I recently seen my pain clinic doc. Since the nerve blocks aren't working anymore he suggested a neurostimulator since the ON is so bad that it has actually gotten worse than the TN. I know that is hard to imagine.
Has anyone ever had this or know anything about this?
My friend has one in his back at the base of his spine. I know its the same concept but way different location.
Thanks!!
you may want to ask your doctor about a tens unit first, I have not had a neurostimulator before but think you may be able to find an external stimulator to try first. Just an idea
Hi, La La!
I realize it is now sometime later...but I am wondering if you have actually had the DBS placed or not? If so, how are you feeling? Do you like it? What are your thoughts?
Thanks for the idea Crushed. I have a home tens unit and it really doesn't help me anymore.
Unfortunately, my age is playing against me because I was diagnosed in my late 20's. I have been through most of the medications already and he wants to prepare me for this because he feels that once the meds stop working that the neurostimulator is my next best options.
I greatly appreciate everyone's thoughts, opinions, & suggestions.
I am getting a referral for this stimulator for OC and atypical facial pain, ear pain with pressure. I was ruled out for TN and ATN by one of docs on the TN site and he referred me to a pain doc for this treatment. I see the doctor May 8th, in the meantime I have started a new PT plan for my neck. I will let you know how this goes for me. I have seen a site where leads are also put directly in the neck and at the site of the nerves exiting at the base of the skull for ear pain and OC. I will look for it and see if I can attach this. Very interesting. The only downside I may have is I am fused at 3 levels and am arthritic in my neck, the stimulation might bounce off all the scar tissue and will not get to my referred pain, thus the additional lead at the base of the neck are done. Hope this gives you some hope. I will let you know, Sharon
I am finding out because of all the fusions I have I may have too much scar tissue for a SCS to work for me. Also, I had one of these in '95 for my first herniated disk in my neck, only got stimulation in some of the right areas because of scar tissue then for a c5-c6 herniated disk that did not get better after surgery. And, in the opinion of my PT who is actually a Dr. now in this field told me there has not been very much improvement with SCS since '95. Bummed...but if anyone here does not have a lot of surgery in the area needed to be treated worth a try. I am getting so many mixed opinions right now, I was referred by one of the doctors on this site for TN to see another pain management doctor to see if this is an option for me, he looked at all my MRI's and did not say anything about the scarring and arthritis being a problem so I am still going for this May 8th appointment.
I know mine behaves somewhat like geniculate but it is not that one, I am mimicking so many of the neuralgias, now I am simply back to atypical facial pain, I have a history of tmj, but it is not tmj, just the muscle problems with that one.
Some modest improvement in a new PT program and I started something new for pain, time released morphine, so far somewhat helpful with the spikes. Now my pain management doctor wants to do rhizotomy at levels of my neck c2 to c7 again. You have to try this before insurance will cover a SCS trial or implant. Going to stick with the botox for the cervical pain. I am on an advantage plan with medicare and to be honest they simply want you to take cheap drugs. My PT will get stopped after 6 visits, although they asked for 24, 3x week which is 2 months of continuous therapy, seems conservative and if I am allowed it less costly than rhizotomy or SCS. I am getting hands on release of the upper levels of my spine that I can not move, something I did not get before and the stretching program is very different. If you have a bad neck do not do the Erran Mattes stretching, it is bolistic stretching and not good for someone fused.
I just keep on 'truckin, take lots of supplements for inflammation and endorphins. Swim 4 times a week. I have a herniated disk at c7-t1 but my neurosurgeon thinks my neck has never looked better, had lots of referred pain to my arms when it happened but that has gotten better on it's own, too many fusions already, not losing that one. Neurosurgeons won't admit to the scarring and arthritis you get after fusions causing all the problems you had prior to surgery, you do get less referred pain to your extremities and that is all they really care about, but down the road all that surgery reduces motion, scars you up and riddles you with arthritis and then all that limited motion causes improper neck posture, spasm, pain, spasm and you can get a lot of referred pain to the head, ears and face.
All PT groups will sell their program to you as the cure all for everything, so I still going to look at options for rhizotomy and SCS.
I wouldn't wish myself or anyone I have read replies to discussions to the TN, ATN, GN, GP and ON dx's, if you truly have them they are unbearable stabbing electric shock like pain. OC however, my pain PA is unsure I have but the PT says I do have this one. You can mimic a lot of these facial neuralgias with neck problems and OC, but if it doesn't stab electric shock like pain, unlikely you have them but does not mean you don't have pain referred from another area, especially the upper cervical that will go to the head, ears and face. Anyone know better than this?
Honestly this site has been a world of good info on head and facial pain...thank goodness I have a PT, neuro, pain doc and maybe an new pain doc willing to try more with me as I do not like being on drugs.
Thanks for the response on geniculate, but my brain MRI came back normal, so frustrating because normal MRI's does not mean you don't have any of these horrible neuralgias, everything I have read says it is a clinical dx...but if surgeons do not hear stabbing electric-shock they will not do surgery or any type of pain relieving procedure. Those that are ATN do not get a good response, sometimes get worse. Sharon
I understand how age can work against you in some cases when it comes to neuralgias. Mine began at age 17 shortly after a Maxillofacial Jaw Reconstruction surgery. I am now 26+ years into this. I am only 43 and I have done about everything my insurance will allow me to. I was optimistic years ago...but now, not so much. I have two choices...tough it out or call it quits. I'm divorced and raising my 20 year old autistic son alone so calling it quits is not an option. I chose to bring him into this world and he needs 24/7 care so his needs come before mine.
Sharon, all I can say is WOW!!
You are right though you just got to keep truckin'. That is what I have always done but sometimes I just get stuck like "wow, when did all this happen to me & what did I do that was so bad to have all this pain?" The answer is nothing. I was just unfortunate enough to get this horrible pain.
I have Left-sided Occipital Neuralgia, Geniculate Neuralgia, Incisional Neuralgia from the MVD, & Type II (atypical) Trigeminal Neuralgia. If that wasn't enough, I was blessed to develop Type I (typical) Trigeminal Neuralgia on the Right side.
I am having problems with my EKG's, it seems that the methadone is starting to cause some heart rhythm irregularities. I see my Pain Management Doctor on April 25th. I am fearful that he is going to want to take me off the methadone which has greatly helped.
I was taken off the Tegretol (carbamazepine) in December 2012 & now that it is completely out of my system I have begun have more frequent & intense attacks.
Mindy, you are awesome. I applaud you for doing everything you do because I don't know how people can deal with this and raise a family let alone raise an Autistic child alone. My nephew is Autistic and I know the demand he puts on my sister and he is only 12. He is a twin and has two older siblings as well.
I had twins, my son lived for 33 minutes and my daughter was born sleeping. Everyone kept telling me it happened for a reason, blah, blah, blah... I never wanted to hear that because it made me even madder that my children were gone. Now I feel differently because they would be 8 now & they would have a Mom that lives in constant pain and they would have been cheated out of the great Mom that I would have been before TN entered my life. I have a hard time making it to all my nieces & nephews events so I can only imagine how hard it would be with my own children.
I was once optimistic that I would kick TN's butt like I did Ovarian Cancer but man was I wrong. Now, I just keep on truckin' with a smile and laughter because if I don't I think I would just cry & be completely depressed. So I make jokes & laugh at myself because if I don't I think I would go nuts! LOL!
Everyone I have met on this site has been amazing and inspiring. I thank you all for your thoughts and appreciate you taking the time for me. I pray for pain free (as much as we can be) days ahead for you!!!
Mindy, you remind of myself, I began with tmj when I was 23, surgery at 29, facial pain started then but did not go away after tmj surgery, followed by herniated disk c5-c6, pain pump, then the facial pain went into remission for a long time, just brief episodes that resolved with pt, more herniated disks, laminectomy with full revision of all my hardware in '09 and then 1 year 6 months ago, more neck pain, and now this full blown whatever head, neck and facial pain, behaves like OC, ATN and maybe GN, but I am not getting a dx for the ATN or GN, possible OC with atypical facial pain.........ears hurt a lot, full feeling, ENT ruled out ear problems. I am being told all this pain is coming from my cervical spine, back in PT again, sometimes I just get exhausted getting back on the treadmill searching for anything to get rid of the pain. Insurance is terrible, they would rather pay for lots of pain pills. I have so much scarring my pain doc does not think SCS will help, but I am seeing another one for a 2nd opinion, these leads can be located off the spine for referred pain from the upper cervical.
You are surely brave, hard to raise a son with issues on your own, but I will admit raising my 2 children kept me going, and now I am a grandmother and very involved helping my daughter with a 2 year old grandson and 8 month old granddaughter, like to paint, swim 4 times a week and stretch, just trying to keep some quality in your life....hard to concentrate when your head feels like it is going to blow up.
My pain doc wants to do some blocks again, maybe rhizotomy of the cervical levels again in July, insurance will not pay to have this but once a year. I will probably get denied further pt visits after my 6th.
As much as I would like to hide in my bed, I do get myself up to spend time with my grandchildren and they are the best natural endorphins! I am also fused through my entire lumbar spine, nerve injury from surgery and spinal cord injury from the pain pump I no longer have since 2000.
My pt told me they have not made many advances with SCS since '95, I had one for four years but it was pulled with the pain pump.
My husband left me over 6 years ago, we were separated, I let him go, he died in '07, tragic event.
I get to feeling desperate if I am not trying something, I hope to be getting botox next month as that has been helpful. One day I will simply stop searching for treatment as all of it is temporary or fails, meds failed, pain meds I am on but dislike this last resort. Some days are better, some are horrible and I get up hoping it will be a better day. Wishing you a better day, Sharon
Mindy Utz said:
I understand how age can work against you in some cases when it comes to neuralgias. Mine began at age 17 shortly after a Maxillofacial Jaw Reconstruction surgery. I am now 26+ years into this. I am only 43 and I have done about everything my insurance will allow me to. I was optimistic years ago...but now, not so much. I have two choices...tough it out or call it quits. I'm divorced and raising my 20 year old autistic son alone so calling it quits is not an option. I chose to bring him into this world and he needs 24/7 care so his needs come before mine.
Lala, I just read about you losing your babies....I want you to know don't ever think had they survived you would not have been able to be a good mother....I raised 2 children with severe chronic pain, tmj first, then herniated neck disk problems so now that I am a grandmother I find myself right back there again, spending a long day helping my daughter with a 2 year old potty training and nursing an 8 month old, it all comes back....however at 57 now I can go home to peace and quiet and rest anyway.............I am so sorry for your loss...do try to enjoy those nieces and nephews when you can. Sharon
Thank you Sharon!! You have a lot of the same spinal issues that my Mom has and she is beginning to experience signs & symptoms of Geniculate Neuralgia. She has an appointment to see her Neurologist to get an accurate diagnosis.
It is ironic that you mention TMJ because in 2005 I had a severe infection in my left lower jaw that nearly killed me. It took six months for the doctors to finally figure out where it was & by that point I was literally circling the drain. I had not eaten in nearly a week, I was severely dehydrated, my blood sugar was 855. I was not Diabetic at the time. The infection caused the Diabetes. My white count was so high and so was my fever. I was unconscious for days. When they started the IV antibiotics the left side of my face swelled like the elephant man. Alas, the infection was in my lower jaw & had invaded the lower jaw bone. My gums had completely engulfed my lower teeth and disintegrated them., I lost all of those teeth and the majority of my lower jaw bone. I don't remember any of this but my terrified parents took pictures because they knew I would never believe it. I don't remember any of it. For six months after the surgery I had severe pain in the left side of my face and I seen so many different dental professionals who all said it was TMJ. The pain just disappeared one day. Then all of a sudden in 2009 it came back with a vengeance. Then in 2010, I had left MVD. In 2002, I was rear ended on the Parkway going into Pittsburgh where I hit the left side of my forehead on the steering wheel which caused a severe concussion.
These events make me wonder if they contributed to my TN, ON, & GN; after hearing your stories. Over the years in the quest to find out exactly what I had that was causing the horrific pain I have seen many dental professionals who have given me unnecessary root canals and pulled teeth. I ended up getting lucky when I had to change family doctors and my new PCP's grandfather had TN so he diagnosed my right away and sent me off to Dr, Jeannetta at Allegheny General Hospital in Pittsburgh where I have been treated ever since.
I do enjoy every moment with my nieces and nephews. In fact I spent yesterday afternoon with my five year old niece Faith and 2 year old nephew Jackson at the park. It was such a beautiful day & it was 80 degrees. We were at the park on the swings and had so much fun!! Makes it all worth while!
Lala, there is a relationship with trauma and tmj and of course cervical. Hard for me to write about but when I was 27 my husband hit me on the right side of my face and then tmj came knocking at my door.
I can relate to infection, yes I have been unconscious from infection too but not as long as you, all my infections were after spinal surgery for the lumbar spine, almost septic once with abcesses in my abdomen after an attempt to do anterior fusion failed because the general surgeon cut a main blood vessel and I almost died bleeding out.
You have been plagued with pain since your 20's like me, I wish I could say it gets better, it can, my facial pain went away for a long time but returned and even worse that before.
I have some hearing loss, I have to get my hearing checked by another specialist....I just read about pure tone hearing loss and GN...........here I go again, so the ENT wants me to see a surgeon for head, neck and ear if my hearing test comes back positive. Can't figure out why the TN neuro on this site did not figure that one out but he just does TN. When they specialize in one area they don't know much about anything else.
You are still very young at 43, hang in there and I like that you just spent some time with your niece and nephew.
Of course now that I live alone I can't imagine taking care of a man or young children 24/7 but I am 57 now and that time has come and gone, but I do love to take care of my grands...I do everything, baths, diapers, feeding, and lots of play time.
When your history gets long and complicated, docs sometimes just look the other way...can't help this one and when you have had so many failures and complications they don't want to touch you.
I have a great neuro who may do botox again, getting nerve blocks again for the cervical, all of these are temporary but I will take what I can get. You take care and I am glad I met you on this page. Sharon
Thanks Sharon. I am so happy to have met you as well.
I also have some hearing loss from the GN. I notice that when I have break through flares my hearing gets even worse on that side.
Sadly, it is true about the docs not wanting to touch you when you have a long & complicated history. I have unfortunately run across that myself.
Best of luck to you!
I think if you do a search on You Tube, you will find some info on this. There may be a 3-part video of a guy who suffered from TN and/or ON.
I did see this, thank you, Sharon
JOSEPH G GRILLO said:
I think if you do a search on You Tube, you will find some info on this. There may be a 3-part video of a guy who suffered from TN and/or ON.
Sadly, very true, I am getting a hearing test done tomorrow, I blew it off as incidental, but now I think it may be related to GN, you can also be atypical with this one which makes it even more difficult to treat. I read about a young man who had MVD and did not get relief, his doctor told him he was atypical GN. Also read an MRI has to be done at this level to really see anything and sometimes nothing is seen on MRI, doesn't mean you don't have it, so I am calling ENT surgeons today that treat this, not a neurosurgeon. Everything we share on this site is not rare to us, but is rare to the medical professionals. The ENT I saw recommended I see an Otorarnynologist, so looking today. I was sure it was TN or ATN, I don't have the stabbing pains all the time, just when chewing.........it has been progressive, just started with a full feeling or pressure in one ear, then bam right sided ear pain, the pressure makes you feel like your head is going to blow up and the pain is horrible. They will go in on a negative MRI, but mine does say I have an artery coursing towards the acousticus IAC, the radiologist states on the result this may be causing my left sided pain but the neurosurgeon did not see this as an issue, the ENT did, so I will let you all know what I come up with. Thank you for your response. Sharon
La La said:
Thanks Sharon. I am so happy to have met you as well.
I also have some hearing loss from the GN. I notice that when I have break through flares my hearing gets even worse on that side.
Sadly, it is true about the docs not wanting to touch you when you have a long & complicated history. I have unfortunately run across that myself.
Best of luck to you!
Hello,
I was looking for more information on neurostimulators so that I can make an educated decision on what is next for me. I will be seeing my neurosurgeon in June so I wanted to find out from the experts which kind is best for my complex pains or would I need two different kinds.. I am a person who can not tolerate the side effects from the medications.I have Bilateral TN 1 and left sided TN 2 (after my recent MVD 12 weeks post op) and I have ON. I used to have both TN1 & 2 on the left but the surgery helped to reduce it to more like a neuropathy taking away most sharp spontaneous stabs. So I got about 50% better which I am satisfied with considering the amount of pain and the length of time I have had TN (20 yrs)(Surgeon found 2 vessels compressing TN). But I am not to keen on the idea of radiosurgery or any other thru the face procedure because I do not want to eventually have both sides of my face end up numb.
Also what are some of your ON symptoms? Do you guys get random sharp stabbing pains in the back of your head all the way to your forehead and eyebrow. My pain changes, it can feel like 20 bee stings in a large circular 3" pattern or like when you hit your head by standing up under the cupboard or small spot like a hammer hit you. They also move around but I have about 4 consistent spots, one really bad one that got worse after the MVD. Do you have constant pressure headache like your head squeezed by a hat too tight. Do your eyes and around them hurt. Do you feel your TN pain originate from its origin up over head and your ON pain originate at your neck and wrap over head? Do you have neck pain? Does light and noise a trigger to set off ON or TN. Both can bring mine to a vomiting migraine with in 10 mins of over exposure. Do your eyes have twitches or quivers? Even pre-MVD my left eye drags doctors think its from TN V1 not ON now my right side is getting worse and that eye is really bothering me. Often feels like cotton in the corner, some relief by eye drops.
Not sure if I have GN but noise sure hurts and is a trigger for TN and ON. My tolerance did get better after MVD :-) I have an ear ache today which comes and goes. It can feel like being at high altitude or an infection. I have to drive over a mountain pass often and that brings on more pain every time. Got to go put some drops in my eyes, blurry today with scratchy corner. Reading bringing on stronger headache. Ugh!
Healing Together, Tree
You have a very complex pain issue....can you have all of these, or just a hint of them. I think so, I have a very complex pain issue with the head, neck and face. I am not ATN or TN, but possibly ON and GN and also a history of tmj and cervical fusion at 3 levels of my neck, 57, arthritis and scarring a big problem with the neck.
I am seeing a pain doc referred to me by one to the neurosurgeons on this site in the Tampa, FL area on May 6th to consider a stimulator for the ear pain from GN and the OC from my neck problems. I will let you know how it goes. I need leads not just at the spinal level but at the base of the skull to catch the ear pain.
Seeing one more surgeon, an ENT in otorneurology, to see if I can benefit from surgery for GN...I have a terrible bitter taste in my mouth, the ears feel like they are going to explode from pressure and when mixed with the neck and OC my head feels like it is going to blow up...sorry, you feel so terrible. It is possible to have a very complex pain problem with all of these playing a role, but it makes it very difficult for a doctor to treat, they often say it is coming from one of the others and do not recognize you could be having them all.
Everything I have read and the neurosurgeon I saw on this site does not recommend having those other procedures for your TN, they could make you worse. Be cautious. I will let you know what this pain doc tells me, a pain doc I see locally has already said because of all the scarring I have from fusions a stimulator won't work for my neck but he does not know how to put leads away from the neck at the base of the skull to help with ear pain. Sharon
My surgeon has been playing process of illumination to try and pinpoint exactly or more exactly where the pain centers are. We started with a sphenolganglion block, This lasted three days only but did tell us that the trigeminal nerve was definitely involved. Then the next process was Botox injections in my scalp to see if eliminating some headaches would eliminate some trigeminal pain. It does help some with the trigeminal pain but not Not a solution only a pain reduction without a pill. Had to do something because the scalp pain was causing 3 to 4 migraines the week completely debilitating me to a darkroom and could not lay my head on a pillow to sleep. After getting all that settled and pain more managed then we did the MVD. The MVD has calm things down enough for me to be able to recognize that pain comes from different places. One step at a time, it is a slow process.
I appreciate that you will let me know about your appointment next week.
Tree
Tree, what does that mean, interesting name? You do not need to explain. I am Granny but I am signing with my first name. Exactly the process of elimination and ruling out is the only way to find out where the pain is coming from. I am sorry MVD did not resolve all your pain and may have made some things worse.
I have wondered about the same block, the sphenologanglion for myself. I am trying to find out if mine is GN but it is presenting somewhat atypically but it does not rule out surgery to eliminate some of the pain I am having. An ENT in otorneurology, never spell this right, but a neurosurgeon that specializes in the nerves for GN, they also know how to do TN. My problem is I have so much going on with my neck but nerve blocks did not eliminate the ear pain so that one can't be coming from my neck. My PT says it is coming from the neck so I will keep coming for pt, after 7 visits no improvement, and I only have 19 visits covered on my plan...of course they will use them up even if it doesn't help, my neck feels better sometimes. But the worst pain is the GN pain and then the ON, the ON can be helped with pt but I need a hands on and the more I go the lazier they get working with me. The GN is not going to respond to pt for my neck. I did tell you I did see something googling about a patient that did get leads from a SCS at the base of the skull to help with ear pain and ON...so I will let you know.
And oh yes, I know exactly what you mean by the head pressure. I use a head band to hold my hair back to wash my face and then I take it off because I can't stand it. When I lie down a minute later I have to check to see if I took the head band off because I always feel like a tight head band is on my head. The ear pain and pressure along with the head pressure makes me feel like my head is going to burst. And yes, my neck pain is upper cervical and comes from the back of my scalp and radiates throughout my entire head, ears hurt, eyes water, light sensitivity, sound sensitivity, some loss of hearing, vomiting sometimes, have had auras too. It is not a migraine, but ON is triggered at the back of your scalp and upper cervical, I think c2 to c4 are involved but you don't have to have compression on those nerves at the spine, it can be further out from other cause that compress the bundle of nerves from c2 to c3 that go to the ears and head and can cause ON. I see yours triggers from the base of your neck and skull, that is very typical of ON, mine comes from that area and further out. I don't think there is much they can do for ON surgically, it is meds, pt, cold, heat and I too can not tolerate all those drugs like tegretol, lyrica, cymbalta to name a few.
Even if I do get MVD for the GN, it won't eliminate the ON coming from my neck. So I will be trying to find out if the SCS will help me out. I think this site I googled was for someone with ear pain and ON and the leads are placed at the back of the scalp and the spine. This is a big deal for insurance, you have to go through nerve blocks, failed rhizotomy and then they might pay for it...it is very expensive.
I know exactly where you are in all of this, it is hard to get treatment for multiple causes of head and facial pain. I have a history of tmj and it is not that but I have been told it is and get thrown under the bus. I don't know if you are a woman, but woman get hit with the emotional stress thing and are told to go see a pshyco..someone.
I do know I am seeing someone very up to date with SCS, he was referred to me by a neurosurgeon from this site that said he would never do radiosurgery, I think it may be called radio-frequency something and he has seen it only make TN worse. He will only do MVD.
This support group is the only place you can truly say how your head and face feels and we all believe you! I will keep in touch with you. Sharon
Tree69 said:
My surgeon has been playing process of illumination to try and pinpoint exactly or more exactly where the pain centers are. We started with a sphenolganglion block, This lasted three days only but did tell us that the trigeminal nerve was definitely involved. Then the next process was Botox injections in my scalp to see if eliminating some headaches would eliminate some trigeminal pain. It does help some with the trigeminal pain but not Not a solution only a pain reduction without a pill. Had to do something because the scalp pain was causing 3 to 4 migraines the week completely debilitating me to a darkroom and could not lay my head on a pillow to sleep. After getting all that settled and pain more managed then we did the MVD. The MVD has calm things down enough for me to be able to recognize that pain comes from different places. One step at a time, it is a slow process.
I appreciate that you will let me know about your appointment next week.
Tree