Author Topic: Just Registered As Member  (Read 12671 times)

OTO

  • Guest
Just Registered As Member
« on: March 13, 2007, 06:50:34 pm »
I've been lurking on this board ever since I was diagnosed in Feb.  I have 10 mm AN on the left-side.  Symptoms include moderate hearing loss and tinnitus.   I'm leaning toward microsurgery with Dr. Slattery (the House Clinic).  This would mean traveling from Honolulu to L.A.   I have a consultation with Dr. Slattery tomorrow.  I'm still weighing my options.  I did consult with a local neurosurgeon here in Honolulu.    If I select microsurgery they recommend going to the Mainland, if I elect radiation, they do have a Gammaknife center here.  Anyway, just wanted to say hello....  reading the forum is very helpful, reassuring and frightening...   ;D

Nick M

  • New Member
  • *
  • Posts: 9
Re: Just Registered As Member
« Reply #1 on: March 13, 2007, 07:59:05 pm »
OTO:

You and I have much in common.  I was also diagnosed in February with a 1.8 cm AN.  I wish we had geography in common instead.  How wonderful it must be to live in Hawaii. 

My wife and I had our first consultation yesterday at Northwestern Hospital in Chicago.  We have decided to go with Gamma Knife surgery - I am scheduled for 4-26-07.  Like you, I am having some symptoms - for me, mostly hearing loss, occasional headaches and dizziness.  I am looking forward to getting past the treatment and putting this darned thing behind me.

I have learned much from the good people on this site.  Welcome, and good luck as you make decisions.

Nick
1.8 cm AN - right side
Gamma Knife scheduled for 4-26-07
with Dr. Getch, Northwestern Memorial Hospital, Chicago.

OTO

  • Guest
Re: Just Registered As Member
« Reply #2 on: March 13, 2007, 11:01:41 pm »
Hello Brucifer,

Actually, I live in Aiea (Newtown)...  and my parents live in Aiea (above the high school)...   I still open to GK.  A high school classmate of mine, who is an oncologist, is going to set up a consultation with a doc who is affliated with the Gamma Knife Center of the Pacific.   My ENT only recommends surgery and going to the House Clinic.   The local neurosurgeon felt either would work, and he could do the GK here.   I was impressed with Dr. Slattery during my phone consultation, and since he comes to Hawaii every 3 months or so, I'm having a face-to-face consultation too.   I'm not 100% sure which I will choose, but I'm leaning toward microsurgery just because... my first gut reaction... is to just cut it out, and be done...   
 

brasher

  • New Member
  • *
  • Posts: 26
Re: Just Registered As Member
« Reply #3 on: March 13, 2007, 11:57:07 pm »
hello OTO,


my name is tony, i came from the big island to have surgery done by dr. slattery. my guy in honolulu was dr liem. same thing, they could have done the cyberknife, but i needed surgery, so he referred me to the house clinic and dr slattery.
     my situation was life threatening because of the size of the tumor and the effect it was having on the brain stem.  dr slattery and dr schwartz spent 13 and a half hours in my head removing the tumor!!!  anyway, those guys are very good. i am alive and well and they are responsible for that, i highly recomend them, i have gotten to know them pretty well over the past 6 weeks.
   the only problem with those guys is that they are in ca. instead of hi.   i have actually had to relocate form kona to so cal because of this tumor.
   funny story, i came from hawaii to have the surgery, and a week after my surgery, dr. slattery went out there to do some work!
    make sure you research all you can. i dont know anything about the cyberknifeor other types of radiation. there are a lot of optons to look at.
good luck and god bless

tony
6.5cm AN;   1/23/07
translab prceedure; house ear clinic; Dr. Slattery and Dr. Schwartz
facial nerve severed with complete removal of tumor.
gold eye weight;2/21/07-Dr Roberts
12-7 nerve anastomosis; 3/1/07, Dr Slattery
happy to be here; recovering well

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: Just Registered As Member
« Reply #4 on: March 14, 2007, 12:45:27 am »
Hi OTO,

Sorry you had to join our little club.  Wishing you the best in your treatment and recovery.  I lived in Hawaii when I was but a young lass - Aug 1966 to Aug 1969.   Interesting time to live in Honolulu.  I was on my son's computer the other night playing around with Google Earth and I went to Keeaumoku Street and could see where I used to work.  It's a park now!  Also took a look at Pacific Heights because my folks had rented a little house there.  That was fun. Wish I could have Google Earth on my computer, but it's too old.   

Anyway, I hope everything goes okay for you. 

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Obita

  • Hero Member
  • *****
  • Posts: 985
Re: Just Registered As Member
« Reply #5 on: March 14, 2007, 05:25:34 am »
Hi OTO - Glad you came on.......

I am so glad you found out about the AN before you lost your hearing.  Hopefully, you can save it!!

Good luck with your appts. and keep us posted.

Kathy



Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Just Registered As Member
« Reply #6 on: March 14, 2007, 06:29:17 am »
Hi OTO and welcome :)

Well, next time you go by Hilo Hatties, I need a new sunhat, a Men of Hawaii Calendar from an ABC Store (pick one, any one) and a pound of Peaberry coffee... thankyouverymuch :)

It's always difficult to hear another has joined our elite club... but if you've been lurking for a while, as you can see, you got the best round of support here.  Regardless of what you decide (and it sounds like you are doing terrific research!), we cheer you on.

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"

linnilue

  • Full Member
  • ***
  • Posts: 179
Re: Just Registered As Member
« Reply #7 on: March 15, 2007, 07:33:36 pm »
Dear Oto,  Go with your gut or could the "gut" really be instinct?   I wish I had gone with my gut.  I tell you, I hate having to deal with the yearly or twice yearly MRIs and the stress that all that entails.  In my opinion this stress is an awful lot to deal with.  I so wish my tumor was gone.  I know it's acting up right now, I have wierd symptoms again so who knows, it could be that it's shrinking or growing, never the less, it is bothersome. I have had contact with two people who were so very happy with their results from House and they both had great, really great outcomes.  Lucky that you get a face to face with Dr. Slattery .  Good luck.
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Just Registered As Member
« Reply #8 on: March 15, 2007, 08:47:19 pm »
I have to concur with Bruce  :-* as for those of us diagnosed with an AN will need to be monitored for the rest of our lives, regardless of treatment. These suckers, on occassion, can regrow and not a darn thing we can do to prevent a regrowth... so all we can do is hope and pray that our initial one is the only one in our lifetime and we should never have to endure again.  In choosing CK for myself, I already knew that I'd be MRI'd in my lifetime (or whatever better scan may crop up when I'm old and feeble and being pushed around in a wheelchair by my younger spouse), but you know what?  It's ok.  If I have to endure MRI's/scan the rest of my life, heck... I sleep through MRI's anyway.

Hang in there..... you know what is best for you.......and yes, we do know what it is to walk a mile in your shoes. Remind me to have the shoe soles re-done :)  Been a rough ride for us all.

Phyl
« Last Edit: March 15, 2007, 08:56:20 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

FlyersFan68

  • Full Member
  • ***
  • Posts: 178
Re: Just Registered As Member
« Reply #9 on: March 16, 2007, 08:02:41 am »
nikynu...
However, we have many more members here who wish they had gone the radiation route because of the serious side effects they had post microsurgery. No matter what choice a patient makes, there are no guarantees.
Bruce

Bruce, You have to understand that there are many more surgical patients on this board so sure there's gonna be more unsatisfactory results. Many of those patients had to deal with large tumors where radiosurgery was borderline or just fearful. There are so many AN patients who have never logged on to this board. Many of those have MRI's every 3 years or so and don't look back at all. My primary care physician is one of those people. He had surgery 10 years ago after suffering severe vertigo. There are many more good outcomes then this board reflects. I stick around to support those who feel surgery is best for there situation. These people sometimes leave the board in fear, proceed with surgery and lose all the support that they deserve. Nobody here wants to be debated. They just want to gather facts and read some stories "good or bad." Maybe even make a friend along the way. Not every surgery is a nightmare as you would lead them to believe. No doubt, it's a major surgery and I can understand why some elect not to have surgery especially those with pre-existing conditions. However, asking radiation to control a tumor up to 20 or 30 years is asking alot in my opinion. Then if you repeat the treatment you may make things worse and have start the follow up phase once again. This is why some surgeons state that surgery is sometimes the preferred treatment. Don't take this the wrong way. I am NOT oposed to radiation. I do a lot of research on the internet and yesterday I read a story on how Cyberknife saved this woman's life. She had many tumors and Cyberknife enabled her to walk away a few days following treatment totally escaping multiple surgeries. It's a blessing for many people. I'm just not sold on it's use for acoustic neuroma. These are solid benign tumors unlike cancerous lesions. There are possible long term effects and require many years of careful follow-up.   

linnilue

  • Full Member
  • ***
  • Posts: 179
Re: Just Registered As Member
« Reply #10 on: March 16, 2007, 08:34:28 am »
Thank you Flyers Fan for your honest reply.  I have found the reponses on this site quite disturbing and am about to disengage from it because it has only served one purpose for me.  If you look beyond the dramas, judgements and "have-to's" you will find a wealth of good doctors.  You are very right that most people have had the surgery and not radiation.  But, as I have been trying to tell everyone is that radiation has many risks and that is the truth.  Wheter they like it or not, I am the product of post radiation permanent side effects.  which by the way, make my future treatments if necessary, much more difficult.  I am also a nurse and married to a doctor so together we have alot of knowledge available to us.  I was looking for support on this site but I haven't gotten it.  Thank you for your response.  It was well received.
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Just Registered As Member
« Reply #11 on: March 16, 2007, 08:40:16 am »
Bruce, You have to understand that there are many more surgical patients on this board so sure there's gonna be more unsatisfactory results. Many of those patients had to deal with large tumors where radiosurgery was borderline or just fearful. There are so many AN patients who have never logged on to this board. Many of those have MRI's every 3 years or so and don't look back at all. My primary care physician is one of those people. He had surgery 10 years ago after suffering severe vertigo. There are many more good outcomes then this board reflects. I stick around to support those who feel surgery is best for there situation. These people sometimes leave the board in fear, proceed with surgery and lose all the support that they deserve. Nobody here wants to be debated. They just want to gather facts and read some stories "good or bad." Maybe even make a friend along the way. Not every surgery is a nightmare as you would lead them to believe. No doubt, it's a major surgery and I can understand why some elect not to have surgery especially those with pre-existing conditions. However, asking radiation to control a tumor up to 20 or 30 years is asking alot in my opinion. Then if you repeat the treatment you may make things worse and have start the follow up phase once again. This is why some surgeons state that surgery is sometimes the preferred treatment. Don't take this the wrong way. I am NOT oposed to radiation. I do a lot of research on the internet and yesterday I read a story on how Cyberknife saved this woman's life. She had many tumors and Cyberknife enabled her to walk away a few days following treatment totally escaping multiple surgeries. It's a blessing for many people. I'm just not sold on it's use for acoustic neuroma. These are solid benign tumors unlike cancerous lesions. There are possible long term effects and require many years of careful follow-up.    

flyer, I agree with you on some points and respectfully disagree on one or 2 others... (I love a lively conversation! :) )... what I have bolded/red, to me, actually applies to those that have had micro-surgery as well... not just the radio gang.  Micro-surgeries can have outcomes that are not so good.. and yes, same with radiation.   To me, when folks make their own personal choice of treatment option (should they have the option), we all have to take into considerations the risks involved.  As we all know, nothing is guaranteed in life and it also applies to our treatments, regardless of which route.

Just my 2 cents... I had high-octane coffee this am.

Phyl

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

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Just Registered As Member
« Reply #12 on: March 16, 2007, 08:48:04 am »
Thank you Flyers Fan for your honest reply.  I have found the reponses on this site quite disturbing and am about to disengage from it because it has only served one purpose for me.  If you look beyond the dramas, judgements and "have-to's" you will find a wealth of good doctors.  You are very right that most people have had the surgery and not radiation.  But, as I have been trying to tell everyone is that radiation has many risks and that is the truth.  Wheter they like it or not, I am the product of post radiation permanent side effects.  which by the way, make my future treatments if necessary, much more difficult.  I am also a nurse and married to a doctor so together we have alot of knowledge available to us.  I was looking for support on this site but I haven't gotten it.  Thank you for your response.  It was well received.

I am sorry to hear that you are not pleased with the discussions that occur here. As you note, since you and your spouse are in the medical profession, you know that life holds no guarantees, treatments of any sort for any disorder hold no guarantees... and life is filled with risks.  I'm sorry to hear your FSR has not be producing the results you seek and can well understand your frustration and feelings about it.  However, I also have to believe that for many of us that have taken the radio route and that are seeing positive outcomes, it provides many newbies here the opportunity to see that it works for some as well as, unfortunately, not the same for some others.

My hope is that someday down the road, the medical community will produce a treatment option for AN's that will make life easier on us all... it's a hope, but I don't see it happening, so, this forum website provides insight into the good, the bad, the ugly.  I see it as a reality check to remind all that we do the best we can, we choose (if given options) the best we can... and most of all... we thrive as best as we can.

I hope you continue to participate on this forum board.  All inputs are respected and the sharing of info (good and bad) is very valuable to many that seek info here.

Phyl

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

FlyersFan68

  • Full Member
  • ***
  • Posts: 178
Re: Just Registered As Member
« Reply #13 on: March 16, 2007, 09:42:39 am »
Phyl,
  Let me say this! I mentioned this in a seperate thread. During the months I had my tumor it drove me nuts. My wife told me that you will never ever relax if you don't have the surgery. She was right and I knew it. She said that she would get it out too. Although that made feel better I knew it's easier to suggest what one might do especially when your not actually in that situation. The truth is that every ear, head and jaw pain I did encounter was blamed on the tumor. The ear pain was no doubt the source but I never had proof the other issues were related. I knew that tinnitus was gonna be with me forever no matter what although it's no worse following surgery and if anything has eased some. Since I always used to blame things on the old tumor I know I would have blamed even more on radiation. Yes, there is follow up for both treatments but if I have an off day I don't blame it on the tumor and cannot blame radiation because I never had it BUT if I did have radiation I would have been the type to get MRI's sooner rather than later whereas with removal I don't feel that need and have that relaxation. This might be considered a small tadeoff to avoid surgery but not for me. This is my peace. There are some opposed to surgery in most tumors under 3cm. but if you've never had any treatment whatsoever how can you speak from any experience? How can you endorse radiation 100% based upon short follow ups. The results of radiation are seen over time. I never understood why there are never anyone 7-10 years post radiation patients on this board. This concerns me. Where are they?? Are they happy??  In closing & In my opinion, there is no doubt closer attention needed regarding follow ups for radiation than surgery and would have been especially true in my case. Remember, this is a support forum to help those in various situations offering unbiased help. For example..I cannot help those with eye dryness because I don't have that problem so I leave that to the other fine people here on this board. My experience is surgery and this is what I know. I know where I stand!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7442
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Just Registered As Member
« Reply #14 on: March 16, 2007, 09:49:10 am »
Flyer, I will not participate in a heated debate over which is right for some and not for others.  As I am the 2nd sibling in my family to have a brain tumor, trust me, my family's attitude is the same as your's... "if it don't belong, cut it out".  Yes, I agree that we all speak from our own individual situations, thus, we must also be open-minded to what others share.  Many that I know that have had radio have done well and have moved on with their lives.  Many remain here to support those that are just diagnosed and need to hear of experiences on all levels, but in all fairness, many that have had radio do not participate as they do well, life moves along and they choose to support in means that suits them.  Those of us radio-posties that do remain do so from the heart to help others with research and support, regardless of what treatment options are done.

We try to remain as unbiased as we can out here. Doesn't always work.  I commend you for sharing what you do about your micro-surgical perspective/experience.  Know, that in fairness, the radio-patients are here for the same reason.

P

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

 


anything