ANA Discussion Forum
General Category => AN Issues => Topic started by: Adrienne on April 26, 2009, 07:03:01 pm
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It appears my AN is so large that it's affecting my Trigeminal nerve. The shocking pain comes and goes, but when it comes-oooooooh boy, it's killer pain. Enough pain that it limits my talking and eating. Brings tears to my eyes and makes me gasp for breath.
My GP prescribed something called Carbamazepine, and did so because that's what he gives his patients with Trigeminal Neuralgia. The problem is.....because it comes and goes, I don't feel this is right for me. I'm supposed to 'build it up in my system', but I can go days/weeks without ANY pain. Seems ridiculous to take this med for so long and not know if I even need it (!!??). I would prefer a med that I can take similar to an advil, where you take it only when you have the pain and it gets to work right away.
Anyway, my question is two fold for those that have experienced the shocks up the side of their face:
1) Have you found any over the counter meds/relief that you can take only when an episode starts or you're going through a bad period?
2) For those that had the trigeminal shocks before surgery, did it get BETTER after surgery? Or is this just a new reality to live with? I forgot to ask the neurosurgeon that when he confirmed that it is related. I know it's affecting the feeling in my eye. I can poke myself right on my pupil on my AN side and barely have a blink response. Not good........
Thanks so much!
Adrienne
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Hi Adrienne .....
I can identify with the lightning bolt shocks from trigeminal neuralgia, caused from pressure on the trigeminal nerve. I had the horrible intermittent shocks for six months before microvascular decompression surgery 15 years ago. During those six months I was put on Tegretol, which did lessen the severity but required increasingly larger doses. The decompression surgery was retrosigmoid and the relief from pain was immediate and never returned. It seems logical to me that your trigeminal pain should be gone when the pressure is taken off the trigeminal nerve with your AN removal.
As "luck" would have it, I developed an AN on the other side 10-12 years later, fortunately without the trigeminal nerve involvement.
I pray your pain will be gone when the AN is gone!
Clarice
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My trigeminal pain went away after surgery and has not returned since. They were my only presenting symptoms, but man, that was the worst pain I had ever had.
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Oh, and nothing OTC will help that pain. I think the Tegretol that Clarice mentioned is a common medication. Good luck.
Marci
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THANK YOU. I am SO happy to hear that both of yours went away after your surgery! I really hope that's the same for me.
(BTW, you gave the *right* answer......even though I would have wanted the truth, I'm not sure what I would have done had you said it never really goes away!!!!!!!!).
Thanks for answering so quickly. I hope this is the 'norm', and not just a few exceptions!! :-)
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Adrienne,
FYI, Tegretol = carbamazepine.
Larry, aka mrgarlic, whom I have met in person at the Portland ANA group meetings, had a trigeminal neuroma removed in January, and also reported that the pain went away. So that makes three. I think you should be optimistic.
Steve
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Adrienne,
That really is the right answer. It will go away. I hope you can deal with it until then.
M
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Hi Adrienne,
I'm so sorry you're dealing with all of this. I hope you are able to get your surgery scheduled soon and can get on with recovery.
Hugs and prayer to you,
Keri
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Hi Adrienne,
I had the same pain as you are having before my surgery - I didn't take anything for it - I try to avoid meds if I can and because it would just come all of a sudden and then go, it wasn't predictable enough to medicate I thought. Anyway the good news is after my surgery - 7 weeks ago - I've not had any more pain... whoop whoop!
good luck
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Thanks everyone.
Today is the worst day yet. I actually cried twice because of the pain. Called my neurosurgeon and spoke to his assistant. He's in surgery today and she won't be able to ask him anything until tomorrow. So today I put up with it, and hope tomorrow is a new day. I also secretly hope they take this as a sign that my surgery needs to be a priority and none of this waiting around dealing with this pain for MONTHS business.............
I mentioned my 'cloudy' eye too, which is a new development since i saw him last week (actually, it's hard to explain. It's not affecting my vision (yet?) but feels like there's some kind of film inside it. Odd....). Hopefully he'll have some input for that as well.
I'm so thrilled to hear this trigeminal nerve pain should go after surgery. It's debilitating and bad for the social life too (don't want to talk to anyone or eat anything for fear it will trigger).
Thanks again,
Adrienne
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Adrienne,
Ciould you or anyone please explain to me and others what trigeminal nerve pain is?
Another one of them things I've never heard of.
Patty
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Found this online. It is about Trigeminal Neuralgia (something different) but since the AN is affecting/irritating this same nerve, this best describes what I'm dealing with. Hope you NEVER get to know this pain on a closer level than this description:
The trigeminal nerve (also called the fifth cranial nerve) is one of the main nerves of the face. There is one on each side. It comes through the skull from the brain in front of the ear. It is called trigeminal as it splits into three main branches. Each branch divides into many smaller nerves.
The branches of the trigeminal nerve take sensations of touch and pain to the brain from your face, teeth and mouth. The trigeminal nerve also controls the muscles used in chewing, and the production of saliva and tears.
Neuralgia means pain coming from a nerve. In TN you have sudden pains that come from one or more branches of the trigeminal nerve. The pains are usually severe. The second and third branches are the most commonly affected. Therefore, the pain is usually around your cheek or jaw or both. The first branch is less commonly affected so pain over your forehead and around your eye is less common. TN usually affects one side of your face. Rarely, both sides are affected.
The pain is stabbing ("like electric shocks"), piercing, sharp, or knife like. It usually lasts a few seconds but can last up to two minutes. The pain can be so sudden and severe that you may jerk or grimace with pain. The time between each pain may be minutes, hours, or days. Sometimes several pains repeat in quick succession. After an attack of pain you may have a dull ache and tenderness over the affected area which soon eases. However, constant pain in the face is not usually a feature of TN.
You may have 'trigger points' on your face where touch or even a draught of air can trigger a pain. These are often around the nose and mouth. Because of these, some people do not wash or shave for fear of triggering a pain. Eating, talking, smoking, brushing teeth, or swallowing may also trigger a pain. Between attacks of pain, there are usually no other symptoms, the nerve works normally, and a doctor's examination would find no abnormality.
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Yup, that describes it to a T! :'( I can tell you exactly where I was and what I was doing the first time it hit! I thought someone had touched my face with a hot wire! Before I finally had surgery, I was wearing a scarf around my head and face night and day because the least breeze or cold air would trigger an episode. My pain was always in the top two segments so it was above and below my eye and my cheek. Initially I thought I had a terrific sinus infection because I was just getting over a cold at the same time the first episode occurred.
Even after 15 years, I still shudder remembering how awful it was. Thank goodness my primary care doc correctly diagnosed it quickly and then it took several months for my husband to convince me to have the surgery (brain surgery ..... no way, was my first reaction).
Adrienne, keep on the surgeon's front burner ..... there is no need for you to suffer like this!
Clarice
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I agree with Clarice.. I hope and pray you can get moved up to the front of the surgery line soon soon SOON.
Keri
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I hope and pray you get your surgery sooner. That sounds absolutely intolerable.
Hang in there.
And not knowing when it is going to strike must be horrible too :'(
Maureen
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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Adrienne, why did you choose the mode of surgery that you did instead of Cyberknife or Gamma Knife? This is VERY important to me.
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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!
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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! ;D The meds to control it have taken all my energy and made me an old lady. :(
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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
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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
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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
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This gives me something else to think about. I've avoided the thought of surgery (trans-lab or retro-sigmoid) because of the hearing loss associated with it. Adrienne, did you lose the hearing in the affected ear?
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I definitely lost hearing, but not all of it. They're amazed at the frequencies I retained (for now?), but I lost significant volume. I'm thrilled to have kept hearing though, as I was told it was very unlikely.
I'll have an official hearing test in a couple of weeks and will have a better idea then of what is left.
Adrienne
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Hearing loss on one side is not the end of the world. I do know some will depend on your job also. I lost mine before my 2001 surgery and didn't even realize it had went all the way. I knew I was having some problems. I was told by the first ENT I ever saw if could have a tumor and he said I just get anxious. So I kind of ignored it more than I should have. I was also planning to go on a trip and was not wanting to miss it so also ignored things. In the long run I wouldn't have been better off since eventually was found to have NF2 in time and more surgeries on the rt side and one on the left.
Cheryl R
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I can say I completely understand. My TN is why I'm having surgery. It has calmed down a bit to where I could tolerate it....but tonight my goodness....It hurts. Ugh...I sure hope surgery gets rid of this. Its painful.