Do doctors read these posts?

[nipanddale]

Hey all--
Dale here. My wife joined the group a few days after I'd been diagnosed w/ a 3.5 cm. AN. I've been reading everyone's threads; I had been quite apprehensive about my impending treatment, but everyone's comments and support (esp msuscottie, capt deb, and battieprincess) have help my fears subside considerably. Yet, a few of the threads have raised new concerns:

1) I teach middle school language arts; will being deaf in one ear reduce how effective I am as an educator?

2) Does my doctor (Dr. Babu) know what the heck he's talking about?

3) Do doctors read these posts, take note of common symptoms and subsequently find correlations among them to improve AN treatments? Do the medical pro's have some kind of network where they can share insights and collectively work to improve our treatment options and quality of life?

Example: I read an older post about how many of you experienced severe headaches on one side of your head(s) before AND after surgery; for about seven years, about a month each year, I have had these headaches. They wake me up in the middle of the night, every night for a month or so straight every fall. When I asked Dr. Babu about them, he dismissed it as ,"...something unrelated," and didn't considet the possible relationship between my AN and the headaches.

After reading the headache post(s), I wonder if the doc's are (a) listening to their patient's complaints, and if so (b) actrually investigating whether they are related?

Thanks to all who responded to my wife's posts and all the support!

[Pembo]

Welcome Dale.  Here are my opinions on your concerns

1. Being deaf in one ear won't reduce your teacher effectiveness. It will take some adjustment however. Also I have the BAHA and it is wonderful. Don't be afraid to investigate into getting one. The post can be inserted at the time of An surgery.

2. I'm not sure that the drs do know everything about AN. I don't think they share insights and all that. I gave my doc a laundry list of post surgical complaints and all I've heard is "but you are so much better than before surgery." This is true, I'm not dizzy 100% of the time but I have new things and they are annoying.

So no I don't think the docs listen and investigate their patients complaints, at least not mine.

Good luck to you and there is a wealth of info here!

[Captain Deb]

Nipanddale,
From the three years of headache research I've been doing, you seem to be having symptoms of cluster headaches, particularly the night thing and the yearly cycle--see http://clusterheadaches.com a website with a lot of info on clusters and a support forum like this one. What treatment are you having and where?
Capt Deb

[shoegirl]

Hi Dale,  Welcome!

From my experience, doctors do know other AN doctors and they do compare notes.  However, I had CK and the radiaition oncologists whom do CK seem to compare notes and most are familiar with each other.  

My doctors have checked in from time to time on the different AN sites.  How often I am not sure, as I imagine they have little time to do so.  I think that AN doctors do get together for conferences but I don't know how often and what they discuss.  I  imagine they compare treatments, effectiveness, etc.  

If you don't feel like your doctors are listening to your symptoms/complaints then perhaps you should get some other opinions?  You have to have trust in your doctors and feel like they have your best interest in mind.    I hear wonderful things about House in L.A. (and the doctors) have you talked to them?

I wish you all the best!  

[nipanddale]

Hey all--
thanks for all of your comments! Capt. Deb-- I am not currently undergoing ANY treatment; I've just been diagnosed w/ a 3.5 cm. AN, and my doc says that it must be removed very soon. Like I said in my first thread, when I asked my doc about the headaches, he reassured me that they weren't related, but after reading your posts on headaches, I became suspicious. My wife, Norma, and I agree that while my doc probably knows what he's doing, his bedside manner leaves something to be desired. He made an effort to sound optimistic, he was careful to be blunt and informative. Yet, we both left the initial consultation somewhat upset and apprehensive.

I am worried that I will lose an inordinate amount of time in my classroom this fall, and the effects these treatments will have on my career. But I realize that NOT attending to my health would hve much worse effects on my career and life.
 
I am going to see the neurologist Dr. Babu works with on Tuesday, Dr. Pieper(sp?). Thanks for being there, everyone! It is very reassuring to know that there are people who have, "...been there, done that."

[russ]

Hi
  In talking with my neurosurgeon at Mayo Clinic, yes, he checks this site and thinks it's the best AN related discussion group going.
  I asked, "Did you see my 'plug' for you and Driscoll, Dr. Link?" No comment from Doc...
  Russ

[Joef]

I would definitly think about getting a BAHA .. I too have one, and think they are perfect for a classroom or office work!
boy, it seems like there are a lot of teachers here!!

I was out of work for 8 weeks .. but I worked a home the first 2 weeks back, and was not at 100% for a few months.  I'm at 10 months out now, and working as hard as ever was! (and I had a stoke at the end of my AN surgery!!!!)

funny you should ask if the doc's read this forum ... I was just wondering that myself!! .. I don't think I have seen any here! I bet there are some that read it, but dont activly post because we would be asking tons of questions!!!

funny thing about headaches .., some get them ... some dont .. some approaches are worst that others!!! .... I would get heahaches once a month or so .. and sore neck ....and the doctors all asked me if I had headaches .. I said no .. I never blamed the headaches on the AN .. even after I started reading this forum, I  just thought they were normal but guess what, since my surgery .. I've had only ONE HEADACHE .....and NO sore neck .....  so they were because of the AN !!!

[nipanddale]

brucifer-
thanks for the feedback! I, too, was planning to take classes this summer (Eastern Mich- Masters in Reading) but have to put that on hold.

Your comments REALLY put things in perspective for me! After reading about your hurricane experience, I thought, "Well, things could be a whole lot worse." Thanks, man.

joef,

Dr. Babu has mentioned a baja, and my wife and I are already planning on it. What else can you tell me about it? Is it really noticeable? Also, I have to say that if not for my beautiful, dependable, supportive wife, I would probably be an emotional wreck by now (3 days after diagnosis). She is AWESOME! She's calling clinics, doctors, getting extra copies of my MRI on cd to send for consult in Los Angeles, she found this discussion forum, which is REALLY helpful and supportive! I am blessed with a caring, loving, kind, (and cute) wife!

Thanks to all for their support and feedback!

[russ]

Hi Joef!

  Best wishes with the BAHA! I think you'll be pleased. Much more so than with a Cros style hearing aid.
  http://www.entific.com/aboutBaha.asp

  Russ

[Kathleen_Mc]

To All: I have spoken to many a doctor about these headaches. Pre-surgery when the tumor is very small it isn't supposed to cause headaches but one has to wonder if this is indeed the case given all the people with AN's who experience these. When large and displacing the brain the doctor's will say that it is the tumor causing the headaches.
As far as headaches after surgery..... I don't know how someone could not experience headaches after having thier head cracked open and I don't know how any doctor could say that it isn't from the surgery a person experiences headaches.....to those doctor's I say come here and let me crack you noggin' and let's see what you think afterwards!
Kathleen

[Pembo]

I'm a woman so my hair covers my Baha completely but it is not that noticeable, I've seen pics of men with shorter hair. You get to choose your color for the processor and they try to match it to your hair color. It is an awesome little device and you won't regret it.

[matti]

Kathleen - Well said!!!!!   

[Joef]

me with BAHA .. (short hair) and stickers (optional)

[Battyp]

Dale and Bruce,  just a thought but have you considered getting or finishing your programs online?  Walden University has online and self paced classes.  That might be a better option than the stress of attending classes, tests, etc. 

[msuscottie]

Hi Dale,

I've been corresponding a bit with your wife and I can tell you that you should be in good hands at MEI & with Dr. Pieper. I had a 3.5cm AN and I'm doing well.

I don't have BAHA, and single-sided hearing is an adjustment, but you figure it out after awile. The only thing that has been really tough is knowing which direction sound is coming from. I lost my hearing in my left ear and if someone on my left says something, I hear it through my right ear only, so it sounds like it's coming from my right side.

Wishing you the best!