Author Topic: daily headaches 8 mo post retrosigmoid surgery  (Read 3031 times)

rpriggins

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daily headaches 8 mo post retrosigmoid surgery
« on: January 18, 2017, 06:27:28 pm »
I am 8 months post surgery for a 3.5cm vestibular schwannoma... a type of AN.  The headaches have been going on for the past 6 months.  I am taking gabapentin and nortriptyline for the daily headaches and getting little to no relief.  When they become mind splitting, I take sumatriptan which has provided relief in varying timeframes (one to four hours).  Has anyone experienced something similar and come up with a medication regimen that has been successful?
2.3 x 3.5 cm removed 5/2017
retrosigmoid approach by
Dr. Lee  Univ of Pa
post op chronic headaches

hasovschib

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Re: daily headaches 8 mo post retrosigmoid surgery
« Reply #1 on: January 24, 2017, 02:22:41 pm »
I had/have the same problem after my surgery... i am almost 2 years after the surgery and still get headaches... Meds did not work for me so i stopped taking them... i only take over the counter stuff.
I realised that my headaches became less often after i started work.
Maybe sitting all day thinking "omg here they come" "here  come the headaches" was making them daily.

Another thing that made my headaches less frequent was the way i sleep.  try to sleep with your head not to elevated and also sleep so your head will face the same direction as your body . so your neck will not be streched, turned or tilted when you sleep

i used to sleep on my stomach with my head tilted to the side. that was no good. A good bed and a good sleeping position did wonders for me.

Hope this helps, sry for my english.

rpriggins

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Re: daily headaches 8 mo post retrosigmoid surgery
« Reply #2 on: January 29, 2017, 08:52:08 pm »
Your English is great.   Thanks for the sleeping info.  I sleep on my stomach with my head tilted. I find I wake up through the night, many times with a headache.  So I will give that a try.  It has become obvious that this is not going away anytime soon.  Except for the sumatriptan, the meds do nothing.  I think I am also going to try getting myself out of stressful situations.  That seems to be another trigger

thnx
2.3 x 3.5 cm removed 5/2017
retrosigmoid approach by
Dr. Lee  Univ of Pa
post op chronic headaches

LakeErie

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Re: daily headaches 8 mo post retrosigmoid surgery
« Reply #3 on: January 30, 2017, 02:38:21 pm »
retrosig approaches have been identified as possibly dissecting either occipital nerve which causes headaches
A Dr Ducich at Georgetown had success removing the damaged occipital nerve in treating headaches
Dr Ducich has since moved to CA, I believe he has addressed the national medical AN conventions that are every other year
My own surgeon has a paper published many years ago about his technique of placing the craniotomy to avoid the superior and inferior occipital nerves and how it avoids headaches in his patients, but he also specialized in minimally invasive micro surgery (note not endoscopic ) so his skull openings are dime to quarter size. Joung Lee MD now in Burbank CA.
link for an article on his Simplified Retrosigmoid for various conditions of the C-P Angle
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1151675/
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

jimh

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Re: daily headaches 8 mo post retrosigmoid surgery
« Reply #4 on: April 26, 2017, 02:28:31 pm »
Just found this forum! I am now at just over 10 months post-op for retrosig removal of AN, ~3cm. Immediately after surgery, I was on Decadron (steriod therapy). I had no headaches whatsoever while on steroids. Since the steroid taper, however, I have had severe headaches. My doctor has put me on Indomethacin (Indocin) a NSAID that some people take long-term for arthritis. I take 50mg 3x daily, basically every 8 hours, with food. If I am very late or miss a dose of this the headache is still incredibly bad! I have described it as an ever present headache that needs the anti-inflam. meds. This works for me, but barely, and I am totally relying on the Indocin. It's also depressing since the dr. keeps telling me it will get better over time and it hasn't. I also find that caffeine helps with this as well.
Diagnosed with AN ~3cm 4/1/2016
Retrosigmoid removal surgery 6/15/2016

 


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