Close to making a decision

[mandy721]

After a blitz of appointments this week, my husband is close to making a decision and setting a date.  As I mentioned in a previous post, 4 of the 5 doctors felt the translab approach was the only option.  Dr. Sisti, at Columbia,  thinks a retrosigmoid approach is worth a try.  My late night research came up with a modified retrosigmoid technique that sounds like what Dr. Sisti described.  Have any of you had this procedure? 

[Jim Scott]

Miranda ~

I underwent a partial resection of my AN using (as far as I know) a 'conventional' retrosigmoid approach.  The remaining tumor was radiated via FSR.  This approach yielded excellent results.

However, the research I've seen on the modified retrosigmoid technique appears to be successful in increasing the likelihood of hearing preservation and avoiding facial paralysis, with an almost-infinitesimal percentage of re-growth (less than 3%).   Part of the challenge for the surgeon is that, even with an MRI scan, he or she won't know exactly what they're dealing with until the skull is opened and the tumor is exposed.  This occasionally necessitates an on-the-spot change in approach but an experienced neurosurgeon can deal with this kind of situation.

I would ask a few more questions of Dr. Sisti regarding his experience with and expectations for the 'modified' retrosigmoid approach surgery he's suggested.  The fact remains that no doctor can or will guarantee the precise outcome of acoustic neuroma removal surgery, including hearing retention and facial mobility, post-op.  That having been noted, I offer my best wishes to you and your husband and hope that he can reach a decision on the type of surgery he'll have and the doctor who'll perform it (which is always a difficult choice) and obtain a firm surgery date, soon.  If we can assist either of you in any way, just ask. 

Jim     

[leapyrtwins]

Miranda -

I had a conventional retrosigmoid.  However, my neurotologist gave me the option of translab or retrosigmoid (and radiation, but that's another story).  I chose retrosigmoid because I didn't want to just lose the fairly decent hearing I had in my AN ear.  Retrosigmoid gave me at the least the chance of saying "I tried" when it came to saving my hearing.

In my case, my AN was wrapped around my hearing nerve and in order to remove the entire tumor, the docs sacrificed the hearing nerve.  In other words, I gambled and I lost.  But I've never been sorry that I asked my docs to try.   

Jan

[4cm in Pacific Northwest]

What is the size of your tumor? Do you still have any hearing in that AN tumor affected side?

DHM

[mandy721]

DHM  and Jan -

The tumor is 3.1 cm in the right ear and my husband still has some hearing in the ear and over-all excellent word recognition. All of the doctors commented on that and basically said that it is too bad that he will loose his hearing with a translab approach.  Dr. Sisti was the only one to say lets try to save the hearing.  My mouth just about dropped to the floor.   He  told us that his two main goals are to save hearing in the right ear and preserve the facial nerve.   He was  very surprised that there was any hearing left in the ear and thinks that is is worth doing the retrosigmoid.    Much like Jan, Ken wants to attempt to save the remaining hearing. Knowing there are no guaranteed outcomes in this life, he want to take the gamble on this one.   A His major concern in going this this route  is the possiblity of long-term headaches after surgery.   He has frequent  headaches now and doesn't want more!  After speaking with Dr. Sisti yesterday afternoon, I am almost certain he is going to go with the retrosigmoid.   

Miranda

[CHD63]

Miranda .....

Ken (and you) will feel so much better once you have made your decision on treatment.  It is nerve-wracking to be in the research/decision-making phase.  That usually eases up after you make your decision and you can relax about the "What should we do?"s and set about planning for the actual treatment.

Just want to state again that I had a teensy, mild, tired-type headache post-op (from my retrosigmoid) and that was it ..... nothing later but the usual mild tired or barometric pressure headaches I had long before the AN was even there.  So, it is not a certainty at all that he will have headaches.  Reality is, of course, that he could have them but they are not by any means automatic with retrosigmoid.

Keep us posted.

Clarice

[Jim Scott]

Hello again, Miranda ~

For what it's worth to you and your husband as he makes a surgery decision: as I stated in my previous post, I underwent the retrosigmoid approach removal surgery and I did not experience any post-op headaches at all.  That isn't any guarantee that your husband won't have any post-op headaches, just an anecdotal comment that I thought might be useful in your husbands situation.

Jim

[nteeman]

Hello again, Miranda ~

For what it's worth to you and your husband as he makes a surgery decision: as I stated in my previous post, I underwent the retrosigmoid approach removal surgery and I did not experience any post-op headaches at all.  That isn't any guarantee that your husband won't have any post-op headaches, just an anecdotal comment that I thought might be useful in your husbands situation.

Jim

+1

Like Jim I have not had any notable headaches after surgery. Good luck!

Neal

[texsooner]

I'm another one that had retrosigmoid and no headaches. I did have headaches pre-surgery thanks to the unwelcome intruder(AN).

Patrick

[leapyrtwins]

Miranda -

I'm another one who had retrosigmoid and don't suffer headaches.  While that's no guarantee that Ken won't have them either, it does reinforce the idea that everyone's AN Journey is unique - and the same can be said of post treatment "issues".

I think Ken, and Dr. Sisti, are wise to try to save the hearing.  I'm SSD, and while it's not the end of the world (I have a BAHA), if I had the choice I'd take my "normal" hearing any day.

Jan

[4cm in Pacific Northwest]

I had the retrosygmoid and did end up with facial issues and single sided deafness. I do not have headaches- (unless of course my teenager is having one of her teenage talk back moments… “I will get through these teenage years … I will get through these teenage years…�)

I do not know of anyone with a 3cm + acoustic neuroma who retained their hearing- after surgery. If the tumor is a Meningioma there is a chance of hearing preservation as this will peel of the acoustic nerve easier … but not an acoustic neuroma. I oscillated between the retrosygmoid and the translab. I only chose the retrosygmoid because my tumor was atypical and there was speculation that it “might� be a Meningioma. It turned out to be an acoustic neuroma… and with the more difficult access point of entry the facial nerve was damaged. If I were to do this again, which I cannot, I would have the translab.

DHM (also know as “4�)

[Syl]

Don't know what a modified retrosig procedure is, can you elaborate?

I had the retrosig procedure for my 1.5cm AN. I didn't have headaches pre-surgery. I do have them now. However, I am getting treatment with Pamelor, which has thus far helped a great deal. I don't get headaches as often and they are not as intese.

My word recognition was around 60% pre-surgery. It's at 20% post-op. My face if fine.

Do I regret chosing retrosig? No, not at all.

Syl

[4cm in Pacific Northwest]

I do not know of anyone with a 3cm + acoustic neuroma who retained their hearing- after surgery. If the tumor is a Meningioma there is a chance of hearing preservation as this will peel of the acoustic nerve easier … but not an acoustic neuroma.

Wow I totally take back what I said- NOW!

We just had a 3cm AN retain hearing after surgery folks!!!

Read this

http://anausa.org/forum/index.php?topic=10220.msg117407#msg117407


Blew me out-of-the-water...

Great news huh? (or was that "eh"  for my fellow Canadians?)

DHM