Author Topic: Thank you, and help talking to my Dr's  (Read 4125 times)

Lizard

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Thank you, and help talking to my Dr's
« on: March 06, 2010, 10:06:04 am »
I've been dealing with these headaches for 15 months now and no doctors have been able to really help.  I am "surviving" on indocin, but it really just takes the edge off.  I read the article posted by Capt Deb and this explains my pain, thank you so much for posting. Looks like you're the local headache guru.  Now I just have to convince my doc's that this is what I have.  Any suggestions?  I could present the article, but not sure what they'll say.  Do I go into it with, hey I think we might be able to work this from another angle?  It seems that they all just want to pacify me and think one just said that I don't seem as desperate, yea?  What?  Also, this indocin is not a good med for me because I only have one kidney and its just so hard on the body...I want off it! 

Thanks and please help!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Kaybo

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Re: Thank you, and help talking to my Dr's
« Reply #1 on: March 06, 2010, 12:43:18 pm »
Hi Liz and WELCOME~
I don't have headaches (I had them REALLY bad BEFORE surgery) but I just wanted to welcome you here.  If anyone can help you, it is Capt'n Deb and the other people here.  Hope you can find some answers & relief soon!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: Thank you, and help talking to my Dr's
« Reply #2 on: March 06, 2010, 02:48:25 pm »
Hi, Liz -and welcome to the ANA Discussion forums. 

I'm sorry to learn of your ongoing headache issues and the fact that your doctors seem to just be placating you and not seriously trying to find the actual cause of the headaches.  Unfortunately, this approach to headaches is not uncommon with some physicians.  I don't know if your doctors include a pain management specialist but if not, I would seek one out.  They tend to be more sympathetic and helpful for folks that are struggling with intractable headaches and they don't always rely on medications. 

As for confronting your doctor(s), I would simply tell them that you want to explore another possible source of your headaches.  If they're amenable to that, explain how you wish to proceed.  If they try to refute or dismiss your wishes, find another doctor.  Your doctor is not a god or your boss.  When a physician isn't helping a patient and the patient is trying to be pro-active in healing themselves, the doctor should want to cooperate, not obstruct.  This is why you may have to say good-bye to your present doctors, should they fail to take you seriously on trying another approach to quelling your headaches.  Of course, one cannot presume anything and I trust your doctor(s) will be helpful in working with you on another approach to ridding you of your insistent, near-debilitating headaches. 

I wish you much success as you try to move forward with solving your headache issues and yes, Captain Deb is our 'local headache guru'.  Deb's willingness to share her years-long experience dealing with headaches and sometimes recalcitrant or simply disinterested doctors (as well as some good doctors) is a boon to other AN patients that suffer with unrelenting headaches.  We're honored by her presence and buoyed by her unflagging sense of humor.  I hope her suggestions and comments can help you - and I trust that they will. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

epc1970

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Re: Thank you, and help talking to my Dr's
« Reply #3 on: March 06, 2010, 04:53:32 pm »
Hi Liz
I think that Jim had a good point that you may need to say goodbye to your current docs if they are not willing to make you a partner in your care and listen to your suggestions. It is hard but not impossible to find a doc that is not resistant to educated suggestions or new thoughts on treatment. Ideally, you should have a relationship with your doc where you are heard and respected as part of the process. I went thru a couple of docs until I found one that works with me and does not just write me a script and send me on my way. I bring him material to read and we have a dialog on what my current headache treatments are and how to make it better. I know for me, feeling like I am being heard and am an active participant in my care is important to me and it sounds like it is to you as well. Good luck Liz-I know the headache business is rough and finding treatment that works can take time.
Erin

Lizard

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Re: Thank you, and help talking to my Dr's
« Reply #4 on: March 07, 2010, 04:48:59 pm »
Thanks guys, I am calling my headache specialist tomorrow and making them see me this week.  I've also been through multiple Docs since the surgery and I will drop them in a second.  I've actually got a call in with a pain management multispecialty group, they're checking on insurance stuff.  They have it all, so keep em crossed that most or at least some of the treatments are cover.  As you all know this stuff can really add up!
I'll keep you posted,
Liz

PS I really am so grateful for this forum and all of you!  ;D
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

epc1970

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Re: Thank you, and help talking to my Dr's
« Reply #5 on: March 07, 2010, 04:55:26 pm »
Liz
A pain mgt group sounds like a great plan. Good for you for being proactive! I hope that it is helpful and most improtantly that you find a Dr that listens to you and makes you a part of the team!
Erin

Captain Deb

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Re: Thank you, and help talking to my Dr's
« Reply #6 on: March 13, 2010, 07:21:59 pm »
I would not hesitate to discuss anything you find with your doc--God knows I have bombarded my neurologist with enough of my own research to fill a small library.  I even gave mine CDs of all the headache clinics I have been to at the symposiums.  Liz, can you tell me which article you are referring to?  I have posted dozens of them in the past few years. 

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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