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Living With Facial Pain

Post trauma pain from 1995 after lynching


#1

Ihave peremenat damge to my tmj and and facial nerve 5th and 6th and 7th cranial nerve…i have to take opiods only to take away the pain …my jaw is tmj capsulitis and then hemicranial spasms and trigeminal nueralgia…can anyone help me and atypical facial pain …face broken 1995 …right now only medication that work and for past 11 years are 90 g ms contin a day and 5 mg diazam 2 to 3 times a day …anyone able to help me on this more or if you know please let me know …jaw broken and wired when i was 15 years old and mewtal plate in right cheek bone from 4 fractures in cheek bone and then eyes socket broken in 4 spots and ndose in 3 spots …facial pain association feels it is due to the nerves being permanetly damaged and now when they shift causes pain and dr thinks joint may be arthritic from the trauama any information or insight can help …cedars sinai want me to go to michigan head pain and nuerological institute…but many insurance hoops to jump thru and still get right care…been being passed around a lot by drs and got a 2 week bridge scrip tuntil reffered to right in patient place to handle diagnosis better…because after my pain management poeple here i had for 3 years said they mainly treat back pain and knee pain and even tho they wrote script for 3 years tell me now since opiod epidemic they discharge me cause i need md that treats facial pain and none are inmy network …i saw facial pain dds at cedars sinsai and one in bay area in 2010 and they are trying to get me an md who can treat facial pain but none are in my insurance network…any guidance or support would be highly apreciated


#2

I am so so sorry for what you are going through. It is very unfortunate that people are suffering from unbearable pain because of the opiate epidemic makes it so hard for the doctors to prescribe when needed. I advise you to find a University Hospital in your area that treats TN. They will prescribe what you need as they see fit. I hope that helps a bit.


#3

do that thank you for the support but don’t you feel that doctors at University Hospital’s never prescribe opiates I find that the occipital bones in my left jaw are broken when I find University Hospital sometimes even then comp out and say I need to find an MD that just treats Facial Pain


#4

I am wondering if you have tried
The Pain Center at Cedars Sinai in L A. (if you live near that area) I have been treated by their head and facial pain (dentist) doctors for about 10 years and I have been prescribed opiates for that long . I have constant Trigeminal Neuropathic Pain due to nerve damage. if The Pain Center is not at the main hospital but at a building at 444 S. San Vincente Ave. Rm.1101 Los Angeles,CA90048 Phone# 310-■■■■ I am giving you all of this information in case it may be useful for you. This pain can really be awful! I hope and pray that you find an answer to help you.


#5

actually that is who my facial pain specialist Alan C Newman but I’m having problem with my errand Insurance IPA not honoring him because he’s a dentist cuz I only have LA Care Medical and they’ve had to go out of network for me to see him she’ll make a long story short next week my insurance and like five doctors and we’re hoping him are going to have a conference call on Wednesday but yeah he’s been my facial pain doctor took me two years since I’ve been in LA to see him I also saw before I was in LA Stanford and they made me pay a doctor pettingale in San Jose and then he recommended the treatment plan to San Jose Santa Clara Valley Medical Center and then they pain Managed IT so right now hopefully it’ll go good right now I got a two weeks and it’s barely touching the pain I finally occipital bone in the temporal bone are totally permanently damaged on the left


#6

but I’ve seen him and he wants me to get these occipital nerve blocks and stuff for more diagnosis is but he’s told me to he can’t prescribe that medication maybe he’s wanting to do more testing but I’m not sure I’ve seen him once on September 9th and then I had to see him again February 12th of this year and he just write out a good report I’ll take a picture of it and send it to you if you want but maybe I shouldn’t cuz it’s online but he just has a bunch of recommendations and then he recommends an inpatient at the Michigan head and Neurological Institute but I live in LA and I don’t know how I could do that until I get Medicare my disabilities and its fourth year of appeal but it should go through hopefully this year let me know if you got any feedback or ideas


#7

that is so cool you live in LA I currently live in the usc area I wish we could meet and you could come be my Advocate and I can make another third appointment with Dr Alan C Newman but he’s the Doctor Who told me to go to the ER on Wednesday and have them write a bridge script on my insurance figures it out so then they pain managed it in the hospital for 3 days and then wrote a bridge script for 2 weeks and then the place that was pain management for three years since I’ve been in LA with synovation Medical Group and then they were write 90 mg of MS Contin to take away the pain it was pretty much taken away the pain and still was having some breakthroughs here and there would have to take 5 mg of Diazepam 2 to 3 times a day still but still would have some breakthroughs but then they would tell me that they mainly treat knee and back pain and that the government to make them stop prescribe opiates and that I come to find then they just discharged me and I still haven’t found out why I tried to call their managers never ever taken a prescription wrong before I lived in La I lived in San Jose and I needed to find a social security attorney to represent me in San Jose and no one would so then I know if I moved to LA I could find a social security disability attorney which I did and now he’s been working on my case for the 4th appeal and it should go through and yeah if we could ever meet that would be awesome you can maybe come to an appointment with me and be my advocate s*** I swear to God we could set the appointment for next week with Alan Newman


#8

Before I was living in La the accident happened in Wichita Kansas when I was 15 and 1995 didn’t go back to doctors until 2007 in Kansas City they were than going to send me to their pain management place but since I also use marijuana to manage the pain I moved to Denver they then diagnosed a pretty fast the primary doctor pain Managed IT and was doing pretty good but then I wanted to move to a warmer climate so I moved to San Jose and then they were giving me a real hard time I’m diagnosing it made me keep coming to the ER every 4 days for like 3 years then they sent me to Stanford it made me pay doctor pettingale a facial pain specialist he diagnosed it sent them to report they then didn’t want to honor it and said that they couldn’t treat it so he contacted the UCSF contacted Santa Clara County hospital where I was living then I met with the five heads of the hospital they asked me some marijuana doesn’t take away your pain totally I told them know so then they told me to go to the neurologist and schedule me with the neurologist there and then he began to pain manage it again then when I moved to LA I got with the right primary and Venice Family Clinic she then referred me to synovation Medical Group who then pain manage it fine until a couple months ago and they still won’t tell me why they just had this young pH it could just came out of high or College and discharged me but they won’t tell me why so dr. Alan seen him and still working with me he’s the one who told me Saturday to go to the ER to get a bridge script but he was even telling me which I think is a lie so I’m going to have to call him and ask him about cuz he was saying that that he or he was saying they can’t or don’t write that prescription


#9

I feel like i am dealing a lot at this moment agian in my life what this doctor is saying in this post…

its one of my favorite ive ever read

http://www.livingwithfacialpain.org/t/letter-from-a-doctor/12531


#10

Let me know if youd be willing to meet up and discuss mabey you helping be my advocate at my next cedars sinai appoinment i could set one up for next week if youd want to meet there or you can meet at my place and la care could give us a ride to the appoinment? if not i understand but thatd be a true city of angels if you could


#11

sorry in one of those typing i was having phone type for me and it stopped when i was talking about denver diagnosed it quikly and then pain amanged it 90 mg oxycotin a day…then i move to san jose to be in warmer climate …they take 3 years to diagnose santa clara county hospital has me to to stanford who then told me to in 2011 to pay a facial pain specialist named dr pettingail and he worote a good report and then he said it needed pain manaegement …stanford said they dont treat that disorder…sent me back…i contacted him he contacted his associates at ucsf they contacted the heads at santa clara county had me meet with they had a meeting with me 5 poeple in office and they said so marijuana doesnt ake away all your pain i said no they made me then go to nuerology at their hospital and he began pain managing with script of 5 mg 3 times s day facial spasms and 90 mg a day ms contin for 3 years and needed an ssdi attorney none would represent me …so i moved to la and got attorney found great primary at venice family clinic on inglewood blvd in culver city… she pain managed it a month sent me to synovation medical center…they then painmanged it three yyears then started harasing me this october …ive never taken script wrong than prescribed never neede early refil always ua clean…then they say they cant treat facial pain they only treat back and knee pain and discharge me…then la care sends me to dr zarrini in bv hills …he has pa see me he ccorberates dr alan newmans notes but says they can manage the pain i need to go to university hospital …pirmary then said he is refering me to cedars sinai medical center pain management

but havent gotten referal yet inmail…but can still schedule with dr alan c newman but he says he is a dentist and cant write the script…so i am as u can se overwwelmed next wedenseday will tell alot …i woder if you could come to appoinment with me at cedars i could schedule one with dr aln c newman next week


#12

I went to Rush University Hospital in Chicago and Cleveland Clinic. I have been told that with the type of TN2 I have, I do not qualify for surgeries. The nerve blocks only lasted such a short time that they even stopped those. Both locations offered for me to go to their Pain Management Clinic’s where they would prescribe the opiates if needed. That was because I told them I may have a problem getting what they wanted to prescribe.


bEING REFERED TO ANOTHER PAIN MANAGEMENT AND TOLD THEY DONT PRESCRIBE OPIATES
#13

i had cedars sinai also nuerosurgeon dr schviek say surgery is not recommended and ive tried a nerve block b4 and it was lidocain and it didnt work i cant remmeber which tn i have too but alan newman said i have atypical facial pain tmj capsulis and hemifacial spasms permanent damage to 5th 6th asnd 7th cranial nerves …and i cant remember which tn he thought i had but your probly right i need to just get these nerve blocks and see they dont work…i saw that one in chicago too so mabey i will have to go to one of them too first for cedars to step up …i will keep u updated …next wednesday is a big day


#14

Go see Dr Levesque in Beverly Hills he has helped many ‭+1 (310) ■■■■‬


#15

Hi Edster and Shamus too,

although phone numbers are automatically blanked out, don’t forget you can always send or request contact details by personal message.

Christina from Moderator Support


#16

I went to the facility in Michigan and saw A Dr that was very aggressive with medications. But overall did not help me. But it is worth trying. I have atypical trigeminal neuralgia. Good luck to you!


#17

hey i was wondering if you can help me…right now LA care my hmo thru mediCal is sending me to see usc painmanagement…so my case worker at la care called and left me message saying we got your approval to see usc but they wont prescribe any opiates…im gonna call her tommoro and try and discuss this with her…they dont understand the damage to the nerve needs meds and ive tried all but only narcotics kill it


#18

Hey Shamus,
I too have had the ‘joy’ of attending a hospital run pain management unit and I’m sorry to say it like this but it was a ‘talk fest’. They talk about other ways to manage pain, other ways to minimise stress ie diet, moderate exercise, task management, hydrotherapy, relaxation techniques etc. I too tried to discus medications… …waste of time. They have ‘group therapy’ where people can get together and talk about how they manage or counselling sessions one on one to talk about pain management and pain mitigation. Within one of the group therapy sessions an attendee brought up about alternatives to prescription medications and was promptly shutdown by the facilitator as “…we are only here to talk about ‘approved therapies’…” Many of their theories are based around narcotics causing addiction, resulting in us getting addicted to the pain and the pain meds.

But in saying this, if your HMO are paying and you reject their advice or the referral to a Pain Clinic then they may turn around and say you are ‘not following medical advice’ and withdraw services. I have found it is sometimes best to go along with the referral, do as they suggest but if/when it is not working inform them of it.

I know this is not the answer, but it is the reality for many of us caught up in the pain management clinics. Often it can be a case of insurance companies finding an ‘easy out’ especially when the medicos can’t find an answer.

Merl from Moderator Support


#19

I appreciate the feedback and I will talk to my case worker today I have a script of 15 mg IR 4 times a day until May 4th and then I probably have a week’s worth left after May 4th May 4th is when I see the USC place but I’ve been prescribe these opiates for over 10 years now I tried to stop even tonight and after about 3 hours is in so much pain I had to take it I don’t know what to do if I go there and they tell me that they are going to write the script all end up being in the emergency room I don’t know if I should start taking methadone if they trying to take away my pain medicine I was also giving butrans patch but I didn’t get any relief and removed patch after 1 day any guidance will help one of the biggest problems I have is worth if I go to 3 hours without the medication I start having so many different pains in the left side of my face sometimes it’s in the occipital bones or if the TMJ is arthritic I also get a lot of pains in the temporal bones but it’s just the left side and then sometimes it’s in the head of the frontal lobe in the side of the head but it’s just the left side


#20

Sounds like you are in a bad place Shamus, but I must say I am not a dr and being a medical matter your medical team would be your best avenue IMO. You may need some assistance to be coming off of meds at a metered rate, especially after taking strong opiates for 10 yrs as you state. Stopping any medication cold turkey can be fraught with danger but after 10 yrs your body has the ability to build a need for the meds and with opiates that can be a major issue.
If the medicos are recommending it, then ask for assistance with it. Expecting you to go from 15 mg IR 4 times a day to nil without help is an issue. Ask them to assist with this.
Hope that helps and let us know how you get on.
Merl from Moderator Support