Do something now...or wait?

[vjharris]

I was diagnosed with a 2.2cm x1.7cm AN a couple of months ago. I have virtually no symptoms as yet. (The tumor was picked up on an MRI taken for another reason.) The first set of Dr.s I saw (an ENT and a Neurosurgeon who does both surgery and gammaknife) said they would recommend surgery. No immediate rush, but having surgery before I start having symptoms gave me the best chance of avoiding those problems after surgery.
I had a second opinion at Cleveland Clinic with the head of Neurosurgery there, as well as a radiation oncologist. They both recommended that I watch and wait with frequent MRI's until it grows, or I start to notice difficulties, and then have gammaknife. They say the risks of surgery are much higher than the long terms risks of radiation, and GK would give me the best chance of saving my (now perfect) hearing.
I'm not sure which is riskier to my hearing...waiting or having surgery.
Any thoughts?
vjh

[GM]

You definately have the advantage of not having any symptoms at all with perfect hearing.  Since these are slow growing tumors...you have the time to research and make a decision.  I had Gamma Knife in November of 2003...I have retained the hearing in my left ear and still use it as my dominate telephone ear.  But, my tumor swelled a bit 1.8  up to 2.1..and is currently holding there.  This happens in 35% of patients treated with the Gamma Knife.  Personally I set some guidelines and I would suggest you to do the same to make a decision.  For me I wanted 1) To try and save the hearing I had 2) I wanted the least amount of time missed from work, and 3) I wanted to only do this once.  That's how I made my decision. If my tumor doesn't start shrinking by November I might have to have another treatment.  But, I'm an optomist...we'll see what Novembers MRI has to say.  Good luck.

[vjharris]

Thanks for the input, GM. It seems that most people have some symptoms before deciding on a treatment, and that those symptoms might even be a help in determining the best treatment options. I'm sure my symptoms will come somewhere down the road...I'm just not sure if treating early can prevent them.
vjh

[shanne]

Hi Gary,

You mentioned that you did the Gamma Knife for your 1.8cm AN, and it had somehow swelled up to 2.1cm now, i heard its normal
that the tumour would "react" when you do GK or FSR on it, doctors said most tumours will behave well, however, there are cases where the tumour bleeds internally after GK or FSR and this becomes critical. I am considering the GK option initially, however, considering all the effects & possible conditions after the GK, as you said, you would want to only do it once, i guess surgery is a better option for me.. ( however, i still cannot decide yet ). Same like you, i do not want to go through such painful times again, once is the only thing you'd pray for..
Being sick is very upsetting, and pain is inevitable.
I will pray hard for you too that your tumour will shrink & behave well.
God bless you!

Shanne

[shanne]

Hi vjh,

You are considered lucky in a way that the AN is not causing you any "visible" symptoms yet. May i know where is your AN located?
Mine is a 2.9cm x 2.3cm AN located at my balance nerve on my left, and its now pushing on my auditory nerve & caused some hearing loss on my left ear. I am too, struggling with my choice of treatment now. Im constantly reading up & researching on the net to find out more about the 2 options i have ( microsurgery & radiosurgery- Gamma Knife ).  Here's a useful site about ANs, and patients shares their stories here too. Do check this out & research more before you make a decision.
URL: http://www.anarchive.org/
Good Luck!

Rgds,
Shanne

[Kathleen_Mc]

Certainly surgery is riskier when looking at saving your hearing, as well as balance as the two nerves are next to each other, than gamma knife....what is your major concern? If it is to save your hearing gamma is the way to go and needs to be done while the tumor is small to be most effective and give space should it not be effective and growth continues. The problem with gamma though, if it is not effective, is it makes the tumor harder to surgically remove and sometimes total removal not possible. Many people choose to do nothing and just be monitored until something has to be done, these are very small growing tumors in most people and there is a chance someone can live out thier life and never have to have intervention of any kind. What do the doctors recommend? Kathleen

[jamie]

The problem with gamma though, if it is not effective, is it makes the tumor harder to surgically remove and sometimes total removal not possible.

That claim has not been substantiated. It has been reported to be harder in some cases, the same in some, and easier in some. It depends on how an individual's body, and the tumor react to the radiation, and how much scar tissue there is. Surgery to resect tumors that have previously been surgically resected have also been reported to be more difficult in some patients, due to scar tissue, the same as radiosurgery.

[Mark]

I would agree with Jamie's comments and also add that probably the greater difficulty in drawing such conclusions is the variability of the surgeons involved. If the same surgeons always performed the surgery in these type of situtations one could probably get a better read on level of difficulty. The fact is they are handled by surgeons of all different skill levels and experience with AN's. I'm sure that has some influence on anecdotal comments that get relayed around relative to the difficulty or ease of such procedures

Mark

[ppearl214]

Hi vjh (and all!)

Based on my appt  today with my neurosurgeon, who also has  experience in GK, we decided  to put  me in "wait" mode... as my AN is  smaller  than your's, it was an easy decision as mine has not grown in the past 3  months.... have you had  comparitive MRI's to see the growth  over the  past months?  (ie; 3 mos, 6 mos, etc)  My neurosurgeon shared with me today that since they are very slow growing, they  may  not even grow  as fast as we think (each person is different, of course), but maybe begin to monitor... especially if you are not having symptoms at this point.   Risks  far outweigh  benefits in our situations and take the time to research all procedures beforehand....We have the advantage on this  as these things grow slow, so take the time to weigh out all options as long as everything else is "functioning"..... the more I am researching on this, the  happier I am that I have time to research as much as I can beforehand.

just my opinion......

Phyl

[Kathleen_Mc]

Jamie: I stand corrected then, please take into consideration I am Canadian and our doctors etc. can be a little behind in the gamma info., we in Toronto are just getting gamma this fall and I guess my info. sources could be behind or mis-informed. Kathleen

[jamie]

Jamie: I stand corrected then, please take into consideration I am Canadian and our doctors etc. can be a little behind in the gamma info., we in Toronto are just getting gamma this fall and I guess my info. sources could be behind or mis-informed. Kathleen

I'm sorry, I didn't mean at all to come across as correcting you directly, I meant to reply to that notion in general. It's not just perpetuated in Canada either, many surgeons here say the same thing. And in some cases it may actually be harder, but surgeons who use both radiosurgery and microsurgery contend that generally they notice no difference in difficulty of surgery after radiosurgery, and they are the most unbiased in my opinion. I'm glad to hear Toronto is getting gamma knife soon, my family is from there.   

[Desilu]

If you haven't made a decision yet, here is another option. Dr. Brackmann at the House Ear Clinic in Los Angeles will look at your MRI films if you send them to him. He will give you his opinion. If you are interested email me and I'll give you the details. I was on the wait and watch program for 5 years. This year my tumor really started to grow. I am now 7 weeks post surgery and feeling great. Good luck to you on which ever decision you make. Ann

[antoinette]

Katleen, I just noticed that you are in Toronto.
So do I. I wonder if you perhaps go to Sunnybrook for your AN. I have been in touch with doctors who do FSRin Toronto since 96 straight from the protocole of john Hopkins, In Calgary the GK doctor is also from the States and will remain there, I guess he likes it.
I tried to thank you for your post on the waiting topic but couldn't find a way . I also wanted to tell you that it has remain unchanged since 2000.
antoinette

[Nancy Drew]

vjharris, I can relate to you except my AN (diagnosed one month ago) is very small,4x5 mm, and I also have no hearing loss.I don't think I have any significant symptoms.Have headaches (could be my history of these), maybe some tinnitis, dizziness/vertigo (which is why I went to the doc in the first place), but otherwise nothing else.I am in the wait and watch mode since there is no hearing loss or other real symptoms.I also was told from my doc that this tumor could just lie dormant for the rest of my life.Time only tells.If the time comes with hearing loss or tumor growth by MRI, then the doc says Gamma Knife for me.Since I am so new to this, I have no clue.I hear pros and cons for each, and I sway back and forth.Right now my biggest worry is just trying to come to terms with this thing in my head.Also freaks me out to know that 10 in million each year get diagnosed.What luck!I wish for you the best whatever you decide to do.I do think it is a difficult decision when you don't have any symptoms.I have this feeling of "if it don't hurt, then don't mess!!! with it.I hope I don't regret this down the road.

[Vincent87]

VJ:  My mom's AN was also spotted on a routine MRI.  Had no symptoms except for some ringing in her ears especially in bed at night.  Her AN was monitored for about three years and then last year the GK doctor said this was the time to do it, that anything bigger than 3.0cm would require a "cut."  We thought we asked all the right questions:  Would her age, 69, reduce her success rate...would any pre-existing health concerns become worse...fatality rate...you name it and we thought we asked it...My advise is to keep asking questions.  You're starting at a good place, this forum.  Now from my mom's neurologist in his conversations with Mom's GK doctor that now the GK guy is saying Mom waited too long.  I have copies of his op notes and entries from pre-surgery meetings.  Let's just say it's in black and white and he had only seriously pushed for GK last year.  The truth (for you and your family) is out there.  It's all very overwhelming and scary.  But keep asking questions.  Sending you good thoughts.