Question on tumor size - just diagnosed

[onelove6366]

My husband just got the diagnosis yesterday. He is picking up his films and report from the ENT with information for Dr. Fitzgerald at Washington Hospital Center this afternoon and we will call to schedule an appointment to work on getting the next step scheduled.

Dr. told him tumor was about the size of a nickel. That he will lose his hearing most likely and he will never regain hearing he has lost. He also said that the surgery needs to be done right away - not to wait.

Is a nickel sized tumor (2 cm?) small, medium or large?
Looks like we are looking at 4-6 weeks recovery after roughly a week in the hospital. My husband is a welder in a shop - lifting and things like that - will he not be able to lift any more than 20 pounds for months?
I am worried about the surgery etc., but also about the loss of income. I don't know how we are going to make it and not lose our house, etc. I am sure working with friends/family/employers will help iron out those details but I want to know if anyone has any answers to help ease my worries in the meantime!

Doctor told him the tumor has been growing probably for 20 years. My husband is tired and depressed a lot in my opinion. He gets headaches when he does lifting type of things. Will any of that improve after surgery?

It's a scary time.

[Chances3]

Hi Onelove6366,

Welcome to our little village.  You will hear shortly from members who have been involved with this site a lot longer then me, and will have plenty of good information.  My tumor was a little smaller than your husband's.  Each person recovers from this operation differently.  My recovery has taken a lot longer than I expected, I had my tumor removed 9 months ago.  My procedure was called a middle fossa.  They entered my head from above my ear, retracted my brain and removed the tumor.  The brain is never affected, it stays in it's covering called Dura Mater.  I chose this procedure because I was told it had the best odds for hearing preservation.  I have lost some hearing, but my operated side works.  Having said that, I guess everyone is different, and where your husband's tumor is might also have an impact on his hearing chances, but I wanted to inform you of this approach.

Let me give you some words of encouragement.  Please tell him never to give up, and to fight everyday, it will all work out.  Continue to use this site for resources and sharing, the people who are here really care.  If you guys need to vent, by all means you are welcome to do it here, there are plenty of us who understand what you might be going through.  I hope that helps, stay strong.

God Bless !!

[Cindyswart]

HI there, I know that this is very scary, but information is the key to keeping this in perspective. I was diagnosed in April of this year and my surgery is in 27 days. I was told a lot of the same information that your husband was. I saw 4 doctors until I got an appointment with a specialist in this type of tumor. He has recommended that I have my tumor removed to maintain the hearing that I have- 70% - in the affected side. You husband needs to see someone who specializes in Acoustic Neuroma, someone who has done plenty of these surgeries. My tumor is 2.5 CM and is pressing against my brain stem. I get a little dizzy and have some headaches, hearing is diminished on that side and my face on that side is numb. This is really a hard condition to deal with, on the outside you look just fine. But there can be a lot going on and that can make you feel alone , isolated and afraid. You will find plenty of support on this site as well as lots of good positive info to help through the process of learning and deciding your course of action. Look at all the options, no one option is right for every case, every case is unique and different. Good news is you have some time to get all the decisions made.
And by the way, I am an outside sales rep for a promotional marketing company. If I ain't selling, I ain't getting paid!! So i know what it means to worry about the down time at work. Take a deep breath and get all the info to make your decision before you panic on this. Good Bless and let us know how things are going.

[onelove6366]

Thanks to you both. He just wants it taken care of. I am the information guru who wants to know every little thing I can before moving ahead. It is good it's not cancer. We both agree on that. I hate to sound so harsh to be worrying about how the bills are going to get paid but it is me who handles all of that and with the economy it's been tough already and this will only make it worse. I know we will make it - just doing my job and worrying about every little aspect of everything.

My husband has lost most hearing in his right ear. He is a musician (hobby) and it is sad to think he probably won't hear music the same as he used to but he can still hear so all is not lost. The ENT said they would probably go in through the mastoid - behind his ear which I think is the 2nd occipital option. I know I am not spelling it all right - pretty soon I will have it all down I know.

I just don't know if that size tumor is considered large or not. I don't know if it is pressing against the brain stem - the dr. didn't say. He did say it is pressing against the facial nerve but there has been no noticeable facial movement impact.

My husband has headaches, shooting pains through his face, fatigue (which the doctor said is not related to the tumor - BS!). The depression I think is because he just doesn't seem to want to DO anything - he gets started and just has a really hard time getting the desire to finish. It has gotten worse in the last few years. I mean things he enjoys doing just as much as stuff that is a "chore" like cutting the grass. He spends a lot of time on the computer. He has had bouts of migraine like headaches with dizziness, etc. from time to time over many years but what brought it to light this time is that he got sick, feeling bad - fever - high fever that would sweat and break and than run again. Our GP said at first it was a virus but 2 days later we were back in the office because we thought it had to be a bad sinus infection or something. My husband was having what I can only call seizures after the fever broke - his whole body would shake almost violently - like when a person has hypothermia and shakes - this would last like 30 minutes and every muscle in his body hurt. The GP gave him antibiotics at our insistence but in hindsight I think they probably didn't help at all and that whatever episode he was having just ended. Anybody else have a similar experience?

[PaulW]

One piece of advise, if the tumour is less than 3cm, it's normally not immediately life threatening.
If its 2cm now and has been there for 20 years, chances are it will take another 10 to get to 3 cm
So spending a week or another month exploring and understanding your options is time well spent provided the tumour is not immediately life threatening.

Surgery is one option, Radiosurgery another, doing nothing and monitoring the tumour is another option.
Some institutions report that 70% of their patients can be left in Watch and Wait and do not need to be operated on.
Although the majority of this group will lose their hearing and have balance issues for many years, as nerve damage continues. Treatment by microsurgery or radiation can also cause you to lose your hearing and have balance issues.

I would not be rushing into surgery unless the tumour is large and life threatening.

I chose Cyberknife Radiosurgery.
I can't say work has been easy, but I was back at work as a CEO within a few hours of having Cyberknife.
I planned to spend two weeks off, sat down turned on the TV, got bored after a few hours and went back to doing stuff.

Today marks my 1 year anniversary of the Cyberknife Treatement, things are now pretty much totally back to normal.
Very happy with the result to date.

Explore your options, you probably have time, choose what is right for you. Don't let doctors push you towards one method if other options are available to you.

 

[Cindyswart]

On my journey to find out what was going on for me, I found out that I had been suffering with Epstein Barr ( chronic fatique) for over a year. that was one reason my stamina was so bad and why I felt like doing nothing! since being treated for that I am on the upside now and feeling much better. My neurologist actually thinks that is a link between the virus and the AN- feel like a guinea pig.   

[mertzirose]

dear onelove6366,
              my son was just diagnosed about a month ago with the tumor being 4.5 centimeters ,we have just about a week ago got news of his surgery date which will be on august 24th, i share your anxiety about the whole situation, my son is 22 years old and everyone says that he has his youth in his favor and should make a speedy recovery, it just seems like we have been constantly waiting,but i guess if the doctors thought it couldnt wait  ,it would be out by now, i have faith in them ,my son is going away on a little vacation with his friens next week, and i think and hope and pray it will do him a world of good to get away and take his mind off it for a little while, Maybe you and your husband could do the same ,even for a weekend before he gets surgery, it might help to not be thinking about it or be depressed,,spoil him ,pamper him ,make his favorite things, thats what im doing and will be doing for my sonup till the day he goes into surgery, anything i can do to make it a little easier on him. The doctor told us he too will lose his hearing,and maybe have some facial paralysis, ,but i say if that is all then we are blessed,because he can still hear out of the other ear perfectly. Have faith that all will go well,i truly believe in the power of prayer,yours and so many other who will be praying along with you as you go through this journey with your husband. Good luck !!! and God Bless!!!

[Jim Scott]

Hi ~

I'm sorry your husband has been found to have an acoustic neuroma but I think you'll both be glad you discovered the ANA website discussion forums.

Your concerns are certainly understandable and are the kind many AN patients have upon the diagnosis of an acoustic neuroma, so you are certainly not alone in your concerns.

To answer some of your pertinent questions: a 2 cm AN is considered medium. For comparison, my AN was 4.5 cm and was seriously compressing my brainstem so surgery was the only option.  The size and location of my AN made it imperative that it was performed quickly.  I was successfully operated on within two weeks of my diagnosis and, had a false cancer scare not intervened, it would have been performed sooner than that. 

From your description, your husbands symptoms are quite typical for an AN patient.  Unfortunately, recovery from AN surgery varies widely.  Although the typical recovery period is usually given as 6 weeks, that is just an average and cannot be taken as the absolute norm.  Obviously, some AN surgery patients have shorter recoveries and some need a lot more time.  You'll often see/hear the phrase 'it depends' when AN surgery recovery times are being discussed.  I know that isn't reassuring but it is realistic.

I would strongly suggest that you urge your husband to seek consultations with a variety of doctors that treat acoustic neuroma patients.  Irradiation may be a very viable option for him and although it carries it's own inherent risks, it is non-invasive (no cutting) and has a much faster recovery period.  In many cases, with radiation treatment, if he has decent hearing in the affected ear, that can be saved, at least for awhile.  I can't offer a medical opinion because I'm not a doctor, but after AN removal surgery pre-op symptoms usually disappear.  Mine did.  As for heavy lifting, that may well be an issue for some time, even permanently, so it has to be part of the picture when choosing a procedure to address the tumor.  Your husband may have to consider changing his job or moving to a position within his job description that does not involve heavy lifting.  Perhaps this can be worked out with his employer prior to having surgery, if surgery is his choice.  Not knowing every detail of his work situation and with the realization that I don't have all the answers to every question, I will defer these issues to you, your husband and those who may choose to offer you their insight. 

In any case, we hope you'll remain connected here and count on us for whatever information we can offer and, most of all, our full support to both you and your husband as you begin your AN journey that, I sincerely hope, will end up in a good place for you both.

Jim  

[mrmel]

Sorry to hear about your husband. First thing to remember, this will all work out and he will go on with a productive life. It will be hard for a while there are things to overcome and obstacles to be dealt with. The best thing i can say is do a lot of research and be strong for him through his surgery and in trun take care of yourself. Now you said a 2 cm tumor? Mine was 2.5 cm and was compressing my brainstem. Generally if the surgeons feel that the tumor is growing they want to remove it in a reasonable amont of time. I was told 14 years ago that mine was growing and probably started in puberty. I was 39 at the time. My surgery was 13.5 hours and i spent 4 days in the icu. I had to learn to walk again and my facial nerve snapped, which had to be regrafted, and it only came back 40%. I had a gold weight in my eyelid for 2 years after to help the eye lid close until some function came back. Fortunately we now have the Gamma Knife and Cyber knife and the side effects are less dramatic i am told. Your husband may not have all of the issues i did. As far as his hearing loss, that will most likely depend on how much damage there is to his hearing nerve at this point. What type of surgery is being done? I had microsurgery, translabrynth. They went in behind the ear, made a flap and core drilled the skull and then went in and did the surgery from there. Now adays they are using radiation and the gamma knife. Be sure you get a second  opinion if you do not know this doctor real well. There used to be a doctor at Massachusetts General named Dr. Robert Ojemann and he would look at your mri for $75.00 and give you his opinion, all you had to do was mail it to him and he would mail it back. Dr. Ojemann is a world renowned neuro surgeon. Be sure to be comfortable with how your surgeons are going to proceed, and ask plenty of questions. There could be anxiety, depression, fatigue and balance issues for years after. Ask these questions. As far as returning to work, he will. It will not be apparent until after his recovery and he returns if he will be able to do the same work as before. Most likely he will, with some adjustments and being kind to his mind and body. good luck and keep us posted. I would not think at 2 cm that the surgery needs to be done next week. MIne was 2.5 and i waited 6 months because my DAd was dieing and i had to bury him, but i would leave that up to the doctors. Keep us posted.
                        Mel

[leapyrtwins]

As Jim said, 2 cms is considered medium.

Lifting restrictions after surgery typically only last for 4-6 weeks.

Jan