Acoustic Neuroma 1.4 x1.1cm-CONFUSED

[jewells]

My husband has just found out a few weeks ago that they found a neuroma.  We were shocked!  The doctors have now sent him on Wednesday to get a balance and hearing test done so they can find out how close to the nerves the neuroma is.  I dont know where to start my husband is in shock we have 3 children and a business to run.  Worse thing is we dont know whose word to trust.  Because originally if it wasnt for me they would not even have found the neuroma if I didnt insist he get a CT scan because of his severe migraines. 
We have spoken to the surgeon briefly, but he said we will know more once the tests where done.  I am concerned because after reading some of the topics- I am worried is he going to be in bed for a long time.  Someone recommended a walking frame - why?  Also a headframe?
I am in Melbourne/Australia - most of the people on this site are in America - so I cant even ask about our particular surgeon.
My husband is at the moment taking it all in his stride - but I dont think he understands(not very english orientated) how important it is - or he is being strong for me.
Could anyone please give me a description after the operation - on how bad he will be and will have a headframe on.  Thanks I appreciate any comments.
Julie

[Larry]

Julie,

Relax, there is plenty of help available and you have logged onto a great site where you can get plenty of advice and support. I am in Sydney and have had an an removed 3.5 years ago (in Sydney). I will email you separately with some contact details.

Larry

[Boppie]

If he is having a surgical removal of the AN I don't think he'd have a head frame or walking frame (never heard of it) to move around in.  Judging from the size of the neuroma, it is small enough to treat well with one of the radiology approaches.  So, maybe you'll get more information that will put your mind at ease.  He can be back to work in his business in a reasonable time with surgery or radiology.  Keep posting.

[Kilroy1976]

Jewells:

I think you'll find that the period between diagnosis and treatment is one of the hardest times of the whole situation. You might find doctors that give you very little information, or worse, they'll give you misinformation just to tell you something/anything. I don't think they're bad doctors, I just think that the doctor that typically breaks the news to the patient is often out of his/her league. Just try to stay calm, and you should eventually find a doctor with the proper training that you feel you can trust.

The headframe that you've heard about is used with most forms of radiation surgery. It is attached to the patient's head and the frame is secured to a table. When using radiation on a brain tumor, accuracy and precision are crucial and the frame prevents the head from moving during the procedure. The frame will be attached and removed on the same day. I'm afraid I've never heard of a walking frame either...

This board is a wonderful resource and you've definitely come to the right place. The people here will do all they can to assist you and your husband in this difficult time. Your doctor (or you) seems to have identified the neuroma fairly early and you have options. You should have every reason to think that your husband will do just fine. Good luck!

[Kathleen_Mc]

Jewells: Certainly finding out one (of one's spouce) has a "brain tumor" is likely to cause a lot of anxiety and justifiably so but try to stay calm, many people world wide have had this treated without any terrible lasting side effects, and some with no side effects at all, and even if they do have side effects from the treatment they are able to return to living productive lives as they were before. I do not know anything about a "walking frame" and I had surgery in the traditional method so I did not have a "head frame" (I think you're referring to the one used to position the patient during the radiation treatment). The best weapons the two of you have against this is knowledge, a trustworthy doctor and each other. Search the web as best you can and ask a lot of questions of the doctor's you will see along this journey.
Kathleen

[SKT]

Julie

There is absolutley no need to panic.  I know it's a shock at first.  This site is fantastic, you will get such great information from here. I also am from Australia - Adelaide.  I did alot of research to discover who are the best surgeons in the world for this type of microsurgery.  I discovered that the head of neurosurgery at the Royal Melbourne Hospital is an exceptional neurosurgeon. I made enquries of  many sources and received recommendations for this surgeon from medical practitioners both in Australia and in the United States. I travelled to Melbourne for my surgery.  If your husband opts for surgery, you are very lucky as you have one of the best surgeons in the world close to you.

I will email you separately.

[becknell]

Julie — I know it's hard to do, but at this point, take it a day at a time. My husband also had an AN, his was much larger, 3.5 cm, and he had surgery in August and is doing great. We have 2 children and he is in sales and works on commission, so I understand your concerns. After his surgery, the first week was the worst, after that he started to feel better and he went back to work 4 weeks after the surgery. No serious side effects. But you will find that recovery and side effects vary greatly. However, the vast majority of people return to their normal lives and are able to work. My husband also tried to pretend that the AN wasn't any big deal. I have chatted with other wives about dealing with the whole thing and we offer each other support. So if you would like to chat, send me a note, be glad to help. Jennifer

[Cheryl R]

 Ã‚ Julie.   Is what you referred to as a walking frame the same thing as what we call in the US a walker and used to help one walk when one has unsteady walking?              Some people may have to use one for a short time  but I would not say it is the norm.           One may read stories of people having great difficulties on this site but most people dio well and post a short time and then are back to their normal life.           How one does post op if that is the route one chooses can vary a great deal.            One may have some dizziness or a unbalanced spacy feel which is different than the dizziness.               I was never dizzy at all.but most have the spacy feel, which I did have.             One is encouraged to be up and moving to help recover from this.            Part of this will depend on how the tumor and it's location has affected him already.   If it is already affecting the balance then the brain starts to compensate for this on the other side.           One may be tired for a period of time and that also varies.       If one has surgery than the most important part is having a very experienced surgeon.              Most do end up with hearing loss and it is annoying but one does adjust in time.
 Ã‚               Good luck to you both.                         Cheryl R.