Thank you so much for the VERY kind words, La La & Granny. Both of your stories sounds sadly familiar to me. I too was pregnant with twins, but I was unable to carry to term due to having HELLP Syndrome again...just as I did with my pregnancy with my autistic son, Grant. They would be 15 now. I am wishy washy about my feelings...but often times feel the same way. If there was a reason it had to happen, it was that...who knows if they would have been disabled or not...and would it have been fair for them to be stuck with a mom who is always sick?! Maybe in my head, it is the way I make sense of it all. Whatever the case, it is what it is and it can't be changed. I'm so sorry for your loss. Time does not heal all wounds - especially when it's your baby (whether they are taken from you before you ever get a chance to hold them or if they are 80 years old).
I have wondered if I was beginning the stages of GN at times too. Although the pain of my ON radiates around and above my right year most times...I now sometimes get horrible pains IN my ear. It doesn't happen a lot but it happens enough to annoy me. When it happens, I feel like I am being stabbed non stop deep in my ear. I don't notice any hearing loss but my boyfriend has been saying (often) to me lately "No matter what I say, you say "Huh?" or "What?". I'm thinking it's either habit at this point or you really don't hear OR pay attention to anything I say". When he said it again yesterday, I replied with a "Huh?". He was not amused. Hahaha
I really do feel bad about it though because my mom is hard of hearing and it drives me crazy that she won't go get fitted for hearing aids. I just assumed it was because my dad was almost completely deaf since he was a child after an untreated high fever when he had the Chicken Pox.
The stabbing deep in the ear, would that most likely just come along with the ON territory or could that be more like GN? I have gone through a few stages where I have had problems swallowing and it's even been painful at times. That was when I first looked into GN. It seems like with many of us...once you begin getting neuralgias...it just keeps piling on with others.,
It sure does suck and it sure doesn't seem fair, but I have to say - No matter how crummy I feel many times, I am still thankful for the AMAZING people I have met along the way such as all of you, You all inspire me to keep pushing forward, especially when I feel like I am at the end of my rope!
Hope you're all having a pain free day! Hugs!! :o)
Lala, I am seeing a pain doc June 18th to see if a SCS will help my pain. I did not get anywhere with a specialist in ENT. He even said the geniculate nerve does not cause pain............hmmmmmm, I was not going to argue with him but that was how it ended. He said what I always thought the ENT profession would say, it is your TMJ again. Well, this pain is quite different from the tmj I had in '86. Since that jaw joint he said is only 1 mm away from this nerve complex, the geniculate ganglion I may have changes in my jaw. I have read a few posts on other sites of others with tmj and that joint can compress nerves, I don't know which ones, I think I saw TN and GN. I may have no other alternative but to see if a SCS with specific lead at the base of the skull will relieve the ear and facial pain, I don't know what will relieve the bitter taste but I am in left field again. I will post my visit when it happens and see what I come up with. I have been told because I have had so many fusions of the cervical spine, scar tissue will not allow the stimulation to get where it needs to go, thus the leads at the base of skull might be a try but I don't even know if this doc knows how to do that one. Sharon
I have been a a crazy whirl wind of TN/GN/ON hell the past several weeks.
I am seeing my ENT this afternoon for ethmoidal arterial nose bleeds. It is actually the artery behind the nasal bone that rests on the lower frontal lobe is what is bleeding. It gushes out my nose & mouth as it pours down my throat as well which causes horrific vomiting as well. There is no way to stop the bleeding unless I go to the hospital and they do a surgical procedure to stop the bleeding. I have had blood patches to stop it in the past. I have had three bleeds on the past 12 days. I believe he is going to want to do the surgery to repair the artery permanently. It freaks me out a bit because its another major surgery dealing with vessels on my brain like the MVD. He has to cut my face at the bridge of my nose up through my eyebrow line (in the middle). I will find out all this in about 14 hours.
Anyway, I was starting about the GN. My ENT says that it is quite painful and that when it flares it can cause temporary hearing loss and ear & sinus drainage. I have crazy ear drainage when my GN acts up and I always chalked it up to my allergies but my ENT said that it is from the GN because the systems in the ear are trying to lubricate and help calm the inflammation and that is why there is more waxy drainage. He said with all of that going on in and around the ear it can cause the temporary hearing loss which will reside when the acute attack has subsided. This has been exactly what I experience too. I am very shocked that the ENT said that GN is not painful. Maybe he should walk in our shoes for a day, maybe he will change his mind!
Good luck to you! I am still scared of the neurostimulator and my pain management doc is bring it up again when I see him again in 2 weeks especially after this last horrific flare.
Granny said:
Lala, I am seeing a pain doc June 18th to see if a SCS will help my pain. I did not get anywhere with a specialist in ENT. He even said the geniculate nerve does not cause pain............hmmmmmm, I was not going to argue with him but that was how it ended. He said what I always thought the ENT profession would say, it is your TMJ again. Well, this pain is quite different from the tmj I had in '86. Since that jaw joint he said is only 1 mm away from this nerve complex, the geniculate ganglion I may have changes in my jaw. I have read a few posts on other sites of others with tmj and that joint can compress nerves, I don't know which ones, I think I saw TN and GN. I may have no other alternative but to see if a SCS with specific lead at the base of the skull will relieve the ear and facial pain, I don't know what will relieve the bitter taste but I am in left field again. I will post my visit when it happens and see what I come up with. I have been told because I have had so many fusions of the cervical spine, scar tissue will not allow the stimulation to get where it needs to go, thus the leads at the base of skull might be a try but I don't even know if this doc knows how to do that one. Sharon
I keep getting bounced back and forth between my pain doc and the neuro. So asking my neuro about GN tomorrow and what does he know about treating it. He is into doing botox right now for me, but that is for the cervical pain, has gone into the scalp, only one time I got some relief. Now my pain doc who I thought knew something about neurostimulation says ask your neuro. I honestly don't think anyone knows what to do with these neuralgias, especially if you are atypical, first all the meds which I failed on and honestly I am probably getting the best they have to offer, some low dose gabapentin, baclofen, narcotic, botox, and rhizotomy for cervical pain. I was told in the beginning my facial pain and ear pain was coming from my neck, so blocking at C2-C3 so far has not relieved the ear pain. I would like to know more about this neurostimulation but can't find anyone that does it. Anyone here that finds out about this, let me know, because surgery has not been offered, they do not know where to do for me. Sharon
I have a neurostimulator. I have it for TN and ON. Got it in 2009 and it has been AMAZING. If I had to give it a number, I'd say it's reduced my pain by 80%. It's not perfect, not a cure, but has given me a lot of relief. Best decision I ever made.
Banner, please explain how and where your neurostimulator was placed. And where did you get this done. I am very interested in this. I do believe the nerves can be given a message to behave. But 80% is a big decrease in your pain. I don't think surgery can offer that, the healing is long term and not without issues. Thanks, Sharon
Yesterday I had an eval for a neurostimulator Swedish Pain and Headache Clinic. The doctor did a pretty good job of indicating what my problem is. Seems there are three problems. TN, migraine headaches, and a deep inner ear location of TN pain that a stimulator likely won’t affect. Each of these problems affect the other, causing pain sort of like a merry go round affect (my own analogy, not his!). He suggests that I may need to have a complete ablasion procedure before the neurostimulator would be accepted by my insurance, and because of the three problems, my pain may or may not be resolved enough to warrant going through all that. Certainly if I got a complete ablasion and the pain was worse,or not resolved, the neurostimulator device would be the only option available for pain relief along with drugs. I’m still researching options and getting more opinions from other specialists. Long road, wow.
I feel I am in the same position. I have three things wrong and they can not be fixed by on procedure. I only was able to figure out the 3 things thru a process of elimination. When you gain knowledge of your options and what the repercussions of the options are one is suddenly facing really tough decisions.
You are so right in describing the merry go round effect. and according to my head and researching it is true. Our Tri nerve is responsible for migraine headaches and TAC headache syndromes (trigeminal autonomic cephaligia) http://jnnp.bmj.com/content/72/suppl_2/ii19.full. Which I have.
Before I jump into a stimulator I need to know more. Turns out that a peripheral stimulator would not touch all the problems at the same time. The other con for me is ; Having a stimulator makes it so you can not have any more MRI's. I do not think I am done needing MRI's because my illness's are so complex and I have TN on the other side that still needs to be addressed. So after those two cons I am choosing to wait longer and seek other options of pain control. Maybe they will figure out a way to coil it up in our brain to make all the pain go away. Science is coming up with new stuff as we speak and I am very interested in getting to use these new things. For example magnetic therapy is now being used for depression and Stanford University is trying to fine tune it for pain control. They triangulate large magnets and pin point brain centers with it. Non invasive and sounds promising. The work that the facepain.org is doing is promising as well.
Hang in There, Tree
Notafraid said:
Yesterday I had an eval for a neurostimulator Swedish Pain and Headache Clinic. The doctor did a pretty good job of indicating what my problem is. Seems there are three problems. TN, migraine headaches, and a deep inner ear location of TN pain that a stimulator likely won't affect. Each of these problems affect the other, causing pain sort of like a merry go round affect (my own analogy, not his!). He suggests that I may need to have a complete ablasion procedure before the neurostimulator would be accepted by my insurance, and because of the three problems, my pain may or may not be resolved enough to warrant going through all that. Certainly if I got a complete ablasion and the pain was worse,or not resolved, the neurostimulator device would be the only option available for pain relief along with drugs. I'm still researching options and getting more opinions from other specialists. Long road, wow.
I had my stim implanted in Chicago in 2009, done by Dr. Ahmed Elborno. He is an EXCELLENT surgeon. I've seen photos of some other stims and I hate to sound negative but some of those surgeons are butchers. I had 4 leads placed. He made a small incision behind each ear where the leads where inserted. On the left I have one that covers my trigeminal nerve and one that covers my occipital nerve. On the right i have one on my trigeminal nerve and one on my supraorbital nerve (forehead). The battery is in my chest, just below my collarbone on the right. It's about 2 inches by 2 inches. The leads are tunneled under the skin...you cannot see them at all. I posted photos in my profile, if anyone is interested. I also blogged about my experience.
I think the key to the stimulator is having the leads put in the correct place. Some doctors put lead in the front and back of your head and hope it covers the pain in the middle but it doesn't work as well that way. You need to have the leads put directly on the nerves that cause pain for the best results. Seems like common sense but apparently it is not. Part of it is that not all surgeons are capable of doing peripheral nerve stimulators. It's a tricky surgery because the head has so many blood vessels and nerves. But a surgeon that can do a peripheral nerve stimulator should be able to put it on any nerve. You just may have to "shop around" or travel to find a good surgeon. I actually live in Wyoming and traveled to Chicago for my surgery. I have family in Chicago so it wasn't a huge deal and was definitely worth the trip.
I'm happy to try to answer any questions you may have. My stimulator has been a life saver. It really has been the most effective treatment for the pain I've suffered from for 15+ years.
Granny said:
Banner, please explain how and where your neurostimulator was placed. And where did you get this done. I am very interested in this. I do believe the nerves can be given a message to behave. But 80% is a big decrease in your pain. I don't think surgery can offer that, the healing is long term and not without issues. Thanks, Sharon
I've also had nerve ablation done. Not for head pain or TN, but for neck pain. It was great...easiest procedure ever. It was done quickly and the relief was immediate with no side effects. I certainly think it's worth a shot.
As for the multiple pain sources, I have that too. Like I said, my TN (and ON) are pretty well controlled now with my stimulator. But I have degenerative disc disease and some problems with my left shoulder so I have that pain to deal with. But honestly, at least getting SOME of it under control with the stimulator has made my life better and made the pain easier to deal with mentally. It seems like so few of us just have ONE issue. It is frustrating and overwhelming but breaking things down into smaller pieces to deal with can help.
Notafraid said:
Yesterday I had an eval for a neurostimulator Swedish Pain and Headache Clinic. The doctor did a pretty good job of indicating what my problem is. Seems there are three problems. TN, migraine headaches, and a deep inner ear location of TN pain that a stimulator likely won't affect. Each of these problems affect the other, causing pain sort of like a merry go round affect (my own analogy, not his!). He suggests that I may need to have a complete ablasion procedure before the neurostimulator would be accepted by my insurance, and because of the three problems, my pain may or may not be resolved enough to warrant going through all that. Certainly if I got a complete ablasion and the pain was worse,or not resolved, the neurostimulator device would be the only option available for pain relief along with drugs. I'm still researching options and getting more opinions from other specialists. Long road, wow.
Hey Banner, did you have to go through many loops with your insurance company before getting the okay for your stim?
Banner said:
I have a neurostimulator. I have it for TN and ON. Got it in 2009 and it has been AMAZING. If I had to give it a number, I’d say it’s reduced my pain by 80%. It’s not perfect, not a cure, but has given me a lot of relief. Best decision I ever made.
No. My insurance (BCBS) paid for it right away. But they've always been good about paying for things. They paid for Botox injections before they were FDA approved no problem.
However, this seems to be the biggest hurdle for most people. I think it is very dependent on the way things are coded. Some surgeons are very good at playing the game and have had a lot of experience. Others...not so much. I'd be happy to share the diagnosis and procedure codes that worked for me if you think they'd be any help at all.
There is actually a really great group on Facebook regarding occipital/peripheral nerve stimulation for head pain. There are some great resources there, including some good documents regarding dealing with insurance. I don't mean to pull anyone away from here but I'll give you the link in case anyone is interested. If not, I'd be happy to pull some of those documents off there and email them to anyone who wants them.
https://www.facebook.com/groups/232392623486874/
Notafraid said:
Hey Banner, did you have to go through many loops with your insurance company before getting the okay for your stim?
Banner said:I have a neurostimulator. I have it for TN and ON. Got it in 2009 and it has been AMAZING. If I had to give it a number, I'd say it's reduced my pain by 80%. It's not perfect, not a cure, but has given me a lot of relief. Best decision I ever made.
But were you able to get it no problem through your insurance?
Banner said:
No. My insurance (BCBS) paid for it right away. But they’ve always been good about paying for things. They paid for Botox injections before they were FDA approved no problem.
However, this seems to be the biggest hurdle for most people. I think it is very dependent on the way things are coded. Some surgeons are very good at playing the game and have had a lot of experience. Others…not so much. I’d be happy to share the diagnosis and procedure codes that worked for me if you think they’d be any help at all.
There is actually a really great group on Facebook regarding occipital/peripheral nerve stimulation for head pain. There are some great resources there, including some good documents regarding dealing with insurance. I don’t mean to pull anyone away from here but I’ll give you the link in case anyone is interested. If not, I’d be happy to pull some of those documents off there and email them to anyone who wants them.
https://www.facebook.com/groups/232392623486874/
Notafraid said:Hey Banner, did you have to go through many loops with your insurance company before getting the okay for your stim?
Banner said:I have a neurostimulator. I have it for TN and ON. Got it in 2009 and it has been AMAZING. If I had to give it a number, I’d say it’s reduced my pain by 80%. It’s not perfect, not a cure, but has given me a lot of relief. Best decision I ever made.
Yep.
Banner, thank you for your explanation of your stimulator. I see now yours is for TN and ON. I have GN, and my neuro told me neurostimulation is not being done for GN. Apparently they know how to do this for your pain but not GN yet. Sharon
What is GN?
I'm sorry, that's too bad :( Hopefully they will figure it out in the next few years. My understanding was they could put it on just about any nerve that was giving you pain. At least in theory. You have to find a surgeon that is actually capable of that!
Banner, my pain comes from the geniculate ganglion, the intermediate nerve and it is very deep...surgery to cut it is the option but you also have to have cranial nerves 5, 9 and 10 decompressed. So yes, they could get to those nerves but not the primary one. I am still very interested in UMPC in Pittsburgh. But will most likely wait now until spring to plan a trip. I live in Florida and I should not be complaining about winter coming here, but a cold wind is a cold wind and most of us do not like cold wind on our faces...lots of scarves in my closet! Sharon