Just diagnosed in iowa

[Griff13]

Left side AN(2.5cmx1.5) one dr. Recommended retrosigmoid and the other translab. My hearing is still at 80-90%. Leaning towards retrosigmoid with Dr. Carfrae and Hirschl at Mercy in Des Moines. University of Iowa suggested translab. Not wanting to give up on my hearing with translab procedure.
Any thoughts or suggestions?
Thanks

[Cheryl R]

A fellow Iowan and goes to Iowa City.    This is a not common surgery and you want to make sure you are going to a VERY experienced surgeon who does these on a weekly basis.     I live near Des Moines and go to UIHC and am NF2.    Gantz has took care of my 3 tumors and we are so lucky to have one who now is doing 80 or more ANs a year in Iowa. Plus the nursing care is good with nurses who know it well.      He does not do retrosigmoid.     There can be a good chance you would lose it anyway with the retro.    Having one sided hearing is not as totally bad as you think.      One does not know what damage a tumor has done to the nerves until one has the surgery as it's location plays a part in what it can do.             I would rethink about having it done in Des Moines and make sure to know how many they do and what the results are.   There will be some post op issues where ever it is done which do take some time to recover from.          I can answer any questions you may have about Iowa City.         I wish you well with what you do decide.                           Cheryl R     

[ANGuy]

No suggestions since I haven't had surgery and based on my very limited knowledge I don't see yours as being black and white as to the best way to proceed.  With your size, unless your Drs. explained some particular urgency regarding your specific situation, I would say that you have time to explore the merits of the different types of treatments including "observation" which is called "watching and waiting" around here.

You are similar to me in that you are probably a good candidate for several choices.  This can be frustrating on some levels because ultimately YOU will be deciding which way to go.  Some find out that they have a tumor when it is very large.  They only have one path and a relatively short period of time to get treatment.  They are spared a lot of the stress about deciding how to proceed, but then they don't have any choices either.

I will say that I am sorry you have an AN.  There is a lot of good info here and you will likely find not only people with identical circumstances, but that also live in your area and can rate their experiences with local Drs.

I can also say that dealing with the concept of having a tumor in your head will get easier over the next few weeks.  You will become less anxious about it, even if you become more anxious in the short term as you read of the various complications that can come from these.

I've watched this video a couple of times.  I think he is very articulate and thoughtful and the interview is very well presented.  I find him inspiring because he focuses his discussion on his concern for his family.  He tells it like it is regarding his fears, complications, and recovery, but what stands out, for me, is his concern for those around him, not himself.

https://www.anausa.org/component/content/article?id=314

[Mimispree]

I am sorry you get to join our wonderful forum. 

I just want to tell you that it was suggested to me to do as much research as possible on the different surgical options, find a teaching hospital with very experienced surgeons and medical team who do Gamma Knife and traditional surgeries, and request information on their post-surgical statistics regarding nerve preservation, etc. 

Research this forum as well.  You can put keywords into the search box for in-depth information and use this forum to learn from the experience of others.

I had Translab, and the loss of hearing requires a bit of adapting, but it's not as bad to deal with as I expected.  In my case, the placement of the tumor was the deciding factor and my surgeons took the time to explain why they chose Translab over any other approach.  I only had a small amount of time to do the research, but thanks to the Internet and the ability to digitally send your MRI to other surgeons, you should be able to get your questions answered.

Research, write questions down, and make your health your priority.  Invite your caregiver(s) to read this forum too so they will know what to expect.

Keep us all posted!



 

[Mickey]

Hi Griff 13.... I see you have a small tumor and very good hearing....  With only knowing that,  if you have minor symptoms check out W+W taking your time while making the decisions... We have a W+W board which some people (like myself) have made a permanent way of life out of... Best wishes, Mickey

[v357139]

You might also want to ask the doctor that proposed retrosig what chance he gives you for saving your hearing.  I had a 2.6cm x 2.7cm.  Two doctors told me there was a small/tiny chance of saving hearing.  Three other doctors said virtually no chance.  Make sure you hear what he thinks your chances are.  You don't want to assume.

I have also heard a Dr at Stanford claiming to have very good results saving hearing with Cyberknife, if you are interested in that direction.  Good luck and keep us posted.

[Griff13]

Thanks for the info. Mercy in Des Moines does 5-6 of these retro sigmoid surgeries a year. While Dr. Gantz and Hansen at the University of Iowa do 70-80 translabs a year. I don't want to wait and watch to long. Would like to put this behind me and move on. Have already switched my mind three times. Set up surgery for retro and now I'm leaning back towards Iowa city because the high volume of surgeries. Have not seen anything negative about Iowa city. Nothing but high praise for Dr. Gantz and Hansen. I definitely don't want to have facial issues and headaches. Which procedure gives you a better quality of life after surgery? Willing to have one sided hearing if that means less headaches and a better chance of preserving the nerves involved.

Thanks again

[sandyinwisconsin]

Please go to the best of the best.  Don't settle for less experience.

Sandy

[Cheryl R]

Good to hear you are leaning toward Iowa City.     This surgery though has no guarantees anywhere as what the tumor location and size is also determines how it may go.    Knowing the surgeon has done more surgeries means there is better chance of doing better with the surgery.          That is what is so frustrating about not knowing ahead what may happen.      The chance of facial issues is less than you think other than if the nerve is severed.   That is more when a tumor is actually on the facial nerve.        Many facial issues are temporary also.    The balance issue and fatigue is likely and losing the hearing.    One adjusts more than they think they will after and do get back to their normal life is most cases.     You see on here what seems like so many problems but the ones who do well are on here for a time and then are back to their lives and do not stay.    I will PM you too.
                             Cheryl R

[v357139]

I do not represent the ANA, but I know they recommend that you pick a surgical team with substantial experience and track record of success.  Both procedures can go very well, in the hands of experienced surgeons.