Wish me luck with Gamma Knife

Hello all,

After 6 years of constant chrushing/aching/stabbing pain, horrid meds, and disapointing nerve block results, I am biting the bullet and agreed to have a destructive procedure.

My diagnosis has been ATN, Idiopathic facial pain, CRPS and Trigeminal Neuropathy from trauma, so take your pick from which doc said what. I personally think it is from an oral surgery so the trauma one rings most true but I usually self Identify as ATN since most people here and on other groups have a good idea of what that means over the other even less defined terms. MVD was ruled out as I have no compressions and a history of injury where my nerve pain is worst.

For the longest time Nortriptyline has been my only life line to pain control, none of the other 10 medications I have tried were effective or safe from unlivable effects. And now it seems after 5 years of steady high dose use, the Nortriptyline is damaging my heart, and with a family history of heart complications like arrhythmias and A-fib I don’t really want to mess with that at age 30. So I need to try something drastic if I want pain relief.

After extensive research and seeing various sergons, Neurologists, pain specialists, and getting a push from the new cartiologist to do something to at least try and lower my Nortriptyline dose, I decided that Gamma Knife was going to be my best of the all bad options.

I have now terrified myself even further with reading a bunch of horror stories, and amped myself up with reading all the success stories. My procedure is in 8 days, and I could really use some cheering on to use as ammo against the anxiety attacks.

Could some of you share what went into your decision making process, what made you think GK was a good option? Even if you haven’t gone for it yet. I really don’t have any garuntes, or good options here, as I have to do something and nothing is sure to work. It sucks but that is where we are.

Please don’t tell me any horror stories or really bad outcomes here, or dissuade me from doing it, as I can assure you, I have read ALL about AD, vision and hearing loss, Ballance loss (which I already have…), and even spinal fluid leaks, radiation complications and other rare effects. I know my risks, but at this point heart damage is a sure thing if I can’t get off meds for at least a year, and this seems like my best bet.
Prayers and well wishes are appreciated! Love you all, thanks for being here!

Hi Erika! It sounds like you’ve really been through the ringer with this. I’m sure that you have weighed out all of your options. I hope that your procedure goes smoothly. In the meantime, you may want to avoid reading about the procedure. You definitely don’t need more anxiety right now.

Sharon from ModSupport

Unfortunately I’ve always been more anxious without information. Info soothes me. The thing that has soothed me most on this site is reading about people who have had it as bad or worse and feeling like I am not weak, this is just a hard thing, I don’t assume I will be like others, or become fixated on how it could be worse, I become fixated on worries that I am making the wrong choices. I have always had to watch injections and blood draw needles even as a toddler or I freak out about the unknown. This is a similar thing, I need to know exactly what all the possibilities are and then I can be resigned to what ever may come. Feeling like I know all the options, angles and step by step what to expect from every possible outcome is generally how I calm down my fears of the unknown. You would think worst case scenarios would be the scariest thing, but feeling unprepared and like I am making an uninformed choice is what really sets off my anxiety. that is why I am most interested in how other people are making choices for their treatments. Thanks for the well wishes!

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I wish you well with your gamma knife procedure. I am looking at surgical options and yes, there is a lot of info out there. I would encourage you to trust your intuition. You have been through a lot. I can relate with wanting to know everything! Wishing you the very best :pray:t2:.

Hi Erika, reading your post is like reading what I’ve been going through for the past three years. It started with a tooth surgery gone wrong in 2017. It’s my front tooth, just curious where your pain/surgery was? I’m currently on high doses of gabapentin 1800mg per day and 30 mg of nortriptyline at night. I’m at my wits end I’ve been in constant pain since January 2020. The medication takes the edge off and some days are half decent but most often I have constant ache from 1 PM to bed. It’s horrible. I’m trying a nerve block in January. If that doesn’t work the plan is Botox. And then we go from there. Just wondering if you’ve tried Botox? I suspect I will have to explore surgery if nothing else works, I’m just not there yet. A couple of questions for you, have you ever had a pain-free period in the six years? I did for six months last year but that was with my medication. Also just curious if you’ve come off all medications to see if your brain can compensate and reset? I want to try this based on what my specialist said but can’t stand missing a dose so not sure how to get everything out of my system. Lastly how much nortriptyline are you taking per day? I wasn’t aware it can cause heart problems! I’ve been mostly concerned with memory and gabapentin with kidneys.
Thanks and good luck!!!

It is so easy for Doctors who have not dealt with the degree of pain we experience to say things like " Try a re-set " or in my case " embrace the pain " .
No kind hearted soul or for that matter THINKING soul would, suggest that . There is a reason pain is used for torture and that is my response to anyone who would suggest trying to go back to baseline when one is dealing with this degree of pain
I have been doing well until recently and am back to having bouts of severe pain . I am looking into the V2V3 injections I have mentioned before . My former Anesthesiologist who did them without issue for ten years missed the mark putting me into the Trauma ED . . Now his insurance company will no longer allow him to do them . Few doctors are comfortable doing V2V3 so I do not have many Anesthesiologist to choose from
There is a risk of blindness even with this procedure …but the thought of the degree of . Pain I have faced before makes it seem reasonable .

My one caveat would be to try …if possible …and make these decisions with you are NOT in the throes of severe pain because in that situation one is inclined to say YES to any Hope

My original surgery was an unusual extraction of all 4 of my impacted wisdom teeth. All 4 were not only fully covered by my other molars, but actually had the roots of my other molars growing through them in places. Just a big mess in there. The solution was to cut “little window holes” in the side of my jaw over all 4 teeth, then liquify the wisdom teeth with a chemical, in my jaw, and then scoop the jello like tooth with a tiny spoon like tool. That is how the oral sergon described it too me. I was warned that there was a rare side effect of various types of facial nerve damage. It was a 6 hour surgery with full Anithesia. They had trouble keeping me out, as I process the drugs faster than average. So there was some concern that I had moved during delicate moments. After the extreme swelling and regular pain went down I had numbness and tingles on both sides of my mouth down to my chin. But as a careless 19 year old that was acceptable and easy to ignore, I felt that I had dodged any bad outcomes. For somewhat unknown reasons the left side erupted in crushing aching pain 4.5 years later in 2014. I still have the numb tingly spots on both sides. My theory is the left side was aggravated by a cavity I discovered in the upper left back molar, one of the molars that had a wisdom tooth removed from around it’s roots. I learned of the deep cavity 4 months after the pain began. I think the left tooth nerves were already injured and the cavity set off the pain feedback loop in the wider nerve branch. I had the tooth fixed, though the pain has only gotten worse. My pain actually began in my front two bottom left teeth and traveled up my lower jaw and spread across my upper teeth and cheek in the first 3 days. So really only God knows what actually happened.

I was on Oxcarbazipine and Nortriptyline for several years, because they were the most effective meds for me, but even the lowest doses of the Oxcarbazipine made me dizzy and I was still in pretty severe regular pain, and being off Ballance and often nauseated got unbearable after a few years so for the last year and a half I have been on just 50mg of Nortriptyline. If I go much higher than that it makes me sleep 18 hours a day and fall asleep doing dishes or eating, like a narcoleptic, so I keep 60% of the pain in order to stay awake through the day at the lower dose. I usually wake up with 3-4 on the pain scale, some good days I sleep at a 6-7, some bad days by 1-2 PM I just have to give up on everything, lay down and ride out the full 10 pain.

I have never had a non drug/treatment induced pain break. Not a single day in 6 years. My pain is severe and intense. Before I diagnosis (which took 5 months to find) I could not sleep, at all, without heavy pain killers, and I ate very little. It nearly killed me. Literally. Not the pain it’s self but the lack of sleep and food. I could only sleep while I had 800mg ibuprofen AND hydrocodone in my system. Even then I still hurt. I would take the huge dose of pills, sleep for 2-5 hours, and then wake to my own full throated screaming. Once I woke up that was the end of sleep for the night. I rationed my opioids to one a night. And once I ran out I spent 2 nights not sleeping at all, I was seeing full on halusinations from sleep deprivation, and my whole body aches, I then gave up and went to the ER and got more meds. That was how I lived. I CANNOT survive without some kind of pain relief, so I have never considered getting off meds just to see what happens, because even one missed dose usually results in a painsomnia sleepless night.

I did do nerve blocks over the summer. I had 28 amazing days that were really low pain or pain free, but that was not enough time to alter meds and my doctor worried about casing more damage if he did them more often than 3-4 months apart. They cost $1000 after insurance, so, all in all we decided that 28 days relief every 3rd month was not worth the risk of more damage, or the cost. I have never been pain free from pill form medications even at top doses. I talked to 2 doctors about botox, but due to my young age and my fast metabolization of the nerve block meds, and the largeness of my pain area it was not recommended as a good option.

My understanding is Nortriptyline, amitriptyline, cymbalta, and several of the anticonvulsants can cause your body trouble with regulation of heart rate. Because it stifles the entire nervous system it effects autonomic function like blood pressure and heart rate and even breathing in sever cases. For me I have not had a resting heart rate below 90 bpm for over a year. My average heart rate including sleeping is around 99-110 bpm. Right now, sitting on the couch with my feet up and typing this it is 107. When I exercise it can shoot up to 200 and I get chest aches and light headed. My blood pressure used to be borderline too low and now it is slightly high and I get episodes where my whole body feels like my blood is pounding and I get dizzy. There may be more involved than just the meds in my case, as I mentioned, I have a family history of odd heart things. But I fully believe the meds are contributing because when I lowered the dose to 40mg a day for a few months just to see, my resting heart rate average dropped by 5 bmp and went back up when I added the 10mg back in. I wear a heart rate monitor almost all the time because I wanted as much data as possible.

I hope so caught all your questions. Hope things go as well as possible for you, and thanks for the well wishes!

That is good advice. I totally agree that it is ignorant of our pain for people to advise cutting meds while we are still having breakthrough pain.

I was feeling a little pressured at the sergons office, not by the sergon, or I would be seeing a different one, but by his nurses, who wanted to reassure me and schedule the procedure right then and there. I refused to schedule in office, as I wanted time to think and research even more than I had. I looked up as much as I could and tried to parse out what was blind hope and what was anxiety and make as rational a choice between the two, as possible. But in the end I feel like I have to try something and this seems to have less risks and more reward than my other limited options.

I don’t read about anything when the pain is really bad. Unfortunately with constant daily pain I can’t really make a choice without pain being a bit of a motivator. Like going to the store hungry, I’m always gonna want something. :slight_smile:

Wow Erika, I completely sympathize with you. It’s such a difficult thing to live with. I feel like I’m coming to the realization that this might be permanent and I am utterly terrified. I just started CBT with a therapist and starting to come to terms with what’s happened. I’ve always been told by my oral pain specialist, oral pathologist, neurologist that this will likely settle, that I will no longer need medication, but three years in I’m starting to lose the faith. I’m going to start checking my blood pressure and heart rate now that you’ve mentioned this. I just pray you have success and please keep us posted on how you do. Good luck!

Medica, what are V2V3 injections? Just curious are there any people on this site that actually do you have periods of remission without surgical treatment? I’m just wondering how likely this is? People tell me all the time that I should just get off the medications and I can’t begin to tell you how annoying this is. I don’t think people have a clue what it’s like to live with this kind of pain, including our doctors.

V refers to Roman Numeral 5 —-the Fifth Cranial Nerve
V2 goes to the Maxilla —-your cheekbone area
V3 goes to the Mandible —- your jawbone area

A V2V3 injection is done in front of the ear with a long needle with steroids and a pain med .
It might go by another name —-but that is how it was coded by my former doc
I was surprised when he gave it up that I could not get anyone at Duke who would do it

For about ten years I had those every three months on top of pain meds . I had to have those numbing injections or the unbearable pain would return like clockwork

I think that is very similar to the type of nerve block I had. They passed a needle into my cheek at the position of my second to last top molar, then threaded through my jaw joint and injected the node behind the front of my ear. The numbing local Anithesia kept me only feeling pressure through my cheek but once the actual injection began I had horrid pain like a acidic burning tearing feeling down the back of my mouth, up into my cheek sinus and inside of my jaw bone at the top. It was horrible, in a different way but about as equally painful as my face can be on its own. I cried into the towel over my face and made sure to stay very still while gasping. At least it only lasted about 10 minutes. That was another reason that without making it to at least 2 months he relief I didn’t feel like doing it again.

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I wish you the best of luck-but also I wish you an especially skilled radiologist or surgeon(not sure who does it)that has empathy and time to treat you in a compassionate way .You are so young.You have tried so hard for many years.
You have been a cheer leader on this site.Always trying to help others.
Tears are in my eyes.I feel your anxiety .Please-know that whatever the outcome-and it will be a good outcome-you will still be you-but without the hideous pain.You will be able to act and have fun like some one your age should be doing.Best Wishes

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So sorry to hear at the young age of 30 you’re dealing with this horrible pain. I’ve had TN for 15+ years and had every procedure including MVD. Nothing really helped except Gamma Knife, I’ve had it done twice. Don’t worry it’s painless and over quickly. I fell asleep during the procedure. Let us know how you do, look forward to hearing from you! :hugs: btw I’m 64, my injury was a root canal, the RX I’m on is Carbamazepine and it works, so far no damage to any organs.

Thank you so much for your sweet words Ellen! It means a lot, I’m so greatful for my support group friends all around the world, I would be in a much darker place without you all.

Thanks for your story. From 6 years of this pain at age 30 looking forward the future is scary. My facial pain is only one of several chronic illnesses I have and treating one seems to often worsen another. It is a constant balance problem and I worry about how long I will last under the pressure and stress it causes. It isn’t fun to feel like your body is wearing out at not even mid life for most. But I plan to pack as much good life into my time as I can.

Please put a post the day before the treatment at about what time it will be.I will send the most good energy I have and I am pretty sure you will have a lot of people sending rays of love your way.One week from today -so only one week to go.
Try and relax as much as possible-do what it takes-I know you know how to do it.
Do whatever it takes to get through this week.
Funny videos,compassionate care-whatever it is -do it
But I am preaching to the one who knows more than I do about this stuff.
Hugs from afar

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Sending you love and light for a safe and pain free procedure.

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Ok! Today is the day! Alarm just went off. We have a bit of a drive to the hospital, but the procedure should be in about 4-5 hours from now. Nothing is ever set in stone in hospital time.

I am feeling pretty good about it at the moment. We will see if that lasts. My MRI yesterday caused a lot of pain from the pads and ear plugs putting pressure on my face, which was actually a good motivator for trying to get less pain. I am pretty short of sleep so hopefully I will nap afterwards.

Love you all, and thanks for the sweet words and support, I feel loved and like I am making the right choice at this time. I’ll post updates since it is how I hope with anxiety!

All done.

I’ve now made it home, got some food and pain killers, stopped some bleeding from the back of my head, and I am ready to SLEEP!