ANA Discussion Forum
General Category => Inquiries => Topic started by: Glenda on January 28, 2008, 09:49:17 pm
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:( Hi All, I was just diagnosed last week and had never heard of AN before. Had been treated for a sinus infection that would not get better. Family doc sent me to ENT for diagnosis, had tinnitus, fullness and some pain. After MRI my ENT gave the results of a 5mm AN. He has set up an appointment with a specialist on 2/19. I have researched this Dr and found that he has an excellent resume with a years training at the House Institute. He is also on the Best Doctors List. To say the least I am scared, and after reading posts on this website, it seems there are alot of problems that I had no idea could be associated with AN. I am having neck pain (popping noises in my neck) and headaches in the back of my head. I'm not sure if these are results of AN or not. I had thought may be stress. I have noticed weakness on the right side of my face and eye (that is the AN side). I do have dry eyes already but it does seem as though the right side is worse. I just have so many questions and concerns. I am so happy to have found this site where there are others who are going through the same thing. I think I am rambling but just have so many questions at this point. Thanks in advance for your advice!
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Welcome! sorry you ended up here !
yepper.. a lot of those problems could be AN related... I had headaches and neck issues for years.. and never reallized the were AN headaches...
5mm is tiny!!! you will have lots of choices... and lots of time.. no need to rush into anything.. a "House" trained doctor is a good place to start...
(note: I went to House) continue your research .. get other opinoins.. CK, GK, watch and Wait..
Take a Deeep breath ... you will... (and we are proof!) get though this... the first stage (and we all have gone though it) is Panic!
So what State do you Live? I'm CT here....
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Glenda -
hi and welcome. I'm so glad you found this site, it will prove invaluable in the journey ahead of you.
As Joef said, your AN is very small, so you have plenty of time to decide on your course of treatment.
Being diagnosed with an AN is scary, but as you educate yourself, hopefully some of that fear will go away. It sounds like you have been referred to a great doctor who has lots of experience in ANs, which is definitely something in your favor.
If you haven't already, I encourage you to contact the ANA and request some of their literature; they have some very helpful brochures.
Best of luck to you,
Jan
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Hi Glenda and welcome.
You are off to a good start on this journey by educating yourself. It seems like you are in a good position to take your time and do the research so you can decide what works best for you. As Joef said, we all got through this and so will you! It just seems scary now. Before long, you will be discussing AN's over a cup of coffee just like it was a normal, everyday thing!
And I too, was being treated for a "sinus" headache and infection - for 15 years. Now that's one heck of a sinus infection, if you ask me!
Good luck on your search!
Lori
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Hi, Glenda:
I'm sorry you've been diagnosed with an acoustic nueroma tumor but pleased that you've found this website and forum. :)
At just under an inch, your AN is, indeed, tiny and that is good news. It means that you have options. Of course, options also dictate choices to be made but fortunately, you have the time to make them with knowledge and after the initial shock of your AN diagnosis passes, as it will. The ANA has lots of information to offer and of course, these forums are open to any questions we can answer as non-physicians with practical experience in dealing with an acoustic nueroma. It can be a minefield but we've all 'been there' and we've all made it through, albeit not always easily. No AN case is exactly the same and one patient's good or not-so-good experience should not determine your attitude about treating this condition. Read, learn, ask and use that acquired knowledge to make informed decisions regarding how you'll address the AN. You have time, but it isn't infinite, so don't waste it worrying or allowing anxiety to overwhelm you. An acoustic neuroma tumor is almost always benign - and treatable. While there are risks in any medical procedure the sooner you can attack the AN (most likely with radiation but possibly surgery, if you choose it) the better your ultimate outcome should be.
We all wish you a good outcome as you begin your 'AN journey'. As AN 'survivors', we're here if and when you need us and we care what happens to you, Glenda. Please stay connected.
Jim
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Thank you all so much for the warm welcome. I am, I think, still in shock from the news. I'm glad to realize that my AN is tiny. I had felt as though I would have to have something done soon, but it's nice to know I will have time to digest this info and learn more before I have to make any decisions.
I am from South Carolina and the doctor I am referred to is Dr Paul Lambert at MUSC in Charleston SC. I will do some research and get the opinion of the doctor and go from there. I'm sure I will have lots of questions for you all :)
Thank you ALL for your posts and for being there for me!
Glenda
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Hey Glenda- welcome to the club ::). Having said that the worst time is when you are first diagnosed. I was diagnosed right before Christmas last year and yeah, I just thought I had bad sinuses too! You do have time to sit back and think about what you want. I know a lot of my side effects that I blamed on the AN have subsided and now I think they are more stress related. Be prepared to get conflicting opinions. I had 4 opinions total: first one was to debulk via translab surgery, then radiate with gamma knife, second one said to do translab, no radiation. Third one said retro sigmoid, no radiation, fourth one said radiation only. I had about 6 months to make up my mind, but I have a 2.5 CM so I really did need to do something about it. In your case you are the lucky one (or not so lucky, depending on the point of view). You have the opportunity to watch and wait, which is a very valid option, but one I hugely admire! I'm not sure I would be a good watch and waiter so that's why I kinda of feel fortunate that I had to deal with my AN sooner rather than later. I opted for #4 CK radiation, but I was very adverse to surgery from day one. After opinion number 3, I scheduled surgery only to do a gut check and go back to the AN website and have people tell me to go for it, get a fourth opinion. I am glad I did. So if you opt for surgery that's great too, just know that there is a surgery bias to this field and I would think radiation for your size would be a great option... Take care of yourself- Annie
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Hey Annie,
Thanks for sharing your experiences. I have some questions for you if you don't mind..... :) How did you go about getting the opinions and from who did you get them? I have an appt with an ENT surgeon. I have checked out his credentials and he did a fellowship with the House Clinic which I thought sounded very good. After that I really don't know where to turn. Did you actually see others for an opinion or did you consult via email or some other way? I know my AN is small but I don't know how good I will be at watching and waiting. I really want it gone....My daughter just found out she is pregnant though so I think I would rather wait until after the baby is born to have anything done. How long do they usually wait to do another MRI? I hope mine does not turn out to be a fast growing one. It seems from the posts I have read that problems are lessened when something is done early while the AN is small. My tinnitus is already pretty bad. I sleep with an air filter humming to drown out the head noise. Sometimes it is worse than other times but it never goes away. Fullness and occasional pain are also symptoms. Also, does insurance usually cover the surgery if you opt to travel to have it done? I really have very good insurance with my job.
I hope I haven't ask too many questions.... I'm just really overwhelmed at this point. I'm really tired so hope I am making sense. I'm going to sign off and go to bed. Thank you again!
Glenda
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Hi Glenda and welcome,
This group offers lots of support and a wealth on knowledge. I know it really helped me and I continue to enjoy the comments and compassion shown here.
I am also from SC. I was referred to Duke and had the translab approach 8-2-05. I had a great team. Dr. Cunningham, Dr. McElveen and Dr. Fukushima. The tumor was 2+ cm and I had already lost most of my hearing on the An side. They removed all of the tumor and I did not have ay facial issues.I did battle with nausea and dizziness before and after surgery. My balance has gotten better and I rarely experience nausea.I will llft you in prayer as you decide the course of treatment and as you continue in your AN journey.
Take care and God bless,
Lynn
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Hi Lynn,
Thanks so much for sharing your experiences with me. I am so glad you are doing so well and I pray I will do as well. It is so nice to hear from others in SC. Do you attend the support group meetings? I am checking into those and am looking forward to be able to actually meet and talk to someone who has experiences. I am reading alot of posts here and feel like I am getting to know many of the regulars...It is such a blessing for all of you to give of your time and support those of us who are newbies...It helps so much to not feel you are alone. God Bless you all!!!
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Hi Glenda
Welcome. I'm a new member too. It took me two months post-surgery to find my way here, but now that I have I feel very confident with such a great support group. I am not as experienced it the methods of surgery. I had a translab in the beginning of December and my issues are mainly post-operative. I can tell you this from recent experience (AN diagnosed in September 2007), the thought of tumor surgery was devastating. In retrospect, my surgery was a piece of cake. It was perfomed by Dr Slatery of the House Clinic and St Josephs Hospital here in Los Angeles. It was a good experience as surgeries go. As you will see on this board, post-op is the issue. Since your AN is small (there have been some monsters on this board), you may want to consider having it monitored -- regular MRIs. Unless of course you are feeling the effects of it now. In any case, read the post-op posts on this board to know what you can realistically expect. You found a good place here and a lot of good understanding people you can turn to. I did, and I am very thankful I found them.
David
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Hi Glenda and welcome. I LOVE the name Glenda... I'm kinda of a "Wizard of Oz" buff and LOVED her dress and magic wand.... I wish I had a magic wand to wave over you so that you don't have to endure this new journey, but.... I can share that, as you can see, this site is filled with folks that truly do care (yep, our AN munchkins! :) )
So much to learn, I know that you may endure info overload.... as there is much to research... esp. since your AN is extremely tiny. I can only offer a shoulder, a good ear, a thought, an input, an Inbox.... or a bad joke or watered down drink..... but, either way, I did want to extend a hello. If you need help navigating the website or whatever.... just let us know... glad to help.
BTW, no flying monkeys on this site ;) And if anyone tries to call me Miss Gulch....
Again, welcome! glad you found us.....
Phyl
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Thank you for the welcome Phyl! It has been a bad day for me, (think I've read so much I'm in Overload status), so I really needed that chuckle you provided ;D
I've been spending alot of time on this site and I've been waiting for you. I now feel like I'm an official participant ;)
By the way I also love the "Wizard of Oz"!! The munchkins are my favorites so I'm so happy to have found all of you (AN munchkins) and I'm so glad those pesky flying monkeys are not here.
From what I know of Miss Gulch, she has absolutely NO personality so there is no way anyone could confuse the two of you :D
Thanks once again to ALL of you!
As you say Phyl, many huggles to you all for being there for all of us newbies!!!
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*kicks dust particle on floor* ::)
Aw, shucks Glenda... just doin' my job :)
Glad you found us... and before you know it, once the info overload has calmed down... and decisions are made (once it's time to be made).... you'll be singing "Ding, Dong, the AN Witch is dead".... not referencing moi, of course... that dang brain booger (as I like to call it) in yer head! :)
Hang in there Glenda... and yes, you too are an official AN participant! Glad to have you here. Huggles back!
Phyl, not to be confused with Miss Gulch
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Hi Glenda and welcome to the forum!
I thought I should clarify the size of a 5mm tumor. It's much much smaller than 1 inch.
By definition there are 25.4 millimeters in 1 inch.
So yours is only 1/5 of an inch.
Your going to be able to take care of that little bugger!
Best wishes-Neal
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Welcome!
I never got a response from Phyl when i first came onboard so you should feel extra special!!
As you have already seen, there are many, many people who are always here for you!
K
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Welcome!
I never got a response from Phyl when i first came onboard so you should feel extra special!!
As you have already seen, there are many, many people who are always here for you!
K
*runs in, gives Kay a BIG huggle.......*
I'm sorry Kay, very difficult for me to keep up with all that recently joined us here... my bad :'( Good to see you here, participating and sharing and sorry for the delayed welcome.
Great to see you here.
Phyl
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Hey Phyl~
I shouldn't have even written that -- you do such a great job of keeping up w/ everyone!! I was sorry I posted that right after I did b/c I was afraid it would convey the wrong meaning! Why should I bother with a little thing like that anyway, there are so many people here that need encouragement and support -- I want to just help w/ that!!
Have a great Sunday!
K
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no worries... fa'getaboutit! :-*
Hey Phyl~
I shouldn't have even written that -- you do such a great job of keeping up w/ everyone!! I was sorry I posted that right after I did b/c I was afraid it would convey the wrong meaning! Why should I bother with a little thing like that anyway, there are so many people here that need encouragement and support -- I want to just help w/ that!!
Have a great Sunday!
K
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Hi K
The Great thing I have found about this site is that everyone is Extra Special !! :D ;D
I Love you guys!!
Glenda (the Good Witch of the South) ::)
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I have always joked that I know I am special since they named a cereal after me -- "Special K"!!! :D
K
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Mine too was the same size as yours. I did not find this site until after my surgery. I thought the best approach was to have surgery right away and get on with my life. Even though I was given an 80% chance of saving my hearing that did not happen. I have since suffered from severe tinnitus and a severe dislike of sound such as motors. I also learned after the fact that even though I thought I had the best brain surgeon and the best AN surgeon the AN surgeon had an emergency and didn't show up. Of course I had no recourse and will never know if the outcome would have been different if he had performed the AN part of the surgery. I am telling you this not to scare you but to emphasize that you should not rush into anything.....weigh all your options and if it is more than one surgeon performing the task make sure you understand what will happen if one cannot make it.
Lorraine
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Tomorrow is the date to see the Otolarynologist! I've had to wait a month since being diagnosed and am anxious to get his opinion. I've got my MRI, doctor referral and question sheet (I've gathered with help from my friends here) and I'm ready to go. Wish me luck! Thank you all!
I'll update tomorrow......
Glenda
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Tomorrow is the date to see the Otolarynologist! I've had to wait a month since being diagnosed and am anxious to get his opinion. I've got my MRI, doctor referral and question sheet (I've gathered with help from my friends here) and I'm ready to go. Wish me luck! Thank you all!
I'll update tomorrow......
Glenda,
You are an informed patient! Good luck tomorrow. <keeping my fingers crossed>
Kate
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Glenda -
best of luck tomorrow; let us know how it goes.
Jan
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Best of luck at your appointment. I too am new to this site as recently diagnosed with a 1.6cm AN. Another person above, pardon me I forget who, suggested gettting some reading material from the ANA sent to you. I did this the first week I was diagnosed and it helped me tremendously! I highly recommend it. Best of luck, keep us posted :)
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Ok all I am back from the otolarynologist. He was very nice and took his time with my husband and myself. He went over the MRI and I saw my AN for the first time. I had tried looking at it on my computer but could never figure the program out....I am really not feeling any better than before I went. I had all the info from ANA and from my friends here so I think I pretty much knew what he would say. He recommended middle fossa surgery but said there was no rush as my AN is still small. He said it is about the size of a small butterbean and that there is a 50/50 chance of keeping some hearing in the ear. I am 49 years old and my daughter is due to have a baby on 10/1/08. At the moment I have decided to wait and watch to see if maybe we can do surgery after the baby is born. He did mention radiology but said there is a high probablitiy for hearing loss with that and he felt it should be a little bigger if I tried that. (I had pretty much ruled that out for me anyway as I really want that booger out!) He said he didn't think it would grow very much until then and it wouldn't lesson my chances of keeping some hearing much at all. I have to admit I was very nervous while there and ask most of the questions, forgot one but am going to call back and talk to the nurse. One answer he gave me has left me feeling really uneasy and I would love to have your opinions. I really wish I could just talk to someone as I feel really alone right now. :'( First of all he said he done 20-30 if these surgeries a year and had done over 500 in his career. When I ask who he used as his neurologist he said when he operated on a small one like mine he did the surgery alone. Have any of you ever heard of anyone doing that? There is an excellent neurosurgeon at this hospital who has worked on AN's, I have talked to one of his patients and he gave nothing but a glowing recommendation of him. However he had his surgery in 1999 and had a different ENT surgeon. (He also had a huge AN) I can find no one to talk to who has had surgery with the dr I saw today, (that is the question I forgot to ask, Were there patients I could talk to ???) I plan on calling back and asking his nurse that question. I am going to call the hospital and see if I can get another disc to send to House Clinc for their opinion. Another thing that bothers me is he said to wait until Oct or Nov to do another MRI. That is 9-10 months before doing a follow-up MRI and what if it takes a growing spurt. I see Jan where your's grew alot in just one month. I would really love to hear from some of you to get your opinions. Is there anyone who had a small AN like mine? Also I am in SC, are there any suggestions on doctors in the east that maybe I could get another opinion from. Thank you all for being there... Still unsure of the best thing to do ???
Glenda
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Hi Glenda,
There are others that will respond relative to the hearing preservation and radiation.
Your doctor indicating he would operate alone is in my opinion unusual. Most are done in tandem nowadays.
I once saw a medical diary show, called Sherry's Story. It was an acoustic neuroma operation. The doctors, including Dr. Friedman from House, was one of the doctors. I remember him saying that they could do all of the parts related to the surgery if they had too; but that the motor skills were different in opening the skull and those necessary to remove the tumor; it would require a change midstream during an individual surgery. That always stuck in my memory---one requires large motor skills and one requires fine motor skills.
Regarding waiting and watching, these tumors typically grow very slow. (Oftentimes it is cited that it is 2mm or less a year)
Your daughter's upcoming baby makes you a Grandma. Now that is an exciting event. There are two ways to look at surgery should that be the route taken. One is that if you decide to go ahead now with a small tumor, your recovery would be complete by then. If you wait until after the baby is born, your recuperation would be during the time the baby was a newborn...unless of course you decide to wait and watch for an extended period of time.
Do you have opportunity to get a second opinion? I am a firm believer in that. You'd be surprised how much information you gain from seeing more than one doctor.
One other question: What is your current hearing level now?
Kindest Regards,
Kate
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Glenda -
the rapid growth of my AN was totally unexpected and no one knows why it happened; guess I'm just an oddball ;D
Seriously, I think I'm more an exception to the rule, rather than the norm.
I don't know much about doctors working together to remove an AN other than my own case. I had a neurotologist (highly specialized ENT) and a neurosurgeon who worked together, which is what these two particular docs always do. Surgical removal of an AN is a very delicate, very time-consuming task (my surgery took 7 1/2 hours) and it's better to have 2 pairs of eyes and hands to do the work. From what I understand, it is very "close" work and eye strain can become an issue for the docs so they like to work as a team and relieve each other when necessary. I think they also tend to have their own "jobs" during the surgery. For instance, I know the neurosurgeon opened up my skull, but the neurotologist stitched me back up; they both took turns removing my AN. The location of the AN is also a consideration - in my case it was on the 7th and 8th cranial nerves and the docs had to monitor the nerves as well as carefully remove the AN itself. It can be a very tricky surgery.
For some patients watch and wait is a very good option and if it's one you are comfortable with, I can't think of any reason to rush into another form of treatment right now. Your AN is considered small and chances are good that it will grow slowly. Please know that whatever treatment decision you make, the members of this forum will support you.
I never sought a second opinion because I was completely comfortable with the first doctor I saw - my neurotologist. I talked to him in person and by phone numerous times before making my decision, but I never felt I needed to see another doctor because I had confidence in him, his experience level, and his abilities - plus he offered me the option of surgery or radiation. We just clicked and I knew that he was the man to do the job. In fact, I scheduled my surgery without even talking to the neurosurgeon. I figured if he was the only neurosurgeon the neurotologist would work with (and he certainly had other available options) than he was good enough for me. When I did meet the neurosurgeon about a week prior to surgery, I was very impressed with him and his "can do" attitude.
IMO, I had no reason to look elsewhere or consult with another doctor. However, in reading your last post, I get the sense that you haven't found a confidence level in the doctor you spoke with. So I think it makes perfect sense for you to seek a second opinion; it definitely can't hurt. If you don't feel you can make an informed decision at this point, keep doing your research.
Jan
BTW - congrats! You are certainly going to be a young grandma! Only 49! I'm 46 1/2 and my children are just going to be 12; guess I'll be an old grandma ;D
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Hi Glenda. Glad you got the doctors appointment over with.
I didn't have much time to make my decision for surgery, so I can't really answer any watch and wait questions for you. I can tell you that my surgeon just took a position at Duke - that might be too far for you - but I hear (out of one ear! :D) that they have a good program there. There are many good options on the east coast if that's where you want to go. Sounds like you will have time to research your options - that's always good.
And by the way, may I say, October 1st is the absolute BEST day for your daughter to have her baby! ;)
Lori
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Lore~
So is October 1st your b-day??????????
K
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Hmmm Lori - Oct 1st must be your birthday, I'll have to remember that ;)
My husband is disabled from a not so good experience at Duke so we do not want to go back there. I, however have thought about Emory. My husband has also been there and we were delighted with all the doctors that he saw. Right now I am just trying to take my time and weigh all the options.
Thanks for all the comments, a special Thank You for "Special K" for the pep talk. I think you are one "Special" person and I only hope I can be half as courageous and positive as you are. If you all haven't checked out K's blog be sure to look at it. She has the most beautiful daughters (just like her)
Kate, I am not sure what my current hearing level is. I was shown a chart and the right ear "AN side" was below the normal line and the audiologist said the type of hearing loss I had was typical of someone with my diagnosis. I just know that several months ago I moved the phone to the left ear. I remember clearly that day at work when I realised I could not hear well with my right ear. I had been thinking it was the phone I was using. The tinnitus is pretty bad and drowns out the high tones. Also I am definitely going to send a copy of the MRI to HEI to get their opinion.
Jan, I already have a 2 yr old grandson and there is absolutely nothing as wonderful as a grandchild ;D I did however start out young! My husband and I have been married 31 years. High school sweethearts ;) I am so sorry your AN was so fast growing and I really hope mine isn't, (not that I don't want to be like you) ;) It was so good that you were completely comfortable from the beginning with your doctor. I really liked the doctor I saw but when he said he would do the surgery alone and after saying it would take about 5 hours that concerned me greatly. I would still like to hear if anyone has experienced a surgery without a neurosurgeon present. I know that my AN is small but I would feel much better with a neurosurgeon present when they are inside my head next to my brain stem.
Thanks again to all of you for your help!
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Glenda -
I agree with you on your thoughts about having a neurosurgeon - letting someone literally go inside your head is not something to take lightly :)
I'd want a neurosurgeon too.
Jan
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Kate, I am not sure what my current hearing level is. I was shown a chart and the right ear "AN side" was below the normal line and the audiologist said the type of hearing loss I had was typical of someone with my diagnosis. I just know that several months ago I moved the phone to the left ear. I remember clearly that day at work when I realised I could not hear well with my right ear. I had been thinking it was the phone I was using. The tinnitus is pretty bad and drowns out the high tones. Also I am definitely going to send a copy of the MRI to HEI to get their opinion.
Glenda,
I am glad that you are sending your MRI to HEI for their opinion as they "invented" the middle fossa surgery. Typically Middle Fossa is used when your current hearing level is above 50db. Make sure you get a copy of your hearing report when you send the MRI's. HEI provides a huge service to patients across the country by doing a free phone consultation. The only cost is the postage to get them there, but their expertise is priceless!
Kate
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Kate,
Thanks for the info about the hearing report. I did not know about that. I will definitely call to see if they will send me a copy.
Glenda
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Lore~
So is October 1st your b-day??????????
K
Whatever gave you that idea?? ;D
Glenda, I had a neurotologist and a neurosurgeon. I was told the neurotologist did anything outside the dura (covering of the brain) and the neurosurgeon did anything inside. I guess there are different ways of doing it according to what hospital you're in, but I think I'd feel better with another set of hands and eyes on my brain too.
Lori
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Glenda~
Enjoyed talking to you - I'm here if you ever want to talk again! You are such a sweetie! I'm glad you are sending all of your info to House. Like I said, I didn't go there, but I have heard such good stuff about them! Did you get to call the nurse?
Talk to you soon!
K :D
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Kate,
Thanks for the info about the hearing report. I did not know about that. I will definitely call to see if they will send me a copy.
Glenda
Glenda,
Whenever I have a test done,I ask for a copy of the written report. I keep them in my "AN" file:-)
Previously, I was under the impression that doctors or hospitals would only release them to doctors. That is not the case.
Kate