Author Topic: Headaches continue after removal of AN in 7/25 around every 6-8 hours  (Read 512 times)

sbiffoni

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Hello,
This is my first post.  Wasn't ready to join in until now.
I had an acoustic neuroma removed on 7/16/26.  It was 2cm with a "tail" pressing on my brainstem so it had to be removed.  The surgery was 8 hours long.  It required a craniotomy/suboccipital level and also a decompression internally along my right auditory canal.

The post op. pain took months to settle down.  I am now having pain along the back of my neck that extends into my ears, sometimes up to the top of my head.  Thankfully Tylenol takes it away within 10 minutes, otherwise it would go up to a 10/10 from the 7-8/10 it can be.

Just weaning off of 900 mg a day fo gabipentin as it wasn't helping as I still need Tylenol.  Next up is Botox every 12 weeks.

I do use a CBC cream that helps (but smells).  I attend PT.  Took a while to find the best one.

I can drive long distances now to visit my kids.  Attend mellow concerts and Broadway show.  Ride my stationary bike and do light stretches and stregthening as the PT prescribes.  So I have to count my blessings.  Can't swim laps yet.  Gave up drinking wine (for now til I am headache free. lol).

My surgeon says it can take 3 years to be at my best.  1 year down, 2 to go.  Thinking if the Botox doesn't work to take a break from extra medicine and just use Tylenol.  Just hoping Tylenol doesn't mess up my liver as I have been taking it every day, 3 times a day at a 1000mg each time for a year.

I'm 66 and retired.  If I was still working when I had my surgery I would have had to file for disability.

Anyone else have a similar path?

Thanks
« Last Edit: October 16, 2026, 11:41:47 AM by sbiffoni »

Mark F.

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Re: Headaches continue after removal of AN in 7/25 around every 6-8 hours
« Reply #1 on: October 16, 2026, 03:14:11 PM »
My path is a little different but I might be able to give you a little insight.  I had surgery on 5/13/2025.  Before my surgery I had a headache that never went away for 2 years.   I found then that Tylenol did nothing for it but Ibuprofen took the edge off.  It still didn't take it away, but it made it tolerable.  Fast forward to post surgery, I had a year that was amazing, zero headaches at all, then one night from out of nowhere came one of the worst headaches I have ever had in my life.  If it wouldn't have been 3:00 in the morning I would have asked someone to take me to the hospital, then I remembered Ibuprofen took the edge off before so I took 3, amazingly in 20 minutes the headache was gone.  Not just reduced but gone.  Over the next couple days the headaches returned pretty regularly, but each time the ibuprofen took them away.  I was up to 9 ibuprofen a day everyday before I finally called my neurologist, who referred me to a "headache clinic".  The neurologist at the headache clinic determined that it was most likely either scar tissue or that nerve was nicked during surgery and was now healing.  She put me on Lyrica because she was not a fan of gabapentin.  We are currently trying to find the proper dose a little at time.  I am currently on 200mg of Lyrica and the severe headaches are gone,  I do still get minor headaches almost daily but they are usually not bad enough to warrant taking the ibuprofen and they go away on their own.  And about once a week I get one severe enough  to reach for the ibuprofen, which still works just as quickly as before.  I suspect my dosage will be increased next time like talk to her as it has been the last several time.   My neurologist said the ibuprofen works better for me than Tylenol because the headaches are more inflammation related, and Ibuprofen is more geared towards that type of pain than Tylenol. 

Now what's really interesting is I have a good friend who has fibromyalgia, he was accidentally prescribed Lyrica and gabapentin at the same time and he was pain free for the first time in years on the combination of the two.  When his dr. found out, and he told the Dr. that it worked great, his Dr. started prescribing both to other patients who were not responding to just one of them, and it works for them too.   So if your Dr. is willing to give it a shot, see if they will give you both lyrica and gabapentin for a trial period.

sbiffoni

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Re: Headaches continue after removal of AN in 7/25 around every 6-8 hours
« Reply #2 on: October 23, 2026, 01:37:53 PM »
Hi Mark,

Thanks for your response. 

I had a blot clot after my surgery that went to my lungs.  I wasn't allowed to take anti-inflammatories after until I was off of the blood thinners.  That was 7 months post op.  Since the Tylenol helps take away the headaches I figured to stay with them as Motrin can be tough on your stomach.

I'm scheduled for Botox next month.  I'll see if my neurologist can let me try lyrica.  Gabapentin didn't help at all.  I didn't like the brainfog it caused so a combo of the two would be a little much.

Sharon