post craniotomy pain

[spitfire2]

I've been dealing with chronic post craniotomy pain for almost 5.5 years now (had left temporal lobectomy for both refractory epilepsy and an astrocytoma in 8/2007) and have tried almost every option under the sun to deal with the pain.  Other than time, nothing has helped.  My pain is a chronic pressure/squeezing feeling across my forehead and irritation around the center of the C shaped scar on the left side of my head going from my forehead to behind my left ear.  I have two questions: has anyone ever had one or more of their metal plates and screws removed, noticing a reduction in pain?  I wonder sometimes if the soreness I have in the middle of the scar, around a plate, is partly responsible for at least some of the pain I have.  Secondly, has anyone found any relief using medical marijuana for their pain?  You don't have to answer my second suggestion if you don't care to, but any information relating to either or both of my suggestions is much appreciated.  Thanks to everyone!

PS: for note, I felt it good to put my question in this section, since pain is from craniotomy.  Thnks--  

[horselip]

Oh And yes med MJ did help some. There is a type of edible product that has the pain killing properties but does not make you as stoned.

[horselip]

Got cut off....type two bilateral. The typical TN meds did not seem to work with me. Only opiates worked but tolerance issues made it so that I would have to wean off. maybe that screw is causing nerve probs? dopa max did not work that well for me.  Dunno. Sorry to hear that they still have no clue what is going on.
Horselip

[horselip]

Hey spitfire,
I just had a procedure that really helped my head ache. After many diagnostic  injections my docs did a bi lateral radio frequency ablation of the sphenopallatine ganglion. The surgeon targeted the spot where the second cranial nerve feeds into that gnarly mess o nerves also known as F2. I can post the gritty details if you want. But the docs knew that numbing that spot with lidocaine helped before they did the RFA. I don't know if our causes are the same but I felt my pain from eye brow to eyebrow for seven years straight.i just had this done a week ago and got back home yesterday.Some nerves can be treated with RFA. I had a form of Trigeminal neuralgia

[rumpled]

I can't do advil... I have to avoid aspirin, advil etc - I have a platelet issue so things that thin blood are not great for me. Tylenol is not a great option anymore so I just do that infrequently.

I have tried other pain meds... I forget... ha ha. Oh ultram.

I have a cousin dealing with cancer now so we talk as we have similar issues - loss of friends etc. so yeah, it does help.

[spitfire2]

Sure, I will let you know if MM helps my pain.  And thanks for your good luck wishes.  If you also hear anything more about plate removals or helping chronic pain from a craniotomy, please let me know.  

Let me know if you decide to try the temazepam (and some advil) and if it helps you.  I really hope it does help.  And yes, try yoga.  Perhaps you could be part of a special support group.  Again, I go to a place for people who are either going through cancer treatment/surgery for tumors or have finished their treatment.  So it is really helpful to support, and get support from, people who are dealing with serious medical issues.  And you definitely are, so I hope you are able to do something like a yoga support group.    Thanks again!

[rumpled]

Oh that is a good thing to know... yeah, I hate the topamax and I have talked to my doc about changes but everything else we have tried has not worked as well, so I end up back on it and in the mean time, my life is not fun (and can not be fun anyway... that whole quality of life stuff the docs don't seem to know/care/understand/wtf!!!)

My acupuncture guy is a former oncologist and treats a lot of current and former cancer patients - so maybe that is why he has the touch? All I know is that I was bedridden with no use of my arms until I met him, and I know it when I miss... nothing like two frozen shoulders to put life in prospective.

Good luck on your surgery and do keep in touch! Do as much as you can in a thread - it can help others. I had others help me and this is that pay it forward thing. I have not tried yoga... maybe I should.

[spitfire2]

meant topamax, sorry for my errors!

[spitfire2]

You poor thing--a high dose of topomax is really hard, so you totally have my sympathies.  I know seizure medications very well, and a high dose of topomax is really a challenge, so I give you a lot of credit.  That's not easy.

This may sound crazy, but the only medications which have provided a little relief for me, i.e. taken some of the edge off, has been a combination, during the day, of 3 advils and 15 mg of temazepam, (brand name is restoril, type of sleeping pill/relaxant) taken together.  I take a different dose of temazepam to sleep at night.  Sometimes I can get a little tired during the day, but it does help a little (no magic cure, but helps more than anything else I've tried).  If you're interested, check it out.  Might help you.  Using temazepam for pain is off label.

I also am on disability, which I am grateful for, since at least I also get medical care (can't get any private insurance, and I passionately despise those bastards for what they do to people) but would trade that in any day for a life without pain and an opportunity to get things going, considering my years of epilepsy had already limited my life possibilities. But who knows.  I'm sure you feel the same way.  I am so sorry to hear of everything you are going through (grrrr, as you say).  You totally have my sympathies.  If I hear of anything that may help you, I'll let you know.

I will fill you in on the MM, keep you posted.  I'm dieing to try it....I am only waiting because I have some surgery this Wednesday.  Afterwards I am going to try it.  It's challenging, because you have to figure out what strain helps most, how much to take, when to take it, how long the effects last, and find a balance so that you don't get knocked out during the day, for example, but get enough pain relief to function okay.  It can cause headaches if you do too much.  Finding something for the night to help with sleep is a different story.  And there are over 70 strains.  I know it has helped cancer patients, so I'm hoping for the best.  I go to a yoga class for cancer patients, and have heard many positive stories about people's experiences.  So if it helps me, I will keep you posted (could send an e-mail to your account to be more specific.)  Might help you too.  

All the time you spend on this website is very admirable and kind, and I think you deserve a lot of credit for all your help, so thank you very much.  Thanks also for sending me the link to the person who had a plate removed.  I think they also had three plates, and only had one removed, which also maybe a possibility or me.  If it helps them, I might look into it.  DOn't know if it will help the squeezing feeling around my forehead and eyes, but I have nothing to lose.  Having another surgery is not fun, but at least I know it may be an option.  I sent them an e-mail.....I wonder where they went for treatment.  

Anyway, let's keep in touch, and as I said, we can also e-mail each other/message each other on this website, you know what I mean.

Best to you--

[rumpled]

You have tried a lot... I had to ask. A lot of times people post and they have not even been back to the doctor once.

http://www.medhelp.org/posts/Brain-Pituitary-Tumors/Long-Term-Pain-Post-Craniotomy/show/1750256 is a recent post and it references removal of a pin.

I use topamax (I did try neurontin and keppra as well) and use acupuncture. I am on the max dose - it does live up to the name of dopamax (I was trying to remember what I had and could not remember!!!) but it is trigeminal neuralgia so it is facial nerve pain and when it acts up, it can make me vomit. It is rather tricky - I cannot tell now what is migraine, what is the TN or what is my headache from low adrenals - and I have to treat the latter quite differently.

I don't have a plate - my surgery was entirely via my nostril, but oddly still hit a nerve. It was not the first surgery but the second when I had an infection.

I don't manage well... I am disabled (bleah) so I just have to plan that I *want to do xxx* in a day but my body may dictate that I may do *x* or nothing. Pffft.

If they can find a different med, it may be that it will help the pain as well - BUT... it may mess with your seizures and who wants to mess with that.  I have no idea about stacking those meds - the pharmacist may have a better idea. I know I was able to stay on a lower dose for migraine control but once the nerve issue hit, I had to go up to the max. I was not able to do botox as they experimented and it would have effected my eye and a numb eye is not acceptable.

The MM may help you - I just don't have any experience with it... it would be interesting to know.

[spitfire2]

Thanks so much for your reply, I totally appreciate it.  I know it always takes time to write things up.

To answer your questions, I've been to Rush pain center many, many times, been to Cleveland Clinic, once to Mayo, seen local docs, tried many types of pain injections, as well as botox, cryoprobe (which helped somewhat around the scar) pain meds, went through a trial period with electrode implants, as well as some acupuncture and some alternative treatments.  My remaining options are practically nill at this point, thus my initial questions about the plates and medical marijuana, really.  I don't know what on earth to do at this point :(  Other than retry an injection or maybe another seizure med.  I'm at my wits end.

If you do know or have read about removing one of the metal plates, I would be very interested.  It might be hard to find a neurosurgeon willing to do so, though, but there must be someone out there willing to try.  Any doc come to mind?  I've read (on different websites) about some people who actually had a plate removed, because it really was very irritating.  I don't know what is worse for me, scar tightness or forehead pressure.  Perhaps one is related to the other.

I agree with you about the seizure meds.  They can be difficult, side effects and all.  I'm kind of biased, as the many meds I worked with over the 13 yrs I had refractory epilepsy of course were ineffective.  I'm currently on a moderate level of lamictal (been on sz meds over 18 yrs now), and have somewhat mixed feelings about adding on another seizure med for pain, but am willing to try.  Have you found a particular sz med, or any particular med at all, which does help you with your pain, if you don't mind my asking?  THought I'd ask, since we both deal with nerve pain.

Honestly, I felt a little hesitant, asking about the medical marijuana.  I was recently approved for medical M, but have not tried it for an extended period of time yet.  I know it's hard, with so many different strains and hybrids out there, but I just hope to find one which does not make me feel too "droopy" or anything.  I just want to go back to school and get a career going, so I'd like to find something which helps with neuropathic pain but doesn't knock me out, and perhaps another strain which can help me sleep at night.  

I'm sorry about your pain as well, really.  How do you manage?  

Thanks so much for any help.  Any info about plates removal/meds, etc. which have helped you/neurosurgeons willing to help (i.e. any of my couple questions) I completely appreciate.  

All the best--

[rumpled]

Who have you seen for pain, and what exactly have you tried?

There are some posts on screws causing pain - I will try to find them and put the links in for you. It is difficult as our search is not the best (grrr) so I may or may not be able to find them.

It sounds like, to my layman read, this is nerve pain and at this far out, it is past the usually healing stuff which no one ever tells you about. There is a class of meds that works on nerve pain - like neurontin, topamax, keppra etc. and they all have nasty side effects so you have to see a) if one works for you and b) if the side effects on the one that works is tolerable.

There is also acupuncture. I use that for a lot of my pain. It does create another pain - in my wallet - as insurance does not cover much of it but it works so well for me that I find it is worth it for the quality of life.

As for the medical marijuana - I did pain management for a while and they toss pills at you. I personally don't like this or the way it made me feel but that was me. It only took the edge off and made me feel loopy. So you have to weigh the pros and cons. It may work but like all options, you have to weigh in the side effects.

Another option may be botox? They may be able to deaden the nerves for months and that may help. I would consult a derm about this and see if they can help you out and it may (may not) be paid since it is for medical not cosmetic reasons. Some neuros do this as well.

I was left with nerve pain myself - it acts up despite meds and all - so I can understand but I don't think mine is as bad as yours is.