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Living With Facial Pain

ORTHOGONAL CHIROPRACTIC (upper cervical care)


#1

Came home from my upper cervical care appointment about 2 hours ago. I was having pain earlier today, on and off all day, but I'm finding noticeable relief tonight. Got through my dinner with no pain in my gums, teeth or cheek. It's weird, when she palpated my neck between C1 and C2 on the right side, I experienced a stabbing pain in my right cheek, each time. Like 5 times in a row. That never happened before.

I have been seeing this talented doctor of chiropractic several times each week since early February 2014, but stopped 2 weeks ago, as I was out of town for a long weekend with my husband Bob, consulting with a neurosurgeon in Baltimore. When I came home I was too tired to get myself to the chiropractor. My pain has noticeably increased over these past 2 weeks without chiropractic care...is it possible that the adjustments were helping more than I thought?

Please let me know what your personal story has been regarding upper cervical care. I have read that there are only about 1,000 Orthogonal Chiropractors in the US. The adjustments are very gentle and center around the Atlas C1 and C-2.

Look forward to hearing from you!


#2

My daughter did this for about 4 months. It was immediate relief accutely (while we were in the office), but always came back. Eventually, it kept getting progressively worse and short of going to the NUCCA chiro 6 times a week (as they wanted her to), there wasn't any long term relief for her. :( I hope it works for you....I know others that have said it worked for them!


#3

Absolutely worked for me. Went into his office not able to talk or eat anything without the most severe chocking pain. X-rays proved my atlas was rotated and slide to the side. He adjusted and took new x-rays, and I could personally see the bone moved back into place. I left his office from that first visit talking and ate a steak dinner with minimal pain. Came back the next morning, went for another visit that day, but the results weren't as remarkable, although reduced a bit. Another visit day 3, with mediocre results. I then took a break from visits. Day 5 was a miracle - like three shocks all day. From that point on, the pain was only a couple times a day. I went back about once a week for the next three weeks, and which time the pain was completely, 100% gone. That was over 2 years ago now. I've had a short time of pain since then about 2 weeks after a mission trip to Haiti where several hours riding on a very rough back country 4x4 trails knocked my neck out. A couple visits to the upper cervical chiropractor fixed it once again. I go about every 6-8 weeks now just to make sure I stay in place, and am 100% pain free.

My experience and observation has convinced my of several things:

1) That my TN is absolutely related to my neck being out and a nerve pinched.

2) That until neck ligaments adjust to the new position, it's VERY difficult to keep a neck in the proper place. Mine sometimes wanted to pop back to the old position within minutes of an adjustment. This is why it's important you go often at first, and be careful immediately following the adjustment. Also, be careful to lie still on your back for the first few nights.

3) It takes about 2 weeks after my neck is out for the pain to flare up, and it takes one-two weeks after the pressure is released for the nerve to completely calm down.

4) There's a big variation in the ability of upper cervical chiropractors to get a badly mis-aligned neck in place. I searched for the most experienced guy I could find, and it worked for me. Dr. Brad Hirschorn from Philadelphia. Have to drive over an hour, but definitely worth it. Cost is fairly reasonable also, which is important, since I self-pay all my medical. I don't think he takes insurance, but never asked. .

5) I'd recommend every TN sufferer to try it - there are tons of success stories. Go 3X week one, 2X week two, and 1X week three and four, be careful not to knock your neck out in between. Also read the book "What Time Tuesday" by James Tomasi...very enlightening.

My heart goes out to each of you who suffer. It's the worst pain I've ever experienced in my life, and I wish I could somehow make it go away. The least I can do is spend some to give you the benefit of my experience. It was posts from this forum that gave me hope during that very dark time, and the experiences of others here that encouraged me to try upper cervical. I'm so thankful God led me to upper cervical. For me, it was a miracle.

Blessings!


#4

I’ve been seeing a chiropractor specially trained in this area for years as frequently as several times a week and she was a big factor in my being able to keep making it to work for five years after the first signs of geniculate neuralgia, hemifacial spasm and synkenesis. She does amazing cranial work that unjams my temporal bone and sphenoid.

Now that I’m retired on disability and get specialized physical therapy at OHSU for these conditions as well as Botox and lidocaine injections, I see my chiropractor once or twice a month when the pain is unmanageable. She’s been amazing and continued to look for more and more trainings and techniques years before I finally found a neurologist (I saw several) who diagnosed me.

Because I have these conditions on both sides I’ve been told by OHSU that they’re inoperable so I continue to get acupuncture, massage, trigger point injections, Botox, chiropractic adjustments and physical therapy as well as slathering my face, neck and ears with lidocaine/prilocaine cream at night and taking Lyrica and opoiods. All of these things help and my providers are aware of each other and the role they each play in helping me to function.
Life has gotten a lot better but I want more. I’m starting to talk to the doctors at my pain clinic about surgery and I’m going to be contacting the Mayfield Clinic for an evaluation. My conditions were caused by neuro-Lyme and no doctor in Oregon will treat Lyme disease for fear of losing their medical license. OHSU is particularly biased and are one of two facilities that strongly influence the “no Lyme in Oregon; no Lyme treatment” Oregon Medical Board policy. Even if you have seven positive Lyme tests, they say it’s not Lyme. Insurance companies love our policy.

I firmly believe that telling a neurologist in the OHSU movement disorder clinic who gave me Botox injections that I’d been treated aggressively with IV antibiotics for Lyme (stupid me) caused the other neurologists and specialists to treat me with indifference even as they made new diagnoses for other neurological disorders. The much lauded head of the facial pain clinic wouldn’t allow his assistant to schedule an appointment for an evaluation. No one with this obvious of face distorting painful hemifacial spasm should be dismissed without a thorough examination to determine if it’s operable. And once geniculate neuralgia was diagnosed I couldn’t get their specialists to see me. Every appointment I scheduled for their recommended follow up treatment was cancelled a few days before they were to occur because “the doctor doesn’t treat that condition”. They diagnosed it, recommended treatment and posted their recommendations in My Chart but as soon as Lyme was mentioned scheduled appointments were cancelled and notes were deleted in My Chart. Geniculate neuralgia and treatment recommendations was replaced by"ear problems."

I wholeheartedly endorse trying anything and everything to find what works for you to reduce pain and improve quality of life. It takes trial and effort to find the right providers and not everything is right for you. In my case I was told by a doctor at OHSU’s pain clinic last year that they didn’t have a lot to offer because I was already doing most of what they recommend.

Good luck to you!


Viral infection in the nervous system cause of Trigeminal Neuralgia and MS?
#5

Hi Stacie,


I went three times a week when I began in February and also the first week of March, with some noticeable benefit, definitely. Then I took those 2 weeks off and my pain was more active, especially the second week. But yesterday, every time the chiropractor pressed on the C1-C2 area on my right side, pain shot through my right cheek. I am thinking that my longstanding neck problems must have something to do with my TN.


NOTE: I have recently been diagnosed with pernicious anemia (very low B12 level) and also very low D3, so I am taking very large dosages of both for a few weeks now as my internist has directed.


I am hoping that between upper cervical care and the vitamin therapy, I will see more positive results going forward. I have read that some TN patients did not get noticeable relief for many months of upper cervical care...and some get relief almost immediately. Everyone is different. I started noticing positive benefits after my body began "holding" the adjustments for at least a few days at a time. That took 9 or 10 adjustments initially.


II am a Type A personality, very impatient. This disorder is teaching me that I cannot necessarily have instant results, no matter what I try it seems. So I am thinking that this disorder doesn't happen overnight, it probably took years for my body to succumb. So it will probably take a while to heal, if possible and if I can find the right method of healing.....I am going to stay with the chiropractor and my vitamins and keep seeing my internist. If this fails to bring significant relief, there are many other things to try.


MY HOPE LIST: Upper Cervical Care, Vitamin Therapy (physician regulated), Correcting My Bite (I also have TMJ Dysfunction after having a back lower molar removed. I believe the oral surgeon damaged or aggravated the alveolar nerve) Chinese Scalp Acupuncture, Pain Shield Device, Low Level Lazer Therapy, BOTOX, and then Rhizotomy or invasive Surgery, if I qualify. There are probably many other interventions out there I don't yet know about. Please let me know if you know of anything in addition to what I have on my Hope List.


I truly hope you find something that works!

Sending prayers and best wishes for your daughter,


Adele

StacieWins said:

My daughter did this for about 4 months. It was immediate relief accutely (while we were in the office), but always came back. Eventually, it kept getting progressively worse and short of going to the NUCCA chiro 6 times a week (as they wanted her to), there wasn't any long term relief for her. :( I hope it works for you....I know others that have said it worked for them!


#6


Hi George,

So happy that you shared your success story and I am glad you are out of pain! No one should have to deal with pain on this level.

I wasn't totally convinced that my neck had much to do with my pain until yesterday, when the doctor palpated my neck and produced those familiar stabbing pains in my cheek at least 5 times...I now have true hope that upper cervical care may eventually be the road to recovery for me! My body was not able to hold the adjustments until after about the 10th visit. (initial x-rays revealed that my atlas was twisted and pushed all the way to the right)

I had some wicked, debilitating neck pain attacks a few months before the TN pain began. I was also under a lot of stress professionally at the time, suffered from insomnia for 4 months, then had a back molar removed...and all the while I was suffering from pernicious anemia.....the perfect storm??? Could very well be.

Thank you and Bless you for sharing your success story!!! As a patient still in pain, I am grateful for every success story I hear. I hope you remain pain free!

Best,

Adele :)
george said:

Absolutely worked for me. Went into his office not able to talk or eat anything without the most severe chocking pain. X-rays proved my atlas was rotated and slide to the side. He adjusted and took new x-rays, and I could personally see the bone moved back into place. I left his office from that first visit talking and ate a steak dinner with minimal pain. Came back the next morning, went for another visit that day, but the results weren't as remarkable, although reduced a bit. Another visit day 3, with mediocre results. I then took a break from visits. Day 5 was a miracle - like three shocks all day. From that point on, the pain was only a couple times a day. I went back about once a week for the next three weeks, and which time the pain was completely, 100% gone. That was over 2 years ago now. I've had a short time of pain since then about 2 weeks after a mission trip to Haiti where several hours riding on a very rough back country 4x4 trails knocked my neck out. A couple visits to the upper cervical chiropractor fixed it once again. I go about every 6-8 weeks now just to make sure I stay in place, and am 100% pain free.

My experience and observation has convinced my of several things:

1) That my TN is absolutely related to my neck being out and a nerve pinched.

2) That until neck ligaments adjust to the new position, it's VERY difficult to keep a neck in the proper place. Mine sometimes wanted to pop back to the old position within minutes of an adjustment. This is why it's important you go often at first, and be careful immediately following the adjustment. Also, be careful to lie still on your back for the first few nights.

3) It takes about 2 weeks after my neck is out for the pain to flare up, and it takes one-two weeks after the pressure is released for the nerve to completely calm down.

4) There's a big variation in the ability of upper cervical chiropractors to get a badly mis-aligned neck in place. I searched for the most experienced guy I could find, and it worked for me. Dr. Brad Hirschorn from Philadelphia. Have to drive over an hour, but definitely worth it. Cost is fairly reasonable also, which is important, since I self-pay all my medical. I don't think he takes insurance, but never asked. .

5) I'd recommend every TN sufferer to try it - there are tons of success stories. Go 3X week one, 2X week two, and 1X week three and four, be careful not to knock your neck out in between. Also read the book "What Time Tuesday" by James Tomasi...very enlightening.

My heart goes out to each of you who suffer. It's the worst pain I've ever experienced in my life, and I wish I could somehow make it go away. The least I can do is spend some to give you the benefit of my experience. It was posts from this forum that gave me hope during that very dark time, and the experiences of others here that encouraged me to try upper cervical. I'm so thankful God led me to upper cervical. For me, it was a miracle.

Blessings!


#7

Hi KDB,

So sorry to hear that you are having trouble finding better treatment modalities for your complex medical problem. Are the Oregon docs saying that Lyme "could not be the cause"? I live in NJ, and two doctors, my neurologist and my internist ran blood tests for Lyme, thinking it might be the cause of my bilateral TN pain. I hope you can find better help soon!

I thank you for your reply,and for relaying your positive experience with chiropractic/upper cervical care.

Best,

Adele :)


KDB said:

I've been seeing a chiropractor specially trained in this area for years as frequently as several times a week and she was a big factor in my being able to keep making it to work for five years after the first signs of geniculate neuralgia, hemifacial spasm and synkenesis. She does amazing cranial work that unjams my temporal bone and sphenoid.

Now that I'm retired on disability and get specialized physical therapy at OHSU for these conditions as well as Botox and lidocaine injections, I see my chiropractor once or twice a month when the pain is unmanageable. She's been amazing and continued to look for more and more trainings and techniques years before I finally found a neurologist (I saw several) who diagnosed me.

Because I have these conditions on both sides I've been told by OHSU that they're inoperable so I continue to get acupuncture, massage, trigger point injections, Botox, chiropractic adjustments and physical therapy as well as slathering my face, neck and ears with lidocaine/prilocaine cream at night and taking Lyrica and opoiods. All of these things help and my providers are aware of each other and the role they each play in helping me to function.
Life has gotten a lot better but I want more. I'm starting to talk to the doctors at my pain clinic about surgery and I'm going to be contacting the Mayfield Clinic for an evaluation. My conditions were caused by neuro-Lyme and no doctor in Oregon will treat Lyme disease for fear of losing their medical license. OHSU is particularly biased and are one of two facilities that strongly influence the "no Lyme in Oregon; no Lyme treatment" Oregon Medical Board policy. Even if you have seven positive Lyme tests, they say it's not Lyme. Insurance companies love our policy.

I firmly believe that telling a neurologist in the OHSU movement disorder clinic who gave me Botox injections that I'd been treated aggressively with IV antibiotics for Lyme (stupid me) caused the other neurologists and specialists to treat me with indifference even as they made new diagnoses for other neurological disorders. The much lauded head of the facial pain clinic wouldn't allow his assistant to schedule an appointment for an evaluation. No one with this obvious of face distorting painful hemifacial spasm should be dismissed without a thorough examination to determine if it's operable. And once geniculate neuralgia was diagnosed I couldn't get their specialists to see me. Every appointment I scheduled for their recommended follow up treatment was cancelled a few days before they were to occur because "the doctor doesn't treat that condition". They diagnosed it, recommended treatment and posted their recommendations in My Chart but as soon as Lyme was mentioned scheduled appointments were cancelled and notes were deleted in My Chart. Geniculate neuralgia and treatment recommendations was replaced by"ear problems."

I wholeheartedly endorse trying anything and everything to find what works for you to reduce pain and improve quality of life. It takes trial and effort to find the right providers and not everything is right for you. In my case I was told by a doctor at OHSU's pain clinic last year that they didn't have a lot to offer because I was already doing most of what they recommend.

Good luck to you!

#8

Was VERY interested in your story, Adele! I have had TN for roughly ten years now. Initially I saw a neurologist and had an MRI. There was nothing to indicate the cause of my problem. However, for a long time now I have been wondering if the radiation of pain to my cheek lower jaw and teeth was coming from my cervical region, for thirty years ago I was told I had a severely degenerated disc at the 4-5 level. It would seem logical that the 5th cranial nerve could be 'pinched' by the degenerated disc, especially if the material from the disc was pushing against the nerve.

I am very glad you brought this subject up. I did go to a chiropractor a few years ago and it certainly did help. In fact, I've been seriously considering going back to her. Thank you. I appreciate your post. It has helped me make up my mind.

Best wishes,

Christine


#9

My experience was/is exactly like George in this thread. I swear by my Chiropractor. She has several TN patients and thus far all of them have no to very little pain and some are even without meds all together such as myself. With that said, I went through a terrible allergy season over the winter which knocked me out of alignment. going back to chiropractor after 5 months withotu seeing her, already after two sessions I am back to minimal jabs a day. Going back soon again hoping better alignment will remove the pain once again.

Footnote: I have had MVD back in 2000, pain was gone for exactly 2 yrs and then came back worse than before. Suffered horribly for 3 years before I found this Chiropractor (my angel - no doubt)

I have TN 1&2 and ATN combined.

My advice go to a special chiropractor, if no results in 3-5 months, find another one. There are some who say they know how to do this type of treatment but lack the real skills needed unfortunately. Lucky for me I found a great one!

Sincerely,

Andy


#10

Wow, sounds like your neck is rotated exactly like mine was. Getting rid of the rotation was the key for me. I learned a little trick after many chiropractor visits. Rotation will show up in your hips...Chiropractor measures it with a laser setup, but I place my toes evenly against the kickboard of a desk, cabinet, counter, etc, that is a few inches below my hip. Then I'll lean forward slightly until the top of my thighs touch the countertop. If one touches before the other, I can guarantee my atlas bone is rotated. They should touch at exactly the same time, but when the atlas is out, my left thigh is often 3/4-1.25" away when the other is against. To straighten it, while I'm standing there, I place both hands at the base of the skull on the left and right sides of the neck, slightly toward the rear, near the atlas bone, and slide my hands in a way as to rotate the bone in the same direction as the hips are rotated, pressing with a a few lbs of pressure. Do it a few times, and you'll hear/feel the SLIGHTEST pop (you have to be used to it to know it happened), and your hips will instantly go straight, and will touch at exactly the same time. Doing this procedure is how I learned how easily I can go out. Now that my neck is used to the correct position, it's rare that I go out, and it actually tends to self-correct the right way.

Another measure is to get two very accurate bathroom scales, which I also have, and stand with one foot on each one. If your neck is centered left and right, your weight should be equal on each one (within several lbs). In my experience, this is much more difficult to get an accurate reading. The hip rotation is extremely reliable and you know instantly when it's fixed.

Best wishes! There's hope!


#11

I have had TN 1 for over two years. I am currently in remission. I had been seeing a chiropractor who specializes in Active Release Techniques in Scottsdale, AZ. In addition to feeling that the chiropractor helped with some of the issues (like expressed in some of the previous remarks above), I also worked hard to get down to my proper weight for my height and age. Additionally I stopped taking my statin drugs since I read that the myelin sheath is made up of cholesterol. Also I take a number of vitamins. But I have stopped taking Neurontin which I had been taking 600 mg four times per day. I do take .5 mg of Clonazepam at bedtime (because I worry about the TN coming back). Months back I was on Tegretol, but it turned me into a zombie. Neurontin did not have many side effects for me. So not exactly sure why I am in remission, just happy to not have the pain and hoping it doesn't come back.


#12

Hi Christine,

It hit me like a ton of bricks yesterday. How could that pain be reproduced by the chiropractor palpating my neck? Sometimes the answers come to us in a flash. I couldn't wait to tell my husband what had happened. He is thinking that if the doctor could reproduce the pain, there has to be a direct correlation. Sure hope and pray that we are correct!

Glad this discussion has helped you, Christine! Please let me know how you do and best of luck!

Adele :)

Christine said:

Was VERY interested in your story, Adele! I have had TN for roughly ten years now. Initially I saw a neurologist and had an MRI. There was nothing to indicate the cause of my problem. However, for a long time now I have been wondering if the radiation of pain to my cheek lower jaw and teeth was coming from my cervical region, for thirty years ago I was told I had a severely degenerated disc at the 4-5 level. It would seem logical that the 5th cranial nerve could be 'pinched' by the degenerated disc, especially if the material from the disc was pushing against the nerve.

I am very glad you brought this subject up. I did go to a chiropractor a few years ago and it certainly did help. In fact, I've been seriously considering going back to her. Thank you. I appreciate your post. It has helped me make up my mind.

Best wishes,

Christine


#13

Yes, my atlas was way off! I was on a 2 day road trip to pick up a new puppy last May when my neck froze. Lots of driving on major highways did it. Then bouts of neck pain on the right and left sides, in the middle of my neck, all summer. Then the TN pain in August. I knew I should have gone to the chiropractor earlier, but I kept putting it off. I was living on pain killers and using cold packs for 3 months instead.

My body is only recently beginning to hold the adjustments for a few days, if I am lucky. Stopping the adjustments for those 2 weeks recently, sure did let me know that the previous care was helping more than I gave credit to it. My pain began to intensify after 2 weeks without chiropractic care, just as you say.

But yesterday was the clincher. When the chiropractor reproduced the pain in my cheek just by palpating my C-1,C-2 area, it told me that my neck is definitely involved in my pain...to what degree, I am not 100 percent sure, but I will not stop the adjustments again any time soon.

Thanks for all of your insight and help. I have learned so much from you!

Adele :)

george said:

Wow, sounds like your neck is rotated exactly like mine was. Getting rid of the rotation was the key for me. I learned a little trick after many chiropractor visits. Rotation will show up in your hips...Chiropractor measures it with a laser setup, but I place my toes evenly against the kickboard of a desk, cabinet, counter, etc, that is a few inches below my hip. Then I'll lean forward slightly until the top of my thighs touch the countertop. If one touches before the other, I can guarantee my atlas bone is rotated. They should touch at exactly the same time, but when the atlas is out, my left thigh is often 3/4-1.25" away when the other is against. To straighten it, while I'm standing there, I place both hands at the base of the skull on the left and right sides of the neck, slightly toward the rear, near the atlas bone, and slide my hands in a way as to rotate the bone in the same direction as the hips are rotated, pressing with a a few lbs of pressure. Do it a few times, and you'll hear/feel the SLIGHTEST pop (you have to be used to it to know it happened), and your hips will instantly go straight, and will touch at exactly the same time. Doing this procedure is how I learned how easily I can go out. Now that my neck is used to the correct position, it's rare that I go out, and it actually tends to self-correct the right way.

Another measure is to get two very accurate bathroom scales, which I also have, and stand with one foot on each one. If your neck is centered left and right, your weight should be equal on each one (within several lbs). In my experience, this is much more difficult to get an accurate reading. The hip rotation is extremely reliable and you know instantly when it's fixed.

Best wishes! There's hope!


#14

Hi Andy,

Thanks so much for your TN success story! I love hearing positive outcome stories because it gives myself and others HOPE. So sorry to hear that your pain came back after the MVD. Two years pain free is wonderful no doubt, but having the pain come back worse is awful. So happy that you have a talented chiropractor and that you are confident she will be able to help you become pain free once again. I'm rooting for you!

Adele :)

Andy Anthony said:

My experience was/is exactly like George in this thread. I swear by my Chiropractor. She has several TN patients and thus far all of them have no to very little pain and some are even without meds all together such as myself. With that said, I went through a terrible allergy season over the winter which knocked me out of alignment. going back to chiropractor after 5 months withotu seeing her, already after two sessions I am back to minimal jabs a day. Going back soon again hoping better alignment will remove the pain once again.

Footnote: I have had MVD back in 2000, pain was gone for exactly 2 yrs and then came back worse than before. Suffered horribly for 3 years before I found this Chiropractor (my angel - no doubt)

I have TN 1&2 and ATN combined.

My advice go to a special chiropractor, if no results in 3-5 months, find another one. There are some who say they know how to do this type of treatment but lack the real skills needed unfortunately. Lucky for me I found a great one!

Sincerely,

Andy


#15

Hi Golf Nut,

Thanks so much for responding with your post! I have never heard of Active Release Techniques Chiropractic. What does it involve and what do the adjustments feel like? Is it a form of Upper Cervical Chiropractic (Orthogonal)? (I'm on Tegretol, Lyrica and Ativan! A Zombie cocktail if there ever was one...can't wait to get off these medications and go back to work.)

Happy to hear you are pain free!!!

Adele :)

golf nut said:

I have had TN 1 for over two years. I am currently in remission. I had been seeing a chiropractor who specializes in Active Release Techniques in Scottsdale, AZ. In addition to feeling that the chiropractor helped with some of the issues (like expressed in some of the previous remarks above), I also worked hard to get down to my proper weight for my height and age. Additionally I stopped taking my statin drugs since I read that the myelin sheath is made up of cholesterol. Also I take a number of vitamins. But I have stopped taking Neurontin which I had been taking 600 mg four times per day. I do take .5 mg of Clonazepam at bedtime (because I worry about the TN coming back). Months back I was on Tegretol, but it turned me into a zombie. Neurontin did not have many side effects for me. So not exactly sure why I am in remission, just happy to not have the pain and hoping it doesn't come back.


#16

If you Google Active Release Techniques you can find out all about what it does. Interestingly I have heard that almost every NFL team now has a trained ART specialist on staff. I don't know if that is a fact or not.


#17

I have severe spondylosis in my cervical spine. Conventional chiropractic scares me. I was never comfortable with the head twist and crack. Maybe I've seen too many spy movies!

I started having pain from what was diagnosed as glossopharyngeal neuralgia about 6 years ago. Left teeth, L face, L upper palette, L jaw, , L ear, L face, L throat, L tongue, L neck, and left shoulder. I also have an inoperable AVM deep inside my brain, 2.3cm x 1.2 cm.

When I went to se my chiropractor at the time, it had been 2 years since I had seen her last. She asked what had been going on in the last 2 years, and told her what I had been diagnosed with. She immediately told me she would not see me again, and wouldn't touch anything above my shoulders on that last visit.

I found Activator type chiropractic treatment that was surprisingly extremely effective, and I recommend it to anyone needing chiropractic care.

You lay on you belly for the approx. 15 or 20 min, and the chiropractor looks at the length of your legs to identify the target areas. They use a device that looks like a large metal syringe with a coil spring wrapped around a small chrome tube, with a plastic tip on it. The magnitude of the impact is no greater than thumping a finger tip lightly on the table. He holds it like a syringe and puts the red plastic tip on the target area, and pulls on the trigger, and it thumps or taps lightly on the spot. It is amazingly effective! It does make you feel a little sore the next day in your muscles. It's immediately effective!

I'm having my 5th lidocaine infusion on Monday. It was questionable how effective that treatment is the 1st 3 times. The 4th, or last treatment was very effective. These treatments are pretty harsh, as such, showing little to no improvement in how I was doing, it didn't seem worth it. It can take as many as 6 treatments before seeing results, so I tried again, and it definitely helped a lot. These treatments are every 3 weeks. The last one was a 20hr supply, and you can't do it while sleeping. it took 32.5 hrs. to get the drug in me, before I could remove the needle and pump assembly. You can't shower or take a bath while the needle is in you.

We're all different, and treatment that might work for me, might not work for some people.

I'm fortunate to have a good team of specialists looking after me now. The 1st 5.5 years of this ordeal I was told there was 100% risk of complication to perform any type of surgery, and the only thing the could do is medicate me. I wasn't moving forward towards any type of improvement in what I was dealing with, and I was scared of being doped up, and not being able to function.

It's still only medications, but I have to say that this lidocaine treatment might be giving me part of my life back. I can definitely say I feel improvement in how I feel today, versus a year ago. As this treatment is still relatively new for me, I will continue to monitor it for both the positive impact, and any associated side effects of the drug & treatment. I'm far from without pain and discomfort, but I am more comfortable, and can function with some limitations.

I've seen 2 neurosurgeons, numerous other specialists, and the surgeons have differing opinions as to whether glossopharyngeal neuralgia is the true diagnosis. The anesthesiologist agrees with the 1st surgeon, but is on the new surgeons team that is currently looking after me, who is not 100% positive, but indicates it is a possible misdiagnosis.

Ive been on Lyrica and Immiprimine for the last 5.5 years, and morphine for the last 2 years. I'm still a working professional. Every specialist I see tells me they don't know how I do it, and they are all impressed. I don't don't how much longer I'll be able to go. It's very challenging.

Ed


#18

Hi

I made the mistake of having a chiropractor adjust my neck without any pre test. After going for a lower back issue I mentioned to him that I was experiencing a taste in my mouth for 10 months or so. After three adjustments, I could stand upright and walk, I began having pain in my jaw. I stopped going as the pain was intense and also began in my cheek bone and above my eye. After 3 weeks of over the counter meds for a sinus issue I went to ear nose and throat dr who said it was tn! MRI was normal and neck x - Ray showed arthritis

I am seeking any advice thanks


#19

Hi Sue,

I am not a doctor, but I would go to a neurologist that has experience with TN patients.It sounds like you may need medication for your pain. The type of Chiropractic that has helped some people with TN is upper cervical care, or Orthogonal Chiropractic. It is a sub-specialty and there are about 1,000 of these specialists in the U.S. I hope you can feel better very soon.

Best,

Adele :)

Sue said:

Hi
I made the mistake of having a chiropractor adjust my neck without any pre test. After going for a lower back issue I mentioned to him that I was experiencing a taste in my mouth for 10 months or so. After three adjustments, I could stand upright and walk, I began having pain in my jaw. I stopped going as the pain was intense and also began in my cheek bone and above my eye. After 3 weeks of over the counter meds for a sinus issue I went to ear nose and throat dr who said it was tn! MRI was normal and neck x - Ray showed arthritis
I am seeking any advice thanks

#20

My daughter’s pedi neurologist is open to alternative medicine. She tried orthonical chiropractic adjustment for her headaches (not TN) and it worked very well for several months. However, OC was not successful for many of her patients, because a majority of her patients are hypermobile and/or were later found to have a genetic connective tissue syndrome called Ehlers-Danlos (EDS). http://www.hindawi.com/isrn/dermatology/2012/751768/

http://www.ncbi.nlm.nih.gov/books/NBK1279/ (my daughter and I have EDS Hypermobility -the most common form)



Also, many patients traveled out of town to have the procedure then got back in the car instead of resting the next 24 hours.



Off all the doctors my daughter and I have seen, my daughter’s pedi neuro is my favorite. She is one of the few board certified pediatric headache specialists. This doctor has advised us to never have a physical adjustment in the upper cervical area, because she has personally seen what can go wrong. ( full or partial paralysis)



I have EDS and was diagnosed with Atlantoaxial sublaxation and cervical instability. I had a C1/C2 fusion in August which improved my occipital headaches. I am still working on my TN (which may be trigeminal migraines). If you found relief through OC, but the relief did not last, you may have some form of cranio cervical instability and may be interested in one or all of these videos: (I highly recommend Dr. Fraser Henderson’s video).

http://csfinfo.org/research/csf-funded-research/csf-ehlers-danlos-s….



I experienced significant pain relief after my fusion surgery. My occipital neuralgia is basically cured. However, the pain related to V1/V2 is still a problem, so I am searching for a solution. The csfinfo.org site has some great information on cervical instability - maybe you can find information that helps.



Take care,

Trish