Scared to death

[LPenink]

Hi -- this is my first post and visit to this site.  I was diagnosed with an AN a year and a bit ago.  It was 5 mm and is now 6 mm.  I am already deaf in my ear and experiencing facial numbness, balance problems, and ear pain.  My doctor is the best and I'm grateful to have him here in Chicago where I live.  People around me are pretty supportive but just don't know what to say.  So I've come here to you guys because I'm guessing I might get more support here.  I'm due to have the Gamma Knife surgery in a few weeks.  I'm so very scared.  I cry a lot.  Could really use some reassurance.  Is anyone out there who can help?  Thank you in advance.

[debora]

Hi Lpenink,

I am sorry you had to join this group, but you will find everyone one on this site will want to help you.  I was so scared and depressed when I first joined and after months it has gotten better.  I laugh at what some people say and also cry because of the pain some go through.  I find myself grateful to have found this site, and really appreciate being a part of it until I realize I really don't want to be a person with a AN tumor, but then I would have never had a reason to belong to such a great group of people.  Illness can and does bring out the best in people.  That being said I will try to help you the best I can, there are others who are greatly informed and will also help.
I had lost all hearing in my tumor ear and had extreme tinnitius, had radiation done by the Novalis unit in SD by a team of Doctors. They suggested a one time dose of radaition because the hearing was gone.  Because of the one dose they didn't use a mask they screwed a halo to my head and then bolted that to the table.  The treatment was fast and as I said only one time so I didn't have to keep going back ( I was very grateful for that).  I had a couple of valiums in me so I slept all day and night.  If they do  screw a halo to your head you have to sleep in a recliner for about a week because of swelling.  I took the next day off just because I thought I would be nice to my self, but I really didn't need to, I felt fine.  I did have some exhaustion for awhile. My tinnitius went away completely, what a relief!  I had MAJOR problems with balance 4 months later, am still having problems but not as severe as before, I can work, drive and still go out and do things.  I had the procedure done Oct 2004.

What type of machine are they using on you? Did you get a second opinion?  Are they doing a single dose, will you have a halo, how many gy's will they do?  I did hear that if they do fragmented radiation that normal tissue surrounding the tumor has less chance of being damaged.  The blessing is that your tumor is small and you are fortunate they found it early.
We are all here for you, take care.

Deb

[David707]

Hi, LPenink,

I had a 2.5cm AN removed last January and is doing very well. 

Since I chose to have surgery instead of radiation, I don't have any personal experience about radiation to share with you to ease your fear.  I do know however, there are plenty of friends here who are very knowledgeable and willing to share their experience with you. 

You will also find plenty of support in this forum.  Sometimes, people like myself, do not visit the forum everyday or don't read every post.  Please keep bring up your questions and needs if you don't get timely response.

In the next few weeks, you will frequently be in my thoughts and prayers.  Onething I have been most grateful is the peaceful mind I had through the whole deal.  I wish you the same thing. 

David

[JHager]

Hello!

Welcome to the club!  (So to speak.)  The more you look around, the more you'll find success stories from people who had radiation surgery - with the size of your tumor, it sounds like your making a great choice!

I had translab surgery for a 3cm AN on November 7.  Like you, I was already deaf in that ear (at least, almost deaf.)  I had some facial numbness after surgery, but that has almost completely cleared up.  The good news for you is this: with radiation, your symptoms should not worsen, and in fact you may see some improvement!  That would be a great thing!

Good luck, and keep the faith!  You'll be in our prayers!

Josh

[FlyersFan68]

LPenink,
    I also had a small AN little over 1cm. and had all the same symptoms you have too. I lost all speech recognition in the AN ear prior to translab surgery. Among others, You and I are proof that small AN's may be even more troublesome than the larger ones. I guess sooner or later we all need to decide on some form of treatment. Good Luck with your radiation! I wish I can offer more insight but simply cannot since I have never experienced radiation. Although, I would like to echo what David said in finding that peace one day. It took me quite some time to get there and drove me crazy at times but getting there is important, challenging and rewarding. I have come to terms with the single sided deafness, tinnitus, surgery and count my blessings that this is all I was dealt. My balance is good and the ear pain gone. One thing everyone on this board has in common is the "why me" syndrome. Why did I even get this to begin with?? Why am I deciding on treatments I want no part of?? Did I make the right choice?? This should get easier over time and some days will be better than others but after treatment your life will resume and you will find a new happiness and appreciation for life! Happy New Year To You & To All My ANA Friends!!

[LPenink]

Hi Lpenink,

I am sorry you had to join this group, but you will find everyone one on this site will want to help you.  I was so scared and depressed when I first joined and after months it has gotten better.  I laugh at what some people say and also cry because of the pain some go through.  I find myself grateful to have found this site, and really appreciate being a part of it until I realize I really don't want to be a person with a AN tumor, but then I would have never had a reason to belong to such a great group of people.  Illness can and does bring out the best in people.  That being said I will try to help you the best I can, there are others who are greatly informed and will also help.
I had lost all hearing in my tumor ear and had extreme tinnitius, had radiation done by the Novalis unit in SD by a team of Doctors. They suggested a one time dose of radaition because the hearing was gone.  Because of the one dose they didn't use a mask they screwed a halo to my head and then bolted that to the table.  The treatment was fast and as I said only one time so I didn't have to keep going back ( I was very grateful for that).  I had a couple of valiums in me so I slept all day and night.  If they do  screw a halo to your head you have to sleep in a recliner for about a week because of swelling.  I took the next day off just because I thought I would be nice to my self, but I really didn't need to, I felt fine.  I did have some exhaustion for awhile. My tinnitius went away completely, what a relief!  I had MAJOR problems with balance 4 months later, am still having problems but not as severe as before, I can work, drive and still go out and do things.  I had the procedure done Oct 2004.

What type of machine are they using on you? Did you get a second opinion?  Are they doing a single dose, will you have a halo, how many gy's will they do?  I did hear that if they do fragmented radiation that normal tissue surrounding the tumor has less chance of being damaged.  The blessing is that your tumor is small and you are fortunate they found it early.
We are all here for you, take care.

Deb

Thank you to all of you for your remarks and help.  I'm already starting to feel a little better.  You asked me some questions that I'm not sure I know the answer to.  Fragmented or not?  Not sure.  It is the Gamma Knife Surgery that Dr. Cerullo invented 30 years ago (he also happens to be my doctor and is the #1 in this field in Illinois).  Has anyone lost their hair from the radiation treatment?  He said that might happen.  I didnt' know about sleeping in a recliner for a week but that's no problem.  I do that now! :-)  I will have the halo and did get a second opinion.  He said there might be some discomfort where they "nail" in the screws to my skull.  This scares me a bit.  Okay,a lot.  :-)  I understand there are 201 lasers all computerized and pointed at my tumor at one time to "kill it."  It will lay dormant and has only a 5% chance of regrowth.  I will, however, stay deaf in that ear, he said.  And he said I do run the risk of some facial problems.  Balance wasn't discussed at all -- although I am falling over alot and he knows this.  Stupid, small little **#**&@&^ tumor!  :-)  Something this small could be so icky.  I'm also a two-time breast cancer survivor (had bilateral mastectomies in 1996).  I've actually faced a lot of illness but this one -- I don't know.  Something about being inside my head just freaks me out.  I asked the doctor if they could zap my "weight" gene while they were at it (teehee) but alas, all I'll ever hear is diet and exercise, diet and exercise...yuck.  The worst two words in the dictionary besides acoustic neuroma.

Thanks again everyone.  You guys are truly wonderful.  I appreciate your openness and kindness.  Hugs, LP

[comphibron]

I never had the gamma knife but opted for surgery to remove a 2.1 cm AN.I had already lost my hearing as the tumor was on the auditory nerve.I had tinnitus, some dizziness and imbalance.From what I understand the Gamma Knife is painless and takes a few treatments.Dont know but you will be alright.

[Snowball]

I just had to reply.  Dr. Cerullo is my doctor too.  He did surgery and GK on me (very large tumor).  The GK isn't as bad as it sounds.  They did put the halo on - it screws in, doesn't nail - but they numb the area with a shot first.  The halo is very heavy, it's hard to move your head around when it's on.  The halo attached to the inside of the machine.  It sort of felt like your head was hanging in the opening.  I didn't have to sleep in a recliner afterwards.  They did warn me when they took the halo off that sometimes people's heads will gush blood, thankfully I didn't have that. They take the halo off as soon as they are done with the procedure.   I stayed that night in the hospital, and went home the next morning.  Had little scabs on my head (four places) from the halo for about a week, but that was it.  There really is no pain involved.  In fact, now that I think about it, they did place an IV and attached a pump with pain meds and gave me a button that I could push in case I needed any pain medication (I never did push it).   Good luck, I'm sure it will go well for you.

Kay

[debora]

LP,

I forgot to mention a few things on my last post.  I have never lost hair from the radiation, had no signs of having radiation on my skin or anything.  People tell me I look normal and wouldn't even know I had a brain tumor (except for my walk at times).
When they screw the halo into your head they numb the area when the pins go in.  You should not feel a thing and if you do make them stop until the drug kicks in, my neurosurgeon was impatient and started screwing it in right away, it was extremely painful.  Now that I know better I would never stand for that again.  The only thing that should smart is when they inject the numbing drug. When they took the halo off they said to be careful because the sites could bleed easily, I went to brush the hair away from my face and bumped one site and it started to bleed pretty fast, they put pressure on and it stopped right away, no big deal. I washed my hair the next day.   I was home in abut 5 hours, start to finish.  I was also pretty tired for awhile.

The one thing they told me to bring in was a squishy neck pillow to stuff around your neck under the frame, the halo is heavy and you will get tired trying to hold your head up.  Just make sure it's real squishy or it won't fit under the frame.

Write if you have any more questions, I have photos which they take when they do this procedure, if you want I will email them to you. 

Take care.  Deb

[targa72e]

Hi,

I also have a small tumor; I was diagnosed 6 moths ago. Tumor was found as a result of sudden hearing loss. Original diagnosis was 4mmx4mm. I had 80db loss on my first visit, over the last 6th months my hearing gotten better but I developed other symptoms. I got tinnitus and starting in sept my head started hurting on the AN side (this has actually gotten better in the last two weeks). I just had my 6th month MRI and the tumor shows 5mmx5mm. Since the repeat accuracy of reading the MRI is +/- 1-2mm I don’t know if the tumor has actually grown or is the same size. It is amazing to me when I read of people with large tumors who had no symptoms when my little tumor has made it self very well known. I can understand were you are coming from, the last 6th months have not been fun, I was very scared with the not knowing how fast the tumor was growing and when I would have to make a decision on treatment. Knowing now that I have the standard slow growing tumor I will probably wait until I have more problems or the tumor is closer to 8mm (I hope this is a long way off). At least for now I do not have any facial or major balance problems. My two main hobbies are racing cars and skiing. I think that if I start to have balance problems these activities will not be fun anymore. One thing that I have read over and over that was very true for me is that with a AN diagnosis you really take a look at what’s important in your life. Best of luck with your treatment.

john

[kat]

  Dear Lpenink

Hi Im Kat I had GK 8 months ago for a 2.2cm AN  in Sheffield here in UK . In my case the procedure was really nothing at
all to worry about . The worst bit was the fiitting of the frame mainly since I am a wimp with needles but it was quickly over and after I did not feel a thing . For the zap I was asked if I wanted to listen to some music which helped to pass the time
and after I had a very minor headache which was sorted with just two paracetamol and a rest in my hospital room . The next day I was allowed to go home and apart from a feeling like jet lag for a few days I was able to carry on as normal and have done up till now . I had some headpain 7 months after the GK and my GP prescribed some anti inflammatory pain
killers and I also had an MRI scan to see what was going on . The tumour has not grown at all and the pains were something that may happena as a result of the GK . I have been totally pain free now for 3 weeks and have not taken any
medication . I am just getting on with my life as usual and still feel quite confident that GK was the right choice for  me and with record of 97 % success the odds are pretty good . I am planning a sailing holiday since my GK specialist could not see
any reason why I should not go .  The biggest challenge will be getting travel insurance but that is another story.
Take care and try not to worry .

Best regards Kat 

[LPenink]

I just had to reply.  Dr. Cerullo is my doctor too.  He did surgery and GK on me (very large tumor).  The GK isn't as bad as it sounds.  They did put the halo on - it screws in, doesn't nail - but they numb the area with a shot first.  The halo is very heavy, it's hard to move your head around when it's on.  The halo attached to the inside of the machine.  It sort of felt like your head was hanging in the opening.  I didn't have to sleep in a recliner afterwards.  They did warn me when they took the halo off that sometimes people's heads will gush blood, thankfully I didn't have that. They take the halo off as soon as they are done with the procedure.   I stayed that night in the hospital, and went home the next morning.  Had little scabs on my head (four places) from the halo for about a week, but that was it.  There really is no pain involved.  In fact, now that I think about it, they did place an IV and attached a pump with pain meds and gave me a button that I could push in case I needed any pain medication (I never did push it).   Good luck, I'm sure it will go well for you.

Kay

Hi Kay -- thank you for writing -- thank you ALL for writing me.  I can't tell you how much better you have made me feel.  Dr. Cerullo is really the best, isn't he?  I'm glad your GK went well and everyone else seems to have had a pretty positive experience for having something so icky occur.  I wish I knew why I got such a dumb tumor in the first place.  Oh well.  I'm not sure when I'm scheduled yet to have the procedure -- they haven't called yet. I will keep you all informed.  You guys are really terrific.  Joining this group has been a really supportive, great time for me -- I was so scared and now I feel like I have "friends" and people who care who can give me some personal advice and experience.  God Bless you all!

[jamie]

Hi Lpenink

I'm sure you'll do just fine. I didn't have gamma knife, I had CyberKnife so I can't speak for the whle experience, but they are similar. My treatment was a breeze, I had a headache after treatment, but ibuprofen took care of it. You most likely won't lose any hair from gamma knife, it's more likely with FSR. I lost a few dime sized patches because I had three treatments, and my follicles are very sensitive I guess, but three months later it's all grown back. Good luck and keep us updated.

[shoegirl]

Hi Lpenik,

I too - like Jamie - had Cyberknife.  I just had it about 3 weeks ago.  The treatments are very easy, and I feel great.  I was a little dizzy for a few days and vomited a few times but that all pasted very quickly.  Sometimes I get a little tired but other than that I feel really good!  Everyone if different and I am sure you will do great!  The hardest part is deciding on the type of treatment.  Hopefully, after your GK is over will find a new peace with all of this.  I wish you all the best!  Please let us know how everything goes! 

Best Wishes,
Suzanne

[Goh]

Hi Lpenink,

              This is the site for you.  The people here are great and will be able to answer all your questions.  Anyway, I presumed you have done all your research and sought proper advice from your doctor.  Once you make up your mind stick you and always look forward.

               I had gamma knife treatment in June 2004 after much deliberation and reserach.  Everything went smoothly as far as the treatment was concerned.  The headframe was fixed with 4 pins after numbing the area.  The first attempt to fix the frame was unsuccessful as I almost freaked out.  So be prepared for it.  On hindsight, it was no big deal except for some discomfort.  After fixing the headframe (at the 2nd attempt) another MRI scan was done before the actual treatment.  I was told that this latest MRI scan was required to enable the doctors to prepare a precise treatment plan with the aid of computers.  I was then led into the treatment room where I was told to lie down.  All in all it took about 20 to 30 mins.  I did not experience any pains nor other forms of discomfort except for the headframe.  I was allowed to leave the hospital after a short rest.

               Thereafter I rested at home for slightly more than a week.  For the initial few days, I suffered from severe nausea and vomitted often.  I also suffered from pains around the area where the pins were attached.  Other than these, I was soon back to work.

               Fortunately for me, I did not encounter any side effects.  My hearing loss pre and post treatment is the same. An MRI scan done in June 2005 showed no further growth and my next scan is due in June this year.     

               I hope you have a successful treatment with no complications thereafter.   Wishing you all the best from all of us!


Chuan from Singapore