and radiation docs, and took as much time as I needed to decide.  I strongly recommend sending your stuff to pro-surgery and pro-radiation docs and asking them your burning questions.  Otherwise you just get one side of the story. 

Adam

[Heresrose]

I was 45 when I had my surgery at House. I was given the same advice too young for radiation and  my tumor was too big to radiate. If I had had the choice at the time I would have gone with radiation. I was told they'd go in there and get it out and there was a 2% chance of facial paralysis. They were confident and cocky. I went into surgery, which I dreaded, thinking facial paralysis was not likely to happen. Like you, I had the facial tingling on and off.

When I woke from surgery with a paralyzed face I wished that i was dead. They left a strip of tumor to avoid severing my facial nerve. Three months later I started getting movement on the affected side but I have severe synkinesis which I struggle with on a daily basis. Am I happy I had the surgery? No. Recovering from that surgery was very difficult. Probably the most difficult experience of my life. My hearing and balance nerve were severed. I had to learn how to balance and walk again. I got the baha but that has not worked for me so I stopped wearing the hearing aid.

Now my tumor is growing again and this week I will undergo Cyberknife at Stanford with Dr. Chang. I feel good about my choice this time around.

There are risks with both options but I think my doctors downplayed the risks with microsurgery.  You have to decide what you can live with. I wish you the best in your research and decision making.

Rose

[joanna_an]

Hi,

I went with radiation and I am 31 years of age and my tumor is 1cm bigger than yours.. I went to see the surgeon and he looked at my scans and told me that it can be treated with radiation and actually referred me to one. I think it depends on the location of the tumor and if it is cystic or not. So let doctors have a look at the scans.. 
If you have the surgery and the surgeons leave a bit behind not to severe the facial nerve or the brainstem and that will be radiated you are still at risk of malignancy decades after.
If I was in your shoes and had access to the House I would do the surgery. I live in Australia tho. The surgeons in here are good but I don't think they have the track record that the House does..

Joanna.