Author Topic: Occiptal Nerve Surgery - 1 Year Update  (Read 6370 times)

Janet

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Occiptal Nerve Surgery - 1 Year Update
« on: May 02, 2010, 07:59:31 pm »
Hi Everyone. 

It has been a year since my last occipital nerve surgery.  I'd say that I have improved about 90%.  I don't think about headaches very often and probably that is why I haven't been a part of this forum for awhile. I still get some neck stiffness. Bright light can trigger a migraine. Tylenol or aspirin takes care of the neck and Maxalt prevents a migraine from evolving. I can't remember the last time I actually had a full blown migraine.

My activity level has increase dramatically.  I've done some long photoshoots and have been on a couple of hikes recently without provoking head pain. I chase after my grandkids daily. (I have 14 and they all live nearby.)

I have come a long way since the days of severe daily headaches and head pain. This forum helped me so much through my trial and error process towards relief. You are the best!  I wish you all well.

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Lizard

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #1 on: May 03, 2010, 10:37:27 am »
Janet,
Wow that's great to hear, and I'm sure you are just elated to be spending time with the 14 grandkids. Its amazing and to me adds so much hope to my current position.  Thanks for sharing, and just a question, did you have occipital nerve blocks prior to the surgery?  I 've been seeing much improvement from them, ut I'm afraid they will not continue to work?  I always hope for the best, but in the back of my mind I am fearing the worst.

I'll look up your prior threads, pm me if you have some good info you might want to share.

Head pain is torture and I'm so happy you have broken the pain cycle and are at 90%!!!!  :)
Congrats!
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

Janet

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Re: Occipital Nerve Surgery - 1 Year Update
« Reply #2 on: May 03, 2010, 05:18:59 pm »
I had 2 years of Botox treatments every 3 months and 2 occipital nerve blocks.  They both helped to quiet the nerves and muscles. The blocks were to identify the source of the pain.
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Lizard

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #3 on: May 03, 2010, 08:03:19 pm »
Janet,
Thanks, I recently had 4 blocks in a 4 week span and I've been feeling so much, better.  The Dr did tell me that it was a diagnostic tool as well, so I think surgery might be his next step.  I haven't tried the botox, but I'm sure it would be helpful as well, just really expensive  :(
Thanks so much for the info...hopefully surgery will help me too...not that I want to endure another surgery, but if it helps to 90% perhaps it would with me too.

Take care!
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

Larry

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #4 on: May 03, 2010, 10:15:57 pm »
Janet,

Great to hear from you and thx for sharing your update. I must say that I have been tempted but i still can't face the thought of surgery again.

I'm so pleased that its helped you.

regards from down under

Laz

p.s - Seattle by night hangs on my study wall - a constant reminder of that fantastic city that has a wonderful and friendly bunch of people (the AN gang).


2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

sgerrard

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #5 on: May 03, 2010, 10:20:19 pm »
Hi Janet,

Thanks for the update. I had no idea you had 14 grand children. That is quite a troop! I trust you are busy doing your photography and living the good life. It is great to hear that the headache issue is so well under control now.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Larry

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #6 on: May 03, 2010, 10:26:08 pm »
Thx for reminding me Steve,

For those of you that have been fortunate to have met Janet - you would roll over on the ground with laughter coz of the joke she has told you when she tells you how many grandkids she has. Janet can get away as a Gen Y'er.

i still reckon you are fibbing young lady.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

staypoz

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #7 on: May 04, 2010, 12:53:18 pm »
Janet, I'm so glad to hear you are doing well and that the surgery was successful for you.  I have not changed my mind about having surgery with Dr. Ducic, but my doctor gave me some info on nerve stimulators and I am thinking about exploring that a little further.  There have been some recent (albeit small) studies on their use for headaches. 

Stay well!!!

staypoz

Janet

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #8 on: May 04, 2010, 02:32:52 pm »
Thanks all for you well wishes!

Lizard ~  Botox made the muscles surrounding the nerve unable to tighten up but didn't stop the nerve from firing. The Indomethacin seemed to quiet the nerve down. It has always taken a combination of things to control the headaches for me. I received 18 months of free Botox because I was in a study. My insurance paid 100% after the study was over because the study showed it helped.

Laz ~  Thanks... I could use a compliment every now and then! By the end of August I will have 16 grandkids. So nice to hear from you!

Staypoz ~ I thought that if this didn't help, I would look into the nerve stimulators. Keep us posted.

Sgerrard ~ Thanks... I am trying to insert a photo of all the g-kids (this year's Christmas card), but can't figure it out.

Janet


Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Jim Scott

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Re: Occiptal Nerve Surgery - 1 Year Update
« Reply #9 on: May 04, 2010, 02:43:34 pm »
Hi, Janet ~

Thanks so much for that fabulous one-year update.  It's extremely encouraging to read positive posts from folks like you that struggled with a specific AN-related problem (headaches, in your case) and were able to conquer it, by whatever means necessary.  Congratulations - and may your future remain essentially headache free!  :)

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.