ANA Discussion Forum
General Category => AN Issues => Topic started by: Samantha n Adrian on July 10, 2007, 07:58:15 am
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Hello. My name is Samantha and my boyfriend Adrian was just diagnosed with AN yesterday. I have learned so very much from reading these forums for the past 3 hours. You all seem so supportive and eager to share your experiences.
I am a bit surprised however at how large Adrian's tumor is compared to many others here. He was told it is 4cm approx. the size of a lemon according to the Doctor. My concern is that I have read that the tumor is supposed to be slow growing. Even though his symptoms started approx 9 months ago with ear pressure and ringing, then 2 months later after antibiotics for ear infection and ear drops the dizziness started to occur. This was then followed by hearing loss and constant headaches. It was only after he complained of facial numbness (which started 2 weeks ago) that the MRI was ordered. He has seen several specialist and just finally last week was given the MRI with contrast, and not because the Dr. suspected AN but actually because he suspected MS (Multiple Sclerosis). My question is that since his tumor is so large and his symptoms getting progressively worse at such a fast rate is it possible they can grow faster in different people? Has anyone else experienced this? It seems like I said earlier that most here (or at least the ones posting) have 2cm or smaller. How long after symptoms occurred were you diagnosed with AN?
Thanks in advance for all input and comments!
Sam
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I know that the two of you must be very frightened but my first piece of advice is to take a deep beath and learn what others can give you to get through this. I must ask, how old is your boyfriend? This is important because the truth is that these tumors grow much more rapidly in younger patients because of elevated hormone levels. So, my guess is that he is in his early twenties. I think that I myself could look back to almost 9 months of symptoms if not a bit longer, but I was 49 when I was diagnosed 3 years ago. As a matter of fact I am having my annual follow-up MRI today and will see all my docs next week. There are many people on this forum who would be more than willing to share their experiences and to hook you guys up with the best doctors. Where approximately do you live? And maybe you could tell us all what the doctors have recommended and which one recommended what. That will lead the two of you down the path to make an informed decision. Everyone here is readily available to assist. Let us know. I wish you the best of luck on this journey. Email anytime. Holly
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Dear Sam,
First, I congratulate you for being "mature" and concerned to read for hours on end, with the forum. Our best "wishes" to you and your boyfriend.
Many of us have been miss-diagnosed which includes myself. My symptoms are the same that your boyfriend has. It was the hearing loss that finally got me back to a different doctor for diagnosis. I had many doctors for different AN symptoms and they didn't refer me to and ENT at the time.
Yes, there are people on the forum that had a tumor the size of a lemon or larger.
The Acoustic Neuroma tumor is known as a non-cancerous tumor and true, slow growing. It must be watched as, it can "take-off" when least expected. (begin growing again after CK or GK or some surgical removal, leaving a portion so it won't destroy the facial nerve) In some cases radiation is used on the tumor section that is left after surgery. I'm not experienced in this area as I had Cyberknife. My tumor is 22 mm but, large enough and on a nerve to cause the same or similar problems as, your boyfriend. I'm not experienced in the major surgical area. There are others on this forum who had a very large AN, that might see your post and help you with a private email or posting to the forum. (for your own data to pass on to your male friend)
If I understood your last question correctly, I answer that I had symptoms for years before being diagnosed properly.
Regards,
Palace
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Sam,
How old is Adrian? I had symptoms for a long time, but they can go through growth spurts. Mine was about 3.5 at time of surgery, and my only symptoms were hearing loss and tinnitus. Others with smaller tumors are much more symptomatic. Everyone is different, that's one of the first things you'll notice about this beast. Second, do your research and choose a good surgical team. Where are you guys located? A lot of people reccomend House, but there are also many other great teams out there, so there are options. Third, as a caretaker, the road may be hard for you as well. Keep an eye out for threads about the psychological pitfalls and take notes on how you can handle them. Adrian may go through a pretty severe "angry" stage that strains relationships....know not to take it personally, it's not about you at all. Make some expectation agreements before surgery so that you both can meet each other's needs. Lastly, know that this is completely doable and that going through tough times makes for better people....you learn to apprecate life and smell the roses and that's not a bad thing. This forum is a lifesaver, we're family and here for you guys.
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Thank you so much for the fast and caring responses. The support here is very comforting and I have already forwarded this link to Adrian so he can follow along at work and will be posting himself tonight when he gets home.
To answer some of the questions.... Adrian is 34 years old and we live in the central Florida area, however we would be more than willing to travel anywhere to make sure we receive the best care possible.
We received the news yesterday via the phone from the doctor and have an appointment Thursday to talk more about our options. The next two days in the meantime are going to seem like months!
From what I have read and because of the size of the tumor it seems like removing most of the tumor and then finishing with radiotherapy would be the most beneficial way to make sure none of the delicate nerves around the large tumor would be cut like they possibly would if they tried to remove the tumor completely.
Thank you again so much for the comments and kind words of advice. If it wasn’t for this forum I would be pulling out my hair right now with worry.
Sam~
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Sam -
as I'm sure you have seen from reading the posts on this forum, there is a lot of good information here. You've definitely come to the right place for advice, suggestions, and support.
Everyone is different. My AN was only 1.5 cm at the time of my MRI. My only symptom was diminished hearing and I let that go for 3 months before I even went to a doctor. From what I was told, my AN was considered medium size. I had the option of Gamma Knife or surgery. I opted for surgery. Even through the AN was supposed to be slow growing, mine had almost doubled from the time of my MRI to the time of my surgery (one month). I don't think youth had anything to do with that; I'm 45 1/2. The docs originally thought they could save my hearing, but because the AN had grown, they were unable to. Despite that, I consider the surgery to be a great success.
I don't know what the specific treatment options for your boyfriend will be, but make sure you see qualified doctors. My doctors were highly recommended, highly qualified, and just flat out incredible. The neurosurgeon had done surgery on larger AN's - I think some were 5 or 6 cm. I live in Illinois, but I'm sure someone who lives closer to Florida can recommend someone.
Another member mentioned that your boyfriend will need your support through this process. I can definitely concur. I am a single mother of 11-year old twins, and without my family, I could have never gone through the surgery and recovery. In my opinion, both physical and moral support from those you love is vital no matter which treatment you choose.
Good luck to your boyfriend and you. Keep us posted.
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HI Sam! I was 34 when I was diagnosed with my 4 cm tumor and my symptoms started only 3 months before surgery. I started with some facial tingling, about a month later the dizziness started and wouldn't stop. I then realized that my one ear felt muffled, like it needed popping on an airplane. They say that tumor was there for 10-15 years and looking back I can see the very small subtle signs. The dizziness worsened and by the time of surgery I wanted to be bedridden (but with 3 kids it wasn't possible. ;)). From my MRI discovery to surgery was a month and yes I did decline in health but the drs said I could postpone surgery for a few weeks if I needed to. I wanted it out!
I had surgery in Cleveland Ohio. My drs were able to remove all the tumor. I do have single sided deafness and have a BAHA and I have facial paralysis and numbness which is still recovering. I'd be happy to answer any questions, feel free to pm me anytime.
Good luck!
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Hi Sam (and Adrian)
I just wanted to give you a welcome shout-out to the forum boards. As you can see from the responses to your post, many are here to help in all ways that we can. We remain committed to providing the best support we can... and it should help bring you inner peace that, as you can see, you all are certainly not alone.
If you have any questions about using the maneuvering around the website, please let any of the moderators know... we are here to help.
Again, welcome to you and please know that we are cheering you and Adrian on.
Phyl
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Hi, Samantha:
As I always say to new visitors, I'm sorry you have to be here but glad you found the site and the forums. Thanks for your kind words, too. We do care and try to offer the best practical advice we can.
I'm one of the 'lucky' AN patients with a fantastic outcome that Bruicfer mentioned. After developing various symptoms, including loss of taste (and rapid, unwanted loss of weight) notable disequilibrium and sudden lethargy, I underwent an MRI scan and was diagnosed with a large (4.5 cm) acoustic neuroma tumor in May of 2006. I underwent microsurgery (retrosigmoid) a month later to 'hollow it out' (and cut off the blood supply) and came through that with no real complications. Home from the hospital within 5 days, driving within 2 weeks and feeling pretty good. I'm retired so work wasn't a problem but I believe I could have handled with my former desk job just fine.
My neurosurgeon partnered with a radiation oncologist to 'map' my follow-up radiation treatments, 26 in all, spread out over 5 weeks, that began in September of '06 and ran through mid-October. This approach is known as Fractionated Stereotactic Radiation, more commonly referred to as 'FSR'. The goal of this two-tiered approach is to is to reduce the size of the tumor while preserving the vital facial/cranial nerves, then use low-dose radiation to kill the tumor's DNA. The result, as you may know, is called necrosis, or cell death. My last MRI (June 20th) showed significant shrinkage of the remaining tumor and definite signs of necrosis. My neurosurgeon was beaming and called me his 'star' AN patient. I humbly accepted the accolade. ;)
Your boyfriend, Adrian, may have a similar option and you both should discuss it with a physician. His tumor is too large for radiation, alone, but as you can see, there are other approaches the doctors can take besides 'surgery only'. Surgery can sometimes cause residual problems for the patient if the tumor placement necessitates disturbing any facial nerves in order to remove all of the tumor, but I trust you're familiar with that risk.
One caveat: we're all individuals with different genes. Just because I had an excellent outcome with the surgery/radiation approach, no one can guarantee that will automatically be the case for anyone else, although I personally believe this approach makes sense for large AN tumors and, obviously, my very experienced neurosurgeon agrees. As others will likely advise, physician experience is paramount in successfully treating AN cases. As this is a relatively rare condition, not that many surgeons are familiar with it. Some neurosurgeons, very experienced at operating on spines, are really behind the curve in treating AN patients. This is why you must inquire of any potential surgeon, how many AN cases have they operated on? Anything much less than a number safely in the hundreds is probably too low. Do not be intimidated by any doctor. This is Adrian's life and future at stake and he must make the decisions and not be pushed into anything, even if he has to act fairly soon. I know you'll be with him all the way and that is a big plus for Adrian. He'll need an advocate in the hospital and later, while recuperating. Life may become somewhat difficult for awhile, but I trust you two will ride it out. I pray you and Adrian will make wise decisions based on knowledge, not fear. Remember, an acoustic neuroma is a problem but it's not malignant and it is operable - and surmountable.
I hope you guys stay strong. Feel free to post here as often as feel necessary. We really do care.
Jim
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hi sam,funny thats my wifes name,tell adrain dont freak out.i had all of his symptoms and then some.
my tumor was also the size of a lemon, at 8 cm.About 2 years ago i had ear tubes put in,due to loss
of hearing,like when water is in your ear,it pops open and closes.1 year later i started getting headaches,
associated with dizziness and blury vision and stumbling/falling down,and a throbbing head,and i would hear a wosh,wosh sound .this would happen all at the same time
and only last about 3-5miutes.what i mean to say is there is no telling when these things start.Adrian,hang in there buddy.
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I was 34 when diagnosed (and treated) for a 4+ cm tumor as well. You can read more about my experience if you view my profile and scroll down to read previous posts. What you should know is that I am 3 years post-op and doing great! I walked away from translab surgery without residual issues (other than the expected hearing loss in the affected ear). Stay strong and positive, and please send me an email or personal message if I can be of help in any way! Lisa Peele
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This is Adrian. I would first like to say thank you for all the kind words. I truly am a little taken back by all of the love and support. As you already know, I just found out yesterday that I have AN and to say the least, I'm very worried. I was misdiagnosed with MS and a very good friend of mine advised me to stop taking artificial sugar as there are many side effects from it. Sucralose was in the whey protein shakes that I ate 3-5 servings of a day, along with the sucralose in the jelly I ate everyday in my morning breakfast shake and my cottage cheese at night. I also would treat myself to sugar free chocolate, sugar free ice cream, and a diet soda or 2 on the weekends. The irony for me in this whole situation is that in the past 1.5 years I've lost 90 pounds and to be struck with a blow like a tumor in my brain is a little disheartening. In the past 1.5 weeks I've stopped all of the fake sugar and my dizziness has diminished considerably. My facial numbness is about 90% normal, my lip numbness is about 70% normal, but my tongue is still "tingly". So one would deduce that the fake sugar is a culprit to my issues, but then there is still the loud ringing in my right ear with deafness and the constant headaches on the right side of my head. I take ibuprofen like its candy and I'm sure that is not a good thing. What is absolutely scaring me right now is that my left ear, my "good" ear, has a fairly loud ring in it, much like the sound of crickets chirping. I also have noticed for months that my memory is not as sharp. Lately I notice many dyslexic activities. I write letters in words backwards, I type letters in words backwards and its frightening. I always had a mind like a steal trap. I also notice that at times I have to force myself to swallow. My right eye will water a lot and if it has too much "sensory input" it starts to hurt. I also notice that my right nostril is often stuffed up and at times tends to drip. All of those "minor" issues aside I'm strong as an ox. I wake up at 4am to be at the gym by 5. I have an extremely fast past job as a Food and Beverage Buyer for 7 hotels. I "go" all day and get to bed many nights at about 10-10:30pm sleeping about 6 hours if I'm lucky. Physically I'm very strong, and cardiovascular, I can run 5-6 miles. I work out almost everyday. Did anyone find that your symptoms became heightened while under stress as I often find mine occurring more intensely while at work?
As far as support, Sam is the best possible mate a man can ask for. She is always up-beat and very positive even when she has no reason to be. I'm sure by her posts everyone can tell she's an angel. The support system is already in place so that's one less worry. Her resourcefulness with finding this website is incredible. It helps so much to hear the stories of other people with the same problems. This website is great.
In most of my reading there seems to be one constant, House in LA. I read how experienced they are. I already know that my right ear is gone, I've made peace with that. My major concern is facial, eye, and balance issues. I only want the best when working on my brain. Sorry, but I'll pay $50 a month for the rest of my life if I need to for the best possible care. I have a meeting with my ear specialist who ordered the MRI Thursday morning and it feels like its a month away. As mentioned before, I am so incredibly worried that there is ringing in the "good" ear. Did anyone experience the same issue?
I know that in the next few weeks we will need to make some rather important decisions regarding the rest of my life. Thank you ALL for your kind words and life stories. I truly enjoy reading them all.
Adrian
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First of all, welcome to the forum though I'm so sorry you have to join us. This is a great resource - everyone here got me through my research and surgery when I needed it. It was invaluable.
Did anyone find that your symptoms became heightened while under stress as I often find mine occurring more intensely while at work?
YES!! Stress and fatigue are huge factors (at least, for me). Generally speaking, I have no residual effects of my translab surgery - aside from the expected deafness. But if I'm really stressed or overly tired, the side of my face will start to tingle and my balance goes wonky. I see it as my little alarm bell telling me when I need to take a break and meditate! ;D
In most of my reading there seems to be one constant, House in LA. I read how experienced they are. I already know that my right ear is gone, I've made peace with that. My major concern is facial, eye, and balance issues. I only want the best when working on my brain. Sorry, but I'll pay $50 a month for the rest of my life if I need to for the best possible care. I have a meeting with my ear specialist who ordered the MRI Thursday morning and it feels like its a month away.
House certainly has a lot of experience. It sounds like you AN is large enough that you won't be able to escape surgery in some form. You can get a phone consult with House to see what they have to say. Your best bet may be to have consultations with several different doctors and make a decision about treatment based on what you feel is right for you - whether it's local or across the country. I chose to stay local (Boston), but having the confidence that I did all I could to make a decision that was right for my situation made all the difference in the world. While I was nervous going into the surgery, I also knew that no matter what the outcome was I wouldn't second guess myself. That's what I needed to have peace of mind.
Good luck to you. Please keep us updated and feel free to ask any and all questions as they come up!
Katie
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Hi Sam and Adrian:
Welcome to our safe zone. We all know what you are going through. The stress of the diagnosis is enough to really get your symptoms fired up.
Once you find a doctor you trust to do the surgery, you will calm down and want it over so you can move on.
Being at peace with the fact that you will probably loose you hearing is a good thing. I lost my hearing in my left ear and I can honestly say, it is an inconvenience at times but no worse than that.
I was lucky. I am three years post op, deaf in the left, my nose runs like a faucet on the AN side when I mow the grass, walking in the dark is a challenge (get a night light) & tinnitus is my constant companion but I don't even notice it anymore. Those are my complaints. Not too bad when I look at the big picture.
There are many very experienced neurotologists and neurosurgeons out there that work as a team removing ANs. You can find them at most teaching hospitals. There are quite a few people on here that have had surgery in at Moffitt in Tampa. I am sure they will be posting soon. House Ear in LA is very well known and they do AN surgeries every day. I chose to stay here in Minnesota as my surgeons had done over 500 at the time and I trusted them completely.
Good luck to you both, Kathy
ps: plan on quite a while on the couch........the recovery from AN surgery is very slow -
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Welcome Adrian (and Sam),
You've definitely come to the right place for support. I was diagnosed a couple months ago and this forum has become lifeline for me.
Adrian, you asked if stress can bring on symptoms....YES! To compound things, sometimes it's hard to tell if the symptoms are due to the AN or insomnia and anxiety over the AN. Either way, the symptoms can sneak up on you when you least expect it.
You also mentioned the ringing in your non-AN ear. I have read that it's common for both ears to have tinnitus, and that the balance can change (mine is about 70% in my AN ear and 30% in my good ear, but sometimes it changes to 50/50 for a few hours). NSAIDs, including ibuprofen and aspirin can contribute to tinnitus. Not sure about tylenol. Good for you for giving up artificial sweeteners!
I know it's all new and overwhelming right now. The more you learn about ANs and your options the better. There's a wealth of information on the internet, just be aware that a good bit of it is biased. Finding the right doctor is most important.
Best wishes to you both,
Betsy
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Hi Adrian and Sam,
Just wanted to be among those that welcomed you to the forum and I think, Adrian, that Sam is a keeper!!
To be honest, I'm a little surprised that you have to wait a month to talk with your specialist. That's no fun waiting that long. When I got my call from the neurologist about what was wrong with me, they had set up an appointment THAT DAY, with a neurosurgeon. Scared me a bit, I must say. Then I was shuffled off to a different doctor and had to wait about 4 days for that appointment. So, once I got my diagnosis (which took a year!), things moved along quickly.
This is a link to information regarding some aspects of having an AN. I think you'll probably relate to some of these symptoms. Everything you are experiencing sounds like what so many others have gone through.
http://www.backgroundfacts.com/menieres/COGDIS.htm
The things that seem to bother people the most insofar as magnifying symptoms seem to be caffeine, asprin, too much salt and possibly sugar, especially if you happen to be a diabetic, which you aren't. Loud places make tinnitus worse. You might find yourself uncomfortable at the mall now, or going to Wal-Mart or places like that. Everyone is a little different in what bugs them. You'll learn what are your triggers and what you can live with comfortably.
Sounds like you and Sam are capable, smart young people who will get through this with flying colors. I do wish you all the best and hope that your eventual treatment and recovery will go off without a hitch.
Take care,
Sue in Vancouver USA
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Hello Adrian,
Please do not assume that artificial sugars caused your A.N. In my case, I never touched the stuff until recently and look what I went through!!
Paul
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Thank you for your responses. I go see the Dr. tomorrow regarding my MRI and my initial options. It is very comforting that many people advise not to settle, that you do have choices on who operates in your head. I will definitely pick out the best. Has anyone had their AN operation at Shands in Gainesville FL @ UF? I heard that Dr. Friedman is one of the best.
I’ve been wondering about post-op symptoms. Often times when in a crowded place, sometimes just in a grocery store, I feel “claustrophobic� and I get dizzy like the rest of my surroundings are moving. I also noticed this a few weeks ago @ Sea World when amongst many people. Does this ever go away or is this a life long symptom?
Does the scar from the incision behind the ear heal properly or will it be very visible post-op?
As I mentioned in my last post about stress, and I received some good comments regarding stress, fatigue and the exasperation of dizzy and numbness symptoms. I mentioned that I have a high stress job and how my symptoms are heightened at work. Does this ever change post-op? What type of careers do many of you post-op “survivors� have?
I’m sorry if my questions are a bit “repetitive�. I was very tired last night when I wrote my post and I never asked the questions specific enough. This forum is great and it has restored my faith in people. This has given me such a great amount of peace, comfort, and knowledge. Thank you! Even though we never want someone new to join our “club�, I can’t wait until I can return the favor to someone who is terrified of their new situation.
Adrian
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Hi Adrian and Sam:
I have heard of Dr. Friedman and Shands. Have you done a search on here to see if others have posted about him?
The incision won't be noticable after a few months or less. Your hair will cover it no matter which approach your surgeon uses.
I am in sales is a busy, crazy, huge lighting showroom. Post op, I went back part time for two weeks before I went back to full time. It worked great for me to ease back into the workplace.
That feeling you get in the grocery store should get better after your vestibular nerve is taken out with the AN. Your good side will compensate for the loss. I had no trouble at all after the first two weeks post op. I did go to a big furniture store a few days after I got home from the hospital. Big mistake. I wanted to run.
Good luck tomorrow, Kathy
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That claustrophobic and or crowded feeling is only too common and for me it actually got worse right after radiation but it is better now, 2 1/2 years later. But I must say I still have those grocery store moments, especially if the weather pattern changes, low pressure and humidity. crowded rooms still drive me crazy but are more tolerable, especially if I get up and remove myself for a few minutes and then go back in. Also, stress is much more physical for me since the AN was dicovered and my symptoms worsen with the stress. Stress is not good for any of us but you really need to pay attention to the causes and try to avoid those times or at least control them. You should buy Dr. Black's book "Living with a brain tumor" (Amazon) it gives a wealth of information and will help to reassure you and recognize why you feel the way you feel. Rest is extremely important and your brain will let you know when it's time to take a break or a nap. I have heard that Dr. Friedman in Gainesville is good and actually there have been many AN studies done there as well. For awhile post-op symptoms can get worse before they get better because the other side of the brain has to learn to take over. You might need to do vestibular rehab which will give you the tools to deal with the vertigo, imbalance, even reading can be a bit difficult but a good therapist will help you through this period. I do major political fundraising for the democratic party but I limit the functions that I will host and if I feel I can't do it, I don't. talk aobut stress during an elction year and now already things are busy but I have already turned down one event because I jsut don't have the nergy but will do another in August. I am very lucky that I can pick and choose becasue honestly i couldn't work full time. I had radiation damage (linac) and I am still recovering and may hae to accept my life as it is. My big mistake I will admit was not getting a second opinion because my friend the neurologist told me not to and not to read too much and not to go on the internet because it would scare me..BIG MISTAKE...I wish I had known about this site becasue these people know what they are talking about. You will see it all and read it all here. Best of Luck tomorrow, I'll be thinking of you and Sam, Holly
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I had retrosigmoid, and I am quite happy with the incision. I'm 6 weeks post op and it's hardly noticeable. If people know to look for it behind my ear, they'll see the "tail end" of it, but that's about it - and I wear my hair short. Actually by the time my stitches were removed, 10 days after surgery, my hair was already growing in and covering the scar.
As for work, I'm a controller (accountant), which basically means a desk job. I returned to work part-time 2 1/2 weeks after surgery; full-time 5 weeks after. Only problem I've been experiencing there is tiredness.
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Hi Sam and Adrian,
Sorry to hear you have to join this group, but glad that it is here for all of us. I felt a little dizzy in busy places shortly after surgery, but that has gone away. I had the translab procedure and the scar is really hard to see now. The part that is on my neck was put into one of the folds on my neck. The rest is under my hair. I tried to find part of the other day and I couldn't. I was back at work after 8 weeks. I was teaching third grade. The first two weeks were half days, although I stayed the full days for several of them. I have been lucky enough to have no trouble with fatigue. I didn't notice any particular cognitive problems.
The fact that you are in good shape now will be helpful to you. My anesthesia person said being in good shape helps a lot with recovery. I'm 22 months post op now and can do everything I could before surgery. Hope you get a lot of good information from your doctor tomorrow.
Jean
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hi Adrian,my name is John and i had one that was exceptionally large,around 8cm, so im told.
my surgery was behind my ear, and they barely removed any hair.
i am 3 months post-op(postie),and cannot see a scar because my hair
covers it,just as yours will.I was in surgery for 17 1/2 hrs,spent 6 days in icu,3 of those were in comma that they
put me in,15 days in hospital,3 weeks at in-patient re-hap,and now i go to outpatient re-hab 3-4 times wk.
i still have some balance issues,some eye issues,and some eating issues,the left side facial palsey ,and to top it off i walk like Ozzy Ozbourne.Aot of this is temporary ,i hope,
and one thing everybody on this forum tells me"it gets better with time"is absoluteley true.i dont mean to scare you,just want you to know that,yes ,it is a long hard road, but with the people on this forum,a little faith,alot of hard work(therapy),and Sam,(my wifes name)you will get through this,no matter what.Remember,you wont feel a thing.i am 41 and never had surgery before.my wife is 37 years old, and i dont know how i would have got this far without her.seeing her strength has made me stronger.you got Sam and the forum, so you've pretty much got this thing whooped.I,m on here everyday if you have any questions for me,best of luck.
p.s.while writing this my surgeon called, and since my nerves are damaged so bad,i get to have a 7-12 jump(surgery)august 3rd.
Good news?not sure but i've got to deal with it.scared?yes.I WONT FEEL A THING !
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John -
had to read your post twice to make sure I read it correctly. 8 cm !!!!! 17 1/2 hours !!!!!
I can't even imagine. God bless you! I'm not sure what a 7/12 jump surgery is, but good luck with it.
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thanks leap,i'll tell ya,the whole thing threw me for a loop too.
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i'm sorry leap,the 7-12 jump,i believe,is where they take the 7th nerve,which controls your face,and connect it to the 12th nerve,which controls your tongue. the whole point is to get your face[palsey]working right again,other people on the forum have had it and probably know much more about it.
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Thank you for your responses. I go see the Dr. tomorrow regarding my MRI and my initial options. It is very comforting that many people advise not to settle, that you do have choices on who operates in your head. I will definitely pick out the best. Has anyone had their AN operation at Shands in Gainesville FL @ UF? I heard that Dr. Friedman is one of the best.
Hello, Adrian - and you're quite welcome. I'm glad you're so willing to accept some (collective) advice and that you're doing what is both prudent and practical - for you.
I’ve been wondering about post-op symptoms. Often times when in a crowded place, sometimes just in a grocery store, I feel “claustrophobic� and I get dizzy like the rest of my surroundings are moving. I also noticed this a few weeks ago @ Sea World when amongst many people. Does this ever go away or is this a life long symptom?
As Obita stated, it will subside after surgery but it takes awhile to completely lose the feeling of disequilibrium as your brain has to adjust.
Does the scar from the incision behind the ear heal properly or will it be very visible post-op?
It will be visible for a few weeks. My (short) hair covered the scar with a month. By 6 weeks, it was 'invisible'. My barber was pleasantly surprised.
As I mentioned in my last post about stress, and I received some good comments regarding stress, fatigue and the exasperation of dizzy and numbness symptoms. I mentioned that I have a high stress job and how my symptoms are heightened at work. Does this ever change post-op? What type of careers do many of you post-op “survivors� have?
I'm retired so not too much help on the job-related question but others have done quite well going back to work following AN surgery. One of the cautions is that you shouldn't 'rush it' when returning to work, especially in a high-stress job. Going back part-time seems to be the best idea for many. Remember, you'll be recovering from major (brain) surgery, not a tonsillectomy. It takes time.
I’m sorry if my questions are a bit “repetitive�. I was very tired last night when I wrote my post and I never asked the questions specific enough. This forum is great and it has restored my faith in people. This has given me such a great amount of peace, comfort, and knowledge. Thank you! Even though we never want someone new to join our “club�, I can’t wait until I can return the favor to someone who is terrified of their new situation.
Adrian
We don't mind 'repetitive' questions. Every newly diagnosed member has similar questions. We expect that and are here to answer and reassure as best we can. No problem. I'm so glad you're able to take strength from our posts. That's why many of us remain active here long after our AN has been vanquished.
Jim
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Well…..I met w/ my Otolaryngologist this morning regarding my 1st MRI read. To see my MRI films and the size of the tumor was quite a shock. Sam and I were very surprised. We had a list of about 20 questions for him, and in my opinion he scored about a D. He had too many maybes. Too many what ifs, too many uncertainties regarding my facial nerves. He left the office for a minute, Sam and I looked at each other and both just shook our heads NO. I’m sure he’s great at what he does, but he is by no means an AN pro. We left and proceeded to call a few doctors, one being Shands in Gainesville, FL. I gave the nurse my sob story and told her that I would like to mail them a CD of my MRI and have the Dr. call me back for a phone consult. She told me they did not do that. She said to fax her a copy of the MRI report, the Dr. would look at it, call me back and we would need to schedule a face-to-face meeting. I was aggravated because I live about 2.5 hrs away. I told her fine, that I would and that and wait for their call. Then I called House in LA and got voice mail. Extremely aggravated at this point, I left all of my info awaiting their call. In about 20 mins I did talk to a nurse at House. I gave her my sob story and very confidently she said “WE ARE THE BEST!� Those are words I wanted to hear. She told me how typically my op would take 5-6 hrs. I asked her why my Doc said 12-15 hrs and her response was great. “That’s because he’s doing the operation and not us!� She told me how they do AN ops every day, after day, after day. Now that’s what anyone wants to hear…..experience. I have read that same line paraphrased in many BLOGS. I hope it’s just not a sales pitch and that it actually is true. I did feel great about our conversations. I told her that I live in Orlando, FL and that I don’t know how we would handle logistics. She told me that they have experience in that and they have systems for everything. She said that she forwarded my info to Dr. Luxford and he would call me back later tonight. She said that I can choose either Dr. Hitselberger or Dr. Swartz for my surgery, any suggestions? Has anyone had Dr. Luxford?
She just put me at ease. Honestly, I think my mind is made up…..going to LA! I would love to hear feedback on this from people.
I am mailing a CD of my MRI to House to be received by Monday, and I’m still getting an opinion from the Neurosurgeon partner to my Otolaryngologist and sending my MRI report to Shands and starting that process. I want the 3 opinions.
I want to add that I appreciate all posts. I would love to return personal messages, but there is a lot going on right now and I just don’t have time. Even if I don’t reply, I read all posts and appreciate your input. I will reply personally as time permits.
Thank you ALL!
Adrian
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Hi Adrian (and Sam). You are on the right track. Many here have gone to House from far away and the results are terrific.
As for post-op claustrophobia...had it before and right after surgery but 3 years later not at all!
Stress definitely heightened my symptoms, after surgery new symptoms but no where as severe. I no longer have any dizziness. Just facial numbness and paralysis, that is still recovering and everyone around me says that don't even notice and of course the ssd.
When you talk to House, ask about the BAHA for hearing. It is a great little device and I highly recommend it. I know there are others who had the implant at the time of surgery. It doesn't replace your hearing but it definitely helps!!! Just one more thing to add to your list of questions.......
Ask lots of questions and think positive! We're here for you
AND it does feel good to be able to give back to a newbie. Your turn will be here soon enough. It will be a great day when you are a Post-Op An patient and begin your new normal.
Good luck......
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Adrian
For the House Clinic, they almost never answer the phone directly, but you leave a message and they call you back. They do have a central operator, and all the individuals have direct numbers, but it always seems that you need to leave a message. The clinic is huge, and on the days I was the there it was packed (waiting room with over 20 people).
One thing to consider is they will almost always recommend surgery (that's what my second opinion neurosurgeon said). They are very experienced in surgery. The day I had my surgery, I was one of three that day, and the next day they did another two. Dr. Stefan said they did 240-something AN surgeries in 2006. My neurosurgeon was Dr. Schwartz. My neuro-otologist (ear surgeon) was Dr. Slattery. Look on the Internet for the House Clinic website. If you browse around it has the curriculm vitae of all the doctors and where they went to school, did their residencies and fellowships, etc. You can get a feel for their experience and specialities. Dr. Schwartz looked pretty young to me... mid- to late- 40's (steady hands). The neurosurgen and neuro-otologist work as a team during the surgery. I'm not sure who cuts what....
For the logistics. House will assign a surgical counselor (an RN) who will help you do the paperwork and answer questions. I called her at least 4 or 6 times once I had a surgery date with questions. You'll need to make your own flight arrangements and hotel arrangements. House will send you a packet with hospital forms, brochures, a list of recommended hotels that give a "House discount" and info about the Seton Guest Center. Seton is connected to the St. Vincent Hospital. My father and I stayed there. The rooms are nice but simple and relatively cheap ($50/day). I think the price might have gone up a little this month. We didn't rent a car, so most of the time my Dad just stayed at the Guest Center reading magazines and watching TV. A rental car might have been helpful, but he is older and didn't want to drive in LA. We caught the Super Shuttle to and from the airport to the Hospital.
I arrived in LA on sunday. On monday, a full day of testing. Meet with neurosurgeon (Schwartz), neuro-otologist (Slattery) and internal medicine doc (Stefan). Full physical with internal medicine doc (EKG, Pulmunary Function test). Then across the street to St. Vincent Hospital for blood sampling and chest x-ray. I did the checkin paperwork at the same time I was waiting for the blood tests and x-ray. On tuesday, checkin to hospital at 6 am. Surgery at 7:30 am. I was in the ICU around 1:00 pm (I think???).
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Hello... Sam here.
I figured out how to save the MRI images we received and got to view today for the first time. I wanted to share with everyone here.
My initial reaction was a shocked gasp as I covered my dropped jaw with my hand in horror of how massive and intrusive this tumor looks. I immediately felt bad for reacting in this way because I do not want in any way to make things any scarier for Adrian then they already are. When the Doctor had told us the tumor was the size of a lemon I thought they had to be kidding... but after viewing these I understood exactly what they meant.
(http://i24.photobucket.com/albums/c41/oxllsamanthallxo/Fronttumor.jpg)
Front View - If you look closely you can see where his closed eyes are, his nose and the outline of the earlobe.
(http://i24.photobucket.com/albums/c41/oxllsamanthallxo/Sidetumor.jpg)
Side View
(http://i24.photobucket.com/albums/c41/oxllsamanthallxo/Toptumor.jpg)
Top View
Does anyone else have MRI images to share?
As Adrian posted we are getting 3rd opinions. Amazing how your whole life changes in an instant... worries and concerns of just last week seem like years ago...
Thank you so much for the flood of information and support and most of all LOVE!
Sam~
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MRI photos?......coming right up! (I'm sorry that you have to go through this Adrian. I'm here to share whatever I can of my experience with you).
Paul
(http://www.mustangmods.com/ims/u/948/1254/51450.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51451.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51452.jpg)
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IT IS AMAZING HOW FAST YOUR LIFE CAN CHANGE.but together we will overcome,and together we will get through this, and hopefully relieve some of the fears of the new ones to come.
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Hi Sam and Adrian - Glad you found our family and a big welcome! I know this is a very scary and surreal time, but as others have said we are always here to help in anyway that we can. I had microsurgery for a 3.5cm AN in 1998 and just celebrated my 9th year post op and my life is great ;D I do have SSD (single sided deafness) and some balance/cognitive issues but I still do the things I did before surgery. So just want to let you know that life goes on after AN surgery/treatment and it's pretty darn good ;D
Reading through some of your posts, you mentioned that the first doctor gave you alot of maybe's. At least in my case, my MRI did not tell the whole story and it wasn't until the surgeon went in, did he see that the tumor had wrapped itself around the facial nerve and severly splayed it. I was also not expecting to lose the hearing nerve, but it had to be sacraficed to save the facial nerve. In fact the surgical appoach used (middle fossa) was so that my hearing nerve would be saved and my surgical team was confident that all would go as planned, but it didn't :(
One of the most important things during this whole journey is having a strong support system. Adrian and Sam you both are very blessed to have found that in one another. I don't know how I would have made it through without the support and understanding of my husband.
Hugs,
Cheryl
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hi matti,i'm just curious,what does "splayed"mean
and i see teeeee every now and then,what is that?
just recently i found out what "ssd" meant,i got that.
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Hi Satman - Splayed basically means that the tumor was crushing the facial nerve and flattening it. Mine was the thickness of saran wrap. Teeee refers to tinnitus, although mine sounds more like a BZZZZZZZZZZZZZ :D
Cheryl
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I'd like to share some of my expereices and hopefully it will somewhat help in what you are going thru. Let me say though, my sympathies go out to you guys.
I admit the MRI picture was really hard to view knowing I had something that size sitting in my head. See I never really got to see it until after. Maybe they didnt think I was ready for it and i'd be traumatized. I think its actually harder to see it now thinking "how did I ever overcome this?"
I'm not gonna lie and say the experience tickles but its really not as bad as one may think. Believe it or not I think having an AN was actually harder on my parents than it was for me. Its probably gonna be harder for you Samantha. I think the hardest part for me was patience and minor frustrations. It didnt really hurt all that bad...I mean I was on alot of medication, but I just remember them constantly taking blood and ripping bandages off my skin...(I have alot of hair) and THAT was the painful experiences I seem to remember most.
I'm about a year post op and I am doing fine. I'll say it wasnt the best thing that ever happened to me, but in a way it really made me be able to appreciate life a lot more. Gave some clarity ya know? I've really learned to cope with life and those stupid, dumb immature things are no match for me anymore. It really toughened me up. Anything nowadays I can just brush off and other things,and I realize I now know I have the power to change them. Most recently, I enrolled back in school and i'm giving notice of my underpayed frustrating that I never had the guts to quit years ago, job. Can you believe I actually quit school to work more in a minimum wage type job? What a mistake that was. I've really had the highest of inspirations and i'm sure you both will too.
A year ago I couldnt even take care of myself. Walking, bathing, shaving..you name it. Everything. Despite a few minor things, I feel in a sense back to normal. Its only been a year now and i'm already at the point where I say "acoustic nueroma? Oh yeah, I had one of those."
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Hello everyone, Adrian here. I need some serious input and advice from prior House patients. My assigned surgical staff is Luxford, Swartz, Stephan, but I can pick who I want. I emailed House many questions this morning and they responded. One of the answers is as such: Dr. Schwartz and Dr. Hitselberger split the tumor removals, each doing approximately 125 tumor removals per year. Dr. Hitselberger has the most experience of any neurosurgeon in the world on removal of acoustic tumors and the most experience of any physicians removing tumors that are 4-cm or larger. This is going to sound rude, and I swear I don’t mean it that way; in fact I’m completely impressed by this man’s accomplishments. This person will be in my brain so I think I have the right to be concerned. Dr. Hitselberger is 77 years old. He and Dr. House basically wrote the book on modern day Acoustical Tumor removal. I’m just worried that ones hands are not as “steady� any more. I also find it a bit odd that his profile is not on the House Ear Clinic’s website or is he on St. Vincent’s Hospital’s website. I would imagine that to be a huge “marketing� tool.
I ask for input from those that had surgeries at House especially on large tumors. I am in talks with House. They received the CD of my MRI this morning. I have lots to do with my insurance and House is not in network. So far, they have been so organized and talk with vast experience. From a “gut feeling�, they got the job!...lol
I want to say Thank You once again to all that have posted. Reading your experiences is so informative and peaceful. I must admit, when I see my MRI, I have a feeling of being “defective�. I don’t like that feeling of being “broken�.
Also, I lift weights and run 6 days a week. I know that every case is individual, but how is exercise post-op. Does anyone have stories?
Thank you,
Adrian
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Adrian, I was once in your exact position...same age, same size tumor. Dr. Hitselberger removed my 4.3 cm tumor (which was stuck to my brainstem) without further damage. I literally walked away from the surgery and had a wonderful vacation in Southern California with my husband. I attended a party 3 weeks after my surgery, and no one there (other than the hosts, who knew) could even tell I'd had surgery. Pretty crazy!
Dr. Swartz is meticulous, and you should feel that you would be in the best of hands with either neurosurgeon. (BTW, Hitselberger is in private practice...that's why his bio is not on the HEC website. Also, many might not believe it, but House is not really into marketing. You'd think they would be...but I have not found this to be true. I had an amazing experience and outcome, I keep in close touch with my docs, and they have never asked me to help direct patients to them. I do, of course, because I am so thrilled with how I was treated.)
I don't know anything about Dr. Luxford (although anyone at House should be the best in the field). I would use Friedman or Brackmann and Hitselberger or Swartz. Stefan is the internist and everyone who goes there goes through him (he's great).
I recently went to an appointment with our local Children's Hospital audiologists for my daughter with Down Syndrome. I mentioned that I had an acoustic neuroma. The Dr. asked where I was treated...when I said House, she had a huge smile. "They're Rock Stars in our industry! You could not have been treated at a better place!"
I was once "broken" too...see my scan at left :). I was back to my normal routine within 3 months.
Please let me know if I can answer other questions for you. I am happy to help in any way!
All my best,
Lisa
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Adrian and Sam,
I've been reading your thread all along, as a newbie myself, it is amazing to see how you are working through this.
First I must say, that is more of a golf ball than a lemon. At least out West here, lemons are bigger than that.
Second, I Googled Hitselberger, and found his bio on the St. Vincent site:
http://www.stvincentmedicalcenter.com/ear/team/Pages/WilliamHitselbergerMD.aspx
He and Dr. House basically invented Translab and Middle Fossa surgery, and hauled AN surgery out of the dark ages.
Third, they use micro-surgery with remote controlled devices, so I wouldn't worry about the age, he is a legend. Plus they have a team of surgeons in the operating room anyway, don't they?
You guys show such energy and committment and courage, it is inspiring to follow. I have no doubt you will make it through, and manage to come out wiser and stronger for doing it. Thank you for sharing your story.
Best wishes, Steve
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Sam and Adrian,
Just wanted to say my thoughts are with you guys....totally agree with Dfcman that this will be hard on Sam (in a different way than for you Adrian), and I had that same crushing blow when you finally saw the "thing" in your head, but it will get better....in some ways, and in others you will adjust. I'm glad you're taking the time to research this....you'll feel better about that in the long run. We're in this for the long run for you guys, whatever you need....we are well versed in this road!
Kathleen
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Hi Sam and Adrian:
Good for you for deciding on who gets the job. That in itself takes off so much of the pressure. I don't recall ever reading a post on here where someone had regrets about going with their gut.
Adrian, you are going to need to take it real easy after surgery. One of the biggest no nos for a while is lifting anything heavy. You will get a ton of instructions, dos and don'ts etc....before you leave the hospital. I am not a runner but there are many on here that are. I am sure you will hear from them.
Good luck!! Kathy
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Adrian,
Dr. Schwartz is a lot younger that Dr. Hitselberger. However, whichever neurosurgeon you chose will be working with your neuro-otologist Dr. Luxford. I'm not exactly sure who cuts what, but they work together. Dr. Schwartz was very good on my surgery.
Regarding exercise and lifting weights. The first thing is no lifting of anything over 10 lbs for at least a month post-op. Also if you read Yvette's post in the Post-Treatment forum, she had some complications after going back on her weight program. It caused a CSF leak. For me I was walking 2 mi per day, 2 times per week at 5 weeks post-op, and I went back to work at 7 weeks. It will depend on how fast you overcome the dizzyness. Running made my eyes bounce, and that really makes me dizzy so I stick to walking. I never exercised pre-surgery, but the walking is part of the physical therapy. I'm still dizzy but its not so bad that I can't walk, drive or work....
Regarding your insurance, someone from the House Clinic financial department can work with you and your insurance company. It's either Rita D or ??? from the Financial office. Although, I'm lucky because both the House and St. Vincent are considered under contract with my insurance company.
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If large AN, I would prefer Dr. S. -NF-2er
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Wow Sam, I feel ya. I am 29 and am livin in Richmond VA. Was high functioning, working as a music therapist for folks w phys disabilities (includin MS.. I also hae lupus and was tested for that too. I promise AN is better than MS. My only symptoms were vertigo until theMRI revealed a 4 cm tumor. WHAAAAAT? Yea. Since have undergone 13 hr of surg on Oct Friday the 13th and another 17 plus Gammma Knife in Jan and March. right now, I can't feel my face, aftercare is HARD, Lots of OT, PT and music therapy on myself!! Had to relearn to walk, write, etc and am just taking it one day at a time.....
We are young... props to you for being proactive! If u need someone young to chat w, I'm at loribrown78@hotmail.com
Best, Lori
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Following up on a few other posts...
I was trying to think back to my own recovery and remembered something that made me laugh. I was doing pre-op with Dr. Stefan and he was answering questions patients frequently have. He said, "Lots of people ask when they can start having sex again after acoustic tumor removal. And the answer is...please wait until you leave the hospital!" ??? :)
Yes, you will have to modify your exercise routine (especially the weight lifting) in the months after surgery. But, you will figure out what works best for you! Recovery is an interesting thing...everyone is different and you just have to go with what your body (and doctor!) is telling you about resuming activity--of all kinds :). (Also consider walking, swimming, etc. as alternative routes to staying fit when you are cleared to begin getting active again. Then you can build back up when it makes sense to do so.)
I got back to normal Life pretty quickly. I had four children when I had my surgery (now there's 5), so I keep a pretty busy pace. I was able to keep up after them and the house, and walk at least a mile a day by about 2 months out. By three months out, I didn't have stamina issues at all. My balance was not negatively affected...with larger tumors, your body has sometimes already compensated for the loss of the one balance nerve. My surgery was only 3 1/2 hours, and I think less time under anesthesia means shorter recovery time (btw, I was quoted 8-18 hours for removal locally).
Also, you may already know, but it's the neurotologist that makes the first cut and exposes the tumor. The neurosurgeon is the one who actually removes it. At HEC, there is a team of doctors in the operating room (with an entire staff of nurses), and they are all experts. Rest assured that you'll be in the best place to make it through this in great shape.
All my best,
Lisa
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Sam here!
Those last 2 posts from Bruce and Lisa made me laugh! Thanks guys... I needed that. :D
I really do not have any new news to post as of yet. Well except for this waiting thing is harder than I thought! I want this invading mass out of Adrian's head already..... :-\ I do not want to rush our decision or anything and I always like to fully do my homework before diving into anything.... but part of me is just so anxious to get it out now.... I am so nervous that everyday we wait is another day we let it get a little bigger. Like the darn thing is big enough! I am just a worry wart though...
I mainly just wanted to say to all of you THANK YOU so much for taking the time to read our story & questions and for the posts and personal messages you have shared with us. You all are awesome and your input is MUCH appreciated! I wish I could personally thank each of you back individually ...and I will when I have the time for sure!
I can't even think of how much harder this all would be to deal with if we didn't have our AN family here to talk and share with....so really... Thank you! ;D
Sam~
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Bruce….if you don’t play nice, I’m going to take my BOWLING BALL and leave this sandbox! >:( :P
I just want to comment that I really can’t say anything that Sam didn’t say in her last post, that about sums it up. I can’t thank everyone enough for all of the wonderful advice and support. I am truly humbled that people I don’t know care about my little story. It is at times, overwhelming, Thank you!
Lisa….I read you stories and can’t help but want to get on a plane and go directly to House. We’ve been playing phone tag, House and I, and I always like how I feel when I talk to them. I have spoken to the counselor/coordinator often. I met a local Neurosurgeon on Tuesday and I really liked him. I just don’t know that he’s right for the “job�. His name is Dr. Melvin Fields, if anyone has used him in Orlando or 4+ years ago in Pennsylvania, I would love to hear from you.
Thank you once again for all the wonderful advice and incredible support! I truly enjoy all of your posts and wait for them eagerly. I will update as I get more information.
Adrian
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Hi Adrian and Sam
Guys can be tactless, Don't think of it as a bowling ball, just look at it like an uninvited intruder who is going to be leaving soon one way or the other. I had my surgery 15 months ago at House, I had Dr Hitselberg and Dr Brackman and like you I was concerned about their age. Dr Brackman is in his 70's and I remember handing something to him and holding it at a distance that I could see if his hands were steady or not. Between the 2 doctors they have to have about 100 years experience, and they do these procedures almost daily. It was quite funny when I first went to House for my hearing test, the audiologist had to be in his late 70's. I then saw Dr Brackman and Dr Hitselberg and I started to feel like I was in a "cocoon" movie. Anyway Adrian, Sam sounds like a great girl and I am sure she will be a great support during your treatment and recovery. I was fortunate I only live 20 miles away from House clinic but it was still difficult being driven there for follow up appointments. However you will get through it and we are all here to help.
Lainie
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Hi Sam and Adrian
Now that a few days have passed since diagnosis, and with all the support from this site, finding out lots more information, no doubt you are feeling a bit less stressed. At least I hope so :)
If you have by any chance read the LInks to MS thread then you will allready know about me. I had a 4cm AN removed at the end of 2003 (I was 41 at the time) with further surgery 6 weeks later to repair a CSF leak. My recovery was good after that despite fatigue, balance, hearing, equilibrium and eye problems continuing - though lessening. The discovery of and surgery on the AN represented a major life change for me and less than one year after surgery I took a 3 week holiday in Egypt then 18 months later a 2 months trip to UK and England, and now here I am living and working in Kuwait. From here I take every chance to travel.
I often now forget that I had major cranial surgery and chastise myself for getting so tired, so quickly. I automatically take care walking down stairs, or in the dark, or on rocky ground - but the balance has improved over the years. My eye does get tired/sore if I spend too long in front of a computer or TV but too long nowadays is all day :) not just 1/4 hour. Even within 3 weeks after the surgery my eye had improved greatly and I was able to watch 1 1/4 hours of Lord of The Rings # 3 without it getting too sore. The disequilibrium problems have certainly lessened and once again you get used to it and learn what you can do and can't - at least for now - then you just keep pushing just a tiny bit further each time.
I am absolutely under no doubt that accepting the tumor, having faith in a positive outcome (a positive outcome doesn't mean everything rosy but that things could have been worse), a degree of physical fitness, meditating and the support of loved ones were the main factors in my recovery - and of course an experienced surgical team. By far in all of this though - a positive attitude has to be the most important single factor.
All best wishes are sent to you Sam and Adrian, along with a good measure of positive thinking :)
Caroll
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I don't have time to write, but I do want to clarify the "bowling bowl" comment. In no way, shape, or form did I think that Bruce was being rude, I knew how he meant it and I thought it was funny. The one thing about type is that you can't tell sarcasm. My comment was very sarcastic and was supposed to be funny. Bruce is one of the MOST informed and educated people on this forum regarding AN issues, I have nothing but complete respect for him. So....that being said, I will write a post tomorrow morning, hope everyone has a good day......TGIF!!!!!!!
Adrian
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Heck Adrian,
I prefer to toss Bruce a curve ball on occassion... he knows I'm famous for it.. and you are right... he's not the rude sort and he's on the "ball" as well! :)
I'm thrilled things are moving along for you, that you have found comfort in your decision and ask that Sam keep us updated on how things go for you and your surgery as it occurs. We're here to cheer you on, give our support and on occassion, toss back a bit of sarcasm as well... :)
I have to side note that on that last comment.. was watching Larry King Live (CNN) last night and his interview with Tammy Faye (Bakker) Messner... here is a woman on her deathbed and the humor and positive light she carries with her, even during this difficult time, is amazing... Dr. Deepak from CNN was also on the guest panel.. and he noted how humor and positive energy is confirming to the medical community that it can help with longevity in those terminally ill.....and she is proof of it. I am not of her faith, but of her "human" faith and I commend her on keeping her head held high (as best as she can) with such love and support and positive vibes for all during this time. She truly inspired me with her words of strength... just in awe of her right now.....
Now, granted, we are not in her shoes... but.... we are enduring a difficult journey.. so keep the positive thoughts... the humor... knowing we are all here supporting you... cuz we're going to help you (and Sam) during this journey.... and heck.... the "ball" in your head will be gone shortly....but milk your current MRI films now... so you can look at Sam and say "Hun, look at this... physical proof I really DO have 'something' up there!" :)
Hang tough!
Phyl
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Sam and Adrian,
I replied to your "ear infection" post on that thread, just so you know. Good luck. Keep us updated.
Terri (tripsplus6)
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HI Sam and Adrian,
just sent you a private email...
I'm in Melbourne about an hours drive from you.
I've I'm not mistaken I think CeeCee treated with or met Dr. Fields. She had a facial nerumoa removed via endcoscopic procedure and for some reasont that name rings a bell.
You'll find we are a great network of compassionate and caring people who will stand by you while you make this decsion.
Yes, stress can make your sysmptoms worse.
haven't read all the inbetween posts but know from the names I've seen you've been given some good advice.
Now you and Bruce play nice together.... ;D He's one of the most knowlegeable and bestest crew member we have..he knows where all the good treats are hidden too!
Hugs,
Michelle
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Adrian and Samantha.
I am sorry to hear about your diagnosis but I know everything will be fine. I don't know if you read my other post about my 18 year old who just had surgery about a month ago. I noticed that you replied to it. Good luck with finding the doctor. As difficult as it was to go through the surgery with my son, it was very difficult to decide on the doctor. I spent 2 weeks going back and forth and researching. It was between our doctors here and House. It was agony deciding becuase at the time you are very emotional so making a clear decision was difficult. The best Advise to me is after you have reasearched and researched, go with your gut. And don't be shy at all about asking about qualifications. I felt the decision on doctors was agonizing. And it is important to decide and don't look back. Trust your instincts. Good luck to you sweetie, you will be fine. :)
Robyn
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**Update**
Sam here...
Just wanted to give an update to our decision process. A friend doctor of ours highly recommended Dr. Bartels in Tampa. He and Dr. VanLovern would perform the surgery. Adrian e-mailed Bartels and was very impressed with the million and 1 questions he asked him. (House really didn't ask much) and when Adrian e-mailed him back answers to all the questions he sent along his list of questions for the Doc. In Dr. Bartels reply he explained many things in depth that we have not heard from other doctors and Adrian was fully impressed and got a really good feeling about him. So for now House is on hold. We have an appointment the 15th and have surgery also tentatively scheduled for Sept 6th! I am so happy to have a DATE! Amazing how much better that makes me feel! I guess because I just want this out so bad....
Anywho... If there are any here who know of either of these doctors we would sure love to hear your experience with them.
Thanks again for all the wonderful support and advice we have been receiving!!
HUGS
Sam~
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Sam -
I don't know either of these doctors, but I'm so glad to hear that Adrian is impressed with them. I personally believe in following your "gut" and in my case it helped me make the decision that I felt was right for me. If Adrian feels good about these doctors, and they have the experience necessary, IMO that's a good sign. Good luck with the appointment on the 15th.
Keep us posted,
Jan
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HI,
I can give you what we did. I will be candid this is just our story.
I too talked to House. The problem I had was how pushed I felt by them. In contrast to our Doctors at Colorado University it was complete opposite of how they operate. I couldn’t get the CU doctors to tell us how good they were. That was hard for us. Then I asked the Doctor at house about how they would do the surgery and about the doctors we had here. He asked about how my doctor here wanted to do it and he flatly told me that my doctors weren't going to be doing it the right way. Meaning they almost always do translab and he didn't like the Retro method. I felt uncomfortable with that too. So I called my doctors and asked them about the different methods. I was told that translab was a good method but they wanted to use retro because of the brainstem issue. I personally felt that sticking to only one method was a little bit too constrictive. House also wanted to leave pieces even around the brainstem. So I talked to our Doctor about that and he was not as comfortable with leaving pieces, he would if he had to but they don’t do it unless they have to. Especially because Eric was so young. Our doctor gave us examples of cases over the years and what he had done and the problems that he had seen years later. When I talked to that doctor and realized that he had seen these for years and understood what can happen later because that is how experienced he is, I knew he was our guy. I also was told by many ENTS that our ENT was a fantastic surgeon.
It was very hard to make up our mind because our ENT surgeon had the worst bedside manner ever. He was terrifying. LOL. But our original ENT said that that is how some surgeons are. They are a different bird. I remember the last day when we had to make a decision. My intuition said go with our doctors here but I kept feeling like I should ‘want’ to have Eric go to house That was agony. So, I finally asked my doctors outright about what they thought about their competency and I felt satisfied at that moment and listening to my intuition was the key. We had a great result and we had a great result with the whole tumor gone. Of course our ENT said that was luck. I tend to think that part was the reiki and the prayers and the incredible skill of our doctor combined. And we did our best to stay as positive as possible. It sounds like you are doing that quite well.
Once again, I know that house is good but they are not the only ones that are good and remember, how many you do in a year is not the ‘only’ criteria for picking a doctor. There is not just one doctor in the US who can do these and are good at it. Because Eric had such a large tumor we were lucky to get our ENT doctor. He only does difficult cases. I believe if he was not our surgeon we would have gone with house. Just our story. Hope it helps.
PS I feel picking the doctor was really hard. After that we just left it in their hands and knew we made the best decison possible. GOOD LUCK>
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Robyn,
House is good, but they are by no means the only good clinic. In fact there are quite a few good AN surgeons around. You picked well, and did a great job as "AN Manager". Well done.
Sam 'n' Adrian:
In case you are not a fanatic Googler like me, I checked up on those two. First, about Loren J Bartels MD FACS, Clinical Professor of Department of Otolaryngology, University of South Florida, College of Medicine, Tampa, Florida.
He is no slacker, that's for sure, his list of appointments, articles, presentations, etc. is longer than my arm:
http://www.tampabayhearing.com/PeopleBartels.aspx
And according to this link, he has done over 400 AN's and 100 other skull base tumors. He's been around the block, in other words:
http://www.tampabayhearing.com/Tumors.aspx
The neurosurgeon you also mentioned, Harry R. van Loveren, M.D., is Chairman of the Department of Neurological Surgery & Rehabilitation - not exactly a slacker either. Here is a link on him as well, although without as much info in it:
http://health.usf.edu/com/neurosurgery/faculty.htm
I'm no expert, but they sure look good to me. You must be psyched to have a date set, you have done a great job handling all this.
Best wishes,
Steve
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Thier credentials look impressive.
I forgot to say too that I asked other ENTs in the area what they thought about our doctors. That made a huge difference in making our desicion and the nuerosurgeon is as important as the ENT surgeon especially with large tumors. When I asked one of the ENTS here in Colorado about Lillihei they said that Tumors is all he does all day long. That was important to us too. I called a ton of doctors to see what they thought. It was very helpful for us.
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Thank you for sharing your story Robyn. It is definitely a heavy burden deciding whose hands you're going to put your fate in! I am SO glad your son's surgery went wonderfully and that you are completely satisfied with your decision and outcome. ;D
Steve - Thank you for those links. They both look very impressive on paper! :) That kind of experience is comforting to know. I did a search on here for Dr. Bartels and didn't come up with much so I guess just none of his patients are on the forum. That is okay though, we will just get to be the first! :)
We will without a doubt be posting our entire experience when it is done. ;)
Sam~
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Adrian just want you to know that there are good results with tumors this size. That was important for us to know. I know that the wait is difficult. You just want it to be over with. We made use of the time to do some unconventional treatments to see if that would help the outcome. We will never know if that was what helped our outcome but I tend to think so. You both sound very positive. Everything will be fine. :)
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Robyn -
It's wonderful to hear your son is doing so well; he's been through a lot - and at such a young age. It sounds like you did a great job of finding the best treatment for him. I know from posts on this forum that everyone seems to talk about House, and it sounds like a wonderful place, but there are also other very great options out there. The key is finding a good doc with the right experience - good bedside manner or not - and your son is living proof of that. My neurotologist is a fantastic doctor and good guy (love him to pieces), but I find him much too serious ;D I'm big on humor, especially in scary situations (like my AN surgery), and I had a hard time getting him to crack a smile. Despite that, my gut feeling was that he was the one to do the job and I was right.
Jan
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Hello All….this is Adrian. I apologize for taking so long to write…..lots going on. I also needed some time to think. This forum is wonderful, so full of information, but there comes a time when one needs some alone time to filter thru all of the information and land on a decision.
Upon a recommendation from a surgeon acquaintance of mine, he recommended Dr. Bartels in Tampa, FL. The recommendation is of very strong value. Dr. Rechtine was the Director of Spine at Shand’s in Gainesville, FL and is now the Director at U of Rochester. The Neurosurgeon is Dr. van Loveren. Click the links on both of their names and you can read a little about them. Calling Dr. Bartel’s resume stellar is an insult. The man has accomplished more in one week than most people accomplish in a lifetime.
I have yet to speak to either of them, but Dr. Bartels and I have had lots of email dialogue and his emails are impressive. He is definitely a teacher. His answers are very educational, not just an answer to a symptom.
I have a meeting with the both surgeons on the 15th of August and surgery is tentatively scheduled for the 6th of September. Oddly enough, Dr. Bartels has performed about 500 AN surgeries and over 600 skull based surgeries during his career, but there are virtually no posts regarding him on this forum. I did email and speak to screen name Runnergirl who had the exact same team and she can’t say enough good things about Dr. Bartels. She is a tri-athlete and has a good post-op even though she has facial paralyzation.
If there is anyone else who used Dr. Bartels, please post on my forum or send me a personal message, I’d love to hear your experience.
I know this is reiterating Sam’s last post, but this is all for information that I have right now. More will come after the 15th when I meet the surgeons.
Thank you once again for all of the information and all of the support.
Adrian
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HI Adrian,
Good for you. Your surgeons sound excellent. Just so you know the surgeons we picked were not anywhere to be found on this forum. The surgeons themselves had told us of many large tumors they had done it seems like they had done one a every week or two but no one on this list mentioned them. I think that the opinions of other respected doctors is a good gauge. It worked in our case. You really sound like you are doing a fantastic job of researching. Good luck. This is hardest time. Getting a date so early is great. We had to wait a month after we picked our doctors. Seemed like forever. :)
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I did not do the links correctly regarding the surgeons.....let's try this again ::)
Dr. Bartels http://www.tampabayhearing.com/PeopleBartels.aspx (http://www.tampabayhearing.com/PeopleBartels.aspx)
Dr. van Loveren http://www.societyns.org/society/bio.asp?MemberID=176 (http://www.societyns.org/society/bio.asp?MemberID=176)
Talk to everyone soon.
Adrian
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HI Adrian,
Those are very impressive credentials. Just a note, Our Head and Neck surgeon also studied in Zurich. In fact, he went there the day after Eric's surgery for a conference. Apparently, that is a good place to learn. I personally really like the Educational setting. Those guys look pretty good from their website. I would just make sure they do many of these tumors and maybe ask about past results from large tumors.
Here are the links to our surgeons. If ti helps.
http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html