Trigeminal shocking is unbearable

[Keri]

Adrienne,
I just read on someone else's post that you replied to. I just noticed your new "footnote" or signature or whatever it's called at the bottom. I think that's the first time I've read that your AN is bigger than thought and that you met with your doctor. Maybe I don't know the latest but what's up? Do you have any date yet? Can they move on it faster since it's bigger? Just concerned and hope you're doing alright, all things considered.

Keri

[Adrienne]

Hi Keri,

Very observant of you!

Yes, it's bigger than they originally thought (just measured wrong by everyone thus far, and was finally measured accurately at my neurosurgeon appt.).  The shocking go so bad last week that I couldn't eat solids or talk for fear of it triggering.  On that day, I called my neurosurgeon's office and talked to the receptionist.  The pain was so bad I was talking through tears and had to keep stopping when it shocked me.  I wanted to know what to do about the pain. She said the neurosurgeon was in surgery all day and she couldn't talk to him, but that she'd call me back the next day.  Sure enough, she called and told me to keep taking the Carbamaepine and that they'd see what they could do about getting me in sooner.  I figured it was just lip service, but an hour later I got a call from the hospital and they said "We know you don't have a surgery date yet, but we were asked to get you in as soon as possible for your EEG (baseline study).".

I figure that's good news, since I'm imagining that that information needs to be current for surgery.  Just a guess, but doesn't that seem realistic?  I mean, they can't do an EEG for purposes of monitoring/comparing in surgery and then wait 2 months before doing the surgery, right?  The data would be old and no longer relevant (step in here anyone that knows if this is true or not.....maybe I'm just making myself feel better about the long wait and the possibility of it being bumped up???).

So tomorrow I go in for my EEG, and I have another appt. to meet my ENT surgeon for the first time.  I think he's going to do another hearing test on me to use as a baseline too.

Things are finally happening, and I'm hopeful that means an earlier surgery date.  Maybe early June ( Total guess....)

Thanks for asking.  Pain is bad again today, despite taking the meds.  It seemed to dull it for a few days, but now it's bad again.  I've upped the dose, and hope that helps.

Adrienne

[Jim Scott]

Adrienne ~

I'm so sorry that you're in so much pain.  I can tell you that my pre-op EEG was done within a week of my surgery.  As you guessed, they have to be current...hospital rules and doctor preference.

Please know that you're in the prayers of many people around the country and in other parts of the world. 

Jim   

[CHD63]

Adrienne ....

I pray that all of the pieces will fall into place and you will be placed in an "urgent" category for surgery.  Just keep thinking about how wonderful it will feel to be free of this awful pain ..... hopefully very soon!

My thoughts and prayers are with you.

Clarice

[MAlegant]

Adrienne,
Keep asking them for the surgery date and continue to tell them  you are in pain.  This may allow them to move you up the list.  Hang in there.
Marci

[moe]

Adrienne,
Thinking of you today and hoping all the best of news with your appointments to get your surgery date moved up.
Let us know the news, hopefully GOOD
Maureen

[sharonov]

This is a rather late reply.  I, too, have Trigeminal Neuralgia and it was controlled by Tegretol (carbamazapine) for over a year; lately I've had to up the dosage 3x.  I hate to take meds, as most people, but I dare anyone with this pain to abstain from ANYTHING that will alleviate it!  You'd have to be a complete masochistic nut, unless the pain was far less than mine.  I've been watch-and-wait for 4 years since my AN is under 2 c, but I'm now ready for the surgery.  In the morning I can't talk or eat until the pills take affect, and it takes 1 1/2 hours.  Think live electric wire on the nerves of your teeth.  Think "Marathon Man" (movie with Dustin Hoffman where evil dentist drills on his nerve.)
I'm thinking about Cyberknife.

[Keri]

Hi Sharonov,
I don't know if you've read this yet, but Adrienne's updated her post surgery story over in "post op" ('Adrienne' postie story' or something like that). She has some details about the nerve pain.. wanted to pass that along in case you find it helpful. I really hope you can get some reief soon.

Keri

[Adrienne]

I'm not sure if you'll see this reply or not, but I just wanted to let you know how this turned out for me.  I know EXACTLY the pain you are speaking of.  Horrible.

I had surgery 2 weeks ago (Retrosigmoid) and I feel GREAT!!!!!  No more nerve pain!  My tumor was quite involved with my trigeminal nerve, and as a result, I have a bit of numbness (think pins and needles) on half of my face/tongue, but it's NOTHING compared to dealing with the nerve shocks.

I hope you get some permanent relief too, as living like that is horrible.  I wasn't keen on the Carbamazapine either, it made me feel dizzy and headaches.  Glad to be done with that.

Good luck with your decision!

Adrienne

[sharonov]

Adrienne, why did you choose the mode of surgery that you did instead of Cyberknife or Gamma Knife?  This is VERY important to me.

[Adrienne]

My choices were quite limited.  I spoke to 2 neurosurgeons and both said that with the size of my tumor (3cm x 3 cm) I was right at the top size limit for radiation.  They didn't want to risk the radiation causing the tumor to swell, b/c it could cause even more complications at that size.

Really, they felt my only options were Retrosigmoid or Translab, and my neurosurgeon is very skilled/experienced/ and happy with Retrosigmoid.  So given his confidence and experience, that's what I went with!

[sharonov]

Thanks for the quick reply, Adrienne.  That makes a lot of sense.  My tumour is smaller (under 2 cm) but must be in just the wrong spot.  I had really thought I'd die with my little tumour (I'm 66 and it's grown minimally in the 4 years since diagnosis) but now I'm strongly considering Cyberknife.  What's probably happened is that it's been irritating that nerve (5th?) for years and only just now is the nerve complaining.  I'm a retired marketing person and have 0 medical training but this seems feasible.  Of course, my doctor appointment isn't until next week................

I'm REALLY happy for you that your TN is gone!  What a relief!  The meds to control it have taken all my energy and made me an old lady.

[Adrienne]

I think cyberknife may be a great option for you, but I would DEFINITELY question, question, question the Trigeminal relief and make sure they have some sort of guarantee about it before doing it.  I know nothing about it, but even if the tumor is dead, it's still in there-so how could that bring relief?  It would still be sitting against the Trigeminal nerve, wouldn't it?

I can't imagine living with that pain long term.  It really does take your breath away (made me stop eating for fear of a trigger).  Not knowing what triggers is causes so much anxiety.  I had a shower the other day and used an exfoliating face scrub.  It was HEAVEN and there is NO WAY I would have done that with the nerve being irritated (I still recall the first time I did it, not knowing it would cause a trigger).  Sends shivers up my spine thinking about it.

I really hope you get some answers-and fast.  Relief is so sweet, and I agree-those meds are nasty.

(hugs)
Adrienne

[Janet]

Adrienne,

I felt so bad to read what you were going through with your horrible trigeminal nerve pain.  Congratulations on your new founded relief!  I am so happy for you.

Janet

[mk]

Sharonov,

I have trigeminal symptoms too, but I am fortunate that they are completely different than the ones you are experiencing. It is only mild numbness (i.e. hypoethesia), which is not bothersome at all. Other than that, I didn't have any other symptoms. Hence, in deciding to go with GK, I took into account the fact that I was basically symptom free, and wanted to remain that way. And indeed this has happened, but of course as I expected the numbess is still there, since the tumor is still pressing on the trigeminal nerve.

Having said this, I agree with Adrienne that I don't see how severe trigeminal nerve pain can be relieved with radiation, since the trigger for the pain will remain there. Small ANs typically do not affect the trigeminal nerve, but as the tumor grows, it starts impinging on it at its root entry to the brain stem. This is probably what has happened to you, so I don't think it was pressing your nerve for years.
If you need relief, it seems like decompressing the nerve may be the only way to go.... Dubulking the tumor followed by radiation is an approach that some surgeons take. So make sure to bring these issues up on your next doctor's appointment.

Good luck
Marianna