ANA Discussion Forum
AN Community => AN Community => Topic started by: Gennysmom on March 29, 2007, 12:01:36 pm
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Hi all, I've been quiet for a few months, trying to focus on my recovery and everyday life. Missed you guys!!!!
I have registered and got my hotel and air reservations for Philly in July, and I was just wondering who else was past the pondering going point, and can guarantee that they will be there. I know Matti has, but who else? Just curious!
Can't wait to meet everyone!!!!
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I'll be there! I won't be staying in a hotel and probably won't be there late nights unless there's something really exciting going on since I'll be commuting. I live just outside Philly and will be taking the train into town. Guess I'll finally get to meet a few people!
~Karen
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Karen,
We might be neighbors, I live in Drexel Hill PA and my wife is a professor at UPenn Med School, I am seriously thinking of going just to meet some folks and see if I can help.
Cheers,
Steve
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Gennysmom :-* Sure have missed you around here as well as Genny's "ha-ha-ha!"
Will advise on my end about attending.... working it now... JoeF was tossing it around, as was our fearless Captn Deb. Will check in with the scallyway and PirateWench later.
Phyl
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I'm planning on going. I haven't made specific plans yet, though. It'll depend on whether I go by myself or we turn it into a family vacation.
Katie
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Thanks guys! I'm dragging my other half Brian too, but he's going to go play while I'm at the workshops. I won't be "there" late either Karen, I know I'm going to need quiet time to decompress and spend time with Brian. And we have tickets to the Phillies/Cardinals game on Friday night!!!!!
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Katie,
Pls keep me updated on your travel plans (flights/train/etc). The "best coast" gang can invade... er... arrive in Philly ear to ear! :)
(can discuss at brunch!)
Phyl
I'm planning on going. I haven't made specific plans yet, though. It'll depend on whether I go by myself or we turn it into a family vacation.
Katie
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Hi
Just curious are people attending to find out new treatment options, gather info or is it generally to meet with each other and learn from each other? Since my husband had his surgery by these dr's at jefferson and has had such bad results I don't think attending would be of any benefit to us. We feel this is just a big pr campaign for their neuroscience center which by the way was never mentioned to us prior to his surgery, because if it was we would have waited and had the surgery done there. I feel we have learned more from the great people on this web site than anything. It is just a shame the dr's said take anything you read on the web site with a grain of salt because these are the complainers, the extreme cases, patients with good results don't have time to read the web site. This was the worst advise we could have listened to from the dr's. If we would have read more and realized the credibility of all of the members on this group we would have been an wait and watcher with the an only being 9mm pre op. We can't thank you all enough for all your help and feedback.The only reason we would attend would be to meet some of the great people in person. I have attached some of our emails to other members to give you a backgound of my husbands experience. Wishing you all well andwe keep all of you in our prayers.
Don and Mary Ellen
Hi Mike Yes getting yourself in good hands is important, but even that is no guarntee! My husband had surgery at Jefferson Hopspital in Phila by the Dr's Evans & Willcox who are sponsoring the Acoustic Neuroma Symposium this year so you would think all would be ok, RIGHT? Since you are new you may not know Don's story I'll sum it up. 46 Yo happy, active, man who runs each day loves to travel, is a master plumber, coaches ice hockey, manages our son's teams web site etc, looks 35 yo also, big plus for me :) His only symptoms was tinnititus pre op. Found 9mm AN on mri had retrosigmoid surgery on 7-20-06, it is now almost 8 mos post op. From the 1st night post op has had facial palsy, eye does not close, I had to call an ophthalmologist to see my husband luckily I work for Dr on staff at Wills eye hosp connected to jeff hosp since no one else noticed his eye was not closing right away, if I was not staying there he would have been alot worse off a word to the wise stay with the person having surgery at least for the 1st few days this should not be necessary after all you are in"Good Hands":( Next he has had severe headaches 24 hours a day 7 days a week no relief since surgery surgeons can't help they just pawn you off on the Headache Center at Jeff, who by the way are very helpful and caring I would recommend them! They try many meds botox etc it's all hit or miss the pain varies from 3to10 on the pain scale never a 0 in 8 months :( His hearing is intact. He had to do PT daily even had someone come to the house for weeks post op. Then on to vestibular tx they were very helpful his balance is better, we are up to walking 2 1/2 miles, it's not running 5 miles but it's better then nothing. His tongue was painful for weeks post op, now no pain but taste is still altered. He wears an external weight on his lid to help his eye close he puts tears in and gel several times an hour, The weight is annoying but we are so afraid of another surgery we'll stick with it for now. Dr's first told us don't worry about facial palsy, then it was you'll be better in 3 mos, then 6mos now they say a year if ever :( And on top of it all they did not remove the whole tumor which was only 9mm to start when in the op notes it says they did remove??? He has a 4-5 mm enhancing area since the 1st day post op and has had an mri every 3 mos since with no change. The neuro wants us to consider fsr my husband says NO WAY we'll just wait and watch and hopefully it will never change. Wish we would have know more about the other options and this web site actually when I mentioned it Dr Willcox said only the complainers and people with problems are on it (ie the people with bad outcomes )so take what you read with a grain of salt!!! Trust me we are not complainers we are, no were happy fun people. Again wish we would have read more maybe we could have made a different decision. So please by all means read inform yourself if you can wait and watch only do something if it grows who knows you may be lucky and this is all it is no changes forever. I wish that for you. WOW no way I can be brief this is TOO important, it's been a life changing surgery for us I include myself because we are in this together. I think the people on this web site are very informative and willing to help each other with any issue. Please feel free to contact us for anything.
dr willcox the neuro- otologist said he did 300 of them dr evans the neurosurgeon was about the same by the way they are some of the dr's sponsoring the symposium which again seems to be pr for their new neuro center where they will be doing these surgeries. we were never told of this at the time if we were maybe we would have waited to have it there, as it was dr evans was in an emergency surgery first thing in the am when we arrived for surgery we were never told of this and don's surgery was delayed over 6 hours, i guess we'll never know if dr willcox just rushed to get done since he was supposed to be in surgery all that time and was dr evans tired after doing an unscheduled surgery, again all this in hindsight. the or should have made us aware of the delay we probably would have rescheduled as it was don laid outside the or alone for 6 hours they never told be he was not in surgery when they took him i just assumed he was in surgery. i really could not in all good conscience recommed them for this and many other reasons
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Hi
Just curious are people attending to find out new treatment options, gather info or is it generally to meet with each other and learn from each other? Since my husband had his surgery by these dr's at jefferson and has had such bad results I don't think attending would be of any benefit to us. We feel this is just a big pr campaign for their neuroscience center which by the way was never mentioned to us prior to his surgery, because if it was we would have waited and had the surgery done there. I feel we have learned more from the great people on this web site than anything. It is just a shame the dr's said take anything you read on the web site with a grain of salt because these are the complainers, the extreme cases, patients with good results don't have time to read the web site. This was the worst advise we could have listened to from the dr's. If we would have read more and realized the credibility of all of the members on this group we would have been an wait and watcher with the an only being 9mm pre op. We can't thank you all enough for all your help and feedback.The only reason we would attend would be to meet some of the great people in person. I have attached some of our emails to other members to give you a backgound of my husbands experience. Wishing you all well andwe keep all of you in our prayers.
Don and Mary Ellen
Hi Mike Yes getting yourself in good hands is important, but even that is no guarntee! My husband had surgery at Jefferson Hopspital in Phila by the Dr's Evans & Willcox who are sponsoring the Acoustic Neuroma Symposium this year so you would think all would be ok, RIGHT? Since you are new you may not know Don's story I'll sum it up. 46 Yo happy, active, man who runs each day loves to travel, is a master plumber, coaches ice hockey, manages our son's teams web site etc, looks 35 yo also, big plus for me :) His only symptoms was tinnititus pre op. Found 9mm AN on mri had retrosigmoid surgery on 7-20-06, it is now almost 8 mos post op. From the 1st night post op has had facial palsy, eye does not close, I had to call an ophthalmologist to see my husband luckily I work for Dr on staff at Wills eye hosp connected to jeff hosp since no one else noticed his eye was not closing right away, if I was not staying there he would have been alot worse off a word to the wise stay with the person having surgery at least for the 1st few days this should not be necessary after all you are in"Good Hands":( Next he has had severe headaches 24 hours a day 7 days a week no relief since surgery surgeons can't help they just pawn you off on the Headache Center at Jeff, who by the way are very helpful and caring I would recommend them! They try many meds botox etc it's all hit or miss the pain varies from 3to10 on the pain scale never a 0 in 8 months :( His hearing is intact. He had to do PT daily even had someone come to the house for weeks post op. Then on to vestibular tx they were very helpful his balance is better, we are up to walking 2 1/2 miles, it's not running 5 miles but it's better then nothing. His tongue was painful for weeks post op, now no pain but taste is still altered. He wears an external weight on his lid to help his eye close he puts tears in and gel several times an hour, The weight is annoying but we are so afraid of another surgery we'll stick with it for now. Dr's first told us don't worry about facial palsy, then it was you'll be better in 3 mos, then 6mos now they say a year if ever :( And on top of it all they did not remove the whole tumor which was only 9mm to start when in the op notes it says they did remove??? He has a 4-5 mm enhancing area since the 1st day post op and has had an mri every 3 mos since with no change. The neuro wants us to consider fsr my husband says NO WAY we'll just wait and watch and hopefully it will never change. Wish we would have know more about the other options and this web site actually when I mentioned it Dr Willcox said only the complainers and people with problems are on it (ie the people with bad outcomes )so take what you read with a grain of salt!!! Trust me we are not complainers we are, no were happy fun people. Again wish we would have read more maybe we could have made a different decision. So please by all means read inform yourself if you can wait and watch only do something if it grows who knows you may be lucky and this is all it is no changes forever. I wish that for you. WOW no way I can be brief this is TOO important, it's been a life changing surgery for us I include myself because we are in this together. I think the people on this web site are very informative and willing to help each other with any issue. Please feel free to contact us for anything.
dr willcox the neuro- otologist said he did 300 of them dr evans the neurosurgeon was about the same by the way they are some of the dr's sponsoring the symposium which again seems to be pr for their new neuro center where they will be doing these surgeries. we were never told of this at the time if we were maybe we would have waited to have it there, as it was dr evans was in an emergency surgery first thing in the am when we arrived for surgery we were never told of this and don's surgery was delayed over 6 hours, i guess we'll never know if dr willcox just rushed to get done since he was supposed to be in surgery all that time and was dr evans tired after doing an unscheduled surgery, again all this in hindsight. the or should have made us aware of the delay we probably would have rescheduled as it was don laid outside the or alone for 6 hours they never told be he was not in surgery when they took him i just assumed he was in surgery. i really could not in all good conscience recommed them for this and many other reasons
WOW! Very sorry to read about your frustrations. I too heard the same remarks, but found differently when reading as I use the "negative/scary stories" as a guiding light on a dark road of choices. All I can say is time does heal. I too had 24/7 headaches, I am 2 + years post retrosigmoid surgery and had difficult time believing they would go away, but now I am down to one ibuprofen (I am not recommending this, but what I found to work) every couple weeks. Massaging the incision site helped to release scar tissue pulling/tightness. Yoga helps with total body healing, mind, balance, breathing, headaches, muscle tension, etc. some find Tai Chi helps also. Right from the "get go" I was told "If you have to have a brain tumor, this is the one to have as they are almost always non cancerous." So, right off the bat the surgeons who deal with these all the time (we don't so we are afraid) are already treating this matter-of-factly, sort of like setting a broken bone, no big whoop. I can understand your feelings of abandonment. I had this happen at my one-year follow-up by my Neurosurgeon who kept putting off calling me as he had more important issues to deal with for six weeks? Still waiting for an apology from him. But, the good side here is you will get better and it does take time. So best to relax with this knowledge, take whatever pain meds will work and that are prescribed by your doctors to get you through the tough road. It is unfortunate that once the surgery is performed you do feel as though you are shoved out the door in hopes never to be heard from again. I am sure this is not the case though. I did read an interesting book shedding light on what neurosurgeons are like, "Another Day In The Frontal Lobe", by ???? name escapes me, but I wanted to have a clear understanding of why ANers fall between the cracks after surgery. Our tumors are not really brain tumors because they do not grow from the brain, they are not classified as serious because they are not cancerous and they are slow growing. Surgeons deal with aneurisms, cancerous growths, etc. that are acute, ANers are not acute so we are treated as such. Not good news here, but realistic. :-\
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By The Way,
I am seriously considering attending and to see the Mutter Museum if time will have it.
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Hi Karen
Glad to hear you are doing better! Don does go to a pt who is very into holistic hands on tx. He does craniosacral release, and does alot of different massage tx's in the scar area. He does exercise every day and does meditation which he has been doing for years. I tried yoga and realized I'm not flexible, but we have been thinking about trying it together at our local center. I think the dr's need to read this web site to see how their pt's really feel and of their struggles of every day life. They get up every day headache and pain free and go to work, they have no idea what the post op pt's are going thru. I work for a great group of ophthalmic surgeons and I see how they treat their pt's and all I can say is the neurosurgeons and neuro-otologist's could learn alot. I hope Don can get to the pont where he can take 1 advil every few weeks for headaches.
ps my son went to the Mutter Museum and said it was interesting but very odd things also, I guess it depends on what you like :)
Take care
Mary Ellen
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Hi! I'm sorry about your husband's problems with his surgery but there are also successes at Jefferson. I do believe their "new" neuroscience center isn't all that new and is where I had my surgery performed in 2004 and where they've been performing all their surgeries in the past few years but then again, I haven't been there for three years. It used to be the Wills Eye Hospital at 9th & Walnut Sts, matter of fact, they were still converting it and when I went there the name "Wills Eye Hospital" was still on the outside of the building! I guess they finally finished renovations. So I don't think it's a totally new building but rather a renovated facility from what I understood. My team consisted of Drs. Wilcox and Rosenwasser. I didn't know of Dr. Evans. My AN was a bit larger and pressing on the brain stem so I didn't feel I had an option to wait and watch and just wanted the bugger out and gone and although I did have a CSF leak to deal with a couple of months later, all in all, I do consider myself lucky in that I didn't have paralysis, just balance issues, tinnitus, deafness and headaches, but I had the headaches prior to surgery also. So although, like I said, I am sorry to hear of your husbands troubles, I had, what I look back on now, as a positive outcome at that facility.
So as not to change the topic completely (which I sometimes tend to do), I am going to the symposium not just to meet some of the wonderful people I have met on this forum, but also to see if I can gain any valuable and/or new information on finding help for dealing with the headaches and tinnitus I have trouble with these days.
~Karen
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I have made my reservations and flight arrangements to be there. Having attended the last one in Orlando, prior to surgery, talking with persons who had already had surgery was very enlightening. Now, post surgery, I hope to do the same for someone this time around. I am hoping my husband will come as we have never done the Philadelphia "tourist" scene.
Viki
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Hi Karen
I'm glad there are some patients who feel their surgery was a success at Jeff. Don's surgery was done in the hospital not the old Wills ( i actually worked at Wills for years) I wonder why they used it years ago and now use the main hospital??? There are alot of things I wonder about @ Jeff. >:( But anyway I can tell you the headache center at Jeff is wonderful. They have several post acoustic neuroma patients. Dr Silverstein runs the center but his fellow Dr Marmura is very caring and compassionate. Even if your appointment is with the fellow, the attending always comes in and reviews everything with you. My husband had met with several Dr's from other countries also while there. It seems Let Miriam the director know that you are post an surgery and you can avoid the 500.00 psych eval that is required for migraine ha pt's. The only downfall is you do wait for appointments but, you do get alot of time with the dr. You stated you had headaches prior to surgery, were they from the an? Since you read Don's pre and post op story you can see he had a small 9mm an with tinnitus as the only problem, so to come out of this surgery with more and severe problems has totally blindsided us :(
And now with this 4mm enhancing area post op we feel we are back to square one.
Take care and God bless
Don & Mary Ellen
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I haven't been to the headache clinic yet but may end up there after all. Dr. Rosenwasser had suggested it but the headaches had seemed to subside a bit. They seem to always get worse in the winter and honestly, if I am a major wimp and will avoid going out in the cold weather if at all possible. I am seeing a very good neurologist at Abington hospital who has a good friend from the headache clinic at Jeff and thinks he will be sending me there next but since it's warming up a bit, I won't mind as mucfh LOL! I had been doing pretty good in the last month but it seems that the headaches are starting up again. I honestly think it's because of the change in weather again, but then again, what do I know :/ I don't know if the headaches are AN related, the AN docs didn't seem to think so, I was told that ANs rarely have headache associated but have heard otherwise from people who would know more about that, like the patients!!! It's true that many docs seem to think that as long as you've come out of the surgery "alive" so to speak, things are good. The follow up care for AN patients is not there for many of us and I think that is a major problem. Many of us do know that there are residual problems to deal with. So, my only problem going into this I guess was maybe headaches and reduced hearing. Post op I have no hearing on AN side, headaches (not sure if an related), and major, did I mention Major, tinnitus. I don't know why they used the Wills Eye Hospital then and not more recently. I was told, at that time by Dr. Rosenwasser, that it was going to be, or that it was, the neurosciences hospital of Jeff :/ I figured they had been using it ever since. You learn something new everyday. As far as Dr. Evans, I have no idea who he is.
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Hi Everyone,
Well I have made reservations and my husband, Gary, will be with me too. He's easy to spot in a crowd as he sports a bald head and grey beard growing past his chest! I look forward to meeting all of you!
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Looks like I am going... no word if Iain/Cheeky Bloke will make it as that is all based on US Immigration letting him into the States and when. Will advise further updates on my attendance but as of now, looks like I will be there!
Phyl
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Newest Newbie writing here...I plan to attend the Symposium in July, for whatever it is worth to anyone else since I don't know anyone here and am showing my baby-boomer age by being quite overwhelmed by this Forum Board! I am wondering if I will ever find my way back in here again!!
I have attended one previous Symposium in 1999, held in Milwaukee. I decided last week to see if I could find this website again because I would like to find inspiration in some kindred spirits and also to learn what the latest developments are for restoration or partial restoration of hearing capabilities. Plus, I've never been to Philadelphia. But I must wonder if my scarred head is betraying me for thinking I could survive in the heat and humidity of a steamy Philadelphia in July!!
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Hi Take it from a life long Philly resident July is HOT & HUMID so pack accordingly. Just thought I'd pass on an experience we had at the Jefferson Headache center this past Friday. My husband who is 9 mos post surgery has been going there since 10/06 for some relief from his daily post-craniotomy headaches. He has been on many differnt meds but really no improvement. The Botox injections seems to help the most. But we keep hoping that he'll find the right med to give him some relief. Back to our experience we see the Fellow there he is very caring and sympathetic, but since he is a Fellow all patients must be either seen or discussed with one of the attending dr's which is fine. Well the director of the clinic comes in and the first thing he says to my husband is has the Cymbalta caused any erectile disfunction? Granted this can be a side effect so my husband says no. End of story right??? No this dr proceeds to ask the MOST INAPPROPRIATE line of questions which has nothing to do with the care of his headaches. Such as how often do you have sex, my husband does not answer, and he keeps pushing and pushing so finally I say it's none of your business it has nothing to do with his headaches. And then he proceeds to say I won't treat you anymore if you don't go to couples counciling! I then stated again this has nothing to do with your treatment, you met us 2 minutes ago . But this guy was so rude and pompus, I said is there a right answer to your question? who are you to deterime what is normal for couples?, but he was just not happy he could not get an answer! The tactful question would have been is there any change in that area of your life, but tact must have been a class he did not take in medical school. Just wanted the AN family to know, because this dr is one of the symposiums presenters!!! :-\ I work for an ophthalmology group and discussed it with our dr's if his line of questions had any medical warrant for asking and the dr's stated a strong NO!
I have worked in the medical field for over 25 years and never have I felt as uncomfortable as I did in that situation.My husband was and still is upset for the way he spoke to us, and left there with a worse headache then when he came in.
We will march on looking for the "cure" for these headaches, just don't want others to be looking for the answer to the headache questions at the symposium.
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I wish I could go to the symposium, but, I think that is the same time that my daughter has a baton competition.
That being said. I am really getting worried. I go to see Dr Wilcox on 5/15. Then I go back to see Dr Evans after that
Haven't scheduled surgery yet. I am really haven't second thoughts after reading these posts. I felt very comfortable with Dr Evans when talking to him, but, after reading horror stories, I don't know what to do. I have been told by Stevey about Dr. Judy and Dr. Bigelow at University of Penn. I just don't know what to do. I was never given the wait and watch. Only choices were surgery or Gamma KNife. I just want the darn thing gone. Please help.
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John,
IMO, life is filled with risks. I know so many here locally to Boston that had surgery and have fantastic outcomes... even Crazykat/Paul, who's AN was the size of a softball (trust me, I've seen his MRI films up close and personal) and he's doing fabulous... as are so many others. Remember, this is a limited number of folks that log onto this website as there is still an array of AN'ers out there that do not log on, so they have stories... some good and some not so good....
You do what you feel is best for you. There are other radiosurgery options (besides GK but GK is still an extremely viable AN treatment option) as well (FSR, Cyberknife and Proton) if you do decide to stick to the radiosurgery route (lots of info in the "Archives" forum, as well as the "radiosurgery" forum. I have faith in you to do what is best for you... and remember to be at peace with what you choose. Never 2nd guess your decision as you are doing what is best for you at the time of making your decision.
Hang in there John. Research, research and you are doing great by reaching out to those of us here. There's many of us with great outcomes, good outcomes and not-so-good outcomes. Just remember one thing.... "individual results may vary"... just keep that in mind.
Phyl
I wish I could go to the symposium, but, I think that is the same time that my daughter has a baton competition.
That being said. I am really getting worried. I go to see Dr Wilcox on 5/15. Then I go back to see Dr Evans after that
Haven't scheduled surgery yet. I am really haven't second thoughts after reading these posts. I felt very comfortable with Dr Evans when talking to him, but, after reading horror stories, I don't know what to do. I have been told by Stevey about Dr. Judy and Dr. Bigelow at University of Penn. I just don't know what to do. I was never given the wait and watch. Only choices were surgery or Gamma KNife. I just want the darn thing gone. Please help.
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Thank you so much. I have tried to leave it in God's hands. I guess I got a little panicky. I guess that is normal. I feel better now.
You guys are the best. Dr Evans said not to wait to much longer, because of my balance issues and my headaches. No longer than about two months. The office has called a couple of times to check on me, so that is good. I would love to meet you guys and maybe I still can.
LOL
XOXOX
Laura
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Laura
me bad! :o You are not John! :o sorry bout that!
If you can research local ANA support groups, IMO, that would be a terrific opportunity to meet face to face with others who have been the route.. as well as others in watch/wait mode. It truly does make a huge difference when you meet folks in person.
I know you are going to be fine.... and all of our shoulders.. .and good ears are here for you. Take advantage of it..... that's why we're here.
Hang in there... Laura! :)
Phyl
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I've registered and got the hotel reservations for the Symposium. Now I just have to figure out how to get there! ;D
Phyl - let's get in touch after I get back from AZ next week and we'll coordinate.
Katie
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I've registered and got the hotel reservations for the Symposium. Now I just have to figure out how to get there! ;D
Phyl - let's get in touch after I get back from AZ next week and we'll coordinate.
Katie
You got it Katie... will do my hotel reservation this week and have a fab trip to AZ! :)
Phyl
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I'm going....hold the plane please! :-*
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Oh, Philly is in deep doo-doo!!!!!!!! ;)
YAY Batty!!!!!!!!! Can't wait to FINALLY meet you!!!!!!!!!!! :-*
Phyl
I'm going....hold the plane please! :-*
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OK all you scurvy scoundrels and wicked wenches!
Capt Deb has her rezzies at the Hotel Double-bubble-toil-and-troubletree and will not have to sleep in her hammock unless her room fills up wiv homeless ANers who shows up unannounced!
Capt Deb 8)
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Cap'n Deb going--yeah! Here's trouble. Look forward to meeting everyone.
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I've begun to take donations for bail money..... :D
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I'll bake the cake that hides the drill.
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Karen, make it chocolate with chocolate frosting? ;)
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I'll be there. Hope you folks will come by to say hello!
TransEarXpert (Rick)
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should we start an official list of those attending? I've got my pirate gear all set to be packed....
List of forum attendees?
ppearl214/Phyl
Capt Deb?
matti/Cheryl?
Gennysmom/Kathleen?
Transear/Rick
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Cheryl R coming too
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Got it Cheryl! :) Thanks!
List of forum attendees:
ppearl214/Phyl
Capt Deb?
matti/Cheryl?
Gennysmom/Kathleen?
Transear/Rick
CherylR
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Sorry to say .. I was planning on going .. but my canceled fishing trip to Canada this year was re-scheduled for...you guessed it ... that weekend... :'(
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Sorry to say .. I was planning on going .. but my canceled fishing trip to Canada this year was re-scheduled for...you guessed it ... that weekend... :'(
Dang it! >:( I know I get to see you any old brunch time.... and I know others that were looking forward to meeting you... fish can't wait, eh?
Oh, heck!
Phyl
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I would like to attend a few seminars. I used to work at that hotel many years ago when it was the Hershey Hotel. They used to hand out Hershey bars to every guest. They would keep boxes of them in my office and I used to eat them almost daily. I couldn't help myself. Finally, they found another room for them. I warned them I might eat them all if they didn't get them out of there. Karen, you bring the cake I'll bring the drill. ;)
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YAAAAY! Transear Rick's gonna be there! He bringin' the Doc? Sorry to say I still haven't gotten over the mountain to visit with ye! My busy season is upon me now and I'm trying to paint up a storm so's I can afford the gizmo.
Capt Deb 8)
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I'm going. Got my reservations and everything. Maybe I'll borrow my 5yo's pirate hat so's y'all will recognize me! ;)
Katie
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Katie, you and I will walk in arm in arm, with total "Best Coast" Pir-at-i-tude. Will check in with you later re: air/ground transportation......
List of forum attendees:
ppearl214/Phyl
Capt Deb?
matti/Cheryl?
Gennysmom/Kathleen?
Transear/Rick
CherylR
FlyersFan68
kbonner/Katie
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Batty and Redgrl will be there too. And of course me and the best man in the whole world!!!!!!
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I'll be there! Steve did you decide to come? Should I bring my Flyers jersey?? or my Golden Retriever?? LOL
~Karen
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My hubby Shelton and I are attending. Can't wait to meet everyone ;D Bail money is all set for Phyl
Joef - I'm disappointed, I was hoping to finally meet you.
Cheryl
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Matti,
I think you're being optimistic, no one has enough bail money for Phyl ;D :o. Hope you all have a good time :D
Mark
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Don't worry Phyl. If we don't have enough bail money, we will send "Guido"!!! ;D :-X
Have fun!!!!! ;)
Mary
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I'll be attending as well. I live in Philly and look forward to meeting you all !
Dave
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Hey Phyl,
Add me to the list, oh and my hubby too!
Hershey bars! Yesssssss! Skip the drill flier, I'm bringing a large size plastic bag! Trick or treat?
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No bail money will be enough, unless someone has a direct path to Donald Trump's bank accounts (all of his Swiss bank accts!) ;D
Updated AN'ers forumites attending:
ppearl214/Phyl
Capt Deb
matti/Cheryl
Gennysmom/Kathleen
Transear/Rick
CherylR
FlyersFan68
kbonner/Katie
arushi/Karen
madshackle/Dave
static/Karen
Battywench/Michelle
redgrl
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I'm checking in Thursday night--anyone else? Dinner? We need to make sure we all have each others cell #s so we can meet up when we want. I don't think I'm up for the hospital visit that's sceduled and would rather do some sightseeing during that time--Philadelphia Museum of Art? Liberty Bell?
Capt Deb 8)
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I read where one needs timed tickets for the Liberty Bell and I haven't decided when we will go. We are staying over till Tues so can sightsee. We don't get in till Thurs eve. I am not doing the hospital tour either.
I am looking forward to getting a cheesesteak sandwich at some point.
I talked to the event planner and was questioning the music during the banquet and she said that music will be light and hopefully not too noisy. I have never seen the banquet described as semi formal. I am bringing a dress for that. My husband will be coming to the banquet as will pay for a ticket for him but he is not doing the rest of the symposium.
Won't be long and it will be symposium time. Cheryl R
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CherylR - I have the Cheesesteak sandwich thing all mapped out and will be glad to fill you in. Apparently there is a right and wrong way to order. Wrong way and you're sent to the back of the line. Will post that info.
Thanks for the info on the Liberty Bell, I didn't know about the timed tickets. My hubby and I are arriving on Tuesday and will do our sightseeing Wed and thurs. and take some time during the symposium. He is only attending one workshop with me and the banquet.
Cheryl
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Cheryl, I'm going to tag along with you all for those Philly Cheeeeeese-steaks! YUM! :)
FYI... I'm arriving Friday morning and flying out early afternoon on Sunday..... best I could do with my work schedule and CB/Iain's pending arrival date to the States. He will not be coming to the symposium but you'll meet him soon 'nuff.
PHyl
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Oh No! the Cheesesteak Nazi! "No Cheesesteak for you! Back of line!"
Tee-hee-hee! ;D
Silly Captain Deb 8)
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I will be attending. I look forward to meeting all of you!!
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Taylor and I will be there! We get in Thurs afternoon. Looking forward to meeting all of you. May need to start a bail money fund.
Taylor's Mom
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Oh Goody! I'm excited to meet the infamous Taylor and her infamous Mum!!! I'm getting in thurs aft as well. You won't be able to miss me--I'm the one in the boots with the cutlass.
Capt Deb 8)
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OMG!!!!! We get to meet Taylor and Mum!!!!! FAB news!!!!!! Vicki, you too!!!!!!! OMG, what a turn out the forum site is going to have at the symposium! :)
Updated forumites attending the symposium:
ppearl214/Phyl
Capt Deb
matti/Cheryl
Gennysmom/Kathleen
Transear/Rick
CherylR
FlyersFan68
kbonner/Katie
arushi/Karen
madshackle/Dave
static/Karen
Battywench/Michelle
redgrl
vcschaub/Vicki
Taylor (and Mom!)
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when I went to the liberty bell you stood in line and just waited your turn. Hmm...
There are some interesting things to see if you're into historical stuff...
FYI the mall is in a brick building and is not easily distinguished as a mall for those of you not from a big city LOL Yes, there's a story there ;D 9 blocks is about 2 miles ;D :D ;) :-*
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I googled Liberty Bell and found it says that you don't need the tickets for the bell but do for Independence Hall. I need to look it up in my Philly travel guide again as am confused about what I read there. I will get it figured out by the time I need it.
A co worker who has been there mentioned the cobblestone streets in some areas which ought to be real fun for us balance impaired tourists.
Cheryl R
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Oh geez, I guess I'll just see all you at the symposium. I grew up in Philly and all this talk of sight seeing is making me sick LOL! The cobblestone streets aren't that wobbly and the Liberty Belll is just a big bell with a crack down the middle of it, I've driven by it a gazillion times and also walked through Independence Mall plenty as well! I guess if you've never been there tho, it is something to see. As far as the steak sandwiches go, it's very simple.* Hoagies are better tho, as are real Philly soft pretzels (not the ones from a street vendor) with an ice cold water ice from Pops in South Philly. I hope everyone enjoys the city, I personally try to stay away from it and am only going there to meet folks from the forum and to try and learn a few things that have been buggin me! See you all in July! ;)
~Karen
*If you need to know how to order the steak sandwiches, just ask and I'll give you the details so you don't get sent to the "back of the line"!
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The only thing funnier than us on cobblestone streets is us dancing in high heels!
Capt Deb 8)
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HIGH HEELS? OH MY....actually was trying to decide if I could get away with tennis shoes and semi formal wear..heck it was good enough for heather mills on dancing w/the stars..a little glitter goes a long way! ;)
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Can I wear jeans and a Tee with those tennis shoes to the semi-formal?? ;)
I haven't had to really dress up since before I had kids. And let me tell you - my shape ain't nearly the same as it was before, and I ain't got nothin' that fits! LOL!
Katie
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If we're wearing jeans or any kind of pants/khakis to the semi formal, I'll see you there, otherwise, you can count me out! Does the hotel have a lounge????? ;D
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I'm not planning to wear a dress to the semi-formal. I'm thinking a pair of black pants and somewhat of a fancy blouse :-\
Good idea Michelle! Anyone have a bedazzler? do they still make those anymore? I do have a pair of black sketcher tennis shoes that look like maryjanes, maybe I will wear those.
Cheryl
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Can I wear me boots and cutlass?
you-know-who
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No kidding--I'm planning on glitzing up--yup I do own a dress--and yes, it fits over my caboose--faculty wife and all--its very stretchy.
Capt Deb
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Can you give the dates and times ? 8 months pre-op ,left side droop at the mouth, left side no hearing ,and walk like a drunk. ::). So I may really fit in with this group ;D I have been on the forum for about 7 months now just reading everyones topics. I hope to hear from someone who can give me some information. I live in Maryland and Philly is about 90 miles from my house. I was once a salesman for TastyKake but the AN was the cause for leaving. I really don't know to much about Philly but we have Map Quest. Nice talking to you. My AN was done at Johns Hopkins by Dr. Henry Brem and Dr. Michael Holliday on Sept 19, 2006.
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All the information can be found here: http://www.anausa.org/symposium.html (http://www.anausa.org/symposium.html). Follow the links there to get detailed registration and session information. Hope you can join us!
Katie
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A Salesman for Tastykake and you don't know Philly??? Oh my! I was wondering when I read another one of your posts that said your treatment was at Johns Hopkins, whether or not you were from Philly. Tastykakes are about as Philly as cheesesteaks, hoagies and softpretzels! At least they used to be. They don't make them as good as they used to and they don't cost 15 cents any more either! Maybe we'll see you there!
~Karen
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Karen, The guys who serve all the food outlets are Owner/Operators. We are under contract to serve a fixed area . My area was in Maryland, Harford County to be exact. I have been to the factory and I have tour the plant. They don't do it any longer because of safety reasons. I was doing it for a long time. I finally had to give it up because of the AN. I could'nt fill the selves that were below my knees without loosing my balance and very dizzy. I miss my job because I liked it so much. The only time I was in Philly was to tour the plant. I stopped at a cheesesteak store and got a sub (hoagie if you are from Philly). I eat it in my car ,what a mistake.Thank you for the web site. I'm only sorry I didn't get this sooner. I will be going on a cruise that week. (Oh boy, balance).
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What are TastyKakes? I never seen any in the midwest.
Cheryl R
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Hey Guys,
I would love to go, but, I really can't afford it. I would absolutely love to meet you all. You are all an inspiration, and give me hope to face the future. Maybe we could meet for a snack. I am supposed to go to Ohio that weekend for baton, but, I think were gonna stay home. There is always next year for the baton competion. We will be going to Washington DC on the 4th of July. My daughter will be performing in the parade. Also, the first week in August we are going to Knoxville, TN for the Junior Olympics. So much to do, as long as my "booger" doesn't act up. Maybe lunch on Sunday.
LOL
Laura
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Cheryl,
Tastykakes are snack cakes made by a company called tastykake in Philadelphia that I grew up with (sort of like hostess, or little debbie). They make all kinds of cakes and if y9ou are ever in Philly, you should try the butterscotch krimpets or peanut butter kandy kakes, they are their best. They aren't as good as they used to be years ago, but they are still very good! My favorites were always the butterscotch or the chocolate cupcakes. As far as I know, they don't deliver them out of a certain area but will deliver them if you internet order them which is why you have ne er seen them in the midwest. So, it's just another Philly thing!
~Karen
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I grew up in the Philadelphia suburbs and remember tastykakes well, used to love Butterscotch krimpets. I have a theory they may have caused my AN. Couldn't have been the cheesesteaks or hoagies. OK, kidding about causing the AN ;D ;D
mark
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The Tastykakes sound very good. I am coming to Philly for the symposium so I will check into them. My family has always made fun of me for liking to visit grocery stores when we have been on trips as is interesting to see what different brands and things certain areas have.
Cheryl R
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Karen, I could not have explained it any better. Thank you. Tastykake has been around since 1902. I usually play a trivia question on those who know about Tastykakes. The question is what was the first item that was made by Tasty bakery? Was it the chocolate cupcakes ? Was it the butterscotch krimpets ? Was it the peanut butter kandy kakes ? ??? The very first thing made by Tasty bakery was A Preztrel Stick . Noticed I wrote Tasty bakery and not Tasty Baking company. Tasty bakery tiurn into TastyKake a few years later after the chocolale cupcake was produced. The furtherest west that they travel is to Pittsburgh and Martinsville West Virginia. The furtherest south they go is Richmond, Virginia. and the furtherest north they travel is upper state New York. :o And the rest was history. Bob
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Bob,
I don't know enough that I would've known all that trivia, but I do know that I think tastykakes are way better than alot of those other snack cakes out there! The chocolate cupcakes were always my favorites as were the butterscotch krimpets. I have my own version of the pnut butter kandy kakes that I make myself. I thought I had heard that they were moving the plant from Hunting Park Ave in Philly, do you know if that is true? I do know, although I don't get them as often as I used to, they will always be one of my favorites!
~Karen
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Hi all,
Sorry to disappoint 1 or 2 of you, but I have had to cancel my trip to the symposium... seems that.... Iain/CB's permanent arrival to the States falls in the same timeframe! :) (he's been cleared for VISA entry to the States) Will need to prepare for his arrival and greet him with BIG huggles as we FINALLY start our new co-habitation married life together. So, please accept apologies and do hope to meet you soon..... have a great time and a few pirate "happenings" for me :)
Phyl
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Very happy for you and you are probably happier! Enjoy!
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OK all you wenches and scallywags, Capt Deb is through sitting on the taffrail and has booked her plane rezzies.
I can't believe I'll be getting to meet some of you face to face in 2 weeks! Yowza! I'm waxin' me boots and a'sharpenin' me cutlass as we speak! Dr Love will remain aboard to pump the bilge and fend off Sea Monsters.
I'd be glad to share my room wiv another wench to save us both some $ since he's not gonna be there.
What wiv no more prescription drug coverage for the year I'll be expectin' all of you to start scamming Imitrex Injectable samples from yer docs, since I blew alla me stashed doubloons on the bleedin' plane ticket. I go through one or two 6g vials a week. Phyl took care of last week and we will all miss seeing her. If any of you forget your PBW Uniforms, I'm bringing extras, as well as for any new recruits.
Look out Troubletree!
Capt Deb 8)
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Is there a plan for all us pirates to meet up? What happened to the Friday night part-tay?!?!?
Looking forward to meeting some of you!!
Katie (arriving Friday morning)
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Hey Katie,
there was talk of Pirat-i-tude for Friday night. In light of me now not attending, I would check with Capt Deb or others to get update... and please give everyone one of my huggles since I can't attend. I hate the thought of not being there with you all.
Phyl
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I plan on checking in to the symposium some time Friday around noon or so depending on when I get my rear out of bed. Change of plans for me......... seems I'm driving into town instead of taking the train since it's too far to walk to and from the train especially late at night to that particular hotel in Philly. If there's something going on, let me know! See you on Friday.
~Karen
PS I don't look anything like my picture! ;D ;)
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Karen,
If you do look like your picture/avitar... I'm sending my professional-grade hair clippers along with Katie/Kbonner so hair cut can commence (since I won't be there)....
Have a fantastic time all! Will be on bail alert as I'm counting on you all to stir up trouble in my absense!
Phyl
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I'm sure we'll get something going for Friday night--maybe in the bar or something if the ANA doesn't have a social something organized. . All PBW crew be sure to bring official uniforms and accessories or whatever. I emailed my cell # to a few of you to maybe do dinner thursday night if we miss each other at check in. Can't WAIT to meet everyone!!!!!!! I actually do look like my picture plus a few years and minus the hat. It won't fit in coach or in my bag.
Love and hugs!
Capt Deb 8)
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Well, no drinking and driving for me, but Batty has my cell and I'll be seeing everyone on Friday! I have to work on Thursday :( The last day of the heat wave will be today, so it will only be in the 80's by Friday if you're planning on venturing out into the City for that lovely tour. Talk to you guys IRL then!
~Karen
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I am very disappointed that I had to cancel my symposium reservations at the last minute (family emergency). My hubby and I had planned a week long stay in Philly and I have been looking forward to meeting all.
Hope everyone is having a wonderful time and I still have bail money if anyone needs it ;)
Cheryl
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First day of the Symposium and I met Batty, Capt Deb, Gennysmom, CherylR & Arushi. Someone (not mentioning any names) smuggled in TimTams and all I'm gonna say is OMG, I better find some soon cuz they are the best! It was a nice day and I was very glad to meet everyone. Can't wait until tomorrow!
~Karen
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I had to cancel my plans as well. After attending the previous symposium in Orlando, I was looking forward to being a post op rather than a pre op. I am sorry I won't be able to meet all of those who are attending. Please report back to us your experience.
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what a great place to be right now.
lots of infomation.
lots of new friends.
lots of fun.
vicki wish you could have made it we live minutes from each other would have been nice to finally get together ;D
cheryl wish you were here, rick misses you.
Patti....should have come....
phyl you too.....deb said...oopps maybe I should repeat that on here LOL
Hugs to all,
M
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I'm on pins and needles, who is the surprise guest at the gala?
Cheryl
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I was impressed by the quality of the symposium, my first, and came away from it with renewed optimisum.I was impressed by the quality of the symposium, my first, and came away from it with renewed optimism. I think I am going to order the mp3's to catch what I missed and review the sessions I attended.
As a Philly native, it was so easy to attend being only 20 minutes from my front door. That said, I am already planning on attending the next one, nothing beats getting out of town for a weekend !
Dave
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cheryl the guest speaker was a motivational speaker who wrote a book called dancing through life with guts, glory and gusto.
picked one up i'll pass along when I'm done reading it.
good read
sandra strauss was the coauthor and allie bowling was the author...allie couldn't make it so sandra filled in.
awesome lady...