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Author Topic: Finally a new Dr.-appointment 3/29  (Read 5907 times)

Lizard

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Finally a new Dr.-appointment 3/29
« on: March 26, 2010, 06:33:12 pm »
So I took my treatment into my own hands and went back to see my headache specialist and demanded they see me.  My appointment was today and I went through all my issues.  How I feel like I am merely "surviving", just floating around unable to move on and forward with my life.  I also don't want to take my current medication forever, one because I would like to have kids as soon as possible and because I only have one kidney and I don't want the indocin to destroy it.  I would be devastated if I could no longer have children because of these meds.  Long story short, they recommend a pain specialist that works with a neurosurgery group.  Its so uplifting and hopefully the appointment goes well on Monday. 
I want to thank all of you who have given me advice when dealing with my Dr's.  It empowering to take my treatment into my own hands!

What a relief....sigh...

Liz
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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

Jim Scott

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Re: Finally a new Dr.-appointment 3/29
« Reply #1 on: March 27, 2010, 12:11:26 pm »
Quote from: Lizard on March 26, 2010, 06:33:12 pm
It empowering to take my treatment into my own hands!  What a relief....sigh...

Liz ~

Congratulations on becoming assertively pro-active with your medical treatment!  I wish you a very productive doctor consult on Monday and I'm delighted to learn that the forums have been beneficial to you. 

Jim
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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.

Captain Deb

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Re: Finally a new Dr.-appointment 3/29
« Reply #2 on: March 28, 2010, 03:23:33 pm »
You go girl!!  Sometimes you have to be someone's pain in the ass to get rid of the pain in your head!!

Capt Deb
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"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
Captain & Designated Driver of the PBW

Lizard

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Re: Finally a new Dr.-appointment 3/29
« Reply #3 on: March 28, 2010, 07:42:14 pm »
Thanks to both of you and so true!
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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

staypoz

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Re: Finally a new Dr.-appointment 3/29
« Reply #4 on: March 29, 2010, 12:18:10 pm »
I hope your appointment goes well.  Sometimes it just helps to feel you have some control and aren't at the mercy of your pain and doctors who don't listen. 

Like yourself, I have only one kidney and worry about the long-term effects of the NSAIDs I have been taking to take the edge off my pain.  One appointment I never miss is the one to check my kidney function.  I hope your docs are monitoring you too.   

staypoz
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Lizard

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Re: Finally a new Dr.-appointment 3/29
« Reply #5 on: March 29, 2010, 04:11:05 pm »
Quote from: staypoz on March 29, 2010, 12:18:10 pm
Like yourself, I have only one kidney and worry about the long-term effects of the NSAIDs I have been taking to take the edge off my pain.  One appointment I never miss is the one to check my kidney function.  I hope your docs are monitoring you too.   

staypoz


Yes they most certainly are checking my kidney function!  Still worried about the long-term affects.
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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

GRACE1

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Re: Finally a new Dr.-appointment 3/29
« Reply #6 on: March 30, 2010, 08:04:13 am »
It seems that having only 1 kidney is popular around here.  It's bad enough having to deal with an AN, but also having to worry about doing damage to that precious kidney with procedures and medication is a constant worry - especially the older I get.

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Lizard

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Re: Finally a new Dr.-appointment 3/29
« Reply #7 on: March 30, 2010, 04:57:23 pm »
Grace agreed, it worrisome...and it always makes me think of Steel Magnolias...tear  :(
But God I love that movie!
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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

GRACE1

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Re: Finally a new Dr.-appointment 3/29
« Reply #8 on: March 31, 2010, 07:13:53 am »
So do I !!

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

staypoz

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Re: Finally a new Dr.-appointment 3/29
« Reply #9 on: March 31, 2010, 09:11:40 am »
Clearly, we are an exclusive club!   :)

staypoz

   
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Lizard

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Re: Finally a new Dr.-appointment 3/29
« Reply #10 on: March 31, 2010, 09:13:27 am »
We sure do  ;D
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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

Mei Mei

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Re: Finally a new Dr.-appointment 3/29
« Reply #11 on: April 16, 2010, 01:49:35 pm »
Hi there all of you.    I really feel for you.   I read about sacral cranial massage on the other thread that is done by an osteopath.   Have any of you tried that?   They go once a month and it is reimburseable by insurance.   The organs we have are so prescious and we have to stay conservative with the meds. too.   I hate when that ugly headache creeps back again and I have to grab for that pill bottle once again.

Sincerely,
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Lizard

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Re: Finally a new Dr.-appointment 3/29
« Reply #12 on: April 16, 2010, 03:39:29 pm »
Mei Mei,
I know it really can be scary, and putting all these "toxin" in your body just makes things have to work harder.
As far as the cranial sacral therapy, I did do some when I was seeing a chiropractor, but I have since stopped seeing them.  It was too much $ and I only saw little improvement.

Give it a shot, they even say acupuncture can help relieve the pain cycle as well.

Take care,
Liz
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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
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