Hey friends...After receiving a steroid nerve block last month with no results my Neurologist(s) figure that the damage to the trigeminal is too far gone (16 months) to get relief of any kind by nerve block. Now they are recommending I have gamma knife surgery. I have done lots of research and the neurosurgeon that I have been referred to has experience in the thousands but I want to get info from actual patients of this procedure. Also I am having trouble coming up with questions to ask him before I make a decision to try this. I believe my trigeminal pain was caused by a severe case of the shingles that was preceeded by severe ear pain (trigeminal nerve) by 3 days. One neuro says yep, the others are not so sure. Because I had no rash on my face or near the ear they have issues with that being the cause of of my TN pain. I would so appreciate anyones input on this. Thank you! Always~Laurel
DEFINITELY check with others before making this decision. I have decided that when the time comes that meds aren't working at all, then I will just go on and have the MVD. I have type 1. Do you have type 1 or type 2? That could be a factor in your decision as well. MVD has the highest success in patients with type 1.
You're saying your neurologist says your trigeminal nerve is damaged too much for nerve blocks? I'm curious about how he even did nerve blocks--I'm guessing it was just for a branch of the nerve, right?
Like Donna says above, there are many things to consider...do you have TN? If so, what is your pain like? Do you get short jolts of pain that are lancinating, and end pretty quickly? Or does it burn all the time? Have you had a MRI that is very thin-sliced, with contrast? Does it reveal a compression? Etc.
I agree that a MVD is best with Classic, or TN type 1. If all this is gobbled-goop, spend some time becoming educated about TN if you are not yet. This is the best place to do so--fabulous site!!
One more note--Gamma Knife is NOT a good alternative if your nerve is already damaged. Damaged nerves--ones that are already damaged to the point that you are experiencing constant burning are not ones that respond to any kind of surgery. However, this doesn't mean that you are without pain relief!
Yes Judi, the Pain Clinic went for V3 even though I don't have typical V3 pain. The pain is "strictly" centered down the ear canal and is 'ice pick' pain and if let to go too long it will produce electrical shocks in to the lower jaw as well. If I try to see if the pain has changed I get a stiff no! My TN pain is constant and it is severe taking little time to take me to tears and the 10 pain level. I can control my pain with giant doses of Norco and Motrin that lasts @ 5 hours. I take Neurotin 2400mgone Ne a day as well. Tegretol 600mg. My med list is like an 80 yr old for various ailments. The interactions are making me ill. The one Neuro thinks I have blood vessels pinching the TN and why he recommends the GK surgery. I now have more questions to ask the surgeon. Thank you so much...<3
Judi from Virginia said:
You're saying your neurologist says your trigeminal nerve is damaged too much for nerve blocks? I'm curious about how he even did nerve blocks--I'm guessing it was just for a branch of the nerve, right?
Like Donna says above, there are many things to consider...do you have TN? If so, what is your pain like? Do you get short jolts of pain that are lancinating, and end pretty quickly? Or does it burn all the time? Have you had a MRI that is very thin-sliced, with contrast? Does it reveal a compression? Etc.
I agree that a MVD is best with Classic, or TN type 1. If all this is gobbled-goop, spend some time becoming educated about TN if you are not yet. This is the best place to do so--fabulous site!!
One more note--Gamma Knife is NOT a good alternative if your nerve is already damaged. Damaged nerves--ones that are already damaged to the point that you are experiencing constant burning are not ones that respond to any kind of surgery. However, this doesn't mean that you are without pain relief!
The last diagnosis was geniculate neuralgia but I've had diagnosis of type 2 (?) I guess, stemming from shingles. Three Dr.s said it was a form of post-herpatic neuralgia. With all that I read though, I wonder if TN was just waiting for the moment for I have been in 6 auto accidents with head and neck injuries in all. Cracked my skull open in the 70's as well so who knows what triggered it or what kind I have. I just have it and it hurts all the time unless I am heavily medicated. My quality of life sucks, as you all prolly know. I'm desperate for some kind of relief other than the gut wrenching drugs. Each day I get sicker and sicker from all the meds. I'm all done, know what I mean? Thanks for the reply Donna! Always~Laurel
Donna Cook Turnage said:
DEFINITELY check with others before making this decision. I have decided that when the time comes that meds aren't working at all, then I will just go on and have the MVD. I have type 1. Do you have type 1 or type 2? That could be a factor in your decision as well. MVD has the highest success in patients with type 1.
Geesh...somehow I sent my old reply rather than my new one--computer genius I am NOT. Let me try this again!
Given what you wrote, you are definitely ready to be talking to possibly a neurologist who can better diagnose you, or else a neurosurgeon who will do so. Since you get shocks, you might be a candidate for a MVD, with lesser medication if you still have some break-through pain.
Are you familiar with the book "Striking Back" by George Weigel? It could use a good updating, but George isn't interested; he and I have talked about one thing we wish it said--that we both believe it is wise to study up enough to have a good feel for what kind of surgery you are most considering before consulting with surgeons because they have very different kinds of expertise which influence them in their recommendations. I would be happy to help you develop some ideas and questions...you can contact me through my site. www.GreatPainGreaterGod.com
Thank you again Judi...I will be in touch <3 Always~Laurel
Judi from Virginia said:
Geesh...somehow I sent my old reply rather than my new one--computer genius I am NOT. Let me try this again!
Given what you wrote, you are definitely ready to be talking to possibly a neurologist who can better diagnose you, or else a neurosurgeon who will do so. Since you get shocks, you might be a candidate for a MVD, with lesser medication if you still have some break-through pain.
Are you familiar with the book "Striking Back" by George Weigel? It could use a good updating, but George isn't interested; he and I have talked about one thing we wish it said--that we both believe it is wise to study up enough to have a good feel for what kind of surgery you are most considering before consulting with surgeons because they have very different kinds of expertise which influence them in their recommendations. I would be happy to help you develop some ideas and questions...you can contact me through my site. www.GreatPainGreaterGod.com
I think there is a Gamma Knife group if you click on the Groups Tab above.....
If you are a candidate for MVD..... and you do gamma knife first, chances get slimmer that MVD works good.
Keep researching and asking - get a second opinion if needed
Thank you!
Kc Dancer Kc said:
I think there is a Gamma Knife group if you click on the Groups Tab above.....
If you are a candidate for MVD..... and you do gamma knife first, chances get slimmer that MVD works good.
Keep researching and asking - get a second opinion if needed
Kc Dancer sounds like she's done her research...you absolutely get your best results with your first surgery. That's why, NO MATTER HOW BAD IT HURTS, it's better to do the work you need to do (research, talk to others, call and talk to several surgical doctor offices, consult with at least 2 surgeons) before making such a huge decision as brain surgery. AND do NOT believe any surgeon who wants to tell you that Gamma Knife is a simple thing because it's non-invasive and out-patient. Gamma is highly invasive..lives inside you as active radiation for a long, long time. There's no such thing as non-invasive anything when it comes to the brain.
Don't dismay! You are not alone. There is hope and help for you. Lots of home remedies as well. Not getting too thirsty? Too hungry? Too full? Too tired? Too cold? Too hot? Too overworked? Each of these will turn up your pain receptors.
As far as pain meds go, I take several as well...and have experimented with kinds and dosages through the years. I don't like it..who does. But, I've found the dosage and kind that work for me...at least for this season in my journey. You will too.
It will get better...it will.
Wow...I read this, Laurel, and it sounds too familiar. I know too many, like you and like me, who suffer with on-going pain. Falling out of trees, having multiple car accidents, coming down with strange illnesses, and combinations of many happenings all out of our control. I've surely been to that place of saying, "I'm done." If you go to my site, you'll probably identify to why, at one point, I decided I was finished with the whole mess and decided to end it. Ironically, what kept me from taking my life was my teenage daughter who was such a mess that I couldn't leave my husband alone to raise her! My neurosurgeon, Ben Carson, helped me put perspective on it, "No matter how much it hurts now, there will always be another door to walk through." Keep walking, Laurel! There are people, no doubt, who love you and need you here. Answers will arrive to help you.
Signing off for the day with a prayer for your strength and enough hope to get you through this awful pain day.
shinglesdidit said:
The last diagnosis was geniculate neuralgia but I've had diagnosis of type 2 (?) I guess, stemming from shingles. Three Dr.s said it was a form of post-herpatic neuralgia. With all that I read though, I wonder if TN was just waiting for the moment for I have been in 6 auto accidents with head and neck injuries in all. Cracked my skull open in the 70's as well so who knows what triggered it or what kind I have. I just have it and it hurts all the time unless I am heavily medicated. My quality of life sucks, as you all prolly know. I'm desperate for some kind of relief other than the gut wrenching drugs. Each day I get sicker and sicker from all the meds. I'm all done, know what I mean? Thanks for the reply Donna! Always~Laurel
Donna Cook Turnage said:DEFINITELY check with others before making this decision. I have decided that when the time comes that meds aren't working at all, then I will just go on and have the MVD. I have type 1. Do you have type 1 or type 2? That could be a factor in your decision as well. MVD has the highest success in patients with type 1.
Ladies, thank you for your thoughts and prayers. What I didn't tell you when I wrote yesterday is that I was going for a consult with a GK specialist. Hubby accompanied me with his calm demeanor and you all were with me with your advise and comfort fresh. Long story short, I will not be doing the GK surgery. The risks being too high and the success rate for geniculate neuralgia less than 50%. Dr. Copeland didn't really have good news for me saying that when he hears that the meds, such as what I am taking, don't work, it's a pretty good indicator that the GK won't work as well or any other procedure, invasive or non. Now I need to read up on this "unusual" diagnosis. I hope to find a med that will work longer for me so that I'm not dosing so often ...I guess from talking to him that new medication will be the route I'll want to explore. So...anyway, although I left in tears from the hopelessness I feel. I am glad to be no longer considering surgery. It just won't help in my case. I will now dive into any info I can find here on GN (there is next to nothing when you google geniculate neuralgia) and continue to reach out to all of you if that's okay. There is an awful lot of stress under this roof of 10 and my problems are not the ones with the highest priority.
Thank you again everyone for taking the time, opening your hearts and reaching out. Your feathery wings are showing :o)
Peace n Love Always~Laurel
Judi from Virginia said:
Wow...I read this, Laurel, and it sounds too familiar. I know too many, like you and like me, who suffer with on-going pain. Falling out of trees, having multiple car accidents, coming down with strange illnesses, and combinations of many happenings all out of our control. I've surely been to that place of saying, "I'm done." If you go to my site, you'll probably identify to why, at one point, I decided I was finished with the whole mess and decided to end it. Ironically, what kept me from taking my life was my teenage daughter who was such a mess that I couldn't leave my husband alone to raise her! My neurosurgeon, Ben Carson, helped me put perspective on it, "No matter how much it hurts now, there will always be another door to walk through." Keep walking, Laurel! There are people, no doubt, who love you and need you here. Answers will arrive to help you.
Signing off for the day with a prayer for your strength and enough hope to get you through this awful pain day.
shinglesdidit said:The last diagnosis was geniculate neuralgia but I've had diagnosis of type 2 (?) I guess, stemming from shingles. Three Dr.s said it was a form of post-herpatic neuralgia. With all that I read though, I wonder if TN was just waiting for the moment for I have been in 6 auto accidents with head and neck injuries in all. Cracked my skull open in the 70's as well so who knows what triggered it or what kind I have. I just have it and it hurts all the time unless I am heavily medicated. My quality of life sucks, as you all prolly know. I'm desperate for some kind of relief other than the gut wrenching drugs. Each day I get sicker and sicker from all the meds. I'm all done, know what I mean? Thanks for the reply Donna! Always~Laurel
Donna Cook Turnage said:DEFINITELY check with others before making this decision. I have decided that when the time comes that meds aren't working at all, then I will just go on and have the MVD. I have type 1. Do you have type 1 or type 2? That could be a factor in your decision as well. MVD has the highest success in patients with type 1.
Thank you for your update sweetie! You have the right mindset........dig up ALL you can and then go back and discuss those options. Good luck to you!
Donna is so wise! So, now you go forward; but it's okay to give yourself some space to grieve as well. I have found it healthy for me to do so--because it would be wonderful if surgery could have been a remedy. I pray medications will help manage your pain. There will always be another door to walk through...keep walking. And know you are never alone.