Author Topic: Headaches - 9 Months Post Craniotomy  (Read 3210 times)

Brooks56

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Headaches - 9 Months Post Craniotomy
« on: April 07, 2020, 08:15:24 am »
Last July, I (late 30s male) had my acoustic neuroma removed via retrosigmoid craniotomy because the neurosurgeon/EMT team felt they had a high chance of preserving my hearing. While they successfully removed the tumor and avoided any damage to the facial nerve, I unfortunately (and to the surprise of my surgeons given the nerve monitoring) did lose my hearing in that ear.

For the most part, my recovery went well (dizziness and very minor facial paralysis both gone about 3 - 5 weeks post op) but I experienced significant headaches once off steroids that didn't really respond to the opioid painkiller but did to the steroid packs so eventually my neurosurgeon switched me to naproxen with improved results. He said this likely meant my pain was a result of inflammation from the tissue used to close the skull incision but would go away once it becomes scar tissue. All my post-op MRIs and CTs have come back normal.

ENT recommended a pain mgmt specialist who prescribed a lidocaine cream that did nothing. Neurologists, which my PCP suggested, in the area are booked 6+ months out.

During my most recent follow up with neurosurgeon, he did express sympathy and said that this isn't typical but he has had a patient or two that has had similar experiences and that it did go away "eventually". 

My neurosurgeon and ENT came highly recommended for acoustic neuromas and I would recommend them to others so I don't have an issue with what they're saying; I'm just curious if others have had similar experiences and any feedback, suggestions, etc. for dealing with these headaches you may have? When on meds, I am now usually ok during the day but whether I take my PM dose or not, my mornings are pretty bad until that AM dose kicks in. Does sleeping/laying down have something to do with it? For example, last night at ~10pm I took my dose which should last 12 hrs. I woke up at 5am with a brutal headache and could not go back to sleep until I took another dose.

Like I said, any feedback, etc. would be appreciated. Could laying down or pillows or something be a contributing factor? I'm kind of at a loss at this point....

gbkim86

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Re: Headaches - 9 Months Post Craniotomy
« Reply #1 on: April 26, 2020, 03:39:55 pm »
You are another me.

Last July, I (late 30s male) had my acoustic neuroma removed via retrosigmoid craniotomy because the neurosurgeon/EMT team felt they had a high chance of preserving my hearing. While they successfully removed the tumor and avoided any damage to the facial nerve, I unfortunately (and to the surprise of my surgeons given the nerve monitoring) did lose my hearing in that ear.

-> I am mid 30s male and it's been 16 months since Retrosigmoid craniotomy, for ~50% possibility of saving hearing, although most people go for radiosurgery to avoid the risk of opening the skull. My tumor was 13 mm, which is quite small. In my case, I lost hearing at the surgery but it's been slowly recovered now. Hearing is not bad compare to pre OP.

For the most part, my recovery went well (dizziness and very minor facial paralysis both gone about 3 - 5 weeks post op) but I experienced significant headaches once off steroids that didn't really respond to the opioid painkiller but did to the steroid packs so eventually my neurosurgeon switched me to naproxen with improved results. He said this likely meant my pain was a result of inflammation from the tissue used to close the skull incision but would go away once it becomes scar tissue. All my post-op MRIs and CTs have come back normal.

-> I also got very bad headache as soon as off the steroid. Opioid worked only for 1~2 hours and I couldn't sleep at all due to the headache. I mixed all kinds of medicines, opioid + ibuprofen + nortriptyline, but they didn't work well and I screamed all the days. CT and MRI appeared normal, and didn't hear any opinion from the surgeon. Surgeon just said that this is not a common case and he have not seen any other case like me. I think the paper https://journals.sagepub.com/doi/10.1111/j.1468-2982.2007.01410.x describes my headache well. Intrestingly, patients with small tumors more likely have chronic headaches after RS craniotomy.
Note that My incision area already became scar tissue but I still have headache. It was temporarily gone but back when I got cold and coughed. Still sneezing and coughing make headache really bad.

ENT recommended a pain mgmt specialist who prescribed a lidocaine cream that did nothing. Neurologists, which my PCP suggested, in the area are booked 6+ months out.

During my most recent follow up with neurosurgeon, he did express sympathy and said that this isn't typical but he has had a patient or two that has had similar experiences and that it did go away "eventually".

-> Yes it will go away eventually, according to many papers on post OP headache of AN patients. However, when would it go? It could be up to 10 years.

My neurosurgeon and ENT came highly recommended for acoustic neuromas and I would recommend them to others so I don't have an issue with what they're saying; I'm just curious if others have had similar experiences and any feedback, suggestions, etc. for dealing with these headaches you may have? When on meds, I am now usually ok during the day but whether I take my PM dose or not, my mornings are pretty bad until that AM dose kicks in. Does sleeping/laying down have something to do with it? For example, last night at ~10pm I took my dose which should last 12 hrs. I woke up at 5am with a brutal headache and could not go back to sleep until I took another dose.

-> I had same issue with sleep. A year ago I noticed that the headache goes down with some mattresses. I changed the mattress and that helped. I no longer have post-sleep headache. I have headache in the morning but it is because I'm off the dose. In addition, sitting on chairs wrosen the headache significantly. I tried to avoid sitting then.
I tested myself for different ways, and my conclusion is that something is clearly wrong in the incision area and muscles around it. Hot pack on the incision area is helpful. Massage for scalp, neck, shoulder (you know that muscles extend to shoulder from the head) is also helpful. Note that when I try massage first time, I was scared of touching the incision (please consult doctor), and it actually worsens headache a lot. I had to take opioids for it. But the next day, the headache was significantly improved. I repeat this a few times in a week now. Chair and bed are definitly important. Try different mattresses in the shopping mall if possible.

Like I said, any feedback, etc. would be appreciated. Could laying down or pillows or something be a contributing factor? I'm kind of at a loss at this point....


-> I want to keep in contact with you, as you have similar symptoms. I'd like to share my experience and see what works for you and that would be definitely helpful for me too. I had to work and it might slow down recovery, so hope you can recover much earlier than me. I'm currently under 220mg x 2 of naproxen, and ~2000 mg tyrenol per day. Taking gabapentin together but not sure it works.

06/23/2018 - Diagnosed left, intracanalicular, 12.2 x 7.5 x 6.5
12/18/2018 - GTR by RS mircosurgery (Redwood City, CA)

Brooks56

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Re: Headaches - 9 Months Post Craniotomy
« Reply #2 on: May 24, 2020, 04:07:48 pm »
I'll have to look into the massages. 

I was able to get into a neurologist about a month ago who prescribed Topiramate.  Since you have to slowly ramp up to the full dosage, I have only been at the full dose for about a week but think I am only seeing minimal results.  For instance, where I had to take the Naproxen every 12 hours, I can now go 18 (24 on a good day) between doses.  But that's not the docs goal so we're giving it a couple more weeks a full dose to see.


schwa

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Re: Headaches - 9 Months Post Craniotomy
« Reply #3 on: July 28, 2020, 07:30:00 pm »
Hi! I'm checking in with the ANA discussion board for the first time in a quite a while, and I saw this thread. I am so sorry for what you're both going through -- I know how rough it is. I too had retrosigmoid surgery (at age 39), and I too have persistent headaches -- but, thankfully, they're now well controlled with medication. Sharing what's helped me in the hope that it might give you or your doctors some ideas:

1) Gabapentin/Gralise:

It's a long story, so I'll spare you the details, but through a mix-up about my current medications (aka total stroke of luck), I was put on gabapentin when I wound up in the hospital a couple of weeks after my surgery. I remained on gabapentin for a few months, until I was weaned off it for some seizure testing. The big discovery was that without gabapentin, I had non-stop crushing (non-migraine) headaches. On gabapentin, I still experienced headaches, but they were far less severe. Once I returned to work and had to use my brain, gabapentin 3x/day no longer cut it, so my neurologist increased it to 4x/day. That helped but I wasn't great at keeping a steady pill schedule because 4x/day broke the breakfast/lunch/dinner routine. My neurologist recommended seeking out a true headache specialist. I told her about the pain I experienced in the troughs between doses, and she suggested Gralise, which is a once-daily, extended-release form of gabapentin. (She had actually never prescribed it before because it's so much more expensive than regular gabapentin, but luckily my insurance plus a manufacturer's coupon gets it down to about $25/month.)

And Gralise is, for me, the golden ticket. I take 900mg once a day around dinner time, and it allows me to get out of bed and function in the morning instead of having to shuffle around in pain until the first dose of gabapentin kicks in. Unfortunately, I experience a multihour trough before each day's dose, so my doctor ended up prescribing one 300mg dose of regular gabapentin as well, to be taken in the afternoon. And that combination is great for me. (It confuses pharmacists, though -- they always ask if I'm really and truly taking two different forms of gabapentin.) I still have breakthrough headaches, but not nearly as often. This is not to say that this funny combo would be right for anyone else -- it just happens to do the trick for me. Gabapentin/Gralise definitely make me tired, but for me it's easier to live with that than the headaches. I don't know if your headaches are migraines -- mine aren't, and I know migraines are a whole different situation.

2) Neck physical therapy

When I first saw the headache specialist, she immediately noticed that I was holding my head in a funny way -- somewhat off my spine, both tilted and twisted, so my muscles had to do the work of holding my head up. She said this is fairly common with retrosigmoid surgery, due to the awkward position the head is in during surgery -- apparently it can really mess your neck muscles up. I was aware after surgery that my head was always cocked to the side (like a curious dog), and I thought I'd gotten it back to normal, but it turns out I was a terrible judge of normal posture. She prescribed neck physical therapy, and after a couple of months of PT my head was back in its proper place. They also helped me understand how to hold my head while reading, which had become a very painful activity.

3) Massage

Like gbkim86, I regularly got massages pre-COVID, focusing on tightness in my back, shoulders, neck, and scalp. I definitely see a period of relief from that, until the tension starts creeping back in. At first I got them every 1-2 weeks, but eventually I was able to switch to every 3-4 weeks. Due to COVID I haven't had any in months. I was terrified of what I'd face as a result, but with frequent neck exercise it hasn't been so bad. (I also attribute some of that to no longer having to take NYC subways every day during rush hour, when you're almost always forced into some kind of awkward posture.)


All that said, please don't let my 4+ years of headaches scare you! I had several complicating factors -- bacterial meningitis, which necessitated a second surgery to remove the titanium and wash out my brain, which then required removing the infected skin around the incision and pulling my scalp even more tightly in order to re-stitch me up. I've heard that not having a barrier between the brain's dura and the muscle over the skull can lead to headache-causing adhesions, and now I have an extra-tight scalp too. So who knows.

Don't give up on trying to get in with a good neurologist, especially one with a headache specialty! Even if you have to take an appointment many months in the future, you may also be able to be put on the waiting list in case of cancellations.

Good luck, both of you!
March 2016: Left 1.1cm AN diagnosed (age 39).
May 2016: Retrosigmoid @ USC Keck.
June 2016: Surgical site infection, bacterial meningitis & seizure. Surgery to remove titanium plate and wash out brain @ Jersey City Medical Center.
Now: Healthy with Rx-controlled headaches. Often tired, forgetful.