AN is Growing - Choices and Experiences

[Kirk76]

Hi All,

I was diagnosed with a small (11mmx8mm), left side AN in Jan 2006. Doctor suggested waiting a year to determine if the tumor was growing before making any decisions about treatment etc. Had another MRI and received the results yesterday which shows reasonable growth - now 13mmx10mm so docotor has suggested that we need to do something about it.

Even though I had spent a year dealing with the fact that I had an AN, I don't think I had quite prepared myself for the reality of what AN treatment may mean to my life. Doctor has suggested that given my age (I'm only 30), a radiosurgery option may not be best as there is no gurantee that the tumor wouldn't begin growing again in 5-10 years - follow-up surgery would then carry much greater risks for facial nerve damage etc. ANy thoughts or comments on this? Personally I'm not keen on the idea of radiosugery and had rulled this out in my own mind anyway.

Looking at the surgical options, he has suggested that Translab would be the most appropriate in my case given the size and location of the AN. However, I'm very concerned about the precedure and in particular the post-op complications. My hearing is very useable at the moment so losing this entirely would be a big thing to come to terms with. I'm also concerned about balance related issues, especially since I'm a keen cyclist and snow-boarder - both of which require a pretty keen sense of balance! The doctor mentioned other options but each one carries a greater risk of complication and risk the the facial nerve.

So, I'm really interested to hear peoples experiences with regards balance related issues after Translab, both good and bad. I asked my doctor about balance and he suggested that 5-6 days and balance would be ok. In addition, I'm also keen to hear what (if any) options their might be for delivering some kind of hearing after the operation. I have head of choclear implants and other such options but not sure if they apply to AN patients.

Thanks.

[Kirk76]

Hi Bruce,

Firstly, thanks for taking the time to write a response, it really helps to get as much information and advice as possible at this stage. I have read the two articles that you have highlighted and they do make for interesting reading. I think the opinion from my doctor regarding radiosurgery is simply that the future outcomes are relatively unknown. The studies that you highlighted only showed a maximum 10-year follow up and whilst the results where positive, the author did point out that the data only included 10 patients. I odn't beleive that he has taken the option away, I think he is simply trying to offer a balanced view - which I'm beginning to reliase is a very difficult thing to do with ANs. I guess the other point is that I am in the UK and whilst this shouldn't make a difference, I'm sure there will be a difference of opinions between US and UK medical folks.

I think my doctors view was that given my age, if I chose the radiosurgery approach, it is likely that a followup procedure(s) would be required - especially as I hope to have another 50-60 years of life left (fingers crossed)!

I think that I need to do more research in to the radiosurgery options so if anybody has any adidtional opinions or pointers they would be greatly appreciated. I do have a view on this but it is heavily influenced by what I have read and heard from my doctor.

What was also interesting from the articles was the suggestion that Otolaryngologists prefer the Translab approach, this would explain why my doctor (who is an Otolaryngologists) suggested this was the preferred approach, even though my hearing is still quite good. He suggested that the preservation of the facial nerve is key and that Translab offers the greatest chance of this happening. As I said in my first post, the loss of hearing and balance impact would be a major concern if I went down this route. I want to consider other surgical approaches but I may need to speak to a neurosurgeon to gain a greater insight here.

Either way I have a lot of research and thinking to do.

Thanks again for the response. I'm sure I'll be posting more comments on here as time goes on.

Oh, and whilst i'm posting - anybody here from the UK? Keen to find out more about local experiences.

Thanks.

[krbonner]

Kirk,

Bruce, as usual, has very sage words.  If you do all the research and make fully informed decisions, then you know that you're making the decision that's right for you.  That's what's important.

I had translab surgery in Sept this year.  My hearing had been almost completley gone for cloe to 18 months prior to surgery, though, so that wasn't an adjustment for me.  As for the balance, it will largely depend on how much of your vestibular system is already gone and whether or not your body is already compensating for that.  I had few balance problems before my surgery - just occasionally taking an extra step to stay on track.  The first few days post-op were tough - if I turned my head too quickly, the whole world went into a tailspin!  But by a few weeks post-op, I was back to where I was before the surgery.  The docs think my body had already adjusted to losing the vestibular nerve on the AN side, so the whole system bounced back pretty quickly.  But, of course, no one can make guarantees about how you will react to the surgery.  That's what I found so hard about making the decision about surgery - I could read all the information in the world, but that didn't help me know what my recovery would be like.

There are vestibular labs around (at least in the US) that can test your vestibular system and figure out how much you're already compensating.  Don't know if that's an option for you...

I also have not bothered with doing anything about the loss of hearing on my left side.  In my daily life, it's rarely a problem.  I somtimes have trouble figuring out where a sound is coming from, but it hasn't yet proven to be a problem.  I may end up with a simple amplification hearing aid for the good side to use when that side is blocked with fluid from a cold or something, since there's no wiggle room left in my hearing anymore.  And I already have some very mild hearing loss in my good ear from when I was little...

Anyway, please ask lots of questions.  This is a great forum full of lots of people willing to share their experiences.

Katie (outside Boston)

[tony]

The studies from our gamma knife centre have ten years,
shortly to be 15 yrs, worth of track record regarding radiotherapy
- maybe get the advice of two or three specialists
in this area
- make a choice yes - but based on a consensus of many views
best regards
tony

[kjmema]

Kirk,
If you haven't already found this site you might give it a try.   http://www.cyberknifesupport.org/   The doctors here will answer questions concerning GK/CK for free and are very knowledgeable.  Best of luck to you in whatever decision you have to make...I'm also just beginning the AN saga....Karen   

[Obita]

Kirk76:

I am very glad my tumor is gone but re-growth is always in the back of my mind......about May 1, I will get my 3 year MRI and I know that the following week (until I get the letter with the all clear news) will be as stressful as last year and the year before.  I wish surgery meant it would be gone for good but it does not.

All you can do is research your butt off, interview as many doctors and you want and go with your gut.  Once you have decided on your treatment, you will feel good about it and want it done yesterday.

Should you decide on surgery, the outcome will largely depend on your surgeons experience so find one that has done hundreds.

ANs are the pits.  Some don't grow, some grow fast, some grow slow. Some die, some don't. Some stay away, some re-grow. 

Good luck, Kathy

[Kirk76]

Hey Folks,

Thanks for the replies. I guess the fundamental issue is that there is no right answer here. All methods are appropriate and, depending upon who you speak to, one method will be suggested/preferred over another. I hadn't appreciated the difference between CK and GK so need to do more research here.

Anyhow, appreciate the feedback. Will keep you posted on my decision and the outcome.

Thanks.

[marystro]

Hi Kirk,

Being young should not be the main factor of deciding on microsurgery vs. radiosurgery.  People in their 40's or 50's or even 60's still have a pretty good life ahead of them spanning beyond many years to come.  So, in my humble opinion, the following are my decision factors:

1. Health condition to take on surgery
2. Personal preference of whether you can mentally handle having a dead tumor in your head and on-going montioring
3. Size of the tumor (radiosurgery typical cut off is 3 cm)
4. Financial or insurance coverage
5. Access to treatment options
6. Availability of best treatment team

I will get unbiased health care team to dispense objective advice in the patient's best interest and preference.  Additionally I will ask a lot of questions until I am comfortable with my decision.  Once the decision is made, I will move forward with trust, faith and optimism.  The ANA forum is an excellent source of information and support.  I am so glad that I found this forum.

My 2-cents.  Best of luck.

[BusyBonnie]

Kirk,

 Ã‚  I am 35 years young and have decided on Gamma Knife. My neurosurgeon said this to me, " If you were my daughter I would recommend Gamma Knife." He really helped me make my decision as well as this forum. I have two young children and would much rather be able to do things for them and with them then to have a possible 2 year or more recovery from microsurgery. I know some people have better luck with microsurgery but I personally couldn't take that risk. I could always have surgery later if need be. An experienced surgeon shouldn't have any problems doing surgery after radiosurgery. I wanted CK originally but decided on GK only because the red tape with insurance seemed too much of a hassle and I really feel the outcome will be the same. I'm scheduled for the 27th and I will let you know how it goes. Good luck in choosing ( that's the hardest part by the way),

Lana

[ppearl214]

Hi Kirk and welcome,

I have to chime in as Karen makes a good suggestion here (as well as others). The dr's that volunteer their time on the CK Support board treat using both protocols... CK and GK, so they can be unbiased about both forms for AN treatments (CK and GK).  Just a thought.  (Thanks Karen!)

Phyl

Kirk,
If you haven't already found this site you might give it a try.   http://www.cyberknifesupport.org/   The doctors here will answer questions concerning GK/CK for free and are very knowledgeable.  Best of luck to you in whatever decision you have to make...I'm also just beginning the AN saga....Karen   

[Jim Scott]

Hi, Kirk:

Sorry that you are now 'qualified' to join us (as an Acoustic Neuroma patient) but I trust that your visits to this site will be beneficial for you. 

While radiation seems a perfectly viable approach to ridding yourself of your tumor, as with all medical procedures, including microsurgery, it is not 100% guaranteed in every aspect and complications can occur, as you well know.  Frankly, no matter what approach you decide to take, there will always be the risk of complications, post-op.  To be frank, those complications can sometimes be severe and long-lasting, whether you choose microsurgery or radiation.  However, due to its invasive nature, microsurgery seems to carry a somewhat higher risk of post-op complications, as opposed to radiation, alone.  Had radiation been a viable option for me, I very likely would have gone that route. 

For what it may be worth to you...respective to gathering information on possible approaches....as my signature shows, I was diagnosed with a large (4.5 cm) AN and had no option other than microsurgery.  However, my neurosurgeon took a somewhat novel approach; he used the sub-occipital retrosigmoid approach to remove about ½ the tumor, reducing it  to about 2.5 cm and using nerve monitoring to avoid vestibular and related nerve damage.  The operation went well and there were no real complications, post-op.  After a 3 month 'rest' period, I underwent 'Part II' of my treatment.  A series of brief (20 minutes), daily, low-dose radiation (FSR) treatments (in my case, 26 treatments over 5 weeks) that had been carefully plotted by both my neurosurgeon and a radiation oncologist he worked with to attack the remaining tumor and kill its DNA.  I suffered no ill effects from the radiation other than a distinct case of boredom. 

I'm now almost 7 months post-surgery and over 2 months post-radiation with no real problems.  Granted, my hearing on the AN side is gone, as it has been for quite a few years, but my balance is probably 90% of what it was before the AN symptoms kicked in last spring and I have almost no other symptoms at this point, except for occasional minor (but annoying) problems that I attribute to the tumor swelling a bit as an effect of the radiation.  This, I'm told, is normal (post radiation) as long as it doesn't get too severe or last indefinitely, which I trust won't be the case.   I'll have a follow-up MRI scan in April to determine the status of the remaining tumor.  I hope to see it going into necrosis (cell death).   So do my physicians.

What decisions you make will ultimately will, of course, be yours .  Its not an easy road, as we all know - too well.  However, there is sometimes something besides the 'either/or' approach to having your AN removed.  In my case, I utilized both options: surgery and radiation.  However, I had a very large tumor and a very concerned neurosurgeon who wanted to do everything possible to avoid leaving me with nerve damge of any kind while still ridding me of the tumor.  I survived both surgical and radiation procedures quite well, which should be encouraging, if not definitive.   

I hope my account is of some help to you as you wade through your options.  I wish you the very best.


Jim

[mellowrama]

Hi Kirk,

I hadn't hear any more concerns about re-growth after radiation as I have with surgery.  The surgeon I saw wanted to do both retrosigmoid to "debulk" and then radiate, and he told me it still may grow back.

I feared having more symptoms from the surgery results than what I already had, so I had ck treatment instead....I still have perfect hearing and fine balance although I'm only post treatment 3 months.

best regards, melinda

[jlamborn]

Hi, I'm 3 weeks post-op translab and glad I did it.  My AN was 13mm on the right side, hearing had mostly gone over a period of 11 months, but what drove me to surgery was the balance issues that started two months ago.  It affected the ability to do my job, which wasn't an option to quit.  Over those last two months my balance deteriorated rapidly right up to the point where it wasn't safe for me to drive anymore.  I chose Translab because that gave the best chance of keeping my facial nerve intact and that there wasn't any usable hearing to save.  I'm amazed at how fast my balance is recovering after the surgery; at just 3 weeks, it's already 75% better than it had gotten to before the surgery.  I was up walking around my neighborhood a day after coming home from the hospital  My facial nerve was not damaged, although that side was a little slow to respond due to normal post-op swelling (initial tests immediately after surgery were excellent, so everything is expected to return fairly quickly).  It gets better every day and should be normal in another month or so.  I'm also returning to work in another week, just not doing any heavy lifting for a couple of months. 

Jean