ANA Discussion Forum
General Category => AN Issues => Topic started by: berniejfnp on November 10, 2007, 05:52:25 pm
-
I am newly diagnosed with AN. Over a period of 3 years or so, I noticed a decrease in my hearing. Everything from too much noise, poor cell phone reception and poor enunciation of others took the blame for my decrease in perception. I guess it was about 2 years ago that I noticed my stability on one leg balancing was challenged. Actually, last winter it seemed that I would have these funny dizzy spells that would last anywhere from a few minutes to hours. Sometimes this spells were incapacitating, especially if I was downhill skiing and just departing a lift at the top of a black diamond. My husband and I thought it was perimenopause/hormone stuff. It wasn't until my trip to Montana that I really knew that something was wrong. I went deaf in the left ear. For 3 days there was nothing and gradually a tin distortion and loud tinnitus took over. That was August 07. After the vacation I was seen by my PCP who said it was barotrauma from the flight. Not convinced I scheduled an appointment for myself with a former colleague who was an ENT. An MRi was ordered and the AN was no longer invisible. Now, I am dealing with the decision of surgery. The tumor is 16mm X 8mm and dumbbell shaped at the cp angle. i will be seeing Dr. Barker at MGH in Boston this week and am looking for any reassurance and support that will guide me. I have searched many sites for info but really need experienced people wisdom at this time. Any of you folks out there in the Boston area?
bernie
-
Welcome.
I don't have anything to add about Boston. As for information, my favorite one was the one from University of Minnesota. They had a nice presentation, not too scary, not too technical.
Good luck
Donna
-
Bernie,
There's a whole group of us from Boston - just met for brunch this morning!
I had surgery in Sept 06 with Drs. McKenna (MEEI) and Barker (MGH) - a very talented surgical team. I'm exceptionally happy with my care under them. Have you seen Dr. McKenna? Most people I know get to Barker through McKenna, so I didn't know if you found Barker independently.
Your AN is small enough that you have time to research all your options. Radiation is still an option, if you're interested, and there are several top-notch radiation facilities for ANs in the Boston area. You don't need to feel immediately pressured into making a decision - the best thing you can do is take your time, do your research, and eventually reach a decision that's right for you and your particular situation.
Please feel free to contact me directly if I can do anything to help.
Katie
-
Thanks Katie for the support and feedback. I am relieved to hear that there are many in the Boston area having dealt with this challenge. I continue to learn and seek knowledge regarding this tumor. it certainly doesn't really stop me from living my life but definitely changes the joy one experiences listening music. It's funny, but I think my dog sensed something wrong 1 year ago. Periodically I would have these strange sensations of dizziness, she would begin to nudge me and lick my hand or face. The symptom was so temporary but noticeable seemingly only to me but the dog gave me up!! My sons and husband would ask why was the dog acting weird and I didn't know why. It wasn't until every time the symptom occurred that she did this that I put two and two together. Now she all but announces the spells to the family so all know. It was the dog who really told me that something was wrong, she was persistent and clinging until the spell ended, Unbelievable, so incredible. I look forward to learning, healing and sharing with others about this journey. Thank you.
Bernie
-
Bernie
In response to your e-mail, no problem for me using stethoscope w/ single sided deafness. After 38 yrs, I know what to listen for, but they do make amplified stethoscopes if you need one.
The noise in the jail could be a problem for you, esp. if you develop hyperacoustic tinnitus like I have.
You will probably be able to ski this season, depending upon when you get your surgery or radiation.
I was back at work full time 2 1/2 weeks after surgery, but that was too soon. Figure 4-6 weeks, 10 to resume full activities, follow your Dr's advice on this.
Stay on this forum for any questions.
There is currently a bit of a controversy re: surgery vs. radiation, you need to talk to experts only, which we can refer you to, and make your own decision.
Best wishes
Sam
-
Hello,
We, My wife and I are from Los Angeles, we used Dr Hitzelberger for her surgery. He works in association with the House Clinic here in Los Angeles. Dr Brackman also was in on the surgery. They gave us a wealth of information about the options. I know Dr Hitzelberger travels all over the country to do these surgeries. He was one of the Doctors that developed the process that they now use for the surgeries. I'm sure there are some great doctors in Boston and they were probably traind by Dr Hitzelberger. He is a supper guy and you may want to call him just to chat. He is a supper guy in addition to being one of the best doctors there is.
Good luck. I'll keep you in my prayers.
Dan
-
I think your dog deserves a big treat! At least we can count on our best friends to take us seriously - even when sometimes the medical community just thinks we're nuts!
Lori (and my faithful 4- legged friend - Jenni. Don't think she could diagnose anything unless I had a dog biscuit in my ear, but that's okay!)
-
Thanks Dan for the support. What approach was used to treat your wife? Did she recovery quickly? I have found this organization to be incredible!! Great feedback and support.
Bernie
-
Hi Lori,
It was quite something to see what lengths the dog would go to get my attention. Somehow she picked up on something that I didn't know could be perceived. I could simply be sitting quietly, maybe in the car as a passenger when she would start in licking my hand, I finally tuned in to the fact that I felt funny, dizzy but not tipping over or anything, just not quite right. This went on for sometime before I realized what she was telling me. She is incredible, I have given her a treat, BECAUSE YOU SAID TO, and she's happy. Thanks for responding to my story.
Bernie
-
What an amazing special canine friend you have!
Please let us know how your appt with Barker goes this week. He's definitely not a "warm and fuzzy" kind of guy, but he's honest and straight-forward, will answer any question you have, and does good work. Just don't expect him to be on time for his appointments! ::)
Katie
-
Bernie,
I have a lab ... and a very similar story . Now he lets me know when someone drives up, gets me if I don't collect the phone on the 2nd ring, came to get me when my youngest child called from outside and now stays close to me - on our walks... with no special training.
I think you should start a "service dog" thread ...
cheers,
4
-
hello,
My wife, Sue, had the translab procedure. Her AN was about 4cm and mastic. Dr. Hitzelberger warned us that it would be a difficult surgery. In most cases the tumor is encapsulated in a bag and they can pull the whole thing out at once, but sometimes it is not, its like bubble gum stuck to everything. In speaking with the other doctors they were very grim with their prognosis of her outcome. Dr Hitzelberger assured us that he would do everything possible to assure the best outcome. It says something about a Doctor who thanks you for the privlage and confidence in letting him do your surgery. I consider him the most humble and down to earth man I have ever met. He told me that before he goes into surgery he says a prayer for the family and the patient that everything will go well. He really understands that we are putting our lives in his hands. My wifes surgey went very well except that the blodvessil that was feeding the tumor was also feeding part of her cerebellium so when they cut the supply it was like she had a stroke in that part of the brain. Sue's case was very unusual so you can't compare her's to yours but knowing that the surgery was going to be a difficult one we wanted to have the best there is work on her. I know in my heart that had I settled for anything less I may not have her here with me today. Sue is doing very well and most of the issues she had after surgery have come back close to normal. She is a little slower than she used to be but she is doing well.
Dan
-
I am no expert on AN, but don't wait too long before having something done!
-
As small as Bernie's is, he could wait, at least 6-12 months if he wanted to.
J T What is your AN experience??
-
I agree with Sam that unless it's been shown to be growing at a rapid pace (as some of the folks here, as well as myself know....), there does seem to be time to do a bit of research. I hope we get Bernie's dr appt update as I know many of us will be curious to see how the appt went at MGH.
Phyl
-
Sam,
I was diagnosed with Bilaterial AN's Oct. 21st 2007. The doctor that I first saw has been NO help at all. He would not even give me the report. I went to the hospital and got a copy of the MRI report myself. I am scheduled to see a Neurotologist tomorrow. I'm unsure about that and would prefer seeing a Neuro surgeon. I'm going to give him a try and see what he has to say. My symptons are twice as bad...LOL. I have had a headache for 16 days now and would do anything to get rid of it. I'll admit, I pretty scared. My husband doesn't want to face the issue, so I am pretty much on my own at this point. I'm keeping my fingers crossed, but I know that something has to be done...and soon!
JT
-
Hi All,
Had the ov with MGH Dr. Barker today. All seemed to go well. THere have been more balance issues at this ov than at previous ov's. Dr. Barker reviewed the options with me again detail. At present February is the time for surgery. I also have had increasing discomfort in the ear, not a pain just an ache, persistent. Still hard to believe that this is all happening. Definitely strange. The support from the group has been good for me and I appreciate all the words of wisdom. The sharing has been instrumental in feeling more comfortable with this condition.
Bernie
-
Hi Bernie,
Great that things went well today. I have to ask one question... as I know the MGH team is fab. Did Dr. Barker note anything about any "radiosurgery" options (Proton, Gammaknife, Cyberknife, FSR) to you? Just curious.
thanks.
Phyl
-
Hi JT and welcome. I do hope your appt goes well tomorrow.
Phyl
-
THANK YOU VERY MUCH!
JT
-
Hi Phyl,
Dr. Barker did speak briefly on the options with radiosurgery. He did repeat what Dr Poe said that if radiation did not achieve the desired outcome, surgery could prove to be complicated at a later date. He also said that the true effects of the radiation may not fully show it's benefits until weeks or months later. Most of what was said seemed familiar to what I had read and heard on the web formum. It will be interesting to see if a 2nd MRI is recommended to compare the tumor before february.
Bernie
-
JT -
in my experience, you see a neurotologist first. If needed, you will be referred to a neurosurgeon. In the case of AN surgery, most neurotologists work with a neurosurgeon.
Jan
-
Jan
THat has been my experience as well. Neurotogist first with audiometry, and brainstem impulse testing, then neurosurgeon.
Bernie
-
Thanks Bernie. As for anyone going through radiation... that is the toughest part (the waiting game, to see if it worked or not) and I do believe that to be the case for AN's, forms of cancer, etc.... it's a definate waiting game. So, I understand his comments regarding that. As one going through the waiting game, I certainly do....
Complications can arise later... true..... but glad you got a comfort feeling and that is all that matters. Regardless of recommendations here and there, you know what is best for you and your situation... so, regardless of what you decide, if it brings peace to your soul in knowing you are doing what is best for you... then.... that is all that matters... and regardless... we are here to cheer you on.
Hang in there.... you know you got us all to help if need be.
Phyl
-
Phyl,
Is it customary to repeat the MRI before surgery, preop or only on suspicion that things may have changed?
Bernie
-
This all started with my PCP. He thought that I had a sinus infection. Long stroy short, I eneded up having a hearint test with a ENT, he ordered a MRI and now he is sending me to a Neurotologist.
JT
-
I hate to be a pest... but what can I expect tomorrow with this new doctor?
JT
-
Phyl,
Is it customary to repeat the MRI before surgery, preop or only on suspicion that things may have changed?
Bernie
Hey Bernie,
You are not being a pest... you want a pest, trust me... I know a few :)
My understanding that unless it's an emergent situation (ie: life threatening, etc), usually the "baseline' MRI is done, then based on the initial size, another MRI may be done down the road to get a feel how fast (if that) it is growing. Some watch and wait for years due to no growth... some grow quick.... each iindividual is different.
Once a treatment decision is made, certain docs will redo MRI's.... in the case of my Cyberknife, another MRI was done immediately prior to treatment as the CK is robotics and uses the most up to date MRI to help with the robotics guidance. My hope is that other folks will answer as to timeframe MRI's were done just prior to their treatments.
Hope this helps.
Phyl
-
I had the MRI done and the ENT called the Neurotologist right away. He is concerned because they are Bilaterial.
JT
-
Hello JT. I am sorry to hear of your hearing of having bilateral tumors. There are a few of us on the forum who also have this going on. Tumors on both sides means one has a condition called NF2 and is very rare. That is good you are seeing a neurotologist. Each large hospital who treats AN's has their own set up on how they treat pts. I am in Iowa and go to the Univ of Iowa and see a neurotologist there. He does his surgeries with the current "fellow" in neurotology doing the surgery to the tumor and then the regular neurotologist does the tumor removal. Some hospitals use neurosurgeons as part of the surgery team. I had my frist AN removed in 2001 with no idea that I would get one on the other side. It was found 2 yrs later. I have went on to have a surgery for a tumor on my facial nerve in 2006 with the nerve severed and a piece of nerve from by my ear grafted in and I have had some return of my facial nerve function. I am now watching the tumor on my other side which is causing me to have more and more hearing loss. Bilateral tumors are a more tricky situitation in order to keep at least one side hearing for as long as possible. Some are able to go quite a long time this way. I have done well after all my surgeries. Some of what will factor in treatment is tumor size. Location is very important. My first AN was farily small but had already made me be deaf on that side. Others can have large ones with perfect hearing. Right now is a very scary time for you with a new diagnosis and not knowing what will be happening.
Hopefully your dr will explain things to you so you have a good understanding of your own situitation. Every case is a bit different. Feel free to ask questions here and that we are here to help. Good luck to you. Cheryl R
-
Hello JT,
I would recomend a call to DR. Hitzelbergers office in Los angeles, he is the formost athoroty on nf2 and doing hearing implants for folk with nf2. Its a tough time for you, I know it was for my wife, if you like I'll take you husband out the the woodshed for you.
Stay strong there are alot of people out there pulling for you. Ill keep you in my prayers.
Dan
-
JT
I agree with Dan!!! The Drs at House have the most experience w/ NF2, which you have.
Sam
-
JT
What is wrong w/ your husband?. I'll put him in back of my police car and beat the @#$%^&*(( out of him.
-
Is it customary to repeat the MRI before surgery, preop or only on suspicion that things may have changed?
Probably depends on a lot of things about your particular situation. Personally, I had surgery in Sept based on my last MRI in May.
Katie
-
Hi, Bernie:
For what it's worth, my neurosurgeon was adamant that he have a 'fresh' MRI just before surgery, for the most accurate 'look' at what he would have to deal with when the AN was actually exposed. I didn't argue with that and had another MRI about 3 days prior to surgery, even though I had one barely a month earlier. My AN was large (4.5 cm) and growing, which, no doubt, was the surgeon's motivation for wanting a 'new' MRI scan just prior to surgery. Every AN patient, their doctor and their situation is a bit different and one size certainly doesn't fit all, as you can see.
Jim
-
Thanks Jim, I was uncertain of what others had experienced. My neuro hasn't mentioned a repeat mri but it seems that if your going to be invasive, it may prove helpful to get the repeat image for the most update growth image.
Bernie
-
Good Evening all,
I went to the Neurotologist today. He was very nice. The news wasn't so great. I need surgery right away to preserve the hearing in my left ear. The bad ting is they can't do both side at the same time so I get to do this twice! I am having several CT scans done Monday in ensure that I do not have cancer any where else. He also said that I am not a candidate for Gamaknife surgery and that he has never had someone with bilateral AN's before... GREAT!!!!
JT
-
Quoting you
"never had someone with bilateral AN's before... GREAT!!!!"
I think you should seek more opinions...
from other Neurotologists.
4
-
I am seeing a Neuro Surgeon next week. Why do you think I should see another doctor? Just asking
JT
-
Let's hope the surgeries (sorry there has to be more than one) will go perfectly and your recovery time is record breakingly quick! I think you deserve at least that.
My fingers are crossed that all your other tests come back fine!
Lori ;)
-
Thank you. I sincerely mean that. My family is having a hard time with this and I am not getting much support. All they can say is "Oh, it will be fine". Well it's not fine. I have 2 tumors in my head...give me a break. Maybe I'm just being selfish, but I know that if it were someone close to me, I would be right there every step of the way. i have had to do this all by myself.
JT
-
JT,
I think it is imperative to seek multiple opinions. I sought 9 opinions (neurotologist and neurosurgeons) and chose surgeon # 8 (he and his neurosurgeon partner were both impressive- remember you are picking a team). It is worth having a consultation with both – since this has to be a team approach. The first team I consulted with were too inexperienced (not even up-to-date on the use of titanium mesh to fill the craniotomy hole- oy ya ya ???). 2 of the 9 had malpractice suits against them :o - in one case involving both of them together (another oy ya ya ??? …Go check out www.healthgrades.com on the surgeons you are most interested in. It was actually the surgeons outside of my own state that impressed me the most…
You want someone VERY experienced and reputable.
Is your surgeon (the neurotologist), you saw, on this list?
http://www.anausa.org/physician_list.html
If not there may be a reason for it… :-\
This is the criteria to make the list
http://www.anausa.org/select_med_prof.html
Did you ask these questions?
http://www.anausa.org/questions_for_physicians.html
If you chose a University hospital be sure find out how much of the actual surgery is done by the neurotologist and neurosurgeon (the brain surgery part) and what is done by students (usually opening and closing under close supervision) as you want only experienced and steady hands doing the micro-dissection of the tumor in your brain.
Also it is key- to ask about their “CSF leak� and “infection� rates….
Do you really want to be the surgeon’s first case of bi-lateral AN tumors? (Oy ya ya…! ???)
When you mention bi-lateral I am concerned about NF2. You want a surgeon who is very versed on this.
Have you sent a copy of your MRI, hearing tests, and report to HEI yet?
http://www.houseearclinic.com/physicians.htm
Later, after ::) flying there in person, I found out you can send these in via mail and they will call you back.
I highly recommend you start with Dr. Brackmann (medical advisory board to the ANA) as he is very versed on bi-lateral tumors and NF2 (dissected more than anyone in the world).
http://www.houseearclinic.com/brackmannDE.htm
(He was so bang on about my atypical tumor and what the pathology would say when it came out)
BTW …No I have no financial interests in House or anything like that – in fact we just donated to their non profit affiliate www.heo.org as they try to find the cause of AN tumors (currently the focus is on NF2 genetics) … All of us need to “keep moving forward� on this (too many kids with diagnosed with AN’s now) … not just Nf2…
Here is there blurb on NF2 (BTW I am not Nf2)
http://www.hei.org/news/facts/nf2fact.htm
AN tumors “typically� do not grow fast. Do not let any surgeon pressure you into a decision. Take the time to research and ask questions. You want to make a good choice and not go back saying “I shoulda, woulda coulda� … this is a life changing experience and you need to make a well thought out decision and know ALL of your options.
Getting on this forum is a good start. :) There is a wealth of informed and experienced patients here.(I also find to be very supportive)
One thing I discovered is you will have to be your best advocate in all of this. If the bi-lateral tumors turns out to be Nf2 (Ie genetic) your family has no choice but to get involved. Try to remain calm and collected. Get as much information as you can (this will empower you) … and then inform your family and solicit their support.
Know you already have support here in this forum. :)
Keep moving forward,
4
P.S. HUGS ( you read like you really need one about now...)
-
Thank you so much for the information. The problem that I am having is that I'm in the state of VA and I have an HMO insurance. I couldn't have the surgery right now even if I wanted to. Just like most families, we work paycheck to paycheck. It won't be until after the first of the year before I can have it done so that I can save enough to compensate the amount of salary I will lose.
JT
-
Can someone tell me expect after surgeries. I havr heard that the headaches are pretty bad.
JT
-
You need to see a specialist in NF2. I just looked up on the www.nf.org site and there is a list of drs who have NF clinics. In Virginia is a Dr David C Waters in Norfolk. There are many other drs listed in other states which might be of use to you. I do not remember you saying how big your tumors are. You may have more time than you think if they are not large. NF tumors can act different than regular AN's so you need a very experienced dr. I know how confusing this is esp if you are not getting full family support. I did not do a search on the VA dr but you can try even to do a google seatch and his name should come up.
Cheryl R
-
JT,
Quoting you
"Can someone tell me expect after surgeries"
GO here
http://anausa.org/forum/index.php?topic=5319.msg47835#msg47835
4
-
I had NO idea it would be so involved. I honestly don"t think I can do this.
JT
-
JT -
you'll be surprised what you can do. I'm sure this is all so overwhelming for you. I only had one tumor and it was overwhelming for me; I'd imagine with 2 tumors, it's at least doubly overwhelming. Please know that the members of this forum are here for you and want to help you any way we can.
I agree with some of the others that you should consult with someone experienced in NF2.
Jan
-
I have checked out the Neuro surgeon. He is VERY well versed in what I have. I just don"t know if I can handle this or not. I think I'll just wait it out and see what happens. I really don't see why I need to have the CT scans done. I have bot had any other problems.
JT
-
2 years ago I had my knee replaced and I prety much did that on my own. I was back at work in a little moe than 5 weeks. I know how hard that was, and this is MUCH worse than that. I just don't think that I am mentally strong enough to handle something like this. From what I have ead, many people live with AN's and do just fine, so I think I'll just wait and see what happens.
JT
-
JT,
You are just overwhelmed. (ok ok “totally� overwhelmed) We have all been there and understand. It is daunting at first but the more you know the more empowered you will feel.
It is good you are also going to talk to the neurosurgeon.
Read up as much as you can so you can go in with a good list of questions to ask.
There is a forum just for Nf2 if you want to ask questions there.
Over the internet, from a stranger who has been there, – here is a big HUG.
Be strong. Once you get past the “I can’t believe this is happening to me!� stage … you will understand the need to “Keep moving forward.�
Hang in there.
4
P.S. Last February I too had major surgery and it took me 8+ weeks to recover to normalcy (whatever that is) … but something still was not right… so I had an MRI. I got through 2 major surgeries in 6 months. I got through surgery #1 on my own pretty much – but for surgery #2 I was surprised and how much others helped out. It was as if surgery #1 was the dress rehearsal for what was coming up. For the surgery #2 both my family and friends rose to the occasion … i.e. they were much better and supportive the second time.
P.S. RE Wait and Watch – well I functioned fairly well with a 4cm – but if we waited too much longer (some ventricles were partly closed from the pressure) … we would have only discovered my AN through an autopsy report. Because yours are bilateral you need to start educating yourself on your options (i.e. you cannot sweep this under the rug too long)
-
JT,
I am very concerned with your situation and the money situation doesn't make it any easier. We are in an HMO but went to Dr Hitzelberger because he is the best. I had to pay to bring him in to Kaiser to do the surgery. When I asked how much it wuld cost he consulted with Dr. Brackman and came back with a figure of $10,000, 5 for him and 5 for Dr Brackman. Then he told me something that brought me to tears. He told me that if I could not afford it he would wave his fee and I would only have to pay DR. Brackman. He told me he was a good cristian man and would never refuse anyone his god give talents just because they did not have the money. I told him that I could afford his fee but to pass it along to the next person in need of his service that may not have the money. I know he travels all over the country even Canada to do NF2's. I can't speak for him as to his fee but I know he is the finest doctor and man I have ever met. Fate may have brought the two of us together on this forum so I could pass along this info to you. Call him, Call him Call him. He will have you send a copy of your mri to him then talk to him some more you may be supprised.
Also contact your HMO and ask if they will cover the cost of bringing him in or you going to him. you have to find a way. the sooner the better.
Dan
-
Hi JT,
welcome to the family. I have the bilateral AN's too. Mine are real small so far, around 2mm each as of Feb's MRI. I'm getting another one done Friday night and also Saturday morning. I think they're doing the head and neck Friday and the spine Saturday, or maybe the other way around. Guess I'll find out when I get there. I was going to wait 'till next year but my neck (maybe the tumors there) has been extremely painful for about a week so the Dr's went ahead and moved the tests up so I can find out what's up. My AN's don't bother me much so for right now I'm leaving them alone since they're being nice to me. There is an NF2 group here, and some other good sites are
www.NF2crew.org www.ctf.org www.nfinc.org
All have good folks just like the bunch here. I know you're kinda numbed by this so far but try to relax a bit. Take some time and do plenty of research, but try not to let things you read scare ya.
Mark
-
JT -
I don't want to alarm you, but eventually you have to do something about your ANs. You can't just live with them forever; at some point they will be fatal.
That said, you don't have to run out and have them removed tomorrow; since ANs are slow growing. Take the time you need to research your situation and the options out there. Dan's suggestion of Dr. Hitzelberger sounds like a great one. Most doctors are sensitive to the cost of treatment and will do what they can to help patients truly in need. I know that my doctor did Cochlear surgery on a young boy free of charge for a family who couldn't afford it. He also got the manufacturer of the Cochlear to give them the device free of charge.
Focus on the positive. We are all here to help you. Aren't you glad you found this forum? It's encouraging that the neurosurgeon you have been referred to is very well versed in AN surgery. I encourage you to make an appointment with him. He many very well put your mind at ease.
Please don't give up on your situation. Sometimes just contemplating what something will be like makes things seem worse than they really are. Take it one day at a time and you'll get through it.
Jan
-
JT: I don't know what to say, other than I echo everyone's sentiments here that you ARE in our thoughts & prayers.
-
I'm willing to bet you are stronger than you think you are. I felt completely overwhelmed at first too, but afterwards I was able to look back and say "Hey, that wasn't so bad". Not that I'd have a desire to do it over again, but I think I came through pretty well. I know you will too. There are some very talented surgeons out there and lots of people who care about you - even if we don't really know you!
Wimpy people must not get AN's because it seems everyone here is a pretty tough cookie. And there's always room for one more tough cookie in the jar!
Think happy thoughts! (Like cookies...)
Lori
-
Hi JT,
I am sorry that you have gotten this diagnosis. I know that it is tough. I think that you have gotten some great advice.
Regarding working with your HMO....I think that first you need to survey your thoughts and feelings regarding how to approach these tumors. Read about NF2. Check out the other resources that people have suggested. Then, you can formulate a plan for proceeding(which is what you really need when you have bilateral tumors). What are your priorities? I would like to suggest that you consider requesting an Auditory Brainstem Implanthttp://www.earinstitute.org/news/facts/abifact.htm (http://www.earinstitute.org/news/facts/abifact.htm). This may be your way to get experienced NF2 doctors. I know that doctors Brackmann and Hitselberger work with HMOs and have traveled from House Ear Clinic in Los Angeles to perform surgeries all around the country.
As others have suggested, I recommend sending a copy of your films to House for their free consultation. Her is a link to consultation information. It is located near the bottom of the pagehttp://www.houseearclinic.com/acousticneuromaFAQ.htm (http://www.houseearclinic.com/acousticneuromaFAQ.htm). And, you may want to contact a particular doctor there. Their email address scheme is fairly simple - first initiallast name @hei.org I work with Dr. Friedman there and I think that he is a great guy. You can read about all of the doctors here: http://houseearclinic.com/physicians.htm (http://houseearclinic.com/physicians.htm). Please let me know how I can help.
I know that this is all overwhelming and I am sorry.
Best wishes,
Jeff
-
Thank you all so very, very much for the advice and your concern. I'm not so concerned about the medical bills, my insurance will cover that. The thing that is holding me back right now is that I will need to save enough money to cover the difference from my short term disability at work. I just can't afford to lose 25% of my pay for 6-12 weeks. :'( The other thing that scares me is that I will basically do this on my own. My daughter would be more than happy to help me, but she lives 2 1/2 hours away. It's just so much to process at one time. A friend of mine is a doctor and told me that the two that I am seeing work together as a team and are two of the best around this area. I'm just VERY scared at this point and am not at all sure that I want to do this right now. I know the risks of waiting, but I wouldn't be any worse off than I am right now if I wait a while. I have lost 40% of my hearing in my left earto date, but I don't think it will get much worse than that in a year. Maybe I'm being the foolish one, but I know my weaknesses and stregenths, and do not feel strong enough to endure this right now... not to mention that I will have to do this again. I know I can't do that! I will just pray and hope that things don't get too out of control. Keep your fingers crossed!