ANA Discussion Forum
General Category => AN Issues => Topic started by: QRM on November 11, 2008, 07:52:14 am
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Dear All,
Just found out 3 days ago that I have AN, like a previous poster said luck was on my side. (have to be positive) after the initial bomb shell discovering I have a brain tumor, it was a relief to find its the "Good" one to have.
Now that its all sunk in, I have been keeping myself busy getting facts to make a decision on the next step, interesting the local surgeon in Singapore feels my 2.5cm lump is perfect for the gamma knife as I previously lost my hearing to a viral infection ten years ago and still have no real symptoms, it was discovered during a routine medical screening.
The best advice so far is find somewhere that does this everyday, because Singapore is so small AN does not crop up very often, which means I am looking to the states for surgery, my first port of call would be the House Ear institute.
I am waiting of my full report so I can send it to them but my question is has anyone carried out the surgery and got back on the plane after a week or two ( assuming all goes well) and if anyone knows the area are there any decent accommodation for my family to stay near by during the procedure and recover period?
And most important thanks everyone for being here its been an emotional roller coaster, and having people to just talk about it is therapy in itself.
regards
Rick
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Hi, Rick:
Sorry to learn of your AN diagnosis but pleased that you found your way here, via the internet. Unfortunately, I didn't have my surgery at HEI and so, cannot offer the kind of information you're seeking. However, many other posters have had their surgery (some very recently) at House and I'm sure they'll offer their advice and the kind of information you need. I wish you well in your quest for HEI info and hope the forums will continue to be a resource for you.
Jim
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Hi, Rick,
I had the translab procedure for my AN at House this past January, and fatigue was my only post-surgery issue. I flew back home from L.A. to New Jersey 10 days after my surgery and experienced no problems whatsoever on the flight. I think the "fly after 10 days" is pretty much standard at House, although I think one patient flew back home a day or two earlier while I was there. Rest assured that they will not release you until you are ready to fly! Seton Hall, a dormitory-like facility, is located adjacent to St. Vincent Medical Center (where House surgeons operate) and the House Ear Clinic -- it's not luxurious by any means, but is more than adequate and is a great place for patients and family members both pre- and post-surgery. There's a link to the Seton Hall website on the St. Vincent's website, if I recall correctly. And you're certainly planning to do the right thing by sending your MRI to House for their free phone consultation.
I have absolutely nothing but good things to say about my House experience -- I would go back there in a heartbeat -- but you'll certainly find other excellent surgeons and medical centers mentioned on this forum as well. It sounds from your message that you might be exploring GK as well as surgery, so you might want to look for some GK-specialty places as well.
Best wishes as you continue your research and plans for your treatment!
Catherine (JerseyGirl2)
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Donnalynn,
I am so glad to hear others are as please with their surgical team as you and I are. When they get as specialized as this they pretty much better be the best in the business, which I'm finding they are. The key to a good outcome is a good surgeon with a globally good approach.
Good luck Rick, you will do well.
Will
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Rick -
2.5 cm is moving towards a little too big for radiation, so IMO you'd be wise to check into surgical options.
HEI is well-known and has a very good reputation.
Good luck,
Jan
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Thanks for all the reply,
Feeling more up beat, now I know what they mean by good days and bad days. I am still weighing up my options and of course will wait for the input from a few more Doc.
Funds permitting, selecting where to go is like choosing between a Lexus, BMW, Merc, or Range Rover, all top of the range all very capable, its just a personal preference, as they all do a good job of getting you to where you want to go.
One thing that I keep noticing while there are lots of encouraging stories, I often see notes like after 20 years I still have issues, or I have complications, I know every one is different and the usual suspect list of complication is well documented but can someone shed a bit of light on these issues in an everyday kind of way.
The big irony I went for my medical screening expecting all sorts of horror stories about my heart, my idea of exercise is getting up. All came back totally clear, never occurred to me the problem is in my head. Might be an idea to use these next few month to get into shape ready for surgery?
Talk about psychosomatic suddenly I can feel this throbbing and pain in my right ear.
Will be nice to get a buddy system going latter, try and meet up or at least chat with someone in the same boat going for the same thing at the same place roughly the same time.
Thanks, you guys are real stars
Rick
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hello rick
welcome to the forum and i am glad you found us!!! i am originally from singapore and i will be hitting my 1-year surgery anniversary in 2 weeks. I had my surgery at House and they are really professional and awesome. You can do a find on all House threads in this forum, and you will find nothing but rave reviews. The hospital also provide guest rooms (seton hall) for families and for your post surgery stay. House patients come from all over, and they usually fly back after 2 weeks of surgery (or once they are "cleared").
it is definitely a roller coaster ride but it all depends on how you take control of your emotions and thought process. anyway, i will be back to singapore in dec, and if you have any questions, i will be happy to talk to you.
good luck!!!
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CT
Got your message but don't know if mine went out correctly there's no sent box? If it didn't get through, I would love to have a chat and fondle
Keep me posted on your travel plans
regards
Rick.
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Rick, People who had treatment many years ago had a much harder time with ANs. MRIs were not even available. Drs were not as aware of how to do treatment and ANs were probably all of a large size. We are very lucky now that a big share of us do fairly well. Many of the ones with complications now may be due to sometimes seeing a surgeon who is not as experienced.
Large tumors can be harder on people as some do not even have symptoms they know for sure are ANs. Many drs still do not believe ANs are as frequent as they seem to be and do not order MRIs when they should be. Tumor location is a factor also.
I have had now 4 surgeries for 3 ANs due to having NF2. I have been very fortunate and my after effects are not real evident just to look at me. I now know many who had surgery and have got to know personally and none have what I would call complications. Many do have some after effect. Most are minor long term. We may be deaf on the one side, There can be some long term balance issues and this can just be having some off balance in the dark or on real uneven ground or having to watch on stairs. Many do get back to their active way of live they had before with sports and running. Facial paralysis can be a problem for many but most have theirs return. If the facial nerve is severed then nerve graft is a possibility. I am one who had that myself and was done at the same time the tumor was removed from the facial nerve. I am ok to look at but do not have a perfect smile.
The idea of surgery is scary and at first you don't think you will ever improve but one does. We are lucky to be in this age of medical care.
I hope this is of help to you and feel free if you have any questions that many of us are glad to answer. Cheryl R
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Hi RIck-
I didn't have surgeyr at HEI (NYU for me) but have heard nothing but excellent reviews from the many folks here who went there. You will be in excellent hands!
As you'll hear over and over again, everyone's AN story is different. Some people have virtually no complications while others seem to get the "lion's share" of complications. I don't think there is any accurate way to predict this. My best advice to anyone is to educate yourself on what "could" happen, but don't go crazy focusing on all the possible negative outcomes. By putting yourself in the hands (literally) of competent, experienced practicioners, you are already stacking the deck in your favor.
OH, and by the way, welcome to our fun little group! ;) ;D
Debbi
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QRM
If you decide to go for treatment with the House Clinic, they typically use St Vincent's Hospital which is across the street from the clinic. However, in one or two posting, some people said that at least one of the House doctors is now doing AN surgery at Cedar Sinai hospital. St. Vincent's has a guest house called Seton Hall or Seton Center. The rooms have a double bed and the couch folds out to a single. You have a private bathroom with shower. They change the linens and clean the rooms once a week, but you can get clean towels daily. It is very reasonable, I think it's $50 per day? The building is secured, you need a key to get into the building, and into the elevator. There is no staff on duty after hours, but hospital security will respond in an emergency. I think there is two floors of rooms. Each floor has a shared kitchen (big refridgerator, microwave, coffee maker/hot water, toaster oven and sink) and a day room with TV and tables.... very simple... no cable TV, etc. There was a PC in day room, but it was dial up, and access was horrendously slow. When I stayed there in May 2007, my Dad and I would walk to the hospital cafeteria to eat. Not bad but after a week it gets boring. There's not too much within walking distance of the hospital... maybe a Burger King and a few local fastfood places... a supermarket (maybe 20 minute walk). St. Vincent's is in mid-town Los Angeles, so mostly its a hispanic neighborhood. You might want to rent a car, if your family is the type to go stir crazy. Obiviously I couldn't drive, and my Dad didn't want to drive, so we just stayed within walking distance of the hospital. House Clinic will provide a list of nearby hotels that offer a "House Clinic" discount. Some on the list were high class hotels... For planning purposes, 4 or 5 days in hospital and another 5 days recovery before the followup, before you can fly out. Example: Flew in to LA on sunday 5/20. All day testing 7:30 am to 6:00 pm on monday 5/21. Surgery on tuesday 5/22. Released from hospital on saturday 5/26. Follow up on friday 6/1. Flew home on saturday 6/2.
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Rick, I had a 2.5 cm AN, diagnosed last summer. I spoke to doctors that recommended both surgery and radiation as a treatment. It was a tough choice. If you are interested in my experience, please check out my website below. Best regards, Francesco
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Hi Rick and welcome!
As we all know, the AN diagnosis is initially a onfusing and frighening one. Everyone will tell you, and it is the absolute truth, that everyone's experience is different, no to outcomes are exactly the same, whether you have surgery or radiosurgery. For surgery, the outcome depends on size, location and how sticky the tumor is. As Debbi said some of us come through this practically unschathed, as I did only being SSD but with no other problems, some are even more fortunate and keep their hearing and others have major complications such as facial paralysis. The doctors can take an educated guess as to what someone's surgical outcome might be based on their experience, but none can say for certain.
My advice is research, reserch, research and ask as many questions as you can, both of us and the doctors you see. Most of us are not doctors, although there are at least two who are active on the forum, Sam Rish and Dufreyene. Both of these gentlemen have also been treated for ANs and can give you medical as well as first hand advice. All of us will be happy to support you in whatever way we can.
With regard to HEI, as many before me have said, several people here have been treated at HEI and have been extremely happy with their outtomes and the doctors there, so it is obviously a wonderful choice.
Wishing you luck and not too much anxiety,
Wendy
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Once again Thanks everyone,
Dr. Brackman of the HEI has a great reputation but I am surprised by how old he is 70? not that I am an ageist or anything, is it age or experience thats important? Ideally some where in the middle. Put it this way my DAD is 73 and the number of dents in his car is anything to go, I am a bit worried.
Bit off topic why is everyone using cm and mm I thought US was all feet and inches? I suppose what is .5 ft is it 6 inches or 5 inches
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ANs are measured in centimeters by doctors and it is easier to use and understand their measurements which are exact, than to try to translate the measurements into inches and fractions.
Wendy
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Once again Thanks everyone,
Dr. Brackman of the HEI has a great reputation but I am surprised by how old he is 70? not that I am an ageist or anything, is it age or experience thats important? Ideally some where in the middle. Put it this way my DAD is 73 and the number of dents in his car is anything to go, I am a bit worried.
Bit off topic why is everyone using cm and mm I thought US was all feet and inches? I suppose what is .5 ft is it 6 inches or 5 inches.
Rick:
I wouldn't be too concerned about Dr. Brackman's age. Although I don't know the man and he wasn't my doctor, I seriously doubt he would be operating on AN patients if he - or anyone else - thought he had lost his ability to perform the difficult, tedious and necessarily precise procedures that AN removal surgery demands. My neurosurgeon was a few years older than me (I was 63 at the time of my surgery) and he did a magnificent job, sparing me from any real complications. I'm sure these highly experienced neurosurgeons use younger doctors (happy to be working with a real 'pro') to do a lot of the routine parts of the operation (while overseeing everything) and save themselves for the really serious, intense parts of the surgery that require their expertise. A feeble or absent-minded physician could not perform this kind of surgery without his (or her) deficits being glaringly obvious to everyone present, and I can tell you from experience that the AN surgery OR is quite crowded with medical professionals. Frankly, the subsequent complications a patient could experience at the hands of a doctor unable to perform AN removal surgery at the required level of expertise necessary for a successful outcome would soon see HEI sued out of business and Dr. Brackman's reputation would be effectively destroyed.
This is simply my opinion, of course, and if you don't feel confident with Dr. Brackman, then you should seek another surgeon. Confidence in your doctor is critical to getting through this surgery. I had 100% confidence in my neurosurgeon - and it was amply rewarded. I want the same for every AN surgical patient. I'm sure many folks on this forum will attest to Dr. Brackman's expertise but ultimately, the decision is yours because it's your skull being operated on and you have to live with the results.
Jim
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Just throwing it out there but I came across a man from New Zealand on facebook who had gamma knife done in Singapore. If that is what you are looking for you may be able to just knock it out over there.
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Rick -
to my knowledge you aren't the first AN patient to wonder about "grandpa" Brackman's age and I can truthfully tell you that I know patients who weren't comfortable with it and didn't have their surgery with him. On the other hand, there are lots of AN patients who didn't feel it was an issue and did choose him for their surgery.
I did not have my surgery @ HEI and I don't personally know Dr. Brackman, so I can't really say if this is a valid concern or not. Like Jim, I would hope if Dr. Brackman wasn't capable of performing surgery, he wouldn't be. I'm also confident that his colleagues would encourage him to retire if his age caused a performance issue.
I don't know why ANs are typically measured in cms, but the new trend is to measure them in mms. Definitely very curious for the U.S.
Jan
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Thanks for the input guys,
I was all gung ho the other day, sort of dam the torpedoes let get Brackman to do it tomorrow sort of mood, but now hmmm if it was a wart on my knee then no worries.
Well I suppose best not judge a book by the cover so will take a veiw when I see him face to face or in this case hand to hand.
Jims point re: the hospital wont let him perform if they suspect hes a bit wobbly, my take is yes, but hes been there so long and such an institution, its pretty much thanks to him the modern HEI is what it is today, so which judas on the committee ( all his golf chums) is going to stand up and say thanks for everything and give him a big shove out the door.
Anyway even if his hands are a steady as a rock there will probably be an earthquake during my shift. ahh but what the probability of that? there again what the probablyity of getting AN? Sorry guys just a bit of a glum moment.
Funny the other day I ducked under a shelter during a lightening storm, normally I would not bother
I should go out and get lottery tickets
Thanks Bobbibi regards the Singapore Gamma Knife, I went to the gamma knife surgeon here the day I was told about the spud, and OK he maybe did not want to scare the daylights out of a newbie, but the way he said it was just pop in before lunch we stick a hat on and twenty minute later you can go off for lunch. he even said its so soothing lots of patients fall asleep. Like Gandhi once said if its too good to be true... If he was a bit more upfront saying that it may hurt like hell six months to a year later, etc then I might be a bit more inclined to listen to him now.
Rick
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I don't think most doctors using radiation treatment will tell patients out of the chute what they MIGHT expect post treatment. I think this comes when the patient revisits the doctor telling him he's chosen radiation. Unless, of course, the firstime patient starts asking all sorts of post issue questions.....?
I too would feel uncomfortable with the casual attitude anyway. But, what do I know anyway as I chose surgery over radiation.
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I don't think most doctors using radiation treatment will tell patients out of the chute what they MIGHT expect post treatment.
In my experience, it pretty much depends on the doctor. My neurotologist performs both surgery and radiation (GK) and he told me what I could expect from either treatment at my first appointment. Maybe because he's the kind who believes in fully informing patients - down to the smallest detail - but I'd imagine there are other docs just like him.
Jan
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My CK radio-onc and neuro-onc did provide me a full list (verbally and in writing) of "what could be..." and I even was asked to sign the release, noting that all of it had been fully explained to me.... my hope is that other radio-docs are doing the same.
I don't think most doctors using radiation treatment will tell patients out of the chute what they MIGHT expect post treatment.
In my experience, it pretty much depends on the doctor. My neurotologist performs both surgery and radiation (GK) and he told me what I could expect from either treatment at my first appointment. Maybe because he's the kind who believes in fully informing patients - down to the smallest detail - but I'd imagine there are other docs just like him.
Jan
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Thats it, booked the flight to LA for the initial meeting with the HEI folks early December. Staying at the Disney hotel!! ;D of all places you would have thought that was the last place you want to be if you have a brain tumour, but its more to keep our 3 year old daughter entertained, and she thinks its all one big holiday.
Thanks for all the PM and post, I will keep you all posted.
Rick
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Good luck, Rick.
Say hi to Mickey & Cinderella for us ;)
Jan
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Just got back to singapore after my LA House visit, very interesting Dr. Brackman despite being 70 seemed pretty sharp reminded me of the wise old turtle in Kung Fu panda,
Dr. Shwartz is a lovely guy and same age as me, while Brackman was very much in favour of surgery, Dr. Shwartz was was more or less on the fence saying I can swing both way but he was the only one to note that my tumour has a cyst within it, which is good and bad news, good because it means that the tumour is actually smaller, bad news means it may not react as expected during a cyber knife treatment and depending on how the nerve runs through the cyst may mean leaving a bit behind to preserve the facial nerve.
Dr. Freidman I liked, it really boiled down to a batman movie flick of the coin between Dr. Brackman and Dr. Fieidman. Dr Shwartz works with both of them.
Big day booked for 26th of Jan 09 at HSI
I love LA over here I am classed as borderline obese, I am having trouble finding belts larger than 36inch, in the state I look like starving Marvin, at Disneyland people are on electric wheeled seats because they are so fat, and they all zip around on these buggies with the front basket full of burgers and mickey shaped cups full of cola, just like those people in the movie Wal-E
Sorry about all the film comparison a 15hour flight means I had a lot of time on my hands
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Hey Rick,
Good to hear from you - glad things went well in LA...Jan 26 will be here before you know it. Think there are several people on the forum w/ surgery scheduled around that time. Will you be staying in LA longer than 2 weeks since you're traveling such a long distance?
Take care and do keep us posted,
Cindy
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hi Cindy
Will be in LA for two months, first month family will be with me then being dumped there for a month to really rest and make sure my head does not fall off. Then wife will come back to collect me to take me back to Singapore.
Hope she remembers to come back :o
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Wow, 2 months! Maybe you can become part of the LA Welcoming Committee along w/ David, Lanie and Nancy! Should be great weather out there during your stay - enjoy!
Cindy
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Just met up with Chocolatetruffles AKA Lisa, she flew into Singapore for a few days, and was a great reassurance for me and more so for my wife. It has been a year since her operation at the HEI and is pretty much leading a totally normal life. Cant imagine what the neighbouring tables were thinking as my wife and Lisa were peeping down each others jeans comparing bikini line scars.
Just like to say a big thank you to her and to all the other post ops folks, who stand on the other side of the what appears like a bottomless chasm offering a hand and a life line
Rick
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Just met up with Chocolatetruffles AKA Lisa, she flew into Singapore for a few days
Wow, sounds like lots of our fellow forumites do get around - and here I am still stuck in Illinois :( :D
I can't believe it's been a year since Lisa's surgery and I'm so glad to hear she's doing well.
Thanks for the update.
Jan
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Rick,
I had GK and it was so great. I consulted at House but the GK expert is U of Pittsburg. You should check to see if you are a candidate. No recovery time at all. I flew home two hours after the proceedure.
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hello rick!!
great to see you in singapore and hope you had a safe trip to LA! you are in excellent hands and they will take care of you at House. Keep the good vibes going and hope you can meet up with the LA gang too. Bet they got interesting stories and good tips to share. Keep us posted and best wishes!!!!