Damn, regrowth after 3 years

[stevek]

My Dr. called me today with the news.  I didn't see this coming at all.  Now I have to choose between RetroSig or radiation.  Anyone know of any pro's or con's either way? This is like a bad nightmare.

[opp2]

I'm so sorry to hear this news Steve. Cyber hugs and best wishes as you make your way .

[leapyrtwins]

Steve -

can't offer you any pros/cons, just wanted to say I'm sorry to hear this news 

Clarice just had surgery for regrowth at House and she's doing very well.  Maybe read some of her posts.

Best,

Jan

[Kaybo]

Steve-
So sorry you are having to go thru this...it is what we all fear at some point. I would echo what Jan said...read clarice's posts &/or PM her!

K

[CHD63]

Steve .....

Bummer.  I know that gut-wrenching feeling on reading/hearing "consistent with recurrent acoustic neuroma ....." (1.3 cm in February) I panicked at first.  Then, told myself "OK, calm down here now and check out all of the options."

Since I had retrosigmoid the first time in 2008, my choices were watch and wait, translab or radiation therapy.  Since they feel strongly my AN was caused from nasopharyngeal radium irradiation treatments as a kid, neither I nor the docs were real wild about the idea of more radiation on me.  Therefore, that left watch and wait or translab for me.

My first doc wanted to wait a year before another MRI.  I was not comfortable with that so sent all of my MRIs and audiograms to Dr. Rick Friedman at House Ear Institute in Los Angeles (now House Research Institute) in case anyone wants to know).  Both docs said I would lose all of my remaining hearing no matter what I did so that was no longer an issue.  Dr. Friedman felt I should wait no longer than six months before another scan.  His recommendation was translab for total removal sooner, rather than later to prevent any additional complications.

Bottom line:  Dr. Friedman and Dr. Marc Schwartz totally removed my AN last Wednesday, the 11th and Dr. Friedman put the Oticon Ponto Pro abutment in for the BAHA at the same time.  I feel great.  Going sight-seeing tomorrow.  Stitches out on Thursday morning and planning to fly home to West Virginia next Monday.

PM me if you have questions and/or want to talk.

Clarice

[msmaggie]

Well, that just stinks!    We all fear that phone call and know that it is always a possibility.  You will be in our thoughts as you make yet more decisions about what to do next.  Stay strong and as positive as possible!

Priscilla

[ombrerose4]

Hi Steve,

I know you are going through something that we all fear post AN surgery. I am so sorry. Just remember to take your time and check out all your options. We will all be thinking of you.

[kraynok2]

Steve,
   I'm sorry to hear of your news.  But think of it in this way--you went through this once and can do it again.  I know it's news none of us want to hear and do think about.  I had Dr. Chen and Dr. Aziz this past November at Allegheny.  They were very good.  I am sure that Dr. Chen will sit down with you and discuss your options.  You are doing the right thing by researching first.  I chose Dr. Chen because he had trained for a year at the House Clinic in LA where I wanted to go, but my husband asked if I could find somewhere closer.  You may want to also look into House and consult Dr. Freidman.  He is so good to get back to you immediately.  I e-mailed him recently when a new salivary gland tumor showed up.  He had nothing but praise for Dr. Chen.  Hang in there.  You will be in my thoughts and prayers.  Sandy

[Jwh]

so sorry!  I've had that dreaded phone call myself.  Not very pleasant to digest.  I opted for the Translab second time around.  There are some pros.....your body has already adjusted in terms of balance.  I wasn't dizzy, nauseous and rebounded pretty quickly.  Feel free to ask me any questions.

[Jim Scott]

Steve ~

Allow me to add my regrets that you've experienced re-growth of your AN.  This is relatively rare but of course, a risk we all have to face, like it or not.  I won't presume to advise you which procedure is best for you but these forums contain a wealth of information regarding the various pros and cons of radiation and surgery.  Some are obvious and some less so but I have to add the caveat that both carry some inherent risks.  Try not to become too depressed over the re-growth and focus on getting rid of it, permanently.  Of course, like all the previous posters, I wish you total success and can assure you that we're here for you and will support you all the way. 

Jim

[Tumbleweed]

So sorry to hear about your misfortune, Steve. Regrowth is what we all fear.

You asked about pros and cons of retrosigmoid microsurgery versus radiation. Here is a link to a comparison I made of microsurgery and radiosurgery. I think you'll find it helpful:
http://anausa.org/smf/index.php?topic=6670.0

Look partway down the page for my post.

If you should decide on retrosigmoid surgery, you might see if you can find a doctor who will perform that approach without retracting the cerebellum, which can purportedly cause cognitive and behavioral changes in some patients. One of our fellow forumites, mk (Marianna), recently underwent this type of surgery without cerebellar retraction and came through with flying colors. Unfortunately, I can't find the link to that thread, and the forum's search function doesn't appear to be working right now.

If it were me, and my previous surgery had failed, I would consider another type of treatment... or at least a consultation for same. You can ask Dr. Steven Chang (esteemed neurosurgeon and CyberKnife practitioner at Standford U Med Center) for a free consultation. His email address is sdchang@stanford.edu. I can't recommend him highly enough.

Good luck!

Best wishes,
TW

[Rivergirl]

That is such a bummer after all you have been through, so sorry, hope you find the strength to do what you have to.  Prayers for you.

[mk]

I am so sorry you are experiencing regrowth. Are they sure it is not just scar tissue? What is the size of the regrowth? I also wonder, why the neurosurgeons recommend retrosigmoid to deal with the regrowth. Is it because of the location? I always thought that translab is the preferred approach to deal with regrowth situations. Clarice may have more to comment on this.

My main advice is to research as much as possible, get many opinions before you chose a competent team that can deal with the regrowth. I saw that TW mentioned my situation, here is the thread describing my experience :http://www.anausa.org/smf/index.php?topic=15234.45.

Good luck keep us updated

Marianna

[CHD63]

Just quickly, Marianna .....

On a regrowth situation, surgeons do not like to go back in the same route because of scar tissue. Since Steve already had translab I am assuming that is why the retro recommendation.

Clarice

[stevek]

You are all very wonderful.  Thank you for your support, thoughts and prayers.  I really appreciate everyone's input.  I just started a new job 3 weeks ago after losing my previous job of 19 years.  I told my surgeon I wanted to wait a while because of this reason.  I would feel horrible going out on leave, depending on what course of action I take, after just getting hired.  I have some thinking to do.  Thank you all again.  I will be looking over the links some of you have posted.  I'll keep everyone posted on my decisions.  Peace!