Hi everybody! After 18 years, I need surgery again!

[jerseygirl]

Hello, everybody! I am overjoyed at finding this discussion forum because I remember how difficult it was to find any information at all on AN 18 years ago (not that we had any choice back then). Now I need surgery again due to the recurrence and found this forum to be of ENORMOUS help!

I am 43, married and a mother of 2 boys, aged 11 and 16. I was 25 when my AN was removed in 1988 by Drs. Benjamin and Cohen of NYU. It was 6x3x3 cm! The surgery lasted 16 hours but my facial nerve was spared! It took me fully 10 years to recover to a level where most of my days were productive as well as pain and discomfort free. I probably had every post-surgical complication anybody ever reported here (except facial nerve damage).Then I found out the tumor is back. It is growing very slowly (but surely) and I am afraid that if I wait a couple of more years, I will eliminate any chance of a good outcome. So, I started visiting neurosurgeons. I called House and spoke to Dr. Friedman. Going there sounds like the best option but my husband is petrified that I will get aseptic meningitis and CSF leak again after the next surgery and the doctors will be thousands of miles away! I know it is rare but if it is happening to you, it is real. Anybody had these problems after going to House?
Also, anybody had translab done after retrosigmoid? I have a defect already, so I am not looking forward to adding another cavity to my skull. I wonder how it looks. Is the indentation noticeable? Is it soft?
I am debating whether or not go to House or do it locally w/Golfinos&Roland. Anybody had them?


                                                           Eve

[Joef]

I had the trans-lab at house .. and you cant even see it ...

6cm! wow ... thats a big one ... not much you can do about a CSF leak ... but they are some of the best at house, and when you travel there they want you to stick around for 2 weeks just for that reason ... (the Selton Hall is the place to stay , and its only 50$ a day)

So where in Jersey are ya .. I lived there for about 10 years... off exit 117 ... 

[jerseygirl]

Joe,

I am in Bergen County. Yeah, 6cm is huge! Even by today's standards, I had an excellent outcome in 1988. However, this is round 2 of the game!

           Eve

[matti]

Jerseygirl  - Welcome to the forum, you have definetly come to the right place for info and support. I am so sorry to hear that you will have to go through this again. I am 8 years post op and even though I was told "we got it all", I still worry everyday.  

How often did you have follow-up MRI's? What symptoms were you having that led you back to the doctor?

Keeping you in my thoughts and prayers.

Cheryl

[jerseygirl]

Cheryl,

I have no symptoms to speak of. In fact, now that the tumor is back, I feel really good - no headaches, no nausea and vomiting, no fatigue. For once I can do whatever I want to do. The MRI's were requested by Dr. Benjamin to be sent to him. At 10 year mark, the scar tissue was officially pronounced a regrowth. So, for the past 8 years it was growing while I was walking around with it and feeling better and better every day! Would you believe? 

         Eve

[Obita]

Hi jerseygirl:

6 cm!!!!  My head felt like it was going to explode with a 2.5er - I don't suppose you have a MRI of it, do you?  We kind of like to see MRI's around here and a 6 cm. must look like the sun in your head.

I am so very sorry about the re-growth.  I too, think about it happening alot.  Especially when its time for the yearly MRI.

I had translab and can tell you the same as Joe did, the hole is there but not at all noticable.  It is right behind my ear. They fill the hole with belly fat and close you up.   I have a little dent because the fat was absorbed by my body in time but that does not always happen.  The good news with translab is headaches are not usually a problem.

Best of luck to you Eve and welcome.  Kathy

[jerseygirl]

Kathy,

Thanks for your reply! My head incidentally is not big at all as I am petite. It was accomodated, I suppose, because my brainstem was "compressed and rotated" according to the radiologist. It was found by accident because I had no headaches, tinnutis, facial paralysis. I also had 100% hearing to the day of surgery. My neurologist explained that me that my brain adapted to it because I was young.

          Eve

[Obita]

Eve:

I forgot to ask how big your AN is now?  Is your hearing bad and that is why you are thinking of translab?

Kathy

[Kathleen_Mc]

Eve: I also had a long first surgery, at 23, it was 16 hours......my regrowth was found 8 years later and removed after 7 years of just monitoring it (was growing and wanted it done while it was small).....I must say for me the second time around was MUCH easier and my recovery much quicker (2nd surgery only 4 hours). I did end up with horrible vertigo again (the doctor doesn't really know why) but it has resolved and I have continued on the way I was. Best of health to you.
Kathleen

[Boppie]

I had my TL in Dec. 2005, scar not even noticeable.  The first four months I could feel a bigger dent than I have right now.  It is right behind the lower 2/3 of my ear shell.  I asked the doc not to shave away any excess hair.  Even though I always wear my hair as short as you see in my photo here you still couldn't see my inicision unless I lifted the hair away. We posters sometimes joke about being dent heads but a Translab scar is not like a retrosig scar.  By the way, 43 is very young.  As you see I am 64 and came through the surgery just fine.  Probably things have changed a bit since your first surgery.   

I will post you a photo of my incision at a few days post op. Good luck to you.

[jerseygirl]

Thanks! I feel better about my future dent already! As long as it is not noticeable!

[marystro]

Hi Jerseygirl,

Would you consider radiosurgery?  We have more treatment options today such as Cyberknife.  That is if you want to control the tumor as opposed to removing it.  However, it sounded like even you thought you had removed it, it came back so many years later!  Wonder what the stats are for regrowth in general?  On the other hand, each case is different...

Wish you best of luck and we will all be here for you no matter what decision you end up with.  This is a wonderful special "family"!

Mary

[jerseygirl]

Mary,

I thought about radiation but I am a possible NF2 case since I had a schwannoma removed from my scalp 2 months before my first surgery. It means that I am at an increased risk of forming other schwannomas and meningiomas in general and from radiation especially. In addition, radiation in this particular case is not as reliable as in sporadic AN cases. In addition, the tumor is very attached to the brainstem, so they would have to radiate my brainstem. So, radiation for me is actually less reliable and more dangerous. I figured that if I have surgery now, I'll gain at least another 10 years should the tumor recurr again. There is a possibility the surgeon will leave a piece on my facial nerve to avoid complete damage to it because it is already thinned out from my first tumor and a surgery even though it is functioning perfectly, can't complain. Then I can potentially risk radiation if the new tumor is small and spherical or maybe there will be something else available. If I have radiation now and the tumor swells, it is big enough to cause an irreparable damage; if the treatment fails, the microsurgery is going to be even more difficult and by then I will need a miracle to preserve any nerve function. That's my logic. I know every case is different. I feel that by choosing microsurgery again, I  have a greater chance of tumor removal as well as nerve preservation. I just hope it happens. Take care.
                                 Eve

[tony]

Firstly can I say I am glad you are well recovered
6cms was a tall order 18 yrs ago (maybe even life threatening)
This a good story for a number of reasons
18 yrs trouble free is a long time -
and does show the slow growing nature of these beasties
I think if I go 18 yrs without trouble I will be quietly, but very, pleased
Its also interesting to talk of a 10 yr recovery time
many on the list are quite uptight after 4 or 6 weeks
When you have a moment maybe jot down your progess
- the landmarks along the way
Finally regarding NF2 - if after 18 yrs there is still some doubt
it does suggest you may have the slow growing form
which is also very good news
Good Luck
and Best regards
Tony

[jerseygirl]

Thanks, Tony. It really does look like I am not a full-blown NF2 version after all these years. As for the 10 year recovery time, all I can say is that it is because my tumor was too big to remove without doing major damage. Let it not scare anybody away from the surgery if they need one. Techology has gone along way since I had mine. For the most part, the outcomes are very good in experienced hands. Look, I am planning another one.

           Eve