Author Topic: Newly DX'd and lots of questions  (Read 5262 times)

Ric

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Newly DX'd and lots of questions
« on: May 09, 2007, 04:53:25 pm »
Hi Everyone,

I'm newly diagnosed with a 5 mm AN from Stanford.  My Doctor is suppose to be one of the best.  I am having to decide between middle fossa surgery or radiation.  Neither of them appeal to me. :-\  Apparently I have a 50% chance of loosing hearing with either approach, although with radiation i'm told hear loss is over a 5 year period.  30%chance of facial paralysis, which i'm told would move than likely be temporary.  I am scared to death of surgery, but i'm told that if radiation does not shrink the tumor than my chances of surgical removal without damaging all three nerves (facial, balance and hear) is nill because the radiation damages those nerves?   
I am also very concerned about headaches and wonder what peoples experience is with the middle fossa approach?    And I would like to hear from people about CSF leakage, and how that is repaired if need be, b/c my doc did not go into it.  He is good and nice but always pressed for time, and every time I need to see him means a waittime and a long drive to and from, and I'm feeling like I need to get info from other sources.  I'm looking into 2 and third opionions but would like to hear from folks who have been through this ;)
Sincerely
Can't decide (Ric)

Yvette

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Re: Newly DX'd and lots of questions
« Reply #1 on: May 09, 2007, 08:13:14 pm »
Hi Ric, I am 3 mos post surgery. 3cm (1 inch) AN removed translab style. I didn't have your options because of the size of the tumor. My Doctors were Link and Driscol from the Mayo Clinic in MN. As a result of surgery I now am deaf on one side ,but they were able to see very well with my type of surgery and thus protect the facial nerves. I had no complications to speak of, a few temporary things that got better over the weeks and now am doing great. For myself, I wanted that thing OUT of my head. I didn't want to watch it or wait on it, or chance having to go back in after in at a later date. I feel good. Your tumor is little so you have more choices. Even with my big ol' tumor-no csf leaks. Be sure you're surgeon has done at a minimum 500 surgeries; you don't want anyone who is still practicing. My 3 month MRI shows every last bit of it is gone, and I sleep very well as a result (especially with my good ear down on the pillow!) Best wishes, Yvette
3cm translab Jan. 2007 performed at Mayo Clinic MN. by Drs. Link and Driscoll. SSD but doing great!

mema

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Re: Newly DX'd and lots of questions
« Reply #2 on: May 10, 2007, 07:35:11 am »
Ric,

     My AN was 8mm .  I live in Florida and traveled to JHH in Baltimore, MD Anderson in Orlando, and Thomas Jefferson in Philadelphia, plus numerous phone calls to other states.  While sitting in the office of Thomas Jefferson, a patient post-op surgery 10 yrs was back because it had grown.  Another patient had a towel held to his head, I guess leakage of some sort.  I basically made up my mind at that moment to go for radiation.  I too was told I would loose hearing over a few year period.  I lost 90% hearing six months after FSR treatment. Drs. were surprised.  I do suffer headaches and other symptoms too.  I did not have any facial paralysis.  I guess I don't know which is the greater of the two evils.  Maybe watch and wait would be a better option right now.  You're lucky to have found this forum, I hadn't until just recently.  It's a God send to me.  Good luck , I know it's a hard choice.




                                                                  mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

mema

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Re: Newly DX'd and lots of questions
« Reply #3 on: May 10, 2007, 08:18:10 am »
Ric,

       I hope I didn't sound like doom and gloom, because I'm sure for everyone of us who questions either choice There must be alot of success cases out there of surgery and radiation that people don't post because they are perfectly fine or symptom free.




                                                                                                 mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

ppearl214

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Re: Newly DX'd and lots of questions
« Reply #4 on: May 10, 2007, 08:38:52 am »
hi Ric and welcome. Good to see you here and hoping the forum discussions are helping you out.

Stanford... fantastic place for AN treatments, regardless if surgery or radiation.  I had Cyberknife radiosurgery at Beth Israel in Boston 13 months ago.  My AN was just 1cm at the time of treatment (at the age of *coff* 45!).   I have 100% hearing retention for what it was at the time of treatment (hearing loss was minimal at time of treatment -- just below "normal" range and voice recognition at 96%).  As with any AN treatment, I have also run into small bouts of vertigo and balance issues, but, in my case, life has certainly moved forward. Since treatment, I've married, I've traveled to the UK, I've moved my apt, I work over 40 hrs a week and doing fine.  So, that is the long/short of my AN journey thus far.

The are many threads in the 'Pre-Treatment' forum as well as in the "Archives" that discuss many of us that were in the decision-making process (incl. a thread I started early last year) and you will read many that go through the decision making process and how we came to our decisions. The great news is... your AN is small, it's benign (but just in a crappy spot), you have time to sit back and ponder and investigate and ask questions and to do your homework.  The info available here may be a bit overwhelming at times, so, just take a deep breath, sit back with your favorite beverage and know that we are all here to support you during this time.

mema is also correct that many are doing fine and may not be posting.... but, know that many of us that are "posties" (post-treatment) remain here, dedicated to helping others that come here to seek answers, comfort and support.  Many of us are also available on private message (PM emails) as well as phone (pls see thread re: WTT List).

Hang in there... and know we are here for you.
Again, welcome,
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellenmn

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Re: Newly DX'd and lots of questions
« Reply #5 on: May 10, 2007, 09:41:52 am »
Ric
I had radiation treatment (single dose) 4 yrs ago on a 1.5 cm AN other than a few headaches I felt great. I already had some hearing loss but it stayed the same. I have carried on a completely normal life. Long work hours, exercise, and traveling all over.
Then about 5 months ago things changed an the AN that had started to shrink reversed coarse and grew rapidly. I now have no Choice but to have the surgery. You can see my story under new member from ILL. Anyway my doctors have told me I won't have any hearing but they feel really good about being able to save the facial nerve.

If I had to do it over I would probably still opt for the radiation first, and the six doctors that I have seen since the regrowth all feel that I had made the right decision having the radiation. The percentage of people that radiation doesn’t help is so small that I feel it’s worth the risk. (I was just one of the unlucky few, but I had 4 yrs of very normal life)

Hang in there.

macintosh

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Re: Newly DX'd and lots of questions
« Reply #6 on: May 10, 2007, 10:28:26 am »
I did a lot of research before deciding on radiation for a small AN (7mm) in January of 2007. I've had no side effects so far. From my reading of the medical literature, there is a growing consensus that radiation is becoming the standard treatment for small ANs. The website at the University of Pittsburgh

www.acousticneuroma.neurosurgery.pitt.edu

is a good resource for making a lot of information easily accessible.

I know that there are no guarantees that things will remain this stable for me indefinitely, but I have no second thoughts about my decision.

mac

tuckerro

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Re: Newly DX'd and lots of questions
« Reply #7 on: May 10, 2007, 10:46:08 am »
I had middle fossa, and travelled out of state, and out of my insurance plan to see Dr. Brackmann at the House Ear Clinic in Los Angeles.  If I were you, based upon your statement of your physician being busy, and not having time to answer questions, I would call Dr. Brackmann, who will speak with you, review your MRI scans, and talk frankly with you about your options, and his opinion.  He is an amazing man.  After seeing him do surgeries the time I was there with my surgery, i'm amazed that he takes the time to review MRIs of many, many other potential patients, calls them when he says he will, and is quite frank about possible course of treatment.  he doesn't sell his services, but is just willing to speak in his experience, and help those of us that have AN's, and need to know what to do about them. 

You need to do your research on the procedures available, and the surgeon you are dealing with, to get their writings on the issue, results, so you can be comfortable with who you are trusting to do your procedure.  Good luck in your search, and feel free to ask me or anyone else if you have any questions.  With AN treatment and diagnosis, I discovered there is no such thing as a "stupid question", so just remember, those of us post-surgery types were all in your shoes once, and so we may have asked some of the million questions floating around in your head.  Again, good luck.

RON T.
----------------------------------------------------
14x7 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
September 26, 2006

Mark

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Re: Newly DX'd and lots of questions
« Reply #8 on: May 10, 2007, 12:48:22 pm »
Ric,

I'd really like to know who you saw at Stanford, but based on the misinformation on the radiation side of the issue I'll go out on a limb and say Roberson or Jackler since they solely do surgery, but are certainly excellent at it. I'm not sure where this "radiation patients lose all hearing after 5 years" comes from because I've yet to see such a study. I'm closing out six years and mine hasn't changed since the treatment, so I guess I should be getting nervous  ;)

Here is recap of the different option statistics from Dr. Medbery who monitors the CPSG site which might help with some of your questions

http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=11349

Mark

CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Mark

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Re: Newly DX'd and lots of questions
« Reply #9 on: May 11, 2007, 03:00:43 pm »
Bruce,

Glad the links are helpful. At the end of the day everyone has to make their own determinations of what information they use in making a decision. However, I always feel there is greater strength in the content of two forums instead of just one. So, whenever I see something AN related on the CPSG board I assume it might have some value to the readers here. Especially, given the doctor perpsective as opposed to that of just us non clinical folks  ;D

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

lmarek

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Re: Newly DX'd and lots of questions
« Reply #10 on: May 11, 2007, 08:28:20 pm »
Ric-
I had a 12mm tumor removed with the middle fossa approach.  I considered a radiation treatment, however, the one side effect of radiation that scared me most was that, even though the chances are small, there is the chance that malignant cancer can develop from treating the bening tumor.  I'm now 6 months post-op, and the only symptom I have now is a little bit of ringing in my left ear where the tumor is.  I had severe hearing loss before the surgery, but once they removed the tumor, my hearing returned to almost 100%.  I experienced headaches for the first few months, but have had none recently.  I went to the House Ear Clinic in LA and Dr. Fayad and Dr. Schwartz were my surgeons.  They did an amazing job, and I couldn't have asked for better results.

I hope this helps, and best of luck to you!

Lindsay
Lindsay
Boulder, CO

ppearl214

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Re: Newly DX'd and lots of questions
« Reply #11 on: May 11, 2007, 09:16:28 pm »
Hi Lindsey and welcome. I'm sorry to see you have joined the ranks here but glad you found us.

Although, for those of us that had options re: our AN treatments, please know that the number of reported cases of malignancy from radio"surgery" can be counted on one hand vs. the numbers of folks that have been treated by radiosurgery. I have more of a chance of being hit by a MAC truck by walking across the street, getting hit by lightening or getting cancer from 2nd hand smoke.

I completely respect each and everyone's decision-making process and do not question why some choose one treatment option over another... yet, please know that many doctors, notable microsurgeons, will use the cancer "scare tactic" when discussing options of AN treatments with potential patients to sway them from radiation towards microsurgery.  Please also note that radiosurgery has now been shown to be a leading contender in small AN treatment options.

Please do a "search" here on the site by looking for radiation cancer to see many of the threads that have been started here noting this exact topic.

I'm glad to see you are doing well and continued wellness to you.
Phyl

Ric-
I had a 12mm tumor removed with the middle fossa approach.  I considered a radiation treatment, however, the one side effect of radiation that scared me most was that, even though the chances are small, there is the chance that malignant cancer can develop from treating the bening tumor.  I'm now 6 months post-op, and the only symptom I have now is a little bit of ringing in my left ear where the tumor is.  I had severe hearing loss before the surgery, but once they removed the tumor, my hearing returned to almost 100%.  I experienced headaches for the first few months, but have had none recently.  I went to the House Ear Clinic in LA and Dr. Fayad and Dr. Schwartz were my surgeons.  They did an amazing job, and I couldn't have asked for better results.

I hope this helps, and best of luck to you!

Lindsay
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: Newly DX'd and lots of questions
« Reply #12 on: May 15, 2007, 04:11:54 pm »
Hi Ric: check out my threads on Stanford and my cyber knife experience. Like you, I really didn't want surgery. It took me three separate opinions (all surgical) before I made an appointment with Dr. Stephen Chang at Stanford. He was great as he is both a surgeon and a radio surgeon.  ( I had a prior consultation with Dr. Jackler and scheduled myself for surgery only to do a gut check and have Mark, Brucifer and Phyllis weigh in on my post). You don't need to make a desicion right away, take time to get use to the fact that you have a BENIGN Tumor in your head and while I don't want to sound Pollyana: we in the AN world are lucky.  My hearing was going to be shot with surgery- Jackler was the only surgeon out of the three I consulted who thought I had a 5-10% chance of preserving it. With Dr. Chang and radiation via cyber-knife- I have 92% speech discrimination and while what I call my "volume" frequency is 50% off, overall I think I am very lucky. Ironically the frequency I don't hear is my husband when he talks softly! I was always telling him to annunciate! (ah, marriage- poor guy really felt horrible that I really couldn't hear him ;D)

Surgery is the tried and true procedure, which is why the medical industry as a whole is pro-surgery: ie. they get the bugger out and it's done.  Radiation has been around 40 years with great results - Dr. Jackler did quote me 8 lethal cases out of 23,000ish= .0003478 chance that post radiation the tumor cells convert to cancer cells ( and would more hero experts please weigh in on this please- again this is the dumb farmer trying to put it into simple terms). 

Dr. Chang did quote me all the potential risks of surgery- and most of the surgeons had varying statistics but all about at the 80% range that all would go well with 20% chance of a potential complication of some kind... having said all that you will find many surgery posties who had great outcomes. 

Bottom line: if you can live with "dead tissue mass in your head" go for cyberknife or another form of raditation. But if you really "can't live with this thing in your head", get surgery.

Know we are here for you- Take care of yourself- Annie

Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Ric

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Re: Newly DX'd and lots of questions
« Reply #13 on: May 17, 2007, 04:33:14 pm »
Thanks to everyone's supportive responses!  Annie, I laughed so hard at your signature with your MMMMM  my shwonomma!  I could not get that song out of my head all night. Hearing your story was great. So I went for my consult with Dr. Iris Gibbs who is in radiation oncology at Stanford.  She is a very nice woman and was very informative, and explained things in a way that was very understandable to the average person.  She seem to think she could do GK or CK without me having any difficulties.   She felt the risk of facial nerve damage and headaches were almost nill, and she did expect for me to have some decline in my hearing over time, but assured me that the chance of a malignant tumor developing from radiation was lower than the risk of dying from surgery!  So I'm at least considering radiation as a possible treatment me, and feeling a liitle relief because before I would not even consider it.  It SEEMS that it may have the minimal side effects, and since I have a very active 4 year old that sounds good to me.  I am going to take the advice of some others on this forum and send my films to HEI and try to have a consult there.   I'm still having moments of "Freaking Out!" but they are not as frequent.............My son wants to play Tom and Jerry and says to me "Mom we are gonna need a CAT! and maybe a RAT" OH MY, he is helping me to be strong.  Oops sorry for the interuption, in my email.   Bless you to all those folks who have been through this and spend so much time helping us Newbies through it also.   ;D
Ric