ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: G_Man on February 07, 2010, 04:10:34 pm
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After having hearing trouble for about 20 years which initially started as water in the ear and a go round with the ENT/MRI treatment in 2000 which resulted in "Sir, you could use a hearing aide". Here I am almost 10 years later with my AN. Now the next chapter begins. My tumor is small so I am considered a "Watch and Wait" patient. So now I'm starting where many of you have already been. I have that "W+W" luxury which some folks didn't get.
Of course I'm feeling a lot of the feelings that everyone feels. Some things I'm feeling most others don't know. Anyway, I'm looking at it from a proactive perspective. What can I do now to give myself the best chance of making the rest of my life the best it can be with this condition. First thing is to figure out who are the best AN surgeons in the NYC metro area.
It amazes me that there isn't a support group in NYC. I'm reaching out to other areas.
I'd like to talk to anyone in the NYC area who was treated by doctors here and have favorable outcomes.
Thanks
Glen
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Hi Glen and welcome to this very informative site I had surgery 7 months ago my surgeons in New York were Dr. Philip Stieg and Dr. Samuel Selesnick they removed my 1 cm. tumor completely and I am having just some normal post-op problems that alot of other people are experiencing other than that I was very satisfied with my surgeons and the hospital NY Presby., other people on the site went to a Dr. Rolands and a Dr. Sisti in the NY area. I am hoping others will give you additional names and if you like to discuss more about the surgeons you can PM and I would be more than happy to answer any questions you may have.
Best Wishes,
Pat
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Glen~
WELCOME from Texas! My friend "debbi" had her surgery in NYC - she & some others have "get togethers" in the city and are having one coming up. It is not an official support group meeting but i think you might like it! Send her a PM - I can't remember the name of the thread on here that tells about it...
K ;D
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NY/NJ Area ANers - Mark Your Calendars!
found it - that is the thread - I don't know how to do the links - sorry!
K ;D
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Pat
Thanks for your response. Those seem to be the two teams of doctors here in NYC that most people use.
My Otologist is Dr. Christopher Linstrom. He classified me as a W+W patient. He did not refer me to a surgeon but eveyone else I talk to tells me to see one. I'm not sure who Linstrom uses. I have a hearing test scheduled next week. After that I'm going to go back to Linstrom as I've gathered a lot of test data since I initially met with him 6 months ago.
After that I'm planning to visit at least one neurosurgeon. I want to get more opinions. The ENT who referred me to Linstrom thought I could have this removed through the ear. That tells me it's a rare condition because the ENT's aren't even that well versed in the condition.--
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NY/NJ Area ANers - Mark Your Calendars!
found it - that is the thread - I don't know how to do the links - sorry!
K ;D
Thanks Kaybo, I'll check it out. This board is big so I can't say I have seen anything close to all of it.
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Hi Glen,
I am in NY and had my surgery done at Mt. Sinai. the details are in my footer and if you have any questions please PM me. We are having a luncheon in May and you can get the details in the AN Community section. BTW, my surgeons were fantastic!
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Pat
Thanks for your response. Those seem to be the two teams of doctors here in NYC that most people use.
My Otologist is Dr. Christopher Linstrom. He classified me as a W+W patient. He did not refer me to a surgeon but eveyone else I talk to tells me to see one. I'm not sure who Linstrom uses. I have a hearing test scheduled next week. After that I'm going to go back to Linstrom as I've gathered a lot of test data since I initially met with him 6 months ago.
After that I'm planning to visit at least one neurosurgeon. I want to get more opinions. The ENT who referred me to Linstrom thought I could have this removed through the ear. That tells me it's a rare condition because the ENT's aren't even that well versed in the condition.--
Glen,
If they are going through the ear my grandson had 2 major surgeries with his ears and the surgeon my son used for him was EXCELLENT he did so much reconstruction in his ears and he was only 7 years old at that time and now my grandson is doing so well it is a miracle. If you would like me to get his name I will call my son and this could be another option for you. Hope all goes well next week with your hearing test keep us posted.
Best Wishes,
Pat
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Hi G Man! I`m also from the NYC area and presenly Wait + Watching goin on 3 years now. My doctors are Roland and Golfinos who have a great reputation and I like very much. There is a AN New Jersey which I belong to about as close as your going to get to NY. We also have a Brunchen a few times a year in Manhattan with the next one coming May 2. If you like to talk get in touch with me. Everthings gonna be allright! All the best, Mickey
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Same here. Surgery with Golfinos and Roland at NYU in January of 07, if you care to speak with me just send a PM and we can exchange contact information.
Regards,
Joe-
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Hi, Glen - and welcome. Thanks for posting. Of course I'm sorry you have an acoustic neuroma diagnosis but at least you've come to a good place on the internet to seek information, advice and, especially, support from folks who know exactly what you're dealing with right now.
I'm in Connecticut and had an excellent neurosurgeon. Because he wanted to spare my cranial nerves, he de-bulked my large (4.5) AN and I underwent radiation, some 3 months later, according to a detailed plan he had laid out. All went well. My radiation oncologist was excellent. His name is Dr. Johnathan Haas and he now practices in Mineola (Long Island). Should you strike out on finding doctors you can feel confident with in the Manhattan area - which I doubt will happen, as there are quite a few excellent doctors treating ANs in N.Y.C. - I'll give you a link to my doctor's website and that of Dr. Haas.
Meanwhile, I hope you'll make contact with the other New York-area AN patients that frequent and contribute to these forums. I trust you'll be a frequent 'visitor' here and I want to reiterate that we're eager to do what we can to guide and support you through this journey.
Jim
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Glen,
Welcome to the AN club- is this the thread for a get together in your area?
Maureen
http://anausa.org/forum/index.php?topic=11747.msg135346#msg135346
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Looks like you found it Glen!-the post
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I'd like to thank all of you for the burst of positive energy. I'm overwhelmed by it. I'm going to try and make the Lunch on May 2. I'm also looking into going to the meeting in NJ in April and also thinking about going to a meeting in Albany that I understand will be happening sometime at the end of March.
I'm looking forward to meeting a few people in the same boat.
From what I read on this forum the two doctor teams that many people have used are:
• Roland and Goldfines
• Dr. Steig and Dr. Samuel Selesnick
I'll be starting there and with my Otologist.
Glen
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Glen also look into Dr. Sisti he is afiliated with Columbia University he was highly recommended to me and also Mandy's husband had him as his surgeon.
Best Wishes,
Pat
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Every time I come to this forum I get such positive vibes from everyone. I got a bit of good news that I want to share. Today I had a hearing test. It's 6 months since my diagnosis. The results were exactly the same. It would be great to stay watch and wait!
I think I'm going to get a hearing aide. I'm going to see the otologist first. BTW a few months back there was a very good article in consumer reports on hearing aides. Anyone who is like myself, having little first hand knowledge of the subject and getting one, could be helped by it.
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Glen ~
Thanks for the kind words about the forum folks and of course, congratulations on your stable hearing! Watch-and-Wait is fine. Some do it for years....you may be one of them!
I've been a Consumer Reports fan (magazine and website) for some time. I agree, knowledge is power! Good luck with obtaining a hearing aid.
Jim
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Got my 6 month checkup last Friday.
There's good news and there's bad news:
I showed my Otologist my 6 month hearing test It was the same as the previous one. I had a few suprises for him as well. I gave him copies of all my other tests I had since my first visit AND some testing I had done in 2000 and 2001. A hearing test I had in 2001 was almost exactly the same as the current one. He agreed with me that this was great news. This is a good indicator that my situation may be stable. He and I agreed that it's time for a hearing aide.
Now the bad news: Since Monday I've been feeling dizzy and nausious. Some days are worse than others. Now I'm wondering if this is more psycological or real. Maybe something else is a miss. I'm trying to give it another week or so and see what happens. A month and a half ago I was getting headaches on the left side and tingling. That was happening for a week and has stopped now.
Life is full of suprises, isn't it.
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Glen ~
Definitely good news about your hearing stabilization. The dizziness and nauseousness is problematic and may or may not be linked to your AN. Of course, none of us can tell and your decision to give it a bit of time to subside is sensible (definition: what I would do). Yes, it could be psychosomatic but I wouldn't lean on that explanation if the symptoms persist and/or intensify.
I'll readily agree that life is full of surprises. I've been around long enough to have experienced quite a few. Here's hoping yours are not too daunting.
Jim
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Thanks Jim
We just got to hang in there, day by day. I just booked a trip to Mexico. I intend to go in a month from now. I need it! Not sure if I'm going to do the zip line in the jungle though :o
Glen
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I'm going to continue in this topic so as not to make too much mess all over the forum.
It's been a year, so the time has come. Tomorrow morning I'm having my 1 year MRI since my initial diagnosis. I haven't been on this board in a while. I was surprised to see so much activity. I guess that's a great indicator of a strong community. ;)
Anyway, I've be waiting for this to finally get a measure on what kind of growth rate I'm at. I'm hoping for N.O.N.E.
Anyone who would like to send a few positive vibrations my way, please do. I'll except anything, prayers, wishful thinking, any sort of happy thoughts, Who Ha's ("Sent of a Woman"), rubbing your puppy's belly. Whatever you think works is fine.
I wish everyone the best. I haven't been on the forum much lately. It's hard sometimes as you all know. The depression is a factor and it has a way of creepin'' in.
I see the doc. in about a week and a half and I'll post the verdict.
Peace!
Glen
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Two thumbs up kid. ;D
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Hi Glen,
I am sending many thoughts and prayers for an uneventful MRI with NO change!
My sister and i are both here in W &W, and understand your anxiousness.
Please continue to send updates - we are here to share and listen.
Sincerely,
Sue
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Hi Glen,
Welcome to the forum. I am glad that you have found us. As you have said you will experience several emotions and ups and downs, but keep in mind that you have time, good options and the condition is treatable. Have lots of patience, research and you will be o.k. This is a great sight to speak to others that are experiencing the same thing. Take care.
Vivian
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Glen ~
As you noted, these forums are always active, making them helpful. Our members are very dedicated and involved. The posters necessarily change over time, but not the level of involvement.
This is probably going to reach you after the fact (your MRI) so, since I don't use totems, I'll simply offer a prayer for a 'no-growth' report and the hope that you can stay positive.
Jim
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Everyone, thanks for all your positive vibrations. Well the MRI was postponed. The machine broke down. It seems to be a regular occurrence. Last year they were having problems the day before my test and it was resolved. So I'll be going on Thursday. I think I'm taking a sick day for it. This past Thursday night I didn't sleep much. I have a feeling I'll be in the same boat again so why am I being unkind to myself. I haven't taken a sick day in about 4 years. That's the disadvantage of being able to telecommute. They expect you to work unless you are in a coma.
I'll be sure to drop updates when something actually happens.
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Hi Glen,
I am a recent member of the club as well. I just had my 6 month MRI on Monday. Thankfully, my wait and watch status is secure. The tumor hasn't grown and remains small. Like you I get the dizziness and nausea occasionally. I do wonder sometimes if it's just psychosomatic or stress related or if it really is the tumor causing problems. My doc just says to keep track of the symptoms and if they're really bothersome let him know and we'll talk. I've had some balance issues and have taken to doing occasional prat-falls. (I always give myself a 10) Again, don't know if it's related or I'm just a klutz. LOL
I'm in Jersey and we do have a support group here. We meet a few times a year in different locations around the state. Just an FYI - there is a conference coming up at Summit Medical Group in the fall. It's located down Route 78 which is a straight shot from the Holland Tunnel. Probably a 45min. to 1 hour ride. Check it out at NJANA website. Lots of people have used the NYC docs.
I hope you did well today. I'll keep you in my prayers. Lauren
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Hey Alteach Thanks for responding to my post. I am aware of the NJ group. I have been to one of the meetings the folks here in NYC hold (Luncheons). Very cool group of folks. I will try to figure a way to the Jersey event. I don't drive so it's a bit complicated sometimes. Hang in there. Not very long ago I didn't know what Watch and Wait was. Now I am on the team and if I may refraise it, W.W. + W or Willingly Watch and Wait.
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Hi everyone. Thursday I got my test results. My tumor last year was;
0.6 cm AP x 0.75 cm medial lateral x 0.5 cm craniocaudad.
The results this year were:
0.6 cm AP x 0.80 cm medial lateral x 0.5 cm craniocaudad.
My hearing test was slightly worse than 6 months ago.
A little background on this. According to the guy operating the MRI machine, the one I was on this time is a better, newer, more accurate machine. My hearing test this time was done in a sound proof room instead of one of those sound dampened phone booth deals. Also the scale/graph the audiology person marked it on was a little different.
The otologist and I both feel that the difference between 0.75 cm and 0.80 cm may just be a variance in the testing. I will continue on the annual MRI schedule for next year.
Can anyone relate to this? Does it sound reasonable?
Thanks
G_Man
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Hi everyone. Thursday I got my test results. My tumor last year was;
0.6 cm AP x 0.75 cm medial lateral x 0.5 cm craniocaudad.
The results this year were:
0.6 cm AP x 0.80 cm medial lateral x 0.5 cm craniocaudad.
My hearing test was slightly worse than 6 months ago.
A little background on this. According to the guy operating the MRI machine, the one I was on this time is a better, newer, more accurate machine. My hearing test this time was done in a sound proof room instead of one of those sound dampened phone booth deals. Also the scale/graph the audiology person marked it on was a little different.
The otologist and I both feel that the difference between 0.75 cm and 0.80 cm may just be a variance in the testing. I will continue on the annual MRI schedule for next year.
Can anyone relate to this? Does it sound reasonable?
Glen ~
Definitely. This reads like a 'no growth' report, to me. Congratulations!
Jim
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Hi,
Congrats, as a fellow W&W I take it as "no growth" so contine to W&W sounds like a good thing to me. My next MRI is in Oct, I also hope to continue to W&W for another year.
Best Wishes,
LisaP ;D
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Thanks for the congrads all. Now I'm gonna find myself a snazzy case to store all these films. Hopefully there's going to be a lot of them to come and all will indicate the same thing, "NO CHANGE"!
Glen
PS: Good luck in October Lisa