A place to vent

[Captain Deb]

   It seems weird to me that the medical community has not worked it all out already, and that they leave it up to us, as if we knew what we were doing. 
Steve

BINGO!!!!!!!!!

Quote of the Century, at least here. Let's put it on T-shirts for the next ANA convention.

Capt Deb

[Omaschwannoma]

Bingo?!  Prove it!   

I want one of those T-shirts as I have asked myself the same question but never wanted to say it OUTLOUD so as not to offend any professional--but whatthehey way to say it Steve!

[linnilue]

Bingo?!  Prove it!   

I want one of those T-shirts as I have asked myself the same question but never wanted to say it OUTLOUD so as not to offend any professional--but whatthehey way to say it Steve!

     Touche'   only I did and have confronted my AN physicians which at this time are numerous.  I think it is pathetic that many of these "professionals" are so out of touch with the AN community of patients in general.  Theya have no clue what to do when situations arise that need medical attention because they themselves don't know exactly where to send their patients or what treatment is necessary if any.  I have also found that these same physicains are totally unaware of the impact an AN has both physically and emotionally post-treatment.  I could not beleive it when I started having problems post radiation and I looked to my neuro guys for help and answer and they had nothing for me except stupid ugly and uninformed responses.  It was so frustrating and emotionally draining for me, I felt alone, empty and very depressed that noone knew how to help me.  I had no energy, felt sick all the time and had to muster the effort to try to figure out every last move and appointment I had to make.  Thank god I am in a much better place and thank God for this forum.  I will never feel alone again.  I know that when I need an answer I can find it here.  I thnak all of you for that.  Now let's band together to try to educate our doctors so that others don't suffer in the way some of us have.  We must insist that they put together comprehensive programs so that they as well as we can get the help and suppost we need.  I think I need to make a trip to Washington!!!

[sgerrard]

  I have also found that these same physicains are totally unaware of the impact an AN has both physically and emotionally post-treatment. 

Just last week I saw my ENT, and as I was leaving, I said something like "you should have an acoustic neuroma sometime to see what it is like." He gave me an odd smile while shaking his head. I suddenly realized at that moment that most doctors have no idea what "that feeling of fullness" actually feels like, or what any of the other symptoms are really like, or what it is like to go through treatment. Their only sources are what they read in books, what they hear from other doctors, and what is told to them by patients.

What we really need is a nifty machine that 1) gives a doctor all the symptoms of having an AN, and then 2) gives them all the symptoms of having it treated by their various methods. Of course I mean temporarily...

Steve

[GM]

How about a “Reverse ANâ€? conference?  Instead of the docs getting together and discussing the latest technological advances with each other…they get together with patients.  We discuss our frustrations, the way we became self educated on our AN (self-education methods), our decision making strategies, and how we feel/deal with our symptoms post treatment?

Wait have to keep it in the vent area of this forum…have to say something “vent likeâ€?   So here it is…Hey, get with it docs!  AN Patients are smart and informed…but you’re supposed to be the professionals!   

Gary 

[Omaschwannoma]

YEAAA!  I agree with Steve and Gary!  As I read nikynu I was thinking hmmmmm.....what would simulate "wonkyhead", "fishbowl", "fullness", etc.?  We could over stuff his ears, place headphones on with the sounds of tinnitus then put one of the docs underwater and take him to a depth where there's pressure build up, oh but first, let's get him drunk, I mean really drunk and do this procedure the next day when he's got one of the worst hangovers simulating the head pain!  Then after he's given us the "thumbs up" hand signal to come up from the depths we'll ask him how he felt.  Maybe we'll just look at him with a sheepish grin and scribble onto a pad for him to see a psychiatrist as it must be stress causing your symptoms.   

[linnilue]

Karen,  It's so true, it's disturbing.  It's a good thing we can get a laugh on them otherwise....But Honestly it is my learned opinion that AN's should get the same attention and thoroughness of care as any patient (i.e. cancer, cardiac) with a very complicated illness.  The care we receive is not comprehensive, it is fragmented and incomplete and yes, the docs are ready with psych. referrals when they can't put their finger on your symptomatology.  Believe me, I know!!!!!  And I wish I didn't.  But I think that it would be a good thing for the association to start putting out information publicly like the cancer and heart associations do for a formula of care, expectations and updated research.  I think we deserve it.  As I said, I think I better make a trip to Washington!

[marg]

All right all.... I am in total agreement about finding a way to inform the public....( INCLUDING the doctors who treat us) about the life changing reality  of dealing with AN and all that goes with it.  I actually had an ENT tell me when I went to go see him that...  'if I lost my hearing  in my AN ear ... it would be no big deal and  I'd adjust.'   At the time I didn't know what to say (and of course I still had my hearing) so I thought he had talked to lots of people who had lost their hearing on the AN side and the other ear must have adjusted and it really wasn't much of a problem.   HA !!!   Well, I know better now and frankly I am MAD !   In the less than 3 months since I have had my surgery  I have had too many people say things like - 'well, at least it isn't cancer'  or  tell me - ( and this is a direct quote)  : " that's why God gave you 2 ears  - so you would have a spare" .  I now make it perfectly clear what it is like dealing  minute by minute with the changes in my life.
     #1 How tired I get trying to understand what people are saying .. in a crowded room or over music, TV, radio etc. because I only hear on one side.... and where is the sound coming from anyway? !
     #2 The loud and varied tinnitus sounds I hear constantly ... which are worse now because I don't have any outside sounds on that side to compete with the sounds inside that deaf ear area.
     #3  The balance issues .... which are better but still a problem.
     #4  My facial paralysis ... which is getting somewhat better but still causes great difficulty -- I can't blink... washing my hair or face is a PAIN because I don't want to get soap in my eye, I can't rinse my mouth after brushing my teeth without 'leaking' out of the weak side, I hardly smile because it draws attention to my 1/2 way working face. 

Of course I don't  go over all these areas with someone.... only the area that applies to their "expert" advice or  comment..... and I present it in a nice way ( I have been doing parent teacher conferences for 30 years... so I am used to using tact when getting my point across.... even when I am ticked ...thank goodness).  I will be seeing my neurosurgeon in another week and I will be sitting down and writing up some notes of things I want to share with him.... what it is truly like to deal with the result of an AN post treatment.  I don't know if it will help but..... I will share with him in words he can clearly understand the impact something like this has on those who go through it. 
     I too would love to have the  doctors who treat the AN experience what it is like to deal with this on a day by day -  minute by minute basis.... for at least 3 months (with them not knowing when it would end).   How an AN can affect their relationships with:  extended family, spouse, children and friends.  The changes in the ability to do their job.....if they can still do it at all - they maybe have to change to some other line of work or go on disability...   and this leads right into the tumor's affect on  self esteem.

     Here is an  example.  My husband and I have wanted to go to Hawaii ever since we got married 27 years ago.  We finally  could work it out.  I had just made the reservations for us to go in July for this long awaited trip  - when I found out I had "a benign tumor called an acoustic neuroma".   I had surgery in May and yes we did go on our trip.  I am so glad we went .  Here are the positives (glass 1/2 full) :    The weather was beautiful, I was there with the man I love, we saw many beautiful and interesting things, the people were great and I didn't get airsick  .....  BUT these things were also a reality:  I couldn't snorkle (like I have always wanted to do) because I can't close my mouth tightly around anything.  I couldn't walk on the sea wall because with my balance I could have fallen in the ocean ...... but the hardest thing was that in the pictures I was in ... I either wasn't smiling  or my face looked like I had had a stroke.  I had to make a tough decision... keep the best of those pictures or only keep the ones of my husband and Hawaii.   Well, I did keep the pictures to remind myself that I had survived a very tough surgery and life does go on.  But I'll tell you a secret.... it hurts every time I look at those pictures... because I don't see the 'real me' the one who smiles and laughs a lot.  I see someone else who kind of looks like me... but has something wrong with her. 

     My life (and yours dear friends) is changed... and for most of us will never be the same.  Most of the time I look at the glass as 'half full' and yes I do count my blessing but I will never be the same again and I miss what I have lost.  It is a 'big deal'.  And every day I have times I feel sad about how how things are now.... and the adjustments I have to make and the things I miss hearing/understanding. 

     Thanks for the place and safety to vent  how I feel ....to people who I know will understand. 
Margaret

[Windsong]

and that is why I feel that this An is not particularly"benign"....it leaves too many other things......

[Lorenzo]

educating docs... ah yaaa... well, I missed my chance to do that; when i 'said' too much i was dismissed by them, and was left with one other guy i could see in the entire country (small place, few neuros). So, docs, i'm still mad about that. Do they have an understanding of what it's really like? No. How could they?? All I'm asking is that they consider what we're telling them as more than just anecdotal, we're not making this stuff up! Unfortunately, I think that some docs will never see it our way. They're mechanics, they fix things. The rest is up to us, or others to fine tune. At least, that's the impression I get from their reactions.

[Omaschwannoma]

YEAAAA! to all comments above mine!  The docs leave this life altering choice for treatment up to us (unless size is an issue), so we become educated, set appointments to talk with "the experts" and while spilling our information out in the doctors' office we are chastised (as I was numerous times), the doctors' ego seemed to rear it's ugliness.  Seems they feel I am challenging their knowledge with questions (which tells me they are taking it "personally" and maybe they're the ones with a "personality disorder")! 

My point is (catching my breath after such a winded statement), with my post treatment symptoms all I want is an honest answer if what I am dealing with is something that can be fixed with meds, time, PT, more definitive tests, how about an opthamalagist for my nystagmus and oscillopsia (read about Tx for this with Rx)?  If there is nothing that can be done and time will only tell then prove this to me, give me good information based on what is seen in their other AN patients, but for Pete's sake (don't know Pete) stop with the Dx of "See a psychiatrist as it's stress related." canned response which tells me anyway that you don't have the cahonays to say "I'm at a loss here because it's out of my field of expertise, let me find someone who can help you." 

WHEW!  What a venting session here for me!  Guess I needed that.  Nikynu how about an AN march on Washington?!  When's the bus leaving, I want a ticket! 

[matti]

My diagnosis (after 2 years of misdiagnosis hell) was finally made by my dentist. While I was sitting in his chair he called up my GP and told him that he thought I needed an MRI because he was highly suspicious of my symptoms and he thought a possible tumor. Anyway, I have the MRI, then see my GP for the "official" diagnosis and he proceeds to wave a finger in my face and tell me how embarrased and appalled he was to be called by a dentist and be told what to do. Shame on this doctor!!!!!!!!!  I then proceeded to wave my finger in his face and tell him that it's time to put his massive ego aside and do what is in the best interest of his patients like he was taught back in med school. I also told him a few other things, but can't mention those on here.

Cheryl

[Brendalu]

Leave room for me on that bus to Washington, too!  I have experience there....in 1969 I was protesting our involvement in VietNam  ( I supported our troops) anyway, a group of us were protesting on the Capitol steps and got arrested.  We were from a very small town and didn't know you had to have a permit!  The judge let us all go with a warning.  We got our permit and protested more. 
I would just like a doctor to not say well everyone else has had a routine recovery.  I am not everyone else, I am me and I count too.
Brendalu

[Larry]

Margaret,

I don't fully understand all of your issues because i don't experience them all but I can certainly agree with your sentiments.

I want to also take a sec to clarify my earlier comments that Docs will go for the dollars. I should have not been so generic. There are conciensous docs around and there are greedy ones. A little story if i may, I haven't spoken of this before but feel its important to share in light of this topic. My brother is a cancer specialist. He performs bone marrow transplants. I say this so that you can see my comments are not an all out attack on docs. he works in a public hospital and his hourly rate is below an orderly's. he works extremely long hours. He is allowed one afternoon a week for private patients. His income is pretty good but compared to other specialist that are in the private industry, his income pales into insignificance (even down under). Now where am i going here. he is one doc that actually cares about his work and is not in it for the $. he has mates that are in it for the $ and their biggest decision each year is what car can I upgrade to after a merc!!.

The ENt surgeon that I had dismissed radiation right at the start and inferred it like chemo therapy to scare me coz he wouldn't get any fees. I know that now.

In the U.S where surgeons fees are over $50K a pop, I am too sceptical about those that close the door on radiation as an option and can only assume its for the $. I am self employed and if i have an opportunity to earn $50k for half a day's work or send that person on to someone else, well, I'm afraid I know what i would do. I'm not saying that surgery isn't a good option but I get concerned when docs close the door on alternatives.

I'd also like to address the lack of compassion that docs display. My brother sees life and death every day. Thankfully, he has a very good success rate. he is a person that is not a great communicator as far as emotional stuff goes and he has told me that as soon as he opens his emotions up, he will fail in his job. he says that you must remain objective when treating deriously ill people, as soon as you get emotionally involved, you are gone. i must say that his stress levels are very high also.

Now us AN'rs are a little different to cancer patients but nonetheless have serious issues to deal with. I would however like to see docs inch a little closer to compassion than they do but hey, I don't think they are trained for it.

whew, too much detail for a Tuesday morning.

Laz.

[Gennysmom]

Not to take anything away from anyone, but I have to say I have the best doctor.  I went straight from audiogram to MRI, to brain tumor ENT in a matter of 2 weeks.  I'm lucky though, my Doctor has a Brother-in-law who had an AN removal several years ago, and he's very sympathetic/interested in what's going on with me.  3 cheers for Dr. Mehlum!!!!!!!   Not only that, but he's a HMO doctor!!!!  

Unlucky for me, mine was 3.1 by the time I admitted to a hearing problem, and now I have a big hole in my head and feel wacky about 100% of the time.  Poo!!!!!!!!  It's me own fault for not speaking up sooner!!!!!  Boo to me!!!!!!!!!!!