Meeting with the neurosurgeon

[Jeanlea]

Today I met with my doctors.  One is the doctor I had the appointment with and the other was the neurosurgeon.   They will both be operating on me.  The neurosurgeon has done around 1000 of these surgeries over the past 30 years.  I felt very much at ease talking with him.  He told me early in our meeting that because of the size of 3.5 cm and location of my tumor that it was unlikely that I would retain hearing on my left side.  I did find out that many people do well with just one ear.  He explained that he knows some excellent techniques for saving the facial muscles.  Of course they went through all the things that could possibly happen during surgery.  It seems like the odds are quite low. 
I learned that I will lose my balance on my left side, but that the right side will learn to compensate for that.  I've recently discovered that I can balance on one foot on both sides with my eyes open, but not with my eyes closed.  They told me that was normal for this condition.
I also learned that the tumor is pressing on my brain stem.  I hadn't put it together before, but I noticed in the past few months that when I strain during a bowel movement I feel a painful pressure in my head.  It would go away quickly so I never paid much attention to it.  Apparently this is caused by the fluid in my head.  The doctor told me not to do anything that causes that type of strain.
Now that I have my initial appointment done I only need to wait for the surgery.  They want to do it as soon as possible.  They are thinking that the first week of September will fit in their schedules.  That gives me enough time to plan for being out of work.
I'm ready to have the operation and recover.

[alibauer]

Hi Jeanlea,

Wow. I can imagine how you must be feeling now, because I am currently "shopping" for a surgeon, and hoping to get the surgery over with ASAP. Thank God it doesn't seem like I have an AN after all. I do have a spinal nerve sheath tumor, either a schwannoma or a neurofibroma, but as it turns out, it is too low to affect my hearing or facial nerve. It's in the ballpark area of the nerves that control breathing and my left arm and back function. Sadly, I found this out from reading my own MRI and CT Scan reports, and doing my own research online. Hoping to find out more when I meet with the first in a series of neurosurgeons on Monday. I'm going to get at least 3 surgical opinions before I choose my surgeon.

I realize that your case is very different. Your tumor is over twice as large as mine (1.3 cm) and is already pressing on your brainstem. It's essential you get it out ASAP, no question. Still, I feel I have to make one suggestion. Since you have a few weeks before your surgery, why not see another neurosurgeon or two who has had experience with ANs? I'm not saying to switch doctors, or cancel your tenative date of surgery, but merely attempt to get a concurrence of opinions from several experts? In the process, you could find a doctor with even more experience and want to go with him or her. In the very least though, you may find it reassuring that several talented surgeons agree with your course of treatment. That is what I would do in your shoes.

I will be thinking of you as your surgery draws near. Please keep posting. There are people on this forum that have gone through almost identical surgeries. I know their insight will help you. I was only diagnosed two weeks ago this Monday, and I've had moments where I've felt myself crumbling a bit under the strain. I feel stronger now, and I think that this forum has had some part in giving me that strength.

Above all, remember that you are not alone.

Ali

Ali

[russ]

Jeanlea
  You'll get through this. I like your final sentence: "I'm ready to have the operation and recover".
With that, you have come a long way already. You have begun your recovery b-4 surgery!
  Russ

[Jeanlea]

Hi Ali,

I've been reading your posts also.  I'm amazed that you were able to tell so much from your scans.  You must be really doing your research!  I hope that all goes well for you.  I'll be watching for your posts to check on your progress.
I understand why you think I should get more opinions on my surgery.  I have been doing my research on tumors of my size.  So far everything I've read fits with what my doctors have told me.  I'm lucky because my local ENT has an excellent reputation and he is the one that recommended the second doctor to me.  My sister works at our local hospital so she is really aware of who the good doctors are.  I'm also trying to find other patients who've worked with this doctor before.  I appreciate your concern.


Russ,

It's people like and the others on this board that have helped me to see that this is something that does not have to get me down.  I'm also very lucky in that I have tremendous support from my family and friends.  They are all concerned about me, but they also tell me that they know I will do well with this because of my positive attitude about life in general.  :-)

Jean

[alibauer]

Hi Jeanlea,

I think it's amazing that you've found such a reputable doctor on the first try. I mean, 1000 surgeries in 30 years is just about as good as it gets, no question. Should have mentioned that in my post. I think it's a safe bet that he's good. If you don't want to go for other opinions, at least you know you've got a guy with experience. I hope I didn't undermine that confidence at all, but I doubt it, because you seem pretty sure in your choice. That's good.

I still have to say though (and I know I'm being a major pain in the ass, for which I apologize in advance), that in your shoes, I would still see at least a couple other doctors. If for no other reason, because you were diagnosed like 5 minutes ago. You are extremely vulnerable right now. It's always tempting to trust the first doctor that seems good or even is good. I was in exactly the same place just about a week ago. Seeing other doctors could do no harm. Maybe you'll choose not to and that will be fine. For me though, I couldn't do that. If I were going to lose my hearing, I'd want at least a couple other doctors to tell me that there was little chance of saving it.

Perhaps we are very different, and this point is moot. Maybe you find my comments upsetting. If you do, I'm sorry. This is the most serious of issues and the most sensitive of times in any of our lives (those of us newly diagnosed). Just make sure you are 100% comfortable and not making a decision out of fear.

Ali

[Jeanlea]

Hi Ali,

I do not find your comments upsetting.  I understand that you are only looking out for my best interest.  There are a few reasons that I probably won't be getting a second opinion.  First and foremost, I have great confidence in my doctors.  It's just a gut feeling that I have.  Kind of like when I went on my first date.  I knew I would marry him.  Been married for nearly 22 years now.  :-)  I also live in an area that is very rural and I want to not be too far away from home so I can get more support from my extended family.  I'm already having to go 200 miles for the surgery.  Lastly, I no longer have my x-rays.  I left them with the doctors.  From reading the posts I've not heard of many people that can keep their hearing with tumors my size.  Maybe I'll be lucky and some miracle will occur and I'll be able to keep my hearing.  I do believe in miracles.

Thanks for caring,
Jean

[alibauer]

Hi Jean,

In a rural area, you are unbelievably blessed to have a doctor so experienced with this type of tumor within 200 miles!  That is amazing luck - even a miracle in and of itself. I had no idea you lived in the country. I live in New York City and there are talented neurosurgeons all over. My perspective is a lot different.

I'm sorry that my comments upset you. Here are some that will reassure you - 1000 surgeries in 30 years is about the best anyone can hope for, especially in a sparsely populated area. In fact, I was struck by how lucky you are to have found such an experienced doctor so quickly. I don't know if the guy you're visiting is in a large city or not, but if he's also in a fairly rural or suburban area, chances are, he's as good as it gets. One final note; always, always, always trust your gut. We women are almost always right when we are that certain about something  . If a surgeon gives me that strong of a reaction, I will probably go with him/her after all the appointments are through.

I will pray that your hearing is intact after surgery, and that you'll be prepared to deal with it if it's not. I know your facial nerve will be fine. Please don't be nervous about the surgery (anymore than absolutely have to be). You'll do fine. Just think, that jerky thing causing all kinds of problems and anxiety will soon be gone for good, your health no longer imperiled by it's ever-present nuisance. It will be like being handed a new life.

Good luck and please keep us posted.

Ali

[Jeanlea]

Ali,

I'm glad to know that my doctor is among the most experienced.  I had thought so, but it's nice to hear someone else say that too.  I feel I am very lucky.  I went to a great local ENT who sent me for an MRI right away.  My local hospital, which is 30 miles away, does  a great job recruiting excellent doctors.  He sent me to this doctor.  When I was at my appointment I first met with an intern since this is a teaching hospital.  He mentioned that he knew my local ENT also.  I am having my surgery done in Milwaukee at Froedtert and Medical College. 

Keep me posted on how you are doing also.

Jean

[wanderer]

just to let you know,

After my tumor was removed I was out of the hospital and feeling just fine 2 days after surgery.

Unfortunately I had other complications that prolonged things.

One thing you need to concern yourself with is Facial nerve Preservation.    I had a 2cm X 2cm X2cm tumor.   I saw several doctors  one was even a partner at House Ear clinic.  They all recommended Translab.  They all felt the hearing was gone.  Losing hearing is nothing compared to facial paralysis.

Luckily with a large tumor your balance is already gone so your body has already compensated.  I have had very little balance issues. 

[Jeanlea]

Hi Wanderer,

Wow!  Feeling fine after two days.  That is great.  Sorry to hear that you had other complications.  I'm sure I must have read some of your posts, but I've been reading so much lately it's hard to keep it all straight.  How are you doing now?

My doctors said they will be doing a translab procedure and I will lose my hearing, but I can live with that.  They talked for a long time about preserving my facial muscles.  They seemed fairly confident that they could do that, but of course that can't guarantee it.  I wouldn't feel very confident if they did guarantee it. 

I'm beginning to think that more of my balance is gone than I may have previously thought.  For about the past year I've had minor problems with balance when I get and start walking or walking when it's dark.  My laid-back attitude that accepts life as it comes apparently caused me to miss these things as symptoms.  So maybe I won't have too many balance problems after my surgery.  :-)

Jean

[luv2teachsped]

Hi Jean!   I recently had my An surgery on May 18,2005.  Things went very well.  Although like you, I had a large tumor and my hearing is gone and my balance is off , I do okay.  Not to disillusion you, But the person who was feeling great in two days is exceptional.  After almost three months I still become very tired when I over do.  One of the signs of over doing it,I've learned is I get headaches and have more balance issues.  I had my surgery at U of M, and like you, felt very confident in my doctor.  My surgery was 10 hours long, but almost 2 hours of that was spent scaping the tumor off the facial nerve.  At three months post op, I have No facial paralysis, and the numbness is almost gone.  My only side effect was no tears in the affected side of my face.  A small price to pay !  Good Luck.I'll be praying for you! luv2teach

[Jeanlea]

Hi Luv2teachsped,

It is good to hear from so many different people.  I know that everyone is different, but each person's experience gives me a better idea of what to expect when I have my surgery.  I know that one of the things that I will have to work on is not trying to do to much when I return to work.  Home won't be a big problem.  I've taught my children that they are expected to work around the house.  LOL  And my husband is wonderful.  I can see that even more so now than before. 

I'm guessing that you teach special ed.  What ages do you have?  Are you planning on working again in the fall?  I teach kindergarteners.  Since we start school so early I'm hoping to be able to teach the first two weeks and then return in mid-October or so.

Jean

[Goldineye]

Hi Jeanlea, I have read your posts. I had a 3.5 AN removed April of last year. As a matter of fact I just gor my 1year MRI results back and YEAH  there are no signs of tumer regrowth. Thank God. I lost my hearing on the left side. I have had ahard time adjusting to it. Funny I thought it would't be tis hard.But I am going to start looking for the cross hearing aids. You might want to do some research on them too since you are a teacher. I can't seem to figure out where sounds are coming from. Especially when my phone rings and it's not on it's base. I run around the house with my good ear searching for it . IT DRIVES ME CRAZY ! Also I have read some posts where people have the BAHA implant put in the same time as their operation for the tumer. That was never offered to me. And now I just am too scared to get it done.Unfortunately I am also  paralyzed on the left side of my face.It has made some improvement but doesn't look like much more will come back.Balance was a problem for a while but I  had a therapist come to my house for 7 weeks to help with that. Look to see what your insurance covers, so you know what help, if any you can get at home if needed.Well good luck and keep in touch.. Goldineye

[matti]

Hi Jeanlea -  I am so glad you found a surgeon that you feel comfortable with. The first surgeon/neurosurgeon that I met with, I felt so comfortable with that I did not feel the need to look any further. I knew from the getgo that I was in very capable hands. I agree with goldineye regarding the BAHA. I wish I would have had the BAHA available to me 7 years ago, as I probably would have had it done the same time as my surgery. The hardest thing so far for me has been the loss of my hearing. I may go for the BAHA sometime next year. It is nice to know that it is available during or after surgery. Good luck Jeanlea and I'm thinking about you!!

Goldineye - I'm with you on the hearing issue, it drives me crazy too. My lastest story:  Last week I was sitting in a cafe waiting for a friend and I kept hearing a phone ring and was so ticked at the inconsiderate person that would not answer it. It just kept ringing and ringing and then I noticed people were staring at me - it was my phone.  My family automatically tells me what sounds are and where they are coming from and that is a huge help.

matti

[wanderer]

Baha implantation although done as the same time as surgery is not recommended.   

I am a prime reason why.  My CSF leak surgery, staph infection, abcess surgery and possible reaction to the bone cement lead to complications with BAHA including site infection.

Inplantation is a 45 minute procedure and is much safer done after healing has taken place. 

all 3 of the surgeons I saw were firm about this.   2 of them teach at Washington University School of Medicine and One was a Partner at house for many years.

they all said they could do it but prefered not to.

To this point I have been unable to get Mercy Health plans to cover the BAHA anyway.