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Old 05-21-2014, 10:08 AM   #1 (permalink)

Join Date: May 2014
Posts: 2

New here, need help and some honest answers.

First a little about my long, complicated personal history:

30 years old born with a bi-lateral cleft lip and palate, had 26 major surgeries and 3 in the last few years to try and treat chronic pain I have had all my life, and have just now given up. I have had tremendous facial pain for as long as I can remember, I have seen dozens of doctors in every specialization possible with zero relief or help, all seem to just assume that these are just normal headaches or migraines, and after years of trying literally every medication and treatment for those, nothing has helped me.

My last few attempts at a fix:

I had seen a surgeon who said it could be TMJ, something that is a common problem in those born with the cleft, so I had orthognathic surgery. Basically they broke my upper jaw and lower jaw and moved them and added some plates in my face. 6 months of terrible pain, no solution. Same doctor had me do a CT scan of my face and said that my sinuses were so badly damaged that my right eye socket was in danger of collapse, so I had bi-lateral orthoscopic surgery. No solution.

Went to see an ENT, said I had a severe deviated septum and that it was causing me to have constant sinus infections, causing the facial pain and headaches. No solution. I could go on and on about all the surgery that I have had on my face and all of the reconstruction, but I think I got my point across. I learned one thing after each surgery that I have had though, the pain meds I was given after each helped my pain, completely getting rid of it.

So a few years ago I started to take pain meds that weren't mine. I have multiple relatives with chronic issues who get more meds than they needed, and my family had sympathy for me and happily gave me whatever pills or patches I needed. And for the last two years I have felt the best I have my entire life.

Right now though, I am sober and have been for 4 months, I am past all of the WD symptoms but I can't help but think about those pills constantly, to live with pain my entire life and then be free of it for a few years? Nobody in my family blamed me, my fiancee didn't blame me, nobody blamed me and all accepted that was my reality. I could literally go right now and get pain meds and feel terrific again.

I haven't though, because I know the reality of the situation, NOBODY takes these things their entire lives and live happily ever after. I got engaged to a woman who was abused by her alcoholic ex-husband along with her son I decided I wasn't going to put her through it, even though she was okay with it.

I just live in hell right now, I forgot how bad the pain was because I was without it for so long, and now I just fight the desire to go back because it is so hard for me to function without them.

I know it is my mind working against me, but I wonder if it isn't worth the eventual problems for a few more years of relief?

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Old 05-21-2014, 10:14 AM   #2 (permalink)
Down The Rabbit Hole and Back

Join Date: May 2014
Location: Canada
Posts: 10
Medicinal MJ for the pain??
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Old 05-21-2014, 10:56 AM   #3 (permalink)

Join Date: May 2014
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Tried it quite a few times, never helped with the pain.

I don't think it is actually headache issues, and more just physical pain from all the of the surgeries.

But doctors just dismiss this.
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Old 05-21-2014, 11:04 AM   #4 (permalink)
pray for strength
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Join Date: Apr 2014
Location: New England
Posts: 2,420
Blog Entries: 1

Welcome to the forum

Have you tried working with a really good pain management physician and program?

I do know people who have experienced different, yet still intense, chronic pain situations and most benefit from a close working relationship with a program and lead life they way they envision. Only a minority had destruction and that was often when they tried to manage challenging pain situations by themselves.

Lots of great support here!

'i know but one freedom, and that is the freedom of the mind' - antoine de saint éxupery
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