5 months after radiation

[sarahinPA]

Hello,
My name is Sarah I am 24 years old and was diagnosed with acoustic neuroma 3 days before christmas 2007. My tumor was 2.2 cm, and i recieved Gamma Knife treatment in mid January by Dr. Douglas Kondziolka at UPMC in Pittsburgh. I am new to the AN website and wish to be more involved. My only symptom was facial numbness which i let go for nearly 6 months before mentioning it to my doctor. I have so many question regarding insurance, post treatment, and long term effects of the radiation treatment.

I have waited to join this forum because i have been scared of what i might read or hear. I thought i could get through this on my own by getting the treatment and having my tumor just go away...i was wrong and i need support from those who have experienced this too. I live outside of Pittsburgh and would like to go to support groups, but cant make it there often enough.

my family supports me, but i feel they have put my medical condition aside and they feel i am better now, but dont understand the emotional burden it has caused me. i worry everyday that my treatment hasnt worked and am becoming overwhelmed with the worry. I recieve my 6 month MRI July 1st and it feels like an enternity away.

i just need to know that there are other people out there that are scared too, i need to know that i am not the only one who worries about this. I want people to know this exists so that they arnt afraid to tell their doctor too.

thank you for reading and listening..

sarah

[Tumbleweed]

Welcome to our forum, Sarah. We are all glad you have joined us, although we wish you didn't have an AN, too.

I think you should take great comfort in the fact that you had GK at UPMC. They have performed GK longer than any other facility in the U.S., so you were/are in the best hands. Also know that the success rate for treating ANs with GK is in the high 90s percentile. If I'm not mistaken, UPMC's success rate is roughly 98%. There are exceptions, but the odds are overwhelming that your tumor won't regrow.

I had CK, which is very similar to GK. The first six months were the roughest for me, after which I began to notice significant improvement. Now at 10 months post-treatment, I feel better than I did before getting CK. Hopefully you will experience a similarly accelerated recovery soon, if you haven't begun to do so already.

As for long-term side effects of radiosurgery, these are usually limited to partial or complete hearing loss and, rarely, degraded balance. In the vast majority of cases, the balance issues are temporary. Since you didn't mention any hearing problems, I'll assume you don't have any on your AN side. If that's true, you are very likely to retain your hearing over the long term at roughly the same level it was at before getting treated . The better your hearing is going into treatment, the better-preserved it will be afterwards.

Nobody understands better what it's like -- both physically and emotionally -- to live with an AN like we forumites. We know what you're going through. When you become fearful, try to remember that you chose a statistically very successful type of treatment and one of the world's leading medical facilities providing GK. You are going to be okay.

Sincerely,
Tumbleweed

[suboo73]

Nobody understands better what it's like -- both physically and emotionally -- to live with an AN like we forumites. We know what you're going through. When you become fearful, try to remember that you chose a statistically very successful type of treatment and one of the world's leading medical facilities providing GK. You are going to be okay.

Sincerely,
Tumbleweed

Hi Sara from PA!  I am from PA originally, too but near Philadelphia.
I have not had any treatments yet, but it sounds like you went to some of the best!

So, i will follow your story, because if i need treatment, i will probably choose radiation, too.
You have youth on your side, so stay strong emotionally and post whenever you need to.

We are all here for you!

Sincerely,
Sue

[CTPatient]

Hi Sarah,
Welcome to the group.  I recently joined myself and can tel you everyone on this forum is very supportive.
Sorry you have an AN and totally understand the burden of worry.  I'm in the progress of determining treatment.

Stay positive and know that this group is here to help you, they've helped me so much within the last week.

Sally

[Kate B]

Hello,
My name is Sarah I am 24 years old and was diagnosed with acoustic neuroma 3 days before christmas 2007. My tumor was 2.2 cm, and i recieved Gamma Knife treatment in mid January by Dr. Douglas Kondziolka at UPMC in Pittsburgh. ... but (my family)dont understand the emotional burden it has caused me. i worry everyday that my treatment hasnt worked and am becoming overwhelmed with the worry. I recieve my 6 month MRI July 1st and it feels like an enternity away.

i just need to know that there are other people out there that are scared too, i need to know that i am not the only one who worries about this. I want people to know this exists so that they arnt afraid to tell their doctor too.

sarah

Hi Sarah,
I am glad you joined the forum.  Being diagnosed with a brain tumor and then wondering whether or not it has worked is a heavy burden. Your wondering if the treatment working is normal.  The probability of whether it worked based on UPMC statistics is that it is working.  Dr. Kondziolka and UPMC are a well known facility in the country for treating AN.  I live in Chicago and a surgeon told me that should I choose GK, I should travel to UPMC. 

July 1st seems far away right now because it is 5 or 6 weeks away.  Just think you've gone through 4 1/2 months already. The closer you get the more the anticipation builds.

Are you having symptoms that make you worry?  I remember thinking that anytime I had a twitch or anything in my head that it was my AN. 

All the best and keep sharing..Lots on this forum have great insight.

Kate

[sarahinPA]

Thank you all for your supportive comments. It made the tears come, thank you very much. It is reassuring to hear everyons say such wonderful things about UPMC and Dr. Kondziolka. I feel fortunate to have him working with me.

As for hearing issues, pre treatment i was told i had lost very little hearing, only in high pitched noises which i most likely would not have noticed in my day to day life. about 2 or 3 weeks ago i noticed i had lost almost all of my hearing on my AN side; i called the doctor and they put me on a weeks dose of steroids, and after a few days my hearing did come back alot, but i developed tittunis ( ringing in my ear) that i think was when i really began to feel overwhelmed with this. The ringing has lessened in the last week, but still comes and goes with certain pitches around me, and especially when i watch TV. i am afraid that it will come back if i go to a concert or sporting event, or anything with loud noise ( which is one of my favorite things to do) i guess i will have to live with it and accept what i have been given.

my balance is slightly off, only really noticed when i do yoga, but i believe it is helping me concentrate and become in tune wuth my body. When i get tired i get more off balance and my face begins to droop slightly. i struggle with self confidence isssues to begin with, and not i have a small scar on my face ( from the halo put on during GK) and my droopy face in pictures. its very hard to see a change in my face at such a young age.

thank you again for all of your support, I will be checking back frequently

thank you and god bless..

[leapyrtwins]

Hi, Sarah -

although I didn't choose radiation to treat my AN, I do remember the scaried feeling you mention.

I also know what you mean about thinking you could get through this on your own.

The Forum is a wonderful place for support, as you can tell 

I'm glad you've joined us.  Welcome.

Jan

[sgerrard]

Hi Sarah,

Welcome to the forum, and life post radiation.

I agree with Tumbleweed, you did well going to Dr. Kondziolka at UPMC. I'm also glad to hear that steroids helped bring back your hearing recently. Swelling is quite common after radiation, and that is one of the things it can do. Hopefully when it all settles down you will still have most of your hearing intact.

I am 18 months post treatment, and still have tinnitus (the ringing in the ears); many AN patients have it for the rest of their life. For me it is not bad, just a little extra background sound. I am used to it now and it rarely bothers me. I also have a small balance deficit, mainly noticeable when turning corners or going down steps. Watch out for door jambs when you are walking around the house!

Don't be alarmed if the next MRI shows a larger AN; it is probably just swelling. My first six months were the hardest, but it really does get better with time. Take care,

Steve

[MAlegant]

Hi Sarah,
I didn't have radiation so I can't really speak to those issues, but even though I had surgery I still worry about regrowth.  I know my odds are good, but what were the odds I'd get a brain tumor in the first place?

I understand this is hard for you and I'm sorry you have to go through it.  The good news is you'll probably recover eventually even if it doesn't seem so.  I'm 10 months post-op and though I'm still dealing with side-effects, I've really begun to feel more like myself.  There are some things that I may have to live with but I'm okay with that.

Don't beat yourself up over ignoring your symptoms.  Facial numbness (I had this as well as a presenting symptom) seems so harmless.  No wonder you waited.  Mine would come and go, along with pain, and I was not alarmed by it.  Thankfully my doctor was and ordered an MRI.

Hang in there and believe that all will heal and be well.  Try and keep a peaceful heart.

Best.
Marci

[Jim Scott]

Hello Sarah, and welcome ~

As you now realize, undergoing radiation to destroy your tumor's DNA is not necessarily a one-shot deal, like having a gall bladder removed, where the pain or symptoms cease and you go on with your life, eventually forgetting about the AN.  Because of it's location the AN is problematic.  As Steve correctly noted, post-radiation swelling is very common.  Fortunately, steroids usually handle the effects, such as your temporary loss of hearing.  Frankly, although you had a fine doctor, it would have been beneficial to you to have been told about some of the possible after-effects of the Gamma Knife treatment you received.  However, there is no need to live in fear and dread your upcoming MRI scan.  GK treatment is usually very effective and many, many AN patients have had fine results from it over the years.  Many of them post on these forums. 

The emotional ramifications of the AN diagnosis, treatment and any after-effects are almost always quite burdensome and, at 24, you may not have the resources and life experience to successfully deal with all that.  These forums are meant to help give you information and especially, support.  We all have (or had) acoustic neuromas, we're a very diverse group in age, occupation, geographic location, etc and most of all, we want to help you deal with your AN-related issues.  Please consider these forums a resource and the folks hereas your friends - because we are. 

Jim

[mk]

Hi Sarah,

I am glad you decided to post, you will find a lot of support here.

When I read your post it seemed to me that I could have written it myself when I was about 2-3 monts post-GK. I was totally depressed and in a state of  shock, questionning my decision and fearing that something terrible would happen, even though my treatment had been totally uneventful. This continued until I received my 3 month post-GK MRI, which revealed that there was no swelling and the AN was stable (by the way,  I am surprised that you didn't have a 3 month MRI, I thought it is pretty much standard procedure for the medium to large ANs). I realized at that point that instead of beeing fearful and depressed I should rather be grateful that everything was going so well and I started to learn how to take it one day at a time. I also reached out more to the forum (which I was following remotely previously) and found that sharing our experiences, fears, frustrations etc. is very therapeutic. You will find the same too.

Numbness was the presenting symptom  for me as well, and I have also experienced not one but two episodes of hearing loss, before and after GK, which was recovered back to the previous levels with prednisone. These episodes don't necessrily mean that you have swelling (this was confirmed in my case with my subsequent MRIs). I also had tinnitus during these episodes, but now after 6 months it has almost disappeared. And yes, the odd twitches and odd sensations happen too occasionally, usually associated with stress and fatigue. So hang in there, the first 6 months can be very finicky, but overall it seems that you are doing great. I am sure your 6 month MRI will confirm this.

As you saw from the other answers that you received, we have all gone through the same range of emotions and understand the uncertainety and fear that you are feeling  and can totally understand and sympathize. So you have found a home here, and don't hesitate to come here for support.

All the best,
Marianna