ANA Discussion Forum
General Category => Inquiries => Topic started by: stevek on May 16, 2011, 08:42:54 pm
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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.
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I'm so sorry to hear this news Steve. Cyber hugs and best wishes as you make your way .
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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
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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
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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
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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
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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.
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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
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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.
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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
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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
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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.
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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
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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
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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!
;D
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Steve, So sorry to have of the regrowth. I will keep you in my prayers and know that Dr. Chen is a very competent and wonderful sugeon. He will not guide you wrong. Was the regrowth large? Just wandering. I just had my year check up and he said no MRI for 5 years makes me a little nervous but I am good accept for my hearing loss. Tweety (Nancy)
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Good news. We used radiation to zap the 2cm regrowth last Wednesday in Pittsburgh. One day outpatient single treatment. After conversations with my Dr.'s we decided to just get it over with instead of put it off. The worst part was having a metal cage drilled into my skull and wearing it for 7 hours. Hoping this killed the bastard. Follow up MRI in December. Thanks for all the love and support.
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Steve ......
Glad to know you had treatment last week. Hopefully this will, indeed, kill it once and for all!
Prayers for success of the treatment and good health from here on ......
Clarice
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Steve ~
Thanks for the update. I truly hope the radiation does the job and the AN finally 'dies'.
Jim
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Hi Steve.
I hope this does the trick and you enjoy your new job.
Best regards, Kenneth
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I did some research year ago before having my an removed about radiation, there was a study done on primates that found 10-15 years after the initial radiation they developed malignant brain tumors. I went the regular surgery route, and still dealing with csf leak since 2007. Wish I could share better results.
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There is only one substantiated report I am aware of concerning a radiation patient developing a malignant tumor at the site of their treated AN, and statistically speaking, it could very well have been totally circumstantial, as it was one case among many thousands. In fact, exhaustive research has demonstrated that the risk of radiation patients developing cancer is no more than that posed to the general population.
We can debate how much radiation was applied and in what manner to the primates in the study "CSF leak Mary" referred to, but it wouldn't change the fact that, with over 40 years of radiation treatments now behind us in the U.S. alone, there is no substantiated link between radiation treatments and cancer. Even four decades after treatment. If people were developing brain cancer in 10 to 15 years time, doctors would know about it and be seeking their patients' informed consent. This is clearly not the case.
TW
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As a Gamma Knife patient, I thank you, tumbleweed....
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Stevek,
I am so sorry to hear about your regrowth. What was your original treatment when you first found out you had an A N ? I had the gamma knife radiation last June and I go for my follow up MRI this coming August. It is always a concern that things are not going well but we always hope for the best.
The one thing I have experienced is facial weakness 4 months after my treatment. It has been 8 months now and it has gotten much better but still some lack of control of the right side of my face. I'd say I am about 70% improved and hoping it will continue to get better, but only 1 % of the people get what I got .
I hope you have success with what ever you choose to do, we are all wishing you well.
Chris Paulsen
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I think you should get another opinion on how to treat your tumor. I would call House in LA. They are the experts. Never listen to one doctor..or even two..they don't know everything
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Good news. We used radiation to zap the 2cm regrowth last Wednesday in Pittsburgh. One day outpatient single treatment. After conversations with my Dr.'s we decided to just get it over with instead of put it off. The worst part was having a metal cage drilled into my skull and wearing it for 7 hours. Hoping this killed the bastard. Follow up MRI in December. Thanks for all the love and support.
So Happy for you, as I said in my last post to you I had the Gamma Knife and having only one time to take care of it is the best. Good luck on you follow up in December. I have mine in August. Hang in there and keep us posted.
Chris P
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Crossing my fingers for you that the suckers DEAD!
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Wow great conversations by all on this thread. Much appreciated. I hope everyone is feeling well.