newly diagnosed an

[4cm in Pacific Northwest]

JT,


Quoting you
"Can someone tell me expect after surgeries"


GO here
http://anausa.org/forum/index.php?topic=5319.msg47835#msg47835

4

[JTomes]

I had NO idea it would be so involved. I honestly don"t think I can do this.

JT

[leapyrtwins]

JT -

you'll be surprised what you can do.  I'm sure this is all so overwhelming for you.  I only had one tumor and it was overwhelming for me; I'd imagine with 2 tumors, it's at least doubly overwhelming.  Please know that the members of this forum are here for you and want to help you any way we can.

I agree with some of the others that you should consult with someone experienced in NF2. 

Jan

 

[JTomes]

I have checked out the Neuro surgeon. He is VERY well versed in what I have. I just don"t know if I can handle this or not. I think I'll just wait it out and see what happens. I really don't see why I need to have the CT scans done. I have bot had any other problems.

JT

[JTomes]

2 years ago I had my knee replaced and I prety much did that on my own. I was back at work in a little moe than 5 weeks. I know how hard that was, and this is MUCH worse than that. I just don't think that I am mentally strong enough to handle something like this. From what I have ead, many people live with AN's and do just fine, so I think I'll just wait and see what happens.

JT

[4cm in Pacific Northwest]

JT,

You are just overwhelmed. (ok ok “totallyâ€? overwhelmed) We have all been there and understand.  It is daunting at first but the more you know the more empowered you will feel.

It is good you are also going to talk to the neurosurgeon.

Read up as much as you can so you can go in with a good list of questions to ask.

There is a forum just for Nf2 if you want to ask questions there.

Over the internet, from a stranger who has been there, – here is a big HUG.

Be strong. Once you get past the “I can’t believe this is happening to me!� stage … you will understand the need to “Keep moving forward.�

Hang in there.

4

P.S. Last February I too had major surgery and it took me 8+ weeks to recover to normalcy (whatever that is) … but something still was not right… so I had an MRI. I got through 2 major surgeries in 6 months. I got through surgery #1 on my own pretty much – but for surgery #2 I was surprised and how much others helped out. It was as if surgery #1 was the dress rehearsal for what was coming up. For the surgery #2 both my family and friends rose to the occasion … i.e. they were much better and supportive the second time.

P.S. RE Wait and Watch – well I functioned fairly well with a 4cm – but if we waited too much longer (some ventricles were partly closed from the pressure) … we would have only discovered my AN through an autopsy report. Because yours are bilateral you need to start educating yourself on your options (i.e. you cannot sweep this under the rug too long)

[whity4d]

JT,

I am very concerned with your situation and the money situation doesn't make it any easier. We are in an HMO but went to Dr Hitzelberger because he is the best. I had to pay to bring him in to Kaiser to do the surgery. When I asked how much it wuld cost he consulted with Dr. Brackman and came back with a figure of $10,000, 5 for him and 5 for Dr Brackman. Then he told me something that brought me to tears. He told me that if I could not afford it he would wave his fee and I would only have to pay DR. Brackman. He told me he was a good cristian man and would never refuse anyone  his god give talents just because they did not have the money. I told him that I could afford his fee but to pass it along to the next person in need of his service that may not have the money. I know he travels all over the country even Canada to do NF2's. I can't speak for him as to his fee but I know he is the finest doctor and man I have ever met. Fate may have brought the two  of us together on this forum so I could pass along this info to you. Call him, Call him Call him. He will have you send a copy of your mri to him then talk to him some more you may be supprised.
Also contact your HMO and ask if they will cover the cost of bringing him in or you going to him. you have to find a way. the sooner the better.

Dan 

[Mark H]

Hi JT,
welcome to the family. I have the bilateral AN's too. Mine are real small so far, around 2mm each as of Feb's MRI. I'm getting another one done Friday night and also Saturday morning. I think they're doing the head and neck Friday and the spine Saturday, or maybe the other way around. Guess I'll find out when I get there. I was going to wait 'till next year but my neck (maybe the tumors there) has been extremely painful for about a week so the Dr's went ahead and moved the tests up so I can find out what's up. My AN's don't bother me much so for right now I'm leaving them alone since they're being nice to me. There is an NF2 group here, and some other good sites are
www.NF2crew.org    www.ctf.org   www.nfinc.org
All have good folks just like the bunch here. I know you're kinda numbed by this so far but try to relax a bit. Take some time and do plenty of research, but try not to let things you read scare ya.
Mark

[leapyrtwins]

JT -

I don't want to alarm you, but eventually you have to do something about your ANs.  You can't just live with them forever; at some point they will be fatal. 

That said, you don't have to run out and have them removed tomorrow; since ANs are slow growing.  Take the time you need to research your situation and the options out there.  Dan's suggestion of Dr. Hitzelberger sounds like a great one.  Most doctors are sensitive to the cost of treatment and will do what they can to help patients truly in need.  I know that my doctor did Cochlear surgery on a young boy free of charge for a family who couldn't afford it.  He also got the manufacturer of the Cochlear to give them the device free of charge.

Focus on the positive.  We are all here to help you.    Aren't you glad you found this forum?  It's encouraging that the neurosurgeon you have been referred to is very well versed in AN surgery.   I encourage you to make an appointment with him.  He many very well put your mind at ease. 

Please don't give up on your situation.  Sometimes just contemplating what something will be like makes things seem worse than they really are.  Take it one day at a time and you'll get through it.

Jan 

[nancyann]

JT:  I don't know what to say, other than I echo everyone's sentiments here that you ARE in our thoughts & prayers.
     

[lori67]

I'm willing to bet you are stronger than you think you are.  I felt completely overwhelmed at first too, but afterwards I was able to look back and say "Hey, that wasn't so bad".  Not that I'd have a desire to do it over again, but I think I came through pretty well.  I know you will too.  There are some very talented surgeons out there and lots of people who care about you - even if we don't really know you!

Wimpy people must not get AN's because it seems everyone here is a pretty tough cookie.  And there's always room for one more tough cookie in the jar!

Think happy thoughts!   (Like cookies...)
Lori

[Jeff]

Hi JT,
I am sorry that you have gotten this diagnosis. I know that it is tough. I think that you have gotten some great advice.
Regarding working with your HMO....I think that first you need to survey your thoughts and feelings regarding how to approach these tumors. Read about NF2. Check out the other resources that people have suggested. Then, you can formulate a plan for proceeding(which is what you really need when you have bilateral tumors). What are your priorities? I would like to suggest that you consider requesting an Auditory Brainstem Implanthttp://www.earinstitute.org/news/facts/abifact.htm. This may be your way to get experienced NF2 doctors. I know that doctors Brackmann and Hitselberger work with HMOs and have traveled from House Ear Clinic in Los Angeles to perform surgeries all around the country.

As others have suggested, I recommend sending a copy of your films to House for their free consultation. Her is a link to consultation information. It is located near the bottom of the pagehttp://www.houseearclinic.com/acousticneuromaFAQ.htm. And, you may want to contact a particular doctor there. Their email address scheme is fairly simple - first initiallast name @hei.org I work with Dr. Friedman there and I think that he is a great guy. You can read about all of the doctors here: http://houseearclinic.com/physicians.htm. Please let me know how I can help.

I know that this is all overwhelming and I am sorry.

Best wishes,

Jeff

[JTomes]

Thank you all so very, very much for the advice and your concern. I'm not so concerned about the medical bills, my insurance will cover that. The thing that is holding me back right now is that I will need to save enough money to cover the difference from my short term disability at work. I just can't afford to lose 25% of my pay for 6-12 weeks.  The other thing that scares me is that I will basically do this on my own. My daughter would be more than happy to help me, but she lives 2 1/2 hours away. It's just so much to process at one time.  A friend of mine is a doctor and told me that the two that I am seeing work together as a team and are two of the best around this area. I'm just VERY scared at this point and am not at all sure that I want to do this right now. I know the risks of waiting, but I wouldn't be any worse off than I am right now if I wait a while. I have lost 40% of my hearing in my left earto date, but I don't think it will get much worse than that in a year. Maybe I'm being the foolish one, but I know my weaknesses and stregenths, and do not feel strong enough to endure this right now... not to mention that I will have to do this again. I know I can't do that! I will just pray and hope that things don't get too out of control. Keep your fingers crossed!