Informal Survey

[cookiesecond]

Hi Suzanne,
My GP ordered the MRI that found my AN because of a back/neck injury.  I had been misdiagosed for several years and kinda put things on the back burner because I knew something was wrong and was scared to find out what. I now know you can't conquer what you won't confront!!!Iwas referred to a neurologist and then an ENT. Next I went to a neurotologist. He gave me literature to read and explained radiation and surgery.I was very impressed with him and really felt at ease with him. I had already lost 90%+ hearing on my AN side and was experiencing nausea and dizziness.He recommended surgery but did not push it.After researching I decided to have the translab approach. I had 5  months from diagnosis to surgery.I am still recovering as I had surgery 8-2-05. I did lose the rest of my hearing but I did not have any facial problems.They removed all of the tumor. I was in the hospital 6 days and got along very good. After being home about 2 weeks I developed meningitis and that was harder than the surgery. I was back in the hospital for 9 days. The meingitis slowed my recovery down a little but the only problrm I have now is occasional headaches and fatigue.I still get tired very easy and then I have headaches and sometimes I get dizzy but nothing like before the surgery.I thank God for my outcome and I would do it again. I struggled with which procedure to go with but after deciding I felt like a great weight had lifted. Dr. Cunningham is the neurotologist and my primary doctor. He is wonderful. Dr. Fukushima was the neurosurgeon and He is world renown for his work with ANs. I live in SC but I had surgery at Duke in NC.

I pray you will feel confident with your decision and have a great outcome.Family and friends are very important during this time.Take care and keep us posted.
Lynn

[shoegirl]

I can't thank all of you enough for sharing your experiences with me.  I have been very moved by them and continue to be astounded by your strength and courage.  Your stories give me comfort in knowing that I am not alone and hope for the future.  I truly feel fortunate to have the benefit of hearing all of your collective wisdom and advice.

I wish you all nothing but the best and continued success in your recoveries.

Thank you! Suzanne

[Kathleen_Mc]

Suzanne: Hi, hopefully my daughter will leave me alone for a minute or two.
1. When they found my orginal tumor I did not have a second opinion, I was all but dead and I didn't even think to. With my regrowth (orginal tumor regrew) I return to my orginal surgeon and was monitered by him for 5 years and then I asked for the sucker out. He had always said when I was ready he would do it (if it didn't become necessary before then, I wanted to finish having kids and wait until they were a little older). When I told him I was ready he refused to do it saying he couldn't justify it (likely a political thing) so I went to another doctor of a second opinion, he took it out.
2. My first tum or was too large and too critical for anything but surgery. With the regrowth I was offered gamma knife but declined, I really had nothing to save by it and would rather not have a big proton beam pointed at my head thank-you.
3. My orginal tumor was removed within two weeks of decovery. They regrowth was monitered for 5 and a half years
4. After my first resection I believed myself to be fine and ready to return to work around 3 months post-op. I realise now I was not. Looking back I was very tired, my judgement and concentration were impaired as well and I shouldn't have been back to work. Right now I am only 9 weeks post-op from the removal of the regrowth, better but still have along way to go.
5. N/A
6. I think if I had been offer gamma knife the first time around, if it had been a option I would have done it. But given that it wasn;t an option and the damage was done to the nerves even now post-op I would say I want the regrowtyh surgically removed
7. My first o.r. was Nov. 4 1990 at what is now known as the Western Division of the University Health network and the second at the Sunnybrook location of Sunnybrook and Women's Health Network both are here in Toronto, Canada
10. With my first surgery I don't recall being told pre-operatively that I would loose my hearing and that my balance and facial appearance would/could be affected, I do remember being told there was a 50% chance I would not survive the surgery and that post-op I may have to go into a rehab hospital to learn to walk, talk etc. again. I walked out of the hospital and went home 11 days post-op. The doctor was surprised.
This is a difficult time in your journey through surviving a.n., you will get through it.
Kathleen

[kat]

posted by Kat  UK

1 and 2 I had two consultations after my MRI scan which sowed a 2.2 cm AN . The first consultation was in Manchester
with Proff Ramsdens team ( My ENT specialist strongly recommended him ) They said that the tumour was pressing
on my brain stem and recommended surgery in 3 months time . They also thought that I did not have too much useful
hearing which would not be a great loss after surgery . Up to this moment I was feeling great with only tinnitus and
reduced hearing and was really not at all interested in 9 hours of brain surgery and long recovery and possible long
term side effects . I asked them about GK and FSR and only fairly negative opinions were given such as possibility of
malignancy difficulty of surgery if needed afterwards . I was back to square one . I managed to persuade my GP to request
an appointment in Sheffield about GK which I had with MR Kemeny confirmed that wait and see was not an option and
put me on a waiting list for GK .

3 I had GK treatment on the NHS 5 months later  . I was not in any hurry since I had holidays planned and since I was not
suffering I chose to have the free option rather that the quicker private route .

5 I felt fine almost immediately after the GK I only felt a bit tired like Jet lag for a few days but after that felt completely
recovered an carried on with my life as usual for 7 months . In the last few weeks I have experience som discomfort in my neck and some shooting pains in my head and ear on the side of the AN . I will be seeing a specialist in about 2 weeks about that.
6 It is ealrly days yet but yes I would choose GK rather than surgery.

7 I do not know if my AN has grown since I have not had another scan as yet.
8 I had my GK in UK Sheffield Royal Hallamshire Hospital .
9 There are too many to list but I recomment anyone trying to make a choice to visit as many sites as possible and be careful
with quest pages trying to look at case histories only for tumours about the same size as your own .
10 Too early to comment but I will know more after my first scan but so far so good .

[GM]

1.  Did you get a second opinions?  Nope...I saw the MRI...and I had an idea what they were testing for...couldn't miss the big white thing on the MRI 
2.  How many opinions did you get?  2 Doctors from the same hospital (Military...Portsmouth Naval Hospital).  Did they differ from the first?  No.
3.  How long after diagnosis did you get treatment?  I waited a month to gather up as much info as I could I scoured libraries, medical hospital libraries and the Internet.  Then I went to the Bahamas...I found out in June and had my Gamma Knife treatment in November of the same year.  What treatment did you choose?  GK
4.  How long after surgery did you feel better?  N/A
5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?  I really didn't feel bad before besides the hearing loss and the tinnitus.
6.  Would you choose the same treatment option again?  Yes   If no, what would you do different?
7.  How long has it been since your treatment?  2 years   Has your AN grown?  slightly from 1.8 cm - 2.0 cm
8.  Where did you get your surgery/radiation?  University of Virginia  Dr. Steiner
9.  Any sites you would recommend reading?   Yes

This one to find out about your doctor:

http://www.vahealthprovider.com/

This one to help deal with the tinitus:

http://p080.ezboard.com/btinnitussupport92262

and this one for AN info:

http://www.med.umn.edu/otol/library/aneuroma/index.htm


10.  Did your treatment accomplish what you wanted it to?  Kinda, so far my hearing level is pretty much the same in my AN ear, I would have liked the tumor to collapse upon itself...but I'm optomistic!   If so, what were the results?  Still can hear!! 

[tgentile]

1.  Did you get a second opinions? Yes.

2.  How many opinions did you get?  Two. Did they differ from the first? Very similiar. Both were with skull base neurosurgeons. I must admit that I didn't consider radiation.

3.  How long after diagnosis did you get treatment?  Diagnosed 9/1/05 Removed 11/3/05 What treatment did you choose? Surgery, suboccipital, 1.7cm x 8mm.

4.  How long after surgery did you feel better? About 2 1/2 weeks. Still a bit dizzy but getting better every day. I'm going back to the office after the holidays. I've started working from home already though.
 
6.  Would you choose the same treatment option again? Yes, with the same surgical team.

7.  How long has it been since your treatment? Just over 30 days.

8.  Where did you get your surgery/radiation? Mt.Sinai in NYC.

9.  Any sites you would recommend reading? Be careful what you read. Some of it is outdated. It seems that there are so many negative outcomes reported and few positive reports. Do not get caught up in the "what if's". No matter what procedure you choose you will recover. Some of it depends on your attitude and your will to fight. No whining. No complaining.

Everybody will have a different outcome. Minimize problems by selecting a skilled team. Keep a positive attitude. ANs are benign. If you had to choose to have a tumor in your head, this is the one. Think of all of the less fortunate folks with medical problems. At least you can choose to be cured.

10.  Did your treatment accomplish what you wanted it to? I would say yes.  If so, what were the results? No tumor in my head, so I'm told. No facial problems and I can still hear. Ringing is still there but I've had that for a couple of years now so its become "normal".

The things I have learned from all of this...
Enjoy your time with family and friends. Hold those moments like gold. You don't get them back.
Laugh... a lot.

[Goh]

Hi Suzanne,

               Sorry for the late response, Only saw yr email today.

(1) Yes I did get a second opinion

(2)  My first opinion was from a ENT specialist who recommended a translab surgery (my AN was 2cm by 1.8cm on the left and I had lost all useful hearing).  I saw a neurosurgeon next who was quite neutral. After much consideration, research and discussion with my wife I decided on the radiosurgery approach.

(3)   All in all I had my radiosurgery about 2 months after discovery of my condition.

(4)   NA.

(5)   I sufferred from some headache and quite severe vommitting for about a week.  I started work thereafter without any further complications.

(6)   Absolutely, it was fortunate that in view of the tumour size I was suitable for gamma knife treatment.

(7)   I underwent gamma knife in June 2004.  Had my first MRI scan in June 2005.  Tumour size was controlled ie. no further growth.  My next scan is in June 2006 and I am keeping my fingers crossed.

(   In Singapore at the Gamma Knife Centre.

(9)   The current site

(10)  I only want the AN to stop growing. So far this has been accomplished but I guess it is too soon to say for sure.  Like I said earlier I am keeping my fingers crossed.


        I hope the above will be of help to you and I wish you all the best and that whichever option you choose things will work out well for you.


Lam Chuan from Singapore     

[CC]

Wow - this survery is a great idea.  OK - answers:

1.  Did you get a second opinions? 
You betcha. 

2.  How many opinions did you get?  Did they differ from the first?

I met with three neuro-otolaryngoligists and five neurosurgeons.  My own primary care physician made heaps of enquriies for me among his contacts and a great friend who is an infectious diseases specialist used his contacts to make domestic and overseas enquiries.  So you can say I had tons adn tons of different views!  As far as differing - the answer is yes.  In all but one case the microsurgeons recommended microsurgery, the radiosurgeons radiosurgery, etc.  Teh one case was the doctor I went with who practised both and recommended radiosurgery based on both my AN and my post-treatment lifestyle needs.

3.  How long after diagnosis did you get treatment?  What treatment did you choose?
I had CK radiosurgery 3 months after initial diagnosis.

4.  How long after surgery did you feel better?
I assume you mean microsurgery as opposed to radiosurgery?  Most people who choose CK ro GK forget they're surgical procedures..

5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?
I never really felt bad - just very very tired - all the time.  But this week I feel fabulous!  So I guess the answer is 6 weeks top be back to normal (ie to the point where I can return to living my life at 110%)

6.  Would you choose the same treatment option again?  If no, what would you do different?
Yes I would definitely choose it if I had exactly the same AN - size, location etc and the same needs - no loss of hearing, etc.

7.  How long has it been since your treatment?  Has your AN grown?
6 weeks. Too early to tell.

8.  Where did you get your surgery/radiation?
Stanford with Dr Chang and Dr Soltys.

9.  Any sites you would recommend reading?
This one, ANY research done on ANY method.  You really need to compare research data to make your own decision.

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?
Yes. I have not lost any hearing, have no balance ro other problems and am living my live as if I never had an AN.

CC

[shoegirl]

I started this tread shortly after I was first diagnosised - so I thought I would give it a try - and perhaps I'll try to update it in a year or so post treatment.


1.  Did you get second opinions?
Yes
2.  How many opinions did you get? 7  Did they differ from the first? Yes, the first one was from my primary care dr. and she recommended surgery. 
6 recommended radiation (3 specifically CK or GK), 3 said all options were open to me.

3.  How long after diagnosis did you get treatment?   Just over 3 months
     What treatment did you choose? Cyberknife

4.  How long after surgery did you feel better?  N/A

5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?  I felt really good (same as normal) about 10 days after CK.  But I never felt bad before treatment so the feeling bad part was just my reaction to CK - which was really pretty mild.

6.  Would you choose the same treatment option again?  If no, what would you do different?
     I would absolutely choose CK again, if I had went the surgery route - I would have lost my hearing in my AN ear.

7.  How long has it been since your treatment?  4 months
     Has your AN grown? At 3 month post CK MRI - was pretty much the same size

8.  Where did you get your surgery/radiation? The Barrows Institute - Phoenix, AZ
9.  Any sites you would recommend reading?

http://www.neurosurgery.pitt.edu/imageguided/acoustic_neuroma.html
http://www.anarchive.org
http://www.thebni.com/index.asp?catid=au&pg=ps_acoustic_neuroma&supnav=ps_acoustic_neuroma_supnav
http://www.thebni.com/index.asp?pg=lc_cyberknife&supnav=lc_conf_ck_supnav&catid=au
http://www.anworld.com
http://www.cyberknifesupport.com
http://www.cksociety.org/patientinfo/radiosurgery_stereotactic_technology_comparisons.asp
http://www.houseearclinic.com/

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?
       I am very pleased with my results so far, still have my hearing & facial nerve (same as before), balance and everything else is pretty much as it was pre-CK.  I am hoping this will continue and that the tumor will die and never be heard from again.  Will try to update in 6 months or so to see if results continue to be the same. I hope others will add their stories to this thread or update their initial post.  I think it is important to note that you have to do what is right for you.  I am a firm believer that when you have a choice (some only have surgery as an option) to do all your homework, and then some - to make the best possible decision.  I am sure others can think of some other questions to add that would be helpful.

[Battyp]

1.  Did you get a second opinions?and a third and fourth too!
2.  How many opinions did you get?  Did they differ from the first?No, they all said it must come out and within 6 weeks only option I had was retrosig due to position and size of the tumor
3.  How long after diagnosis did you get treatment?  What treatment did you chooseDiagnosed on Monday...first specialist consult by wednesday. I was diagnosed 7-11th and on a surgical table by 8-23 for retro.  I wasnt' given any options due to brain stem involvement?
4.  How long after surgery did you feel better?Better?  I'm suppose to feel better?  Still waiting for my world to stabilize  lol
5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?didn't have as an option but one I'd have strongly considered
6.  Would you choose the same treatment option again?  If no, what would you do different?Given my choices...HECK YEAH  lol  I wanted to try to finish raising my son!
7.  How long has it been since your treatment?  Has your AN grown? 8 mos, still in the clear for regrowth.  From diagnosis to treatment I was told it went from 2.5 to 2.8Cm but IMO it could have been a measuring difference between facilities.
8.  Where did you get your surgery/radiation?Tampa's Moffitt Cancer Hospital with Dr. Brem..lovely man!
9.  Any sites you would recommend reading? I think by now I've read them all and they all boil down to the same thing.  You're treatment outcome is only as good as your surgeons skill.  There is some truth to that and sometimes it depends on their skill and what they are presented during surgery.  There are too many unknown variables until they actually get in there and see what they are dealing with.
10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?Yes, I lived to talk about it.  Surgery on AN's success rate is based on whether you lived or died not how many problems you were left with.  Sad but true!  I'm alive but witha  lot of differences to what I was before.  No crystal ball will tell you how well you're outcome will be.

[ppearl214]

1.  Did you get a second opinions? and many more

2.  How many opinions did you get?  Did they differ from the first? 3 microsurgical, 3 radio-surgery.  Only 1 microsurgical recommended surgery (the others said no, go with radio). The 3 radiosurgery were inquiries as to which one I wanted to go with.

3.  How long after diagnosis did you get treatment?  What treatment did you choose? Diagonosed May, 2005 and remained in wait/watch mode until noticable growth pattern occurred. Feb 2006 was suggested to treat.  Beginning April, 2006, had Cyberknife radiosurgery.

4.  How long after surgery did you feel better?  Only 2 wks post treatment now.. ask me again in a few months?

5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?  see answer#4 above

6.  Would you choose the same treatment option again?  If no, what would you do different?  For me, I truly do believe it was the best option all the way around. Definately not questioning my decision or the process

7.  How long has it been since your treatment?  Has your AN grown? 2 wks post treat now. Too soon to tell.

8.  Where did you get your surgery/radiation?  Beth Israel CK Unit/Boston MA. 

9.  Any sites you would recommend reading?  Based on the sites I follow closely, the ANAUSA site!   Great folks, great info, a new "home away from home"

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?  Hoping so... ask me again down the road.