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
