Author Topic: Cranioplasty for headaches  (Read 6602 times)

salamander

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Cranioplasty for headaches
« on: July 29, 2010, 11:35:29 am »
Hi Gang,

I'm still around, just haven't been out here for awhile!  I need some help if anyone has information to share.  Are any of you aware of specific cases of a cranioplasty being done for relief of headaches after surgery? 

I am still having headaches after 19 months.  One theory - stated to the best of my non-medical ability - is that the piece of bone that was put back in my skull and covered with titanium mesh at surgery failed to establish a blood supply and disolved.  That caused the mesh to make contact with my dura.  Between the mesh and scar tissue, my headaches are caused by irritation to the dura.

One idea is that if the surgeons reopen me and insert acrylic filler into the hole between the dura and the titanium mesh where the bone would have provided protection, it might relieve the headaches.

I am not really thrilled at the prospect of opening my head for anything that is not a sure bet.  So I am trying to find out if anyone has had any experience with this.  I will be discussing with the doctors very soon and want to bring any info possible with me.

Any insights are appreciated!!

Thanks!!

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

jerseygirl

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Re: Cranioplasty for headaches
« Reply #1 on: July 29, 2010, 11:48:08 am »
Hi Samantha,

I know of nobody who had cranioplasty however when I spoke to neurosurgeons before my second surgery, my question invariably was : "what do you do to prevent headaches?" Quite a few did cranioplasty after AN surgery swearing it dramatically reduced headache incidence. I suffered from excruciating headaches for 10 years after my first surgery, so I wanted to do everything in my power to prevent them second time around. Good luck and hope you find what works for your headaches!

                         Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

FlyersFan68

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Re: Cranioplasty for headaches
« Reply #2 on: July 29, 2010, 12:10:56 pm »
I had this done during my orig. retro. surgery in 2004. It was stated on my post-op report. I never asked for it but I can honestly say that headaches were never an issue for me post surgery. However, I never suffered from headaches prior to surgery either. Did you suffer from headaches prior to surgery? Maybe cranioplasties should become the norm. Easier for mri's too. I did express a deep concern about headaches to my surgeon prior to surgery so I guess he listened.

salamander

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Re: Cranioplasty for headaches
« Reply #3 on: July 29, 2010, 02:30:09 pm »
I never had headaches prior to surgery.  I think replacing original bone was supposed to prevent surgery, but by dissolving, that plan was obviously foiled.

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

Lizard

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Re: Cranioplasty for headaches
« Reply #4 on: July 30, 2010, 08:05:32 am »
I have heard of this, but I would think that you wouldn't want to go this route until you have exhausted all your options.  What type of treatments have you tried?  Just curious because I am a post-op headache sufferer at 21 months, but have found much relief.
I'm hoping there is something out there to help you without opening up your skull again...
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

HeadCase2

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Re: Cranioplasty for headaches
« Reply #5 on: August 04, 2010, 08:40:39 am »
Hi Samantha,
  This previous thread may be of interest.

http://anausa.org/forum/index.php?topic=6883.0

Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Lizard

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Re: Cranioplasty for headaches
« Reply #6 on: August 04, 2010, 10:29:30 am »
Thanks for sharing this thread, I think I read through it when I first joined the forum, as I was considering this route.  We shall see what the future may hold for these headaches.  I like the idea of a cure vs a treatment, but who wants more surgery?
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

salamander

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Re: Cranioplasty for headaches
« Reply #7 on: August 06, 2010, 12:08:31 pm »
Thanks for some interesting reading!  I did visit with my doctor and he did not recommend proceeding with the cranioplasty.  He felt that it was a coin toss and I am not ready to go under the knife for those odds.  Back to giving it time.

As to what I have tried in the past 19 months,

CranioSacral massage - probably one of the most helpful things.
Regular massage - feels good and relaxes my body.
Chiropractic adjustments - helps with head and neck pain (helps, not eliminate)
Neurofeedback - electrodes connected to my head - I tried probably 6 sessions and didn't see any change.  Maybe I should have given it more time, but there is a limit to time and money.
Reflexology - a lady with what I think looked like crochet needles poked at my feet.  I really didn't notice anything.
Rife treatments - a combination of holding a light bulb and putting your feet in water while a computer runs a program with sound frequencies.  I tried about 6 treatments.
Accupunture - just one very brief attempt right around the surgical wound that did nothing.  I have meant to go try a more thorough treatment.
Nutritional supplements - various, all kinds, bunches.

So, I am very open to alternative treatments.    Still trying.

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

Lizard

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Re: Cranioplasty for headaches
« Reply #8 on: August 06, 2010, 09:45:18 pm »
Samantha,
Sounds similar to my list of treatments, keep at it...hopefully you will find relief! 
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