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Living With Facial Pain

Alternative Treatment for ATN (Type 2 TN)


#1

I have not posted any comments for a long time. I was diagnosed with ATN in January 2010. Like most of my fellow sufferers, I have used every drug possible to relieve the excruciating , unpredictable pain for the past almost 9 years. I was allergic to Carbamzepine so my only drugs I take are Gabapentin and Baclofin. I received nerve blocks from my ENT doctor every other month for years until that stopped working, acupuncture and in April of 2017 had the RFA procedure. As the physician/surgeon warned me, it may not work and leave me in more pain. He was right. When I received the results of my first MRI in 2010 at John Hopkins Hospital in Baltimore that confirmed I had ATN not TN, the head of the neuro-surgery department told me he had good news and bad news for me. I usually take bad news first this way if my situation is not as bad I feel lucky. But I switched that day, he gave me the good news first; “you are not going to die from the disease, but you will die with it.” Thinking how is that good news, when at that time I was at around a 7+ level of pain and wanted to tear my eyes out and remove my tongue, I calmly asked for the “bad news.” He said it was the same answer with one additional comment; “you are not going to die from it but you will wish you did.” I remember sitting confused and asked for an explanation. He gave me one and it unfortunately was accurate. He said there is nothing he can do further, that my pain will increase each year and even when it subsides it will never return to the low levels but return to a level a little below a 10+. So needless to say 8+ years later I try to survive the pain and depression, 24/7 and 365 days a year. Quality of life being more important than length, I do not take opioids to reduce the pain, I just try to sleep and bear with it. From October 2016 through November of 2017, I could not eat solid food or talk very much. Protein shakes were my staple. But worse the things were happening to my love ones and in the country so I continued to hang in there. Suicide was not an option for me, although always on my mind. In 2017, we sold our home and moved close to our youngest son, since my mother-in-law had passed and I was getting sicker and sicker and felt he could help my wife take care of me during the predicted down turn over the 3-5 year window., No hospital or program would treat me, not Mayo, not Hopkins, not anyone. I had exhausted all my alternatives, now living everyday with 10+ pain, having fallen down a flight off steps twice, fracturing wrist and getting a concussion. Being hopeless in a new city, 7 hours away from my former doctors I became desperate in June 2018. The ATN had decided to return with a new vengeance and the lack of sleep, exercise eandndepressioin were taking their toll. My son and I were searching the web for some service or neurologist who could provide some relief. After numerous calls to doctors and even pain relief clinics and being told no one could help me or even see me, we came across a chiropractor practice I never heard of, "The Upper Cervical Spine Center, Dr. Drury and Dr. Hartman, who were treating TN and ATN patients. I made an appointment for the next day. I had nothing to lose. You all know that feeling. Before I describe what happened I went to tell you that I purposely waited 6 months before writing this to see if the results were real and lasted. The procedure is not well covered by health insurance and not at all with medicare. The procedure is a manipulation of the top 2 vertebrae of your spinal column, atlas and axis. After 2 sessions, my severe pain went away and has remained absent. The procedure addresses years of nerve pain injuries and other trauma. I continue to go for treatment, first twice a week now I am down to every other week and back in the gym. Lifting weights and light aerobics always helped me endure the pain and sleep. Yes, not every symptom is gone, but it’s not like drugs that mask the pain but are not a cure and even increase then depression and have their own side effects. I recommend you try it. I am located in Charlotte, NC but this type of treatment is available in other cities. I wish all of good luck, don’t give up the search for something that may help you. I hope you find something to give thanks about on Thanksgiving and holidays. For me a little less pain and sleep are a lot to be thankful about, but most importantly to have another minute, hour or day with my love ones is worth battling on. Hang in there, I will update you on my progress. Giving up is not an option, we must fight to set an example to our children, to show thanks to our spouses, partners and caregivers. HMB (a fellow sufferer)


#2

Same center is here in Louisville. We are all different. Having said that, more harm than good. In fact, no good. Saw a lot of court referred patients from auto accidents and teenagers supervising exercises. Lots of xrays. Not the kind of place that I trust. Again, we are all different.
Can only wish you best. Congrats. All should share what works long term, no matter our different experiences.


#3

Thank you for posting this. I’m not far from Charlotte and will definitely check this out.


#4

Gueni,

I hope you find relief. Just never give up. If you seek an appointment with Dr. Drury or Dr. Hartman let me know. I will try to arrange for a free consultation or examination for you. I have been able to do that for other interested individuals I met at the gym I go to. I do not receive any discounts or benefits for referring people only the “good feeling” that if it works I may have helped someone!


#5

Thank you!


#6

Have severe ATN for 7 years now. After 10 Drs, pain clinics, hospitals, and yes even dentists and every drug listed above, and more, had a great neurologist put me on low dose oxycodone. I WAS NORMAL for 4 years! Only side effect-constipation which was fixed in 10 days taking Miralax.


#7

A PS: 1. The oxycodone does not have to be of a high dose. Started with 6 10 mg a day down to 6 5mg.
2. Those with real TN2 do not get high or euphoric. It is a pain killer taking away the pain. Pain equal to that of cancer patients. Both my parents were and had no trouble getting morphine and vicodin. They won’t give me vicodine for breakaway pain, because they either don’t understand it or don’t believe it.
3.Oxycodone works for most ATN patients but some are allergic to narcotics sadly.
4. I cannot take it at night because it makes me itch, but my ATN has somehow diminished when I lay down at night. Just take a generic Benadryl.
5. The hard part. The government especially here in Nevada, makes my monthly script request a nightmare. I strongly feel many Doctors should get out of their field. Tired of hearing, “This practice no longer prescribes opiates.”
A direct violation of the Hippocratic oath.
Bless You and Good Luck-Larry


#8

Larry,
I’m sorry to say but this opiate hysteria is happening world wide. I’m in Australia and we are having the same issues here with tougher restrictions on them all, even for those people who have a genuine need. So I can assure you it’s not just in Nevada. We all know there are addicts who use this stuff recreationally and IMO, if they need treatment assistance, give it to them. But for those of us with a genuine need, restricting across the board should be considered a breach of our human rights. On a personal level I hate the stuff, but I need it to live a semi productive life, I ain’t taking it for fun. I take it to function and the govt wonder why there’s a booming black market.
I agree it’s “…A direct violation of the Hippocratic oath…” but then it’s a govt restriction of pharma drugs, not so much directly the medicos.

Merl from the Moderator Support Team


#9

Larry you need to register a complaint with your state medical board. For a practice to unilatterally state they will not provide your medication for no reason is, in fact, a violation.

I’ve registered complaints against two different doctors at this point, one against the surgeon who reconstructed my shoulder for not prescribing the correct accute pain medication (which, as a long time sufferer of ATN, I know all about) and one against my local university hosptial for sending out a generic letter announcing they would not prescribe opiates any longer. The surgeon was sanctioned. The issues with the university is ongoing.

If we don’t start standing up it’s never going to change. And I, for one, can’t have a productive life without opiates.

azurelle