Why choose surgery???

[sgerrard]

(peeking out of hiding place) Has the dust settled yet?   

One of the articles cited above got it right in its opening sentence:

"There may be no other intracranial neuropathological entity whose proper treatment arouses as much controversy as vestibular schwannoma." - Jason Sheehan, Journal of Neurosurgery, Nov. 2006

I am lucky enough to have an ENT who straddles the fence and discusses both options, despite being a practicing surgeon himself. (Dr. Hodgson, Portland, OR). I saw him today.

One factor we have not discussed here is that surgery sacrifices the balance nerve on the affected side. Since my lab tests show good vestibular nerve function on both sides, and I have "serviciable" hearing on the left and a small tumor, both the doctor and I lean towards radiation. There is little chance, though, that this will relieve the physical pressure exerted by the tumor on nearby nerves and blood vessels; it will only stop it from increasing. But since it is a small tumor, and surgery would do no better at saving the affected nerves, it seems to make sense to me.

Anyone up for a GK versus CK debate? 

Steve

[Captain Deb]

Oh, Boy I was wondering when "The Great Debate" would surface!

My diagnosis was a joint effort between my GP, who ordered my hearing test and MRI, and the ENT, who brought me the bad news while I was in the hospital. I had been admitted the previuos day with a migraine, so they kept me overnight and MRI'd me the next day. In the hospital I asked the ENT point blank if there was any form of radiation for this tumor and his answer was a firm "No." My GP also told me I needed to have surgery as soon as possible.
Needless to say the first thing I did when I got home was jump on the intenet and find the ANA site.

Of course there's radiation for these tumors, dummy! Jeez! Needless to say, I haven't been back to either of these docs. In the long run I did choose surgery, but not before a month of research, reading and soul-searching.  It seemed to be the best fit for my circumstances, too numerous to mention here. I can't say I'm happy with my outcome in regards to headaches, (doc said I had a really tight dura) but my facial nerve was unfazed and being quite athletic to begin with, my balance recovered quite quickly. I'm pretty sure my tumor is gone for good, though. MRI's don't make me nervous.

I just don't see any end to this debate--maybe in 20 years things will be different.  I'm just glad those of us who have access to the internet can access the information we need to make an informed decision however confusing it may seem at times. Some arrive here with sad stories of misinformation and inexperienced treatment.

Be Well and Sail On,

Capt Deb

[ppearl214]

Anyone up for a GK versus CK debate? 

Steve

Can I be the fly on the wall for this one?  I'll be making the martini's.... just follow the trail of olives.

Phyl

[Larry]

Got to be careful with this debate. there are a number of "discussions" about radiation treatment on this forum that seemed to, in the main, cause people's passion to come through.

I can only discuss my personal issue and in some ways, very similar to Deb's except like an idiot, I didn't research properly before I agreed with my Doc to have surgery. personally, the post surgery trauma that i have had for 4.5 years now has been nothing short of "HELL". As some know, I have not had a headache free day since surgery. never had a headache in my life prior. I also have sacked my Doc coz he lied repeatadly to me including telling me that a white spot on my MRI post surgery, was not re-growth. I sought another opinion and it took that Doc about 3 seconds to tell me that my AN has re-grown. He also has told me that Middle Fossa surgery was his biggest mistake in his career coz of the side effects post surgery and also the re-growths - he referred me to a study in belgium which i need to get hold of.

Anyway, the result of my surgery has been, re-growth - so back to square one. headaches daily and some days (about 2-3 times a week) a massive attack where I get moody and can't work - pretty understandable I guess. Without harping too much on it, I can't even dry my hair with a towell without feeling pain. i have tried virtually every pain killer on the market including cortizone injected into my head on many occaisons. I still have the headaches!

I am in watch and wait mode at present but if I need treatment, ya reckon I'm going to choose surgery if I have a choice?

For new patients, weigh it up. My only advice is:
Surgery - make sure you use an experienced Doc.
radiation - make sure the equipment being used and most importantly the programmers of the equipment are modern and experienced.

there are lots of technical comparisons and risks of both approaches, weigh them up as well.


Laz

[Patti UT]

guess I am reminded why I became somwhat inactive on this forum

patti Ut

[Patti UT]

explaination to my last post,    the informative and compassionate postings are what I come for,   when someone finds information in someone elses post that they feel is inaccurate or thye don't agree with, is it appropriate to come at them like attack dogs, that's what makes me log off....bye

patti

laz,  good info on the middle fosa & headaches,  I know many of us who had middle fosa have the braiwrecks., would be interested in stats on that!

[Captain Deb]

At the Symposium, we learned that the ANA will be posting an online survey as a statistic gathering device for just such purposes, Patti-yootee.  They are interested in follow-up statistics concerning headaches, re-growth, percieved disability and so on.  I'm sure we'll get the head's up when it's ready to be adddressed and I hope all of us will participate.  What a great tool for newbies it will be.

Capt Deb

[neal r. lyons]

Hi Susan- you are doing what you gotta do.  Just keep up your inquiries and research but always remember that you have the time to make an informed decision.  I cannot emphasize that enough.  Because you are naturally anxious to put it all behind you remember the most important  part of your work is now.  There are many many qualified medical professionals who are qualified to take care of the type of treatment you choose.

I chose surgery because the AN was large enough to be pushing on the brainstem, and I know that there can often be complications associated with post radiation of large tumors in some cases.

I'm happy with the decision I made inspite of facial nerve issues which are expected following translabyrinthine surgery.  I think I'm also on that list and would be happy to chat.

Even though I did a fair amount of research and changed my mind along the way about the surgery type I was to choose I still felt that I rushed my decision due the anxiety about making the decision in order to put it behind me.  My opinion is that you should pursue radiation options first and then compare surgery options.  Good luck to you and keep your head up!  Neal

[Shrnwldr]

Why I choose surgery?  hmmm many reasons.  I couldn't stand the idea of something "foreign" being in my head.  Also too I thought about my age and if the tumor grew more where would I be health wise.  Would surgery be more or less traumatic at say 75 or 80 than at 57?  I think I looked at all the factors ... postiive and negative with radiation and surgery and decided that surgery was by far the best decision for me.   

[McFlorida]

Wow, I haven't seen such passionate debate since "tastes great - less filling"!  Having only been diagnosed June 28th, I find myself in the same situation as Susan.  I go speak to a neurosurgeon tomorrow.  But I do appreciate the pros and cons discussed here.  Thanks all.

Regards,
K

[Omaschwannoma]

Just a thought here regarding doctors, businesses, surgery, radiation, leaving one with the impression the doctor is steering you in one direction--theirs. 

Has anyone given thought to how much knowledge a neurotologist has when is comes to radiation therapy?  In all honesty all they can do is tell the patient there is another choice for treatment (not talking about watch and wait as this isn't a "treatment" per say).  They cannot talk about the proceedure nor the long-term outcome, stats, etc., but they can talk, in great detail, about how their procedure would take place.  Maybe this is where the patient perceives they are being led down the surgical path vs the radiation path (and this goes for doctors performing radiation therapy). 

Then comes thoughts of "doctors are in it for the business", well they are being paid for their services, but I have a hard time thinking they would push hard for you to undergo invasive surgery and all the potential problems involved with that so they can make more $$ (one could think radiation doctors use the "less side effect, less invasive" as a carrot).  They do have other patients they see in their practice with problems other than AN's and money does come from those services so I doubt they are starving looking for their next meal ticket--you the AN patient. 

Quickly departing to watch the rockets red glare

[sgerrard]

As a side note, in spite of the earlier fireworks, this thread really has developed into a fruitful discussion.

I agree, Bruce. I would much rather have a spirited debate with exchange of useful information and references, even if it gets peoples' dander up abit, than a sleepy forum with little to offer. When we are talking about the choice of someone poking a knife into my head, or someone shooting it with a ray gun, I need some passionate discussion, dad gum it!

Wow, I haven't seen such passionate debate since "tastes great - less filling"! 

Less filling. 

Steve

[Larry]

Here, here bruce, well put.

I have posted my thoughts on the financial incentives for docs in the venting thread so won't repeat other than to say that there are great people in the medical profession and there are those in it to not only help people but also for the financial rewards. Docs are no different to any other profession as far as work ethics go.

thats my last post on that topic coz its not fruitful to help us and newbies going forward. At the end of the day, we have to weigh up all the options

laz

[leapyrtwins]

Just a thought here regarding doctors, businesses, surgery, radiation, leaving one with the impression the doctor is steering you in one direction--theirs. 

Has anyone given thought to how much knowledge a neurotologist has when is comes to radiation therapy?  In all honesty all they can do is tell the patient there is another choice for treatment (not talking about watch and wait as this isn't a "treatment" per say).  They cannot talk about the proceedure nor the long-term outcome, stats, etc., but they can talk, in great detail, about how their procedure would take place.  Maybe this is where the patient perceives they are being led down the surgical path vs the radiation path (and this goes for doctors performing radiation therapy). 

Karen -

this comment confuses me.  Don't know about neurotologists where you are, but my neurotologist is VERY well versed in both surgical and radiation procedures, and also in the long-term outcomes, stats, etc. of each option.  In addition, he routinely and actively participates in both surgery and radiation.  I found him extremely knowledgeable and extremely well-informed.  In fact, it was my numerous conversations with him, weighing the pros and cons of each procedure, which helped me decide which procedure I wanted to go with.

Jan

[Omaschwannoma]

Short and to the point.  Unless your neurotologist performs radiation therapy AND surgery (Dr. Antonelli performs surgery only) I would recommend the patient see both professionals (one that performs surgery and one that performs radiation) to get a good understanding of each treatment.  Now in regards to radiation treatment I would be visiting with ALL the doctors that have experience with their form of radiation--GK, CK, LINAC and PROTON.