Informal Survey

[shoegirl]

Hi All,  I am fairly new to this site.  I was hoping you could answer some questions for me.  I have found that I have learned more from this site and your postings than anywhere else.  Your opinions would help me in considering my treatment options.

1.  Did you get a second opinions?
2.  How many opinions did you get?  Did they differ from the first?
3.  How long after diagnosis did you get treatment?  What treatment did you choose?
4.  How long after surgery did you feel better?
5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?
6.  Would you choose the same treatment option again?  If no, what would you do different?
7.  How long has it been since your treatment?  Has your AN grown?
8.  Where did you get your surgery/radiation?
9.  Any sites you would recommend reading?
10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?

Feel free to add any other comments you think would help.  I hope I am not doing anything out of etiquette here, I am just trying to get the best kind of advice that I can, from people who have experienced it.

You guys are awesome!

Thank you! Suzanne

[Mark]

1.  Did you get a second opinions?

Yes

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

Total of 4 from Neurosurgeons ( tons from interested parties  ) . Kaiser and UCSF docs promoted surgery and dissed radiosurgey, Stanford Docs offered both, suggested FSR as better option


3.  How long after diagnosis did you get treatment?  What treatment did you choose?

About 7-8 months, radiosurgery with CK

4.  How long after surgery did you feel better?

N/A


5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?

Felt fine during and immediately after treatment, had several short and minor vertigo episodes and one significant one in the first 6 weeks, but nothing that interfered with work, exercise , etc in any major way

6.  Would you choose the same treatment option again?  If no, what would you do different?

At this point, absolutely, no surgical trauma and all cranial nerve function at pre treatment levels

7.  How long has it been since your treatment?  Has your AN grown?

4 years this November, some initial shrinkage, followed by no growth to this point. Certainly hoping to report same after my December MRI

8.  Where did you get your surgery/radiation?

Stanford Medical Center  - Dr. Steven Chang / Iris Gibbs

9.  Any sites you would recommend reading?

AN archive, Univ of Pitts neurosurgery, CK society page on AN

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?


Yes, see response to 6 and 7 above

Hope that is helpful

Mark

[sirialison]

Hi,  Suzanne - thought I'd take a stab at this for you...

1.  Did you get a second opinions?
Not officially, I suppose. My intial diagnosis was from the g.p. and I then went to Mayo Clinic to see a neurosurgeon and the ent specialist/surgeon. So, maybe that was the first and second opinion? Because my tumor was large (3.5 cm) and because of how I was feeling, I really didn't have a lot of options to get other opinions.

2.  How many opinions did you get?  Did they differ from the first?
See above - but I did appreciate the docs at Mayo stating that if I wanted another opinion they would certainly refer/help me find another doctor/treatment option

3.  How long after diagnosis did you get treatment?  What treatment did you choose?
Diagnosed on 10/5/05; had consult at Mayo on 10/22/05; surgery at Mayo on 11/24/05. Retro-sigmoid surgery was done because of the size of the tumor.

4.  How long after surgery did you feel better?
Sorry to be so sarcastic, but compared to WHAT?


6.  Would you choose the same treatment option again?  If no, what would you do different?
THIS is a loaded question (for me!). I may have decided to do nothing at all!

7.  How long has it been since your treatment?  Has your AN grown?
Almost one year. My tumor is completely gone according to the docs and the three month  post-op MRI - just waiting to do the one-year post-op check up now

8.  Where did you get your surgery/radiation?
Mayo Clinic (St. Mary's Hospital), Rochester MN

9.  Any sites you would recommend reading?
ANA,anything else you can link to, read, get your hands on...

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?
This is a difficult question for me to answer - if I could go back and redo everything,and if I had had more time, I truly may have done something different! As far as the outcome...the surgeon's goal of total removal of the tumor with preservation of the facial neve was achieved successfully. As far as my goals, I am not so sure. I guess I thought I was informed but I really wasn't, so, I have some pretty serious quality of life issues I am dealing with right now. I am constantly comparing my life and symptoms pre-surgery to post-surgery and there are truly  many, many, many times that the ONLY difference between then and now is that I am not dead. Just be sure that you and the surgeons are on the same page - as surgeons, their measure of a successful treatment may be AND are very different than the patient's!

[shoegirl]

I really appreciate your responses and honesty!  I probably should have posted this in the general discussion area but I couldn't figure out how to move it once I had posted it.

Thank you both for sharing - it really helps me try to figure out all of this.  It is hard to deal with - it is all so confusing and I feel like a I am all alone in trying  to understand and sort through it.  I have my husband but ulitmately all of this is my decision.  I think making the decision is a huge stress in addition to just dealing with having AN.

I admire the courage and strength of everyone on this site.

Siri, I hope I didn't offend you with the feeling better question?  Wasn't my intention.   I apologize if I did.  Sounds like you are still struggling with everything.  I wish you all the best.

Thank you! Suzanne

[jamie]

Okay, here goes....


1.  Did you get a second opinions?

yes

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

I obtained three opinions, two neurosurgeons, and my radiation oncologist. The first neurosurgeon said I could watch and wait, have radiosurgery alone, or do what he suggested and have surgery to "debulk" followed by CyberKnife, however my tumor wasn't very large and wasn't causing any issues that warranted that, I guess he was just being a surgeon. Second opinion was a neurosurgeon who is a friend of my father, he said either surgery or radiosurgery were good options, he basically just said to get it treated one way or the other. My radiation oncologist recommended CyberKnife alone, and that is what I went with. 

3.  How long after diagnosis did you get treatment?  What treatment did you choose?

About two months. I chose radiosurgery with CyberKnife.

4.  How long after surgery did you feel better?

After I decided I wasn't going to have surgery, lol. 

5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?

The earaches caused by my tumor were pretty much gone immediately. I had mild transient headaches for about a month and a half after CK, but they were easily controlled by OTC pain meds, and are gone now.

6.  Would you choose the same treatment option again?  If no, what would you do different?

Absolutely.

7.  How long has it been since your treatment?  Has your AN grown?

It's been about two months, I feel great and I hope that is an indication that the treatment was succesfull. I get my first baseline scan in about a month.

8.  Where did you get your surgery/radiation?

Barrow Neurological Institute.

9.  Any sites you would recommend reading?

Mark recommended a few good ones, also check out www.irsa.org

10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?

So far it has. The results were the elimination of my morning earaches/headaches, the only symptoms caused by my tumor. I also feel much more at ease than before treatment, I feel that I've done something and I'm highly confident I made the right choice.

Other advice I have to offer, is to choose the treatment that you feel most comfortable with. Don't a specialist in either field stonewall you into their treatment by trying to frighten you away from the other. If you want it out of your head immediately, then you probably won't feel comfortable after radiosurgery. If you're comfortable with the tumor's growth being stopped, usually followed by shrinkage and in some cases even complete disappearance, then radiosurgery gives you the opportunity to avoid brain surgery, and save your facial function, and most likely your hearing as well. I think alot of people are bothered by the tumor staying for a while, I look at it in the sense that they're my schwann cells to begin with, the tumor wasn't planted there by aliens, and it's probably not going to explode. So I can wait for it to shrink up knowing that the cells most likely have lost their ability to reproduce, and if I'm in the very small minority of patients for whom radiosurgery doesn't work, I can always fall back on surgery.   

[sirialison]

Suzanne - No offense taken!!!! It's just been one of those days...weeks...months...year!!!
Siri

[okiesandy]

Suzanne,

Just a note from someone who is still going through the decision process. 

I have been to two neurotologists. The first one was so God like that he could not relate to any of my fears. He also had very little experience with surgery. About 20.

Consulted with Dr. Brackmann. Wonderful man. His opinion is surgery only. At least he was fairly sure I could watch and wait and not jump into surgery.

2nd local neurotologist. Surgery was his advice. Did 2nd MRI and it had become cystic and grown. Take it out now was his advice. He was fairly laid back about post surgery complications and quality of life. After all it isn't his quality of life that is on the line.

Now I have an appointment with a radiation oncologist to check out GK and CK. I have spent 6 months thinking I would have surgery and not have done a lot of reseach and think maybe CK would be the better way to go. Who knows, may change my mind tomorrow. I joking said I was about to flip a coin to make the decision on another site. I kind of got a slapped around a little because of my attitude and did I understand how serious this is. Yup, I do. Just can't seem to make the leap of faith to do it.

Hang in there, you are asking the right questions. If you get the right answer let me know.

[shoegirl]

Okiesandy,

Hope your appointment goes well, would be interested in knowing what the Dr. has to say.  I too am considering CK and I am also considering FSR.  I go to the Radiation Oncologist Friday.  The thought of surgery scares me tremendously.  You are absolutely right - quality of life is on the line!  Couldn't have said it better myself.  What happens when the tumor becomes cystic?  I am sure it complicates things. 

Thanks for your feedback! Good luck!

[kristin]

this is fun! i like surveys!

1. Did you get a second opinions?
well..kind of.

2. How many opinions did you get? Did they differ from the first?
my first referral was to an otolaryngologist in missoula, mt. i called his office to see how many AN patients he sees a year and the answer was 4 (that's FOUR) so i ex'd that referral. i called mayo clinic and asked to speak w/ a doc there..they said i needed an appointment. then i talked w/ a local ENT that was 100% for surgery, then called the oto-guy from missoula just for a consult, he also recommended surgery. both docs recommended dr. brackmann by name.

3. How long after diagnosis did you get treatment? What treatment did you choose?
it took me a month and a half of research, referrals and prayer to decide to have surgery at House Ear Clinic. my surgery was actually 4 1/2 months from dx.

4. How long after surgery did you feel better?
well...i played softball and started running on the treadmill 6 weeks post-op. i would have played ball sooner, but my mom said i couldn't until i went back to work. seemed only fair.

5. How long after FSR/Gamma Knife/Cyberknife did you feel better?
n/a

6. Would you choose the same treatment option again? If no, what would you do different?
yes. for sure. i'm very happy with my outcome.

7. How long has it been since your treatment? Has your AN grown?
6 months and 2 weeks (well...on thursday it will be two weeks! ) will know if any re-growth when i have my follow-up MRI in april 06, but all docs involved say regrowth is not likely

8. Where did you get your surgery/radiation?
St. Vincent's Medical Center in LA. by Dr. Dereld Brackmann from the House Ear Clinic and Dr. William Hitselberger

9. Any sites you would recommend reading?
www.houseearclinic.com
www.kumc.edu/gec/support/acoustic.html

10. Did your treatment accomplish what you wanted it to? If so, what were the results?
yes. i don't have a tumor anymore!

[shoegirl]

 :-*Thanks to everyone for sharing their stories!  Would love to read more!

[okiesandy]

Suzanne,

Let me know how your appointment goes. Mine is not until the 9th of November.  I am about researched out. I am very dissapointed in our medical professionals. I know now why they call it the practice of medicine.
Why can't these guys get together, get rid of the egos and find a solution that is really best for each particular patient?  After all, we are paying them. They work for us. There is only one God and I don't think he has Dr. before his name. Honest comparisons would be a great help.

Sandy

[shoegirl]

Sandy,

I agree.  I have been told so many different things.  A nurse told me that some doctors push certain treatments because they have invested $$ into the equipment and need to pay for it.  I have also been told that some equipment is privately owned and you need to ask who owns the equipment - the hospital or a group of doctors - as they stand to benefit personally from it.

Someone else told me that their equipment is the same as CK but just doesn't have the "fancy"name.  I called a radiation dept at a certain facility and whomever answered the phone said CK can't be used to treat AN.  I laughed.  I have been told that certain facilities have "hand me down" equipment from bigger institutions.  It makes you wonder what questions you should ask beyond "what is the best treatment".  Don't get me started on GLS "God Like Syndrome"  I have met many a medical professional that is suffering from it.  I guess if I paid that much for my education I would want to feel good too.  I do believe there are very good doctors out there who are in it for your best interest - so keep searching for them until you find the right doctor.

I am really looking forward to my visit with Dr. Kresl at Barrow's, I have heard wonderful things about him and their facility.  I am considering possibly getting input from Standford too.

Sorry to be so harsh - I'm having a bad day.  I apologize if I have offended anyone.

[Jeff]

1.  Did you get a second opinions?
Yes
2.  How many opinions did you get?  Did they differ from the first?
I got opinions from two nurosurgeons: Barrow Neurosurgical Institue and House Ear Clinic
3.  How long after diagnosis did you get treatment?  What treatment did you choose?
My first surgery was 6 weeks after diagnosis. Second surgery on remaining tumor was 20 monthslater. I had retrosigmoid approach first, in an attempt to preserve my hearing. Later, I had translab approach and auditory brainstem implant approach.
4.  How long after surgery did you feel better?
My constant headache was gone as soon as first surgery was finished. I was back to work full time 6 weeks after surgery. I was out of the hospital in 36 hours after the second surgery, and back to work full time in 6 weeks.
5.  How long after FSR/Gamma Knife/Cyberknife did you feel better?
N/A
6.  Would you choose the same treatment option again?  If no, what would you do different?
For my situation and life goals, I am happy with my course of action. I would choose the same course again. Although things haven't turned out perfectly, I made choices that I can live with.
7.  How long has it been since your treatment?  Has your AN grown?
My last surgery was almost 2 years ago. My semiannual MRI scans show no regrowth.
8.  Where did you get your surgery/radiation?Barrow and House (surgery both times.
9.  Any sites you would recommend reading?
http://www.houseearclinic.com/
http://www.neurosurgery.pitt.edu/imageguided/acoustic_neuroma.html
http://www.virtualtrials.com/video3.cfm?clipid=113
10.  Did your treatment accomplish what you wanted it to?  If so, what were the results?
In a larger sense, and in retrospect, yes. I have had a very large tumor completely removed with no facial nerve damage at all. Because I have a tumor on the other side (I have NF2), I am disappointed that my auditory brainstem implant did not give me sound sensations, but I will get another when I have the other tumor removed. My real goal though, is to have my other AN removed with no facial nerve damage, and I am hopeful that this will happen.

Jeff

[shoegirl]

Jeff,

Thanks for your response! I am curious how big your tumor was?  And how big is the tumor you still have?  Did you lose any hearing? Who's your Dr. at Barrow's? I am considering treatment there - I live in Phoenix.  I will definitely check out the sites you recommended.  Your implant surgery sounds very interesting, I have never heard of anything like that before?  I hope the next one works.  One more questions - Did you find both of your ANs at the same time or can they appear at different times?

I wish you all the best! Thanks again for sharing!

[Jeff]

Jeff,

Thanks for your response! I am curious how big your tumor was?  And how big is the tumor you still have?  Did you lose any hearing? Who's your Dr. at Barrow's? I am considering treatment there - I live in Phoenix.  I will definitely check out the sites you recommended.  Your implant surgery sounds very interesting, I have never heard of anything like that before?  I hope the next one works.  One more questions - Did you find both of your ANs at the same time or can they appear at different times?

I wish you all the best! Thanks again for sharing!

Hi Suzanne,

Both tumors were discovered at the same time. I had a CT scan because of recurrent headaches and both tumors were quite evident. One was cystic. The radiologist report said 2.5 cm with 5 cm of cystic component. Doctors at both Barrow and House described it as life-threatening. The doctor's report from Barrow said it was "crushing" my brainstem. The other side was also 2.5 cm, but no cystic material. It is now 3.5 cm (I still have perfect hearing on that side).

I had no hearing loss prior to the retrosigmoid surgery, however I lost nearly all of it as a result of the surgery. After more research about NF2, I realized that it was highly likely that either these tumors or surgery would cause me to be deaf. I decided to go to House to have the remainder of the tumor removed and get the implant. You can read about the next generation of these implants at this link: http://www.hei.org/news/presskits/pabikit.html

My surgeon at Barrow was Dr. Spetzler. He is an excellent surgeon. Dr. Daspit was the neurotologist he teamed with for my surgery. He is very good also (did a fellowship at House). I know that there is another House fellow who is working with the Barrow AN team. His name is Dr. Syms. You can read about the Barrow AN team here: http://www.thebni.com/index.asp?catid=au&pg=ps_acoustic_team&supnav=ps_acoustic_neuroma_supnav
I spoke briefly with Dr. Porter about having GK on the remainder of the tumor, but I decided not to go that route. I think Barrow has highly qualified doctors and a top notch facility. In my opinion it would be worth your while to visit with them. In terms of surgery, one very noticeable difference between Barrow and House is that Barrow has interns working with them. Saw Dr. Spetzler for about 10 minutes before my surgery and he stopped in once while I was in the hospital recovering. The rest of the time I was followed by interns. At House the 6th floor of the hospital is the AN floor. Surgery, ICU and the ward are all very close together. As a result, I saw my doctors more than once per day while I was in the hospital. They would stop in to check on me between surgeries.

Best wishes to you to. I am sorry you have to go through this. I wouldn't wish it on my worst enemy! Let me know if I can answer any more questions.

Jeff