I could punch my neurosurgeon right now...very frustrating appointment today

ok a little back story:

I had brain surgery in June 2010 to remove golf ball sized tumor from my temporal lobe; started to have pain immediately following and have had it ever since.

pain is: constant, burning, throbbing, pressure, aching near the mid-line of my skull before my ear and in my cheek, jaw, palate, and temple/forehead region. It sometimes feels like the combination of brain freeze and a muscle cramp in the side of my head or like someone has wrapped their hand around the side of my face and is lightly pressing down.

I had surgery in May of 2012 to remove metal pins (from the previous surgery) because my neurosurgeon thought they were the culprit - they weren't.

I had a follow-up today and he says "I think it's muscular. I think it's just deep scar tissue in the muscle."

He sent me on my way with a script for ultram. I have an MRI next February and that's all she wrote. I've also been in correspondence with with my neurologist who last told me "it is most likely a kind of neuralgia" but I won't see him until September 10th.

I just don't know what to do. I think i'm going to wait it out to see my neuro...and then maybe get a new surgeon?

Cassie - deep scar tissue in what muscle??? Didn't your back story say you had brain surgery? Sounds like your neurologist may be more on top of what is going on than the surgeon. I support you in your thoughts that you may need a new surgeon.

Hope you can hang in there.

Elaine

He said he thinks it's deep scar tissue under the temporalis muscle.

I'm currently taking Depakote ER 1000 mg a day with the ultram (now) as needed. I'm hoping this will tide me over until I see my neurologist in September!

What kills me is that my surgeon is the chief of neurosurgery and director of the neurosurgery program through the medschool.... how could he not even consider it? I told him that my neurologist thought it might be a neuralgia, and he simply said that it couldn't be that because when I was prescribed neurontin it didn't work; I can't even remember what my dosage was or how long I took it for. I had a hard time taking a lot of anti seizure drugs before since I was in school and they make you stupid.

Maybe I should ask my neuro for a diagnostic nerve block or something?

Should I try the gabapentin again?

You could try Lamictal -- Lyrica - amnitriptoline (SP)

there are many drugs to try -- if you want to friend me -- I can send you a list of meds I've saved from here that work for people with TN

ALSO get the book "Striking Back" By Dr. Ken Casey --- 200+ things to try!

Kimberly

Cassie,

I’m sorry to hear this. A surgeon is a surgeon, that’s mostly what he knows and does. The fact remains: you’re having pain and something is causing.

Neurontin doesn’t work for everyone for neuralgia. I believe most TN patients are on Tegretol or Trileptal. I’ve seen more prescribed Lyrica.

I do know scar tissue can cause pain and repeated surgeries increase the amount of scar tissue. However, your doctor(s) are supposed to be there for YOU. I hate feeling like an ant in an ant mound. There’s hundreds of doctors and someone will get to the bottom of your pain.

You should NEVER feel like you do right now after a visit with your doctor. I say never, but it’s happened to probably all of us on here. Be your own advocate. Find a doctor who cares.

I feel some doctors have no interest in the complicated or unknown. They become complacent with easy cases and guaranteed pay offs. Medicine is big business now. But I do there remain true doctors. Please find one.

Know you’re not alone.

Hi Cassie

Nuros, Surgeons etc work to a pattern. usually check one thing work through it put a line through it move on to the next thing try that put a line through it.

trying to move them out of that pattern is very difficult!!! almost impossible.

I have walked out of my Nuro many times with my fist balled up and just managed to keep my impuses in check.

A deep breath and a new specalist might be in order??

Now Re the gabapentin,

How long were you on it?

What dosage? Did you start low and work up?? (This is a must, absolute must).perhaps old scripts if you have them to look up?

Normaly Nuros will prescribe tegratol as its a diagnostic drug. IE If you are on it and get improvement (aside from the side effects) then other drugs like gabapentin/ lyrica can then help.

I would not expect you to stay on tegratol. If you have not been on tegratol but have had issues with other drugs of this type then this would make sense it not be prescribed.

Tegratol is nasty with its side effects but is by far and away the best drug for TN and assosiated issues.

I was prescribed it and got immdate relief but was as high as a kite for days. bloody loopy.

On to Nurontin (gabapentin) straight away thank God. Not as good but balanced out after a while.

In my opinion try the gabapentin but ease into it.

100s bd to 300 bd and see how you go. (with you doctors advice of course). dont start on the max strength as you will end up in a world of side effects.

a week at the low doses a week at mid doses and then see how quality of life improves or if you are too dopy.

always go for minimum possible dose IMO.

I had a situation where I ran out and went to old stock a few weeks ago. thing is it was 6 months out of date (I didnt check) it was old 600 mg I take 300 and my symtoms were shocking (pun intended).

Please note things like gabapenting dont work straght away, everyone is different. i can take two weeks for you to notice. it can be over night.

The issue with the cloudy mind from the gabapentin does recede after a time. you feel normal. only a new normal. its not too bad. Much better than the pain.

Hope you are doin ok.

Simon

Oh the diag Nerv block... research that one but not a good idea.

I have had them done on my back and work wonders on the facet joints but for the TN nerves

The results are not so great. always do you own research there.

Simon

Simon:

I was on tegretol when they originally performed surgery. I think I was taking upwards of 600mg a day to stop seizures. I was taking it when the pain started, but at a low dose (200mg) and it made me so stupid and dizzy that I actually stopped taking it all together.

My neurologist tried a temporary nerve block (with something like lidocaine) and I think I remember it working.

I'm just going to email my neurologist and tell him what my surgeon said and wait it out until I see him in September.

:/



SimonL said:

Hi Cassie

Nuros, Surgeons etc work to a pattern. usually check one thing work through it put a line through it move on to the next thing try that put a line through it.

trying to move them out of that pattern is very difficult!!! almost impossible.

I have walked out of my Nuro many times with my fist balled up and just managed to keep my impuses in check.

A deep breath and a new specalist might be in order??

Now Re the gabapentin,

How long were you on it?

What dosage? Did you start low and work up?? (This is a must, absolute must).perhaps old scripts if you have them to look up?

Normaly Nuros will prescribe tegratol as its a diagnostic drug. IE If you are on it and get improvement (aside from the side effects) then other drugs like gabapentin/ lyrica can then help.

I would not expect you to stay on tegratol. If you have not been on tegratol but have had issues with other drugs of this type then this would make sense it not be prescribed.

Tegratol is nasty with its side effects but is by far and away the best drug for TN and assosiated issues.

I was prescribed it and got immdate relief but was as high as a kite for days. bloody loopy.

On to Nurontin (gabapentin) straight away thank God. Not as good but balanced out after a while.

In my opinion try the gabapentin but ease into it.

100s bd to 300 bd and see how you go. (with you doctors advice of course). dont start on the max strength as you will end up in a world of side effects.

a week at the low doses a week at mid doses and then see how quality of life improves or if you are too dopy.

always go for minimum possible dose IMO.

I had a situation where I ran out and went to old stock a few weeks ago. thing is it was 6 months out of date (I didnt check) it was old 600 mg I take 300 and my symtoms were shocking (pun intended).

Please note things like gabapenting dont work straght away, everyone is different. i can take two weeks for you to notice. it can be over night.

The issue with the cloudy mind from the gabapentin does recede after a time. you feel normal. only a new normal. its not too bad. Much better than the pain.

Hope you are doin ok.

Simon

i was very frustrated with the neurosurgeon who performed my GK ... when i went back for the follow up and told him i was in worse pain than before the procedure, he would not make eye contact with me ... he just looked at his notes the whole time ... he didn't even notice when i had an episode of pain ... i guess since i don't scream and moan and fall to my knees, i am not in "terrible" pain ... thanks to joining this group (afterwards), i am on baclofen and gabapentin and it manages my pain ... i don't think clear but i prefer it to the pain ... suffice it to say, i will not be going back to him