Newbie--scheduled for surgery in October 2008

[dufreyne]

Steve:

Thank you very much for the info re:  the portland ANA chapter and '4cm in Pac Northwest'.  I went ahead and contacted her. 

I will try to attend the December chapter meeting--I'll be about 6 weeks post op and will likely benefit from getting out of the house. 

Thanks again.

D--

[leapyrtwins]

D -

if you don't get out of the house earlier than six weeks post op, you'll be absolutely stir crazy by then

Steve -

hope your dad's hip replacement went well.  My dad's had both hips replaced - one of them twice - and it's made a world of difference for him.

I also like your suggestion about a routine MRI around age 50; great idea.

Jan

[sgerrard]

D,

Having just re-read your first post, I think I should add that to me, for an intra-canicular tumor less than 1 cm in size, with good hearing worth preserving, doing Cyberknife with Dr. Chang at Stanford is a treatment option worth considering. If you want more info on that, just ask. It is what I did.

Steve

[dufreyne]

Steve:

I appreciate the thoughts on CK.  I looked into Gamma Knife, Cyber Knife and FSR extensively.  I strongly support those who choose that option, but it just wasn't for me.  Someday, this whole diagnosis and it's treatment options will be completely worked out and there will be a simple algorithm that doctors will follow based on hard science.  Although, I am grateful that I live in 2008 when the treatment options have gotten so much better than before. 

Thanks again.

D--

[Sue]

Hi Dr D again,

It will be a wonderful day when AN's and other such brain boogers can have a very specific method of treatment that doesn't make the patients looney tunes in trying to figure out which way to jump.  I don't know, maybe AN's or VS's is the only BB (brain booger) that presents this confusion of options.  In the meantime, I will console myself in the knowledge that one day soon, I shall probably wake up with some kind of super power that my radiation has given me.  I mean, besides healed, I'm sure there must be some wonderous thing to come out of this!   Well, there is delusional, but I like to think I can find humor in the tumor.   

Sue in Vancouver, USA

[dufreyne]

Super Sue:

I agree.  We need to find the humor in the tumor!

To my knowledge, this is the only brain tumor that poses so many options to the patient--which drives us all crazy.  The vast majority of brain tumors have a single treatment pathway that the patient may or may not choose.  However, we are the lucky ones.  Some folks have only one treatment option, but also have malignant tumors.  We are the lucky ones...

D--

[leapyrtwins]

I'm donating autologous blood this week and filling out the insurance paperwork as well as my medical leave of absence paperwork. 

D -

I meant to ask you the other day, what is your reasoning for donating autologous blood?

I hope you don't mind me asking 

I was told by my neurotologist that this wasn't necessary since AN surgery isn't usually a "bloody" surgery - and in my case, that was absolutely true.

But now that I see you are doing this, and you're a doctor, I guess I'm looking for a second opinion 

I also hope you don't charge me for this second opinion 

Jan

[Kaybo]

Jan~
I gave a pint & my BIL gave a pint - they said that they NEVER use this - that it is just precautionary.  In my case, they used BOTH pints...

K

[dufreyne]

Jan:

You're right that most of the time it is not necessary.  However, whenever you are operating near or around the brain, there is tremendous vasculature at risk.  The surgeons doing this procedure know where everything is "supposed" to be, but there is a certain amount of anatomic variation between patients and sometimes an artery or vein gets traumatized.  In most cases they can use something called "surgicel" to stop the bleeding (a small pad with coagulant properties) or simply ligate (tie off) the cut artery or vein.  Hopefully, that same artery or vein would not be too big! Also, depending on a number of factors (including age) some individual's arteries and veins are more friable (fragile) than others. 

We have a saying in Emergency Medicine--"Hope for the best, prepare for the worst".  In practicality, the more I prepare, the less I need it!  So, hopefully, the same will apply here...

D--

[leapyrtwins]

D -

thanks for the medical explanation - as an accountant I always find this kind of thing somewhat confusing, but totally fascinating.

Being a regular blood donor, I was aware of autologous donation so I knew enough to ask my doc about it.  And even though I was confident that he wasn't "leading me astray", I have heard others on this forum mention that they donated their own blood so I wondered about it.

Guess as K proved, it's not a bad idea.

Jan

PS - I'm right there with you on the "hoping for the best".

[dufreyne]

Donnalynn:  Thank you for welcoming me to this forum.  It is appreciated.  I see that you had Middle Fossa surgery this year.  How did it go?  Anything unexpected?  Any words of advice that perhaps weren't conveyed to you pre-op?  My surgery is scheduled for a couple of weeks from now.  Thanks.

Jan:  Sounds like your surgery went great and you had no need for any extraneous blood products.  I am very happy that your surgery went well--it always pays to have experienced people doing what they do best.

D--

[dufreyne]

Donnalynn:

Thank you for that thoughtful preview of what to expect.  It is exactly the type of information that I've been trying to get.  You put some things in perspective that I frankly had taken for granted.  I hope to be better prepared. 

I do have one question that I forgot to ask that might seem silly:  how do they repair the hole in your skull?  Do they put the piece back or simply cover it up with something?  I just figured that they probably put the piece back and use a small plate to secure it back to the rest of the skull, but I really don't know.  Your thoughts?

Also, have you noticed any cognitive deficits?  Do you find any difficulties thinking clearly?  I'm expecting to be fuzzy for a few months, with gradual improvement back to my baseline--is that realistic?

Dufreyne

[Omaschwannoma]

Don't know what your docs will be using, but mine used some sort of (can't remember name of product) putty.  I know others replace the patients bone with plates and screws.  There is controversy regarding what is used in causing headaches post treatment, but don't think there is anything definitive here. 

I certainly had difficulty multitasking, but no longer.  Also remember having difficulty with math, much improved.  Short-term memory problems come and go.  I do know with SSDness and not hearing clearly can make you think your having cognitive difficulties, but once you "hear" all you realise you are "okay".  I remember my surgeon, Dr. Antonelli, telling me he would choose surgery if it were him (yes, I know he's a surgeon and all) as he would be concerned with cognitive issues using radiation treatment.  Having said this, I don't know if either treatment is worse or better in that regard. 

[Jim Scott]

Dufreyne:

My neurosurgeon inserted titanium mesh held by tiny screws to cover the bone removed during the surgery.  It healed well (some feelings of 'tightening') and has not been a problem in any way.  I would prefer this to using belly fat as a filler which is the 'traditional' method, but of course, this is an issue to be discussed and decided between you and the surgeon.

Jim

[joebloggs]

Hello D,

Hope the next couple of weeks of waiting go well for you.  I have only just found this site today - I have just been diagnosed - 2.5cm roughly starting to push on my brain stem, facial numbness, hearing loss.  Good times!  I'm 31 and noticed the hearing problems a couple of years ago, but my GP wouldn't refer me to an ENT, then I went numb down the right side of my body and face all of a sudden in May this year - turns out there's a cyst inside my tumour and my consultant thinks it grew all of a sudden in May and hit my brain stem which caused the numbness to my body, and stretched out the nerve to my face at the same time.  Face still numb, body calmed down.  I had a one night stay in hospital to make sure I hadn't had a stroke or anything like that then they sent me off with a CT scan, a lumbar puncture and a ECG under my belt.  I had an outpatient MRI a month later and then heard nothing for months and months.  I'm in the UK and the way things usually work here is that if they don't find anything wrong, they don't tell you - they only tell you when something is awry.  SO I thought (somewhat stupidly), that everything was fine and the numbness (I hadn't twigged that the numbness and hearing loss were related at that stage) was just one of those things.  About a month ago I saw an article in the local paper about a woman with breast cancer who had a mammogram and never got her results - assumed she was fine, but lo and behold, 3 years later, she now has the cancer in her bones, is dying and the breast cancer can easily be seen on the original mammogram.  So I thought, mmm, that's not very cool, I might chase up my MRI.  So I did - and eventually, after trying to get through to several people at the hospital, talked to a lovely secretary in the Neurology department who dug out my records, told me the original doctor I saw back in May had left the hospital and no one thought to tell me my results.  She got some advice from the neurologist and referred me to an ENT surgeon, who saw me, told me what was going on, referred me to a neurotologist (at a different hospital now...thank goodness!) and here I am!  Sorry, that ended up being a bit of an epic, I just wanted to say hi!  I'm scheduled for trans-lab surgery in February here in the UK with a fantastic surgeon who has over 1000 AN operations under his belt - this is my plan B, my surgeon is also writing to doctors in Australia (I am Australian) to see if someone fabulous over there can do it - he advises as I don't have anyone over here, it would be better to be recovering with my family around.  So cross fingers someone will operate in Feb!  But point being, you asked about closing up the hole - over here, the surgeon I've seen closes the gap using the uppermost layer of muscle from the leg as it is extremely strong apparently.  I asked him why he doesn't use abdomen fat like lots of others seem to, but he said it isn't as good - for whatever reason.  Anyway, they have a website with questions and answers which may help you before and after your surgery.  Sounds like you have done an amazing amount of research, but just in case you need more answers: http://www.addenbrookes.org.uk/serv/clin/surg/neurotol_skullbase/acoustic_faqs1.html

Hope it helps!