botox injections for post craniotomy pain

[spitfire2]

I had a left temporal lobectomy for refractory epilepsy and a brain tumor, and have had chronic pain from the craniotomy for the past three and a half years.   Since more people on this part of the website have experience with craniotomy surgery than on other sections (other than the epilepsy section), I figured I'd post my question here.  Has anyone tried botox injections to address such pain?  I have read mixed reviews...some people got headaches from the injections, one person had a seizure, and others were helped.  I would die to get some help for this horrible pressure/tightness around my forehead, on top of my head, and around my eyes, and around the incision from the craniotomy.  But I worry about seizures...the last thing I want is to trigger a seizure, considering my medical history, and liklihood of recurring seizures.  Has anyone had any experience with botox to address their post craniotomy pain??  Any help is appreciated....I am so tired of pain....Thanks much

[rumpled]

Your question really belongs under a pain forum than here... I really don't have any ideas. Sorry.

[logibeaver]

After ten yrs of crainiotomy pain and lots of oxycontin the drs decided to  inject his head with botox one day. He was deathly ill for two months with off the charts blood work  and has not recovered much after one year. the pain is still present and is debilitating.  No help  with pain from drs now-just more and different anti- depressant drugs. He says the oxy helps him to think. He had a huge subdural hematoma and came within minutes of dying. The brain was damaged but intellect pretty well intact.  What to do now????

[spitfire2]

Hi there,
I happened to see your comment on the post, and I thought I might try and help.  I actually initiated the question back in 2011.  As I mentioned, I've been having issues (still do) with chronic pain from my brain surgery.  But what I learned really recently is that my pain (a squeezing, tightness, boring, and burning chronic pain) might be what is called central pain syndrome and atypical facial pain.  Does your husband have these symptoms? (With the exception of the some facial burning sensations, these symptoms started 6 months after my surgery, thus the idea that my brain has too much excitatory activity and not enough inhibitory activity to "balance" things out.  This problem is actually due to scarring from surgery itself.  Some people who have had strokes also get symptoms 6 months after the stroke due to scarring)  If you husband has such symptoms, botox will not help, nor will any of the typical pain meds offered.  They might actualyl make the symptoms worse.  Seizure meds like neurontin are made to increase the inhibitory activity in the brain to balance things out and calm the brain.  That may help with my squeezing pain, and may help your husband as well.  Benzodiazepams like temazepam (a sleeping pill) also help me.  As far as the facial pain I have (and maybe the tightness/squeezing as well,) I am considering what is called the motor cortex stimulator...my neurosurgeon actually suggested it.  It may help as well....check that out too.  Again, botox did nothing to help, so I don't really recommend it.  

Good luck, I hope some of this helps you.
Spitfire2

[kate610]

I know I am SO late to this party, but I am wondering if you ever tried the botox?
My husband has a very similar story and symptoms, but the doctors have never even tried to manage his headaches. They just give him narcotics. He was also on Elavil a couple years ago, and it was pretty terrible. It changed his personality completely.

[rumpled]

Don't worry so much and I was just joshing ya! Everyone uses dopamax! I heard it from someone else! That is the problem with text is you can't get sub texts...

I tried fentanyl once - and while I felt no pain (which was rather nice) I also could not get out of bed, eat or do anything else... I used to be fair skinned until my ACTH sky rocketed...

I don't like my pain guy either - he gave me two pain meds together that were contra-indicated and the side effect was death... oooops - glad I went to the pharmacist and asked which I typically do since I take so many freaking meds. The place does not understand my conditions at all - I listed all my surgeries like pitiutary, adrenal etc. and the girl looks at me and says anything like appendix or gall bladder? Uh, no - so my records there say "none" since they don't understand the surgeries I had!

My doc recommended him and oh - he is top doc according to a magazine!

[spitfire2]

The "to" a supposed to say "rumpled"  
I must be half dead today...I think one thing and seem to type another!

[spitfire2]

Oops! meant cranial "massage," not "message".  Little slip up!

[spitfire2]

Yes, you are both right about forums...most people who are happy do not usually post, but once in a while one may luck out a little.  Kind of like a mouse overpowering gourilla possibility, you know what I mean.  I happened to post my question regarding botox on another web site (name slips my mind at the moment) and two days later got some negative responses, but also one positive response, and the kind woman who sent the answer had to really "man her guns" and defend her answer against all kinds criticism received from other viewers.  They sure pounded her!
Sorry for my misunderstanding about dopomax!  I'll make sure I give Rumpled credit next time I use the phrase :)  

Fentanyl can be tricky....I tried to up the dose, but I tend to get a terrible rash, which is not an uncommon side effect for me, even on high doses of many seizure meds.  Was so frustrating with oxycontin--helped somewhat, but the rashes got so bad that I was switched over to fentanyl by my anesthesiologist.  Guess it must be my Swedish backround! (very fair skinned).  Fentanyl also has the (alas) lovely constipation side effect, more so than other meds I've been on.  Seems to last forever.  I need not say more~.....I'm sure you know what I mean!   Fentanyl helps a little more than oxycontin, in any case, but both are such a pain in the a** to fill.  Have to get a ride into the city (Chicago), two hours each way, for a slip of paper which only gives me a refill for one month.  And I don't even drive!  Wish it could be called in.  Ugh!!

I am starting to try elavil, and will let you guys know if it helps me.  I am also doing some cranial message, at least as much as medicare will allow, and will see if anything helps.  Am also debating about which pain center I should go....am not happy with my current anesthesiologist (and I think he's sick of me!).  Well, best to you  both, and to all viewers.

Oh, horselip: how is celexa working for you?  I hope it is helping!

[horselip]

Oh yeah rumpled you get credit for the term dopamax, I got it from you :)
And yes you are so right about forums..people who are well are not sitting around posting on sick people forums!!! So it is good to keep that perspective when we read things here on Medhelp.

Never tried Elavil, Spitfire. I am on an SSRI though: Celexa. Usually a tricyclic or SSRI helps chronic pain patients, from what I heard.With the fentanyl, it may be that you are not on a high enough dose? Or there's a need to add a nerve med like Neurontin, Lyrica or Topamax' or a SSRI or Tricyclic might help: or a muscle relaxant...the possibilities are endless really.
Then you add in the epilepsy and whoo hoo, NOT :)
Horselip

PS Topamax has been the best nerve med for me ever! It really helps my other meds to work better if that makes sense? I actually just went back onto it a few days ago and the break from it made me realize the benefit. This is under my Neuro's very watchful eye.

[rumpled]

Re the internet - you have to understand that happy people are not out there posting. They are out there living their live. So the boards and all are skewed against happiness - so think about that when you are looking for information.

Not tried elavil - my mom used to take that. As for just trying botox - it lasts pretty long to just try it... weeee!

Hey hey hey! I said dopamax too! :)
No news yet...

[spitfire2]

Thanks to everyone for your information: I actually have not been able to access the internet for almost a week, since my dish was damaged in a bad storm here.  But all is okay now.  Yes, rumpled, you do sound like a walking pdr!  If you have any questions about a med, just let me know.  A member of my family is a physician, and I do have access to the most recent pdr.  Any question about an anticonvulsant you haven't tried yet, maybe I can help there as well.  Well, both you and my friend horselip are only a handful of people I know who have had positive results/experiences w/ topamax (or yes, as horselip mentions, dopamax)  It's a pretty nasty drug....but most epilepsy meds are.  Neurontin, phenobarb, and dilantin are really poisons, but what can one do?  

Don't know what to do about the botox......some people have found it helpful, others haven't.  Like most things on the internet, you can read all kinds of of seemingly hellish stories.  I feel like I'm willing to try anything, but don't want to make things worse.  I don't really have migraines (although I can occaisionally have a migraine on top of this terrible  tightness/pressure I constantly have), and have not been able to pinpoint which nerves are causing my chronic post craniotomy pain.  Probably from nerve damage and perhaps some muscle, but I don't know for sure.  Thus, I don't know for sure how much botox would help...who knows?  One neurosurgeon I asked on "justask.com" recommended botox (what do I have to lose, he said), my neurologist is not too crazy about it, and the anesthesiologist doesn't think it will help, but you know how it is with many docs--they really don't know.  Lidocaine injections never really helped, so I don't know about botox.  I'm willing to try, I guess, but I just hope I don't have some crazy side effects. Probably not.  Well, cheers.....
By the way, has anyone tried elavil?  I wonder if it can be taken with a med like fentanyl (am on fentanyl now, not a riproaring success, but a little better than some other meds I've tried.)  Any good news?  Thanks
spitfire2

[horselip]

Hi again-
Botox has been brought up with too. Again they need to get it into the right nerve(s) though. If you've had any success with lidocaine injections, then botox would def be worth thinking about.

Topamax is a med that worked really well for me too. Better than Lamictal. It made it so that I could get away with less narcotic meds. I'm off it right now though, because of the leak issue. Topamax lowers the csf. The side effect for me is that it affects my cognitive abilities, slows down my thinking and short term memory some..thus it's nickname "dopamax".

I'm ok being dumber if it helps my pain.

later
Horselip

[rumpled]

I tried the fetanyl and it knocked me on my... I also tried gabepentin, keppra and other meds - cripes at times I feel like a walking pdr.  Topamax is a super nasty drug for most but for me - it has been ok - in that the benefits outweigh the drawbacks and at this point I have been on it for years. I went up very gradually as well and used the lowest dose possible that helped for years until I had to up it to the max.

I know before they tried botox on my FIL they used an EMG to make sure they got the right nerve - but that was for tremors - but you could ask for something like that to make sure if the doc is amenable.

I don't have to tell you how rotten pain is - I am going to pain mgmt now and they are not helping so it is very frustrating. I use acupuncture but it is not enough anymore.

[spitfire2]

Thanks much for your information--is appreciated.  There seems to be more to botox injections than I've realized.  One doc I saw three years ago suggested botox, but something told me not to do it, and I passed it by.  I think I will talk to some docs and other people first.  I just don't know what to do.  None of the injections I have tried, nor cryoprobe procedures (or neurostimulator implant) have helped with this awful thightness and pain I feel, though (although cryoprobe helped one of the nerves just under my eye which was cut during the cranitomy)  My anesthesiologist doesn't think it will help, but I feel no one has really hit the "correct" nerve(s) regarding this pressure/tightness feeling, which sometimes feels worse if I'm anxious or tired (not to sound like a psychopath or something.)  I feel so stuck and tired of it all.  I had terrible migraines for the first 6 months post op--was never a headache person before the surgery--and then this horrible pressure pain started suddenly one day, almost exactly 6 months after surgery....I rarely have migraines anymore, but constantly deal with this pressure.  Can be hell.  Feel like I'll try anything, but I don't want to make matters worse.

I've read around about other people using topomax for pain.  I will most likely remain on seizures meds for the rest of my years (I'm 31) despite the brain surgery (my epilepsy was refractory for many years), due to the auras I still have.  I know anticonvulsants quite well...in the epilepsy community, we refer to them as "necessary poisons."  Topomax can cause multiple unpleasant side effects.  Despite all that, do you feel it helps you with pain?  Although I've tried multiple meds over the yrs, I never tried topomax, but have been wondering if it would help.  I'm on lamictal XR currently, and could probably use topomax as an adjunct med, but I'm not crzy about the idea.  Am on fentanyl 25 mcg, somewhat helpful, but not edxtremely effective.  Thanks, and good luck.  

[rumpled]

I have not tried it... but I had terrible trigeminal neuralgia post a second surgery to resolve an infection.
My ENT wanted to see how it would effect me so he injected me with lidocaine first which would last only a short while rather than the botox which would last a long time.

The reason why is that people have nerves go in different areas - like my dentist knows that my dental nerves are not in the usual place, my facial nerves are a bit off. So the ENT put in the lidocaine and it made my eye numb - making me not a candidate for botox in case I got something in my eye.

My point is that anatomy may play a role in the success of the botox. I ended up using dopamax I mean topamax and heat or ice.