Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

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samas
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Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#1 Post by samas » Tue Aug 29, 2017 9:29 am

Hi everyone,

Here's a tldr summary of this post:
• had a sliding genioplasty in 2007 in NYC
• starting then, multiple health issues began (chronic heart, jaw, gingivitis, and jaw bite issues)
• sliding genioplasty doctors always told me my chin looked fine in pano-xrays and shouldn't be the cause
• for past 10 years my situation worsened. Stopped working full-time 5 years ago due to chronic pains to try to find what's going on (focused on the heart, no luck finding anything)
• now it is really really bad. pain is suicidal and constant.
• I now believe it all stems from my genioplasty and am looking for compassionate and skilled doctors or help or suggestions on this forum. Thanks!



PLEASE HELP

I’ve been dealing with steadily declining health for the past decade. But now, it's suddenly gotten very acute and, at the continued rate of decline, if I am not healed soon, I’m not sure if I’ll be around to see 2019.


MY BACKGROUND

I was born in 1974 (now 43) and was, for most of my sad life, a total mess of a human being. I clambered up out of a childhood of massive emotional and physical abuse, a social environment of constant bullying, and some pretty wretched poverty to end up somehow, miraculously, working for a prestigious private equity firm in NYC with a good career, but I was broken inside, I had big problems relating to others, and lived in a shell with a growing hole in my heart which filled with vanities, substance abuse and shallow company. If only someone pulled me aside and told me then that time and patience would make all things better, that I would eventually meet someone who would change my life, but no one told me, and I made poor, poor decisions.

With sliding genioplasty, I supposed I was trying to have a surgical break from my hard past, so to speak. So my choice to get one 10 years ago in 2007 was, in hindsight, obviously an expression of the gnawing emptiness I harbored inside. It's only now that I've learned that this emptiness was a desperate need for a ray of warm light in the darkness, for love. But back then (and until 2013), I didn't realize any of this and stayed in denial about my depression. Most of all, I was in denial that I needed love. And I looked for it in all the proverbial wrong places.

When I consulted with the surgeon he felt very sales-y to me. Downplayed all risks. Told me he did thousands of genioplastys a year when that was mathematically highly unlikely. I didn't fully trust him. But he was recommended online by a couple of people on a forum or two. And in when you’re looking for a genioplasty, not even the internet has much info. Definitely not enough for due diligence.

Besides, once I considered the limited value and meaning of my life, and all the rejections, the being cheated on so many times, turning bitterly jaded, and the many failures in my idiotic attempts at love, I decided I had little to lose. Besides, a lot of people all my life commented on my my baby face and feminine looks, they commented on how skinny I was. I was never a bad looking guy, but I was tired of it all. And if I'm being honest, even resentful.

All of this finally came to head in June 2007 when I had the surgery. It was a sliding genioplasty in NYC (3mm down and 8mm forward). The doctor had filled in the gap with something called Avitene - which he didn’t tell me anything about before the surgery. And I just learned yesterday that Avitene is not ideal for bone fillings due to various risk. But, ignorant of this at the time, I chose the stupid darker path. I chose to augment a face that didn’t need it, to ditch authenticity from my life, to improve my sex life, and to spend all my money on parties until I go out with a bang.

Of all the regrets in my life, this choice was the biggest by a very wide margin. I didn't realize it at the time, but I had made a deal with the devil.


MY SYMPTOMS

As my health steadily declined over the years, it took a sharper turn for the worse 5 years ago forcing me to leave my job in 2012. Since then I've been only able to hold odd jobs during the low tides of my pain, those periods of calm when I feel normal.

Five years ago, the flare ups were bad, but they occurred only about once a quarter to six months. Between the flare ups, I enjoyed stretches of perfect health and dismissed my flare ups. But eventually, the high tides always returned with waves of pain.

My symptoms are many and have steadily increased in frequency and severity over the years. All of these symptoms started in 2007. Before then, I was relatively healthy.

During flare ups, I experienced what seemed like a random assortment of symptoms. These symptoms include:
• terrible Insomnia (during flare ups, I can only fall asleep through the pain when I hit the brick wall of exhaustion and pass out, only to be awakened by pain or a pain-induced nightmare within the hour, and repeat this same cycle all night. I sleep maybe 4 hours total each day.)
• a variety of chest pains (stabbing pains, sudden cold chills in the heart as I gulped down ice cold water, a strange feeling that I can only describe as a sort of itchiness in the heart, chest soreness and pain that radiates down left arm and to my left shoulder blade, palpitations and tachycardia (diagnosed in 2017).
• not so much a symptom, but I gained a misaligned teeth bite (happened immediately after genioplasty. before then I had a perfect bite).
• chronic gingivitis and the constant taste of blood along the gums of my lower front teeth - no matter how good my dental hygiene
• tinnitis
• warm, tingly sensations of inflammation at the left edge of my chin (where the bone had been cut and rejoined) radiating across my entire chin and eve up my face. This sensation, btw, is not constant. They occur only during flare ups - which means nerve damage can be ruled out.
• shoulder, neck and central back stiffness
• wheezing in my breath and a constant sensation you get when you feel moisture in your lungs from swimming all day
• headaches, sudden cold sweats, short sudden fevers, paresthesia, pins and prick sensations that feel like micro-embolisms
• and other strange symptoms
• terrible memory loss, foggy brain, rapidly increasing forgetfulness (like my sister's name)

What I am certain of is this: whatever is causing my illness (which I now strongly suspect is my 2007 genioplasty), is also damaging my heart, and possibly brain and other organs.

What I am certain of is that there is a point of no return where if diagnosis and remediation happens too late, the damage will be permanent and lead to other terminal situations.


MY SEARCH

During the first few years, I returned to the surgeon with my complaints. I returned 4 times. Each time, I was assured the genioplasty site was fine. Unfortunately, the surgeon passed away to a heart attack in 2011. I went to another surgeon who also said the genioplasty site had healed fine.

I believed them each time. I think I believed them because I wanted to feel assured.

So I focused the etiology search in cardiovascular medicine. I went to cardiovascular doctors. When I had insurance, I went to a lot of good ones. but test after test, they found nothing. I was found to have prolapsing heart valves - but they were only trace or mild regurgitation which clinically meant I had nothing to worry about in the immediate term.

However, my illness worsened. Once I lost my job, I went on and off Medicaid depending on my work situation. I spent money out of pocket. I had untold number of Emergency room visits - all with nothing showing any serious medical condition. I did rheumatology tests to test for auto-immune disorders. But no smoking gun ever emerged. Eventually, all the cardiologists and my primary care doctors started telling me it was all in my head.

I wish it were, but I know my body. This is not psychological. It is not even psychosomatic. It is absolutely somatic in nature and etiology.

I've gone to perhaps 20 different doctors. I've had perhaps 50 Emergency Room visits. But they all assure me I'm not dying, I'm fine, and they turn me loose back to my suffering. So now, I've stopped going to the emergency rooms - even as my symptoms have grown worse than ever.

I have been quantifying and documenting my illness and its symptoms for the past 1.5 years so I can objectively say that, today, I'm in the midst of my worst flare up to date. It's been 3 weeks (1 week longer than the longest prior), and before that, I had just a two-day respite before the previous flare up. So it's getting much worse. and so quickly.

This is the first time I am considering death as a very real possibility. In fact, if I graph the trajectory of my symptoms and pain, it looks exponential, and in 2018 sometime, I'm certain something acute will happen - a heart attack, stroke, sepsis, meningitis - something that will trigger a prolonged hospital stay. If that happens before I help a doctor, any doctor, to conclusively discover the root cause, I will die in the intensive care unit of a hospital.


MY ONE CANDLE OF LIGHT

If my story has any redeeming thing I can share, anything I can cling to and regard as GOOD, it is my wife. In November 2012, Years after I had resolutely abandoned all ideas of long-term stable relationships, I stumbled into a woman who shattered me with her profound compassion, tenderness, deep honesty and love for the world and others. I had long ago stopped believing that such people, such women, existed. At least here in NYC. But there she was.

I had long tossed away my little fading light into the dark pit of my collapsing soul. And it stayed buried there for years. but now, it started to glow again. It was just embers of light, but it glowed. And as I got to know this woman (who turned me down for a date three times!), a fire grew in me. Hope swelled. And the desire to change, to learn to love and learn to be loved, and to live, blossomed. Here was a woman who saw me for who I was, not just what I looked like or where I worked or what car I drove.

We married in 2013 and I felt joy and hope for the first time of my life. Victor Hugo once said that to love and be loved was the greatest thing in life to experience, and I found it true. I found it. She is my candle in my darkness. And to this day, she has taught me to forgive the world, to forgive myself, and to seek to do good unto the world. And if I ever recover from this, that is what I have sworn to do. To bring my skills to bear on serving those in need, those in pain, in the body, mind, and especially the heart...

Last night, during the throes of intense pain washing over me, my wife cradled me in her arms and prayed for me. And she assured me that I will get better. That our future unborn child will need its father. That the mother will need her husband. Our family, I am told, is waiting for me, and with all my heart, I believe her…

I feel like the luckiest man in the world. And I also feel like the unluckiest.


MY NEXT STEPS

There’s no point in wallowing in regret of my decision in 2007. I have little time for that.

I’m 100% responsible for discovering the etiology. This is my mission. Then, I can find the doctor who is skilled and willing to permanently fix it.

I’ve ordered many blood tests in the past, many of them negative. Blood cultures, both fungal and bacterial: negative. Every heart attack blood markers: negative. CBC with differentials: relatively normal. I just had my first inflammation blood test last Friday (8/25/17) with CRP and 4 Interleukins, and another CBC differential just to check. Results will be in next week.

One thing that’s recently occurred to me is that all the maxillofacial surgeons’ conclusions on my post-op jaw health were drawn from xrays only. There were no biopsies. No MRIs. No other kind of diagnostic testing to conclusively rule out infection, or Avitene rejection, or disintegration of the Avitene filling.

So my next step is to find a maxillofacial surgeon, especially one that has experience with sliding genioplasty, who has compassion for my case and is willing to take the journey with me to absolutely and conclusively rule out my genioplasty site as having any etiologic bearing on my condition.

I reached out to a Dr. Michael Lessin who I met once before and seems to be the top candidate, but his assistant warned me that he is retiring in December and not looking to take on any new cases or patients. I asked her to prevail upon him on my behalf. We’ll see what happens.

I will update my findings and progress.

Until then, if you have any leads, suggestions, questions, please share them.

And if I can in any way, I would love to help you, too. especially anyone who suffers.

samas
Posts: 6
Joined: Tue Aug 29, 2017 5:03 am

Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#2 Post by samas » Tue Aug 29, 2017 9:35 am

To allay any suicide concerns, I must add that although the pain I am experiencing is suicidally bad, I won't ever do it because I have found my reason to live: my wife, our future family, and others like me out there...

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Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#3 Post by bbsadmin » Thu Aug 31, 2017 4:09 pm

Have you reached out to the manufacturer of Avitene? Their website does say that there can be an allergic or rejection reaction to it:


https://www.davol.com/product-listing/s ... en-sponge/


Adverse Reactions

The most serious adverse reactions reported which may be related to the use of Avitene™ MCH or other collagen products are potentiation of infection including abscess formation, hematoma, wound dehiscence and mediastinitis.

Other reported adverse reactions possibly related are adhesion formation, allergic reaction, foreign body reaction and subgaleal seroma (report of a single case) and increased incidence of alveolalgia when used for packing of dental extraction sockets.

Transient laryngospasm due to aspiration of dry material has been reported following use of Avitene™ MCH in tonsillectomy.
I'm the owner/admin of this site. Had ceramic uppers, metal lowers ~3 years in my early 40's. Now in Hawley retainers at night!

Smurfy1975
Posts: 14
Joined: Sun Feb 21, 2010 6:18 pm

Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#4 Post by Smurfy1975 » Tue Nov 21, 2017 3:22 pm

Thank you for sharing. Sounds terrible to deal with. I don't have any words of wisdom. I am myself still dealing with living my everyday life with my own screwed up chin and bottom lip from genioplasty. It seems worse when I am stressed or when it's cold. Please keep us updated on your next steps. I am still hoping for some magical cure. I refuse to take any medication/drugs so I "just" live with it. All I want to say is that anyone considering genioplasty should think twice before doing it. I would have been fine with just the BSSO. I wouldn't have had such a pretty profile as I have now but at least I wouldn't have had to deal with this.

snapdresser
Posts: 899
Joined: Wed Feb 18, 2015 7:31 am

Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#5 Post by snapdresser » Mon Nov 27, 2017 7:23 am

It sounds like they did a thorough check of your heart, but how are your lungs and the rest of your circulatory system? Are you/were you a smoker? Do you exercise regularly? Past drug use? I’m not a doctor, but to me a lot of your symptoms sound like a life hard lived catching up to you, completely unrelated to the genioplasty. Sounds like you’re convinced they’re connected because of the timing, but if you were 33 when you had the procedure, then it was about time that such things would be catching up to you. Just thinking outside the box here. Good luck!
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1-piece LeFort I + BSSO + Sliding Genio on 10 JUNE 2015!
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iceman89
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Joined: Thu Nov 23, 2017 2:22 am

Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#6 Post by iceman89 » Sun Dec 03, 2017 10:22 am

[quote="samas"]Hi everyone,

Here's a tldr summary of this post:
• had a sliding genioplasty in 2007 in NYC
• starting then, multiple health issues began (chronic heart, jaw, gingivitis, and jaw bite issues)
• sliding genioplasty doctors always told me my chin looked fine in pano-xrays and shouldn't be the cause
• for past 10 years my situation worsened. Stopped working full-time 5 years ago due to chronic pains to try to find what's going on (focused on the heart, no luck finding anything)
• now it is really really bad. pain is suicidal and constant.
• I now believe it all stems from my genioplasty and am looking for compassionate and skilled doctors or help or suggestions on this forum. Thanks!



PLEASE HELP

I’ve been dealing with steadily declining health for the past decade. But now, it's suddenly gotten very acute and, at the continued rate of decline, if I am not healed soon, I’m not sure if I’ll be around to see 2019.


MY BACKGROUND

I was born in 1974 (now 43) and was, for most of my sad life, a total mess of a human being. I clambered up out of a childhood of massive emotional and physical abuse, a social environment of constant bullying, and some pretty wretched poverty to end up somehow, miraculously, working for a prestigious private equity firm in NYC with a good career, but I was broken inside, I had big problems relating to others, and lived in a shell with a growing hole in my heart which filled with vanities, substance abuse and shallow company. If only someone pulled me aside and told me then that time and patience would make all things better, that I would eventually meet someone who would change my life, but no one told me, and I made poor, poor decisions.

With sliding genioplasty, I supposed I was trying to have a surgical break from my hard past, so to speak. So my choice to get one 10 years ago in 2007 was, in hindsight, obviously an expression of the gnawing emptiness I harbored inside. It's only now that I've learned that this emptiness was a desperate need for a ray of warm light in the darkness, for love. But back then (and until 2013), I didn't realize any of this and stayed in denial about my depression. Most of all, I was in denial that I needed love. And I looked for it in all the proverbial wrong places.

When I consulted with the surgeon he felt very sales-y to me. Downplayed all risks. Told me he did thousands of genioplastys a year when that was mathematically highly unlikely. I didn't fully trust him. But he was recommended online by a couple of people on a forum or two. And in when you’re looking for a genioplasty, not even the internet has much info. Definitely not enough for due diligence.

Besides, once I considered the limited value and meaning of my life, and all the rejections, the being cheated on so many times, turning bitterly jaded, and the many failures in my idiotic attempts at love, I decided I had little to lose. Besides, a lot of people all my life commented on my my baby face and feminine looks, they commented on how skinny I was. I was never a bad looking guy, but I was tired of it all. And if I'm being honest, even resentful.

All of this finally came to head in June 2007 when I had the surgery. It was a sliding genioplasty in NYC (3mm down and 8mm forward). The doctor had filled in the gap with something called Avitene - which he didn’t tell me anything about before the surgery. And I just learned yesterday that Avitene is not ideal for bone fillings due to various risk. But, ignorant of this at the time, I chose the stupid darker path. I chose to augment a face that didn’t need it, to ditch authenticity from my life, to improve my sex life, and to spend all my money on parties until I go out with a bang.

Of all the regrets in my life, this choice was the biggest by a very wide margin. I didn't realize it at the time, but I had made a deal with the devil.


MY SYMPTOMS

As my health steadily declined over the years, it took a sharper turn for the worse 5 years ago forcing me to leave my job in 2012. Since then I've been only able to hold odd jobs during the low tides of my pain, those periods of calm when I feel normal.

Five years ago, the flare ups were bad, but they occurred only about once a quarter to six months. Between the flare ups, I enjoyed stretches of perfect health and dismissed my flare ups. But eventually, the high tides always returned with waves of pain.

My symptoms are many and have steadily increased in frequency and severity over the years. All of these symptoms started in 2007. Before then, I was relatively healthy.

During flare ups, I experienced what seemed like a random assortment of symptoms. These symptoms include:
• terrible Insomnia (during flare ups, I can only fall asleep through the pain when I hit the brick wall of exhaustion and pass out, only to be awakened by pain or a pain-induced nightmare within the hour, and repeat this same cycle all night. I sleep maybe 4 hours total each day.)
• a variety of chest pains (stabbing pains, sudden cold chills in the heart as I gulped down ice cold water, a strange feeling that I can only describe as a sort of itchiness in the heart, chest soreness and pain that radiates down left arm and to my left shoulder blade, palpitations and tachycardia (diagnosed in 2017).
• not so much a symptom, but I gained a misaligned teeth bite (happened immediately after genioplasty. before then I had a perfect bite).
• chronic gingivitis and the constant taste of blood along the gums of my lower front teeth - no matter how good my dental hygiene
• tinnitis
• warm, tingly sensations of inflammation at the left edge of my chin (where the bone had been cut and rejoined) radiating across my entire chin and eve up my face. This sensation, btw, is not constant. They occur only during flare ups - which means nerve damage can be ruled out.
• shoulder, neck and central back stiffness
• wheezing in my breath and a constant sensation you get when you feel moisture in your lungs from swimming all day
• headaches, sudden cold sweats, short sudden fevers, paresthesia, pins and prick sensations that feel like micro-embolisms
• and other strange symptoms
• terrible memory loss, foggy brain, rapidly increasing forgetfulness (like my sister's name)

What I am certain of is this: whatever is causing my illness (which I now strongly suspect is my 2007 genioplasty), is also damaging my heart, and possibly brain and other organs.

What I am certain of is that there is a point of no return where if diagnosis and remediation happens too late, the damage will be permanent and lead to other terminal situations.


MY SEARCH

During the first few years, I returned to the surgeon with my complaints. I returned 4 times. Each time, I was assured the genioplasty site was fine. Unfortunately, the surgeon passed away to a heart attack in 2011. I went to another surgeon who also said the genioplasty site had healed fine.

I believed them each time. I think I believed them because I wanted to feel assured.

So I focused the etiology search in cardiovascular medicine. I went to cardiovascular doctors. When I had insurance, I went to a lot of good ones. but test after test, they found nothing. I was found to have prolapsing heart valves - but they were only trace or mild regurgitation which clinically meant I had nothing to worry about in the immediate term.

However, my illness worsened. Once I lost my job, I went on and off Medicaid depending on my work situation. I spent money out of pocket. I had untold number of Emergency room visits - all with nothing showing any serious medical condition. I did rheumatology tests to test for auto-immune disorders. But no smoking gun ever emerged. Eventually, all the cardiologists and my primary care doctors started telling me it was all in my head.

I wish it were, but I know my body. This is not psychological. It is not even psychosomatic. It is absolutely somatic in nature and etiology.

I've gone to perhaps 20 different doctors. I've had perhaps 50 Emergency Room visits. But they all assure me I'm not dying, I'm fine, and they turn me loose back to my suffering. So now, I've stopped going to the emergency rooms - even as my symptoms have grown worse than ever.

I have been quantifying and documenting my illness and its symptoms for the past 1.5 years so I can objectively say that, today, I'm in the midst of my worst flare up to date. It's been 3 weeks (1 week longer than the longest prior), and before that, I had just a two-day respite before the previous flare up. So it's getting much worse. and so quickly.

This is the first time I am considering death as a very real possibility. In fact, if I graph the trajectory of my symptoms and pain, it looks exponential, and in 2018 sometime, I'm certain something acute will happen - a heart attack, stroke, sepsis, meningitis - something that will trigger a prolonged hospital stay. If that happens before I help a doctor, any doctor, to conclusively discover the root cause, I will die in the intensive care unit of a hospital.


MY ONE CANDLE OF LIGHT

If my story has any redeeming thing I can share, anything I can cling to and regard as GOOD, it is my wife. In November 2012, Years after I had resolutely abandoned all ideas of long-term stable relationships, I stumbled into a woman who shattered me with her profound compassion, tenderness, deep honesty and love for the world and others. I had long ago stopped believing that such people, such women, existed. At least here in NYC. But there she was.

I had long tossed away my little fading light into the dark pit of my collapsing soul. And it stayed buried there for years. but now, it started to glow again. It was just embers of light, but it glowed. And as I got to know this woman (who turned me down for a date three times!), a fire grew in me. Hope swelled. And the desire to change, to learn to love and learn to be loved, and to live, blossomed. Here was a woman who saw me for who I was, not just what I looked like or where I worked or what car I drove.

We married in 2013 and I felt joy and hope for the first time of my life. Victor Hugo once said that to love and be loved was the greatest thing in life to experience, and I found it true. I found it. She is my candle in my darkness. And to this day, she has taught me to forgive the world, to forgive myself, and to seek to do good unto the world. And if I ever recover from this, that is what I have sworn to do. To bring my skills to bear on serving those in need, those in pain, in the body, mind, and especially the heart...

Last night, during the throes of intense pain washing over me, my wife cradled me in her arms and prayed for me. And she assured me that I will get better. That our future unborn child will need its father. That the mother will need her husband. Our family, I am told, is waiting for me, and with all my heart, I believe her…

I feel like the luckiest man in the world. And I also feel like the unluckiest.


MY NEXT STEPS

There’s no point in wallowing in regret of my decision in 2007. I have little time for that.

I’m 100% responsible for discovering the etiology. This is my mission. Then, I can find the doctor who is skilled and willing to permanently fix it.

I’ve ordered many blood tests in the past, many of them negative. Blood cultures, both fungal and bacterial: negative. Every heart attack blood markers: negative. CBC with differentials: relatively normal. I just had my first inflammation blood test last Friday (8/25/17) with CRP and 4 Interleukins, and another CBC differential just to check. Results will be in next week.

One thing that’s recently occurred to me is that all the maxillofacial surgeons’ conclusions on my post-op jaw health were drawn from xrays only. There were no biopsies. No MRIs. No other kind of diagnostic testing to conclusively rule out infection, or Avitene rejection, or disintegration of the Avitene filling.

So my next step is to find a maxillofacial surgeon, especially one that has experience with sliding genioplasty, who has compassion for my case and is willing to take the journey with me to absolutely and conclusively rule out my genioplasty site as having any etiologic bearing on my condition.

I reached out to a Dr. Michael Lessin who I met once before and seems to be the top candidate, but his assistant warned me that he is retiring in December and not looking to take on any new cases or patients. I asked her to prevail upon him on my behalf. We’ll see what happens.

I will update my findings and progress.

Until then, if you have any leads, suggestions, questions, please share them.

And if I can in any way, I would love to help you, too. especially anyone who suffers.[/quote]

Im really sorry for the troubles you are going through. But you have got to stop feeling sorry for your self. While I understand that your pain is very real, what you have are solvable problems. You just need to be rational, sit down and think through.

Firstly from what i can hear i think that the max fac surgeons are right. I think its a bit odd that you can have that much complications 10 years after. I think you need to find a good gp and relay all your concerns including your anxiety. Ask him/her to refer u to an apporpriate specialist. If you have insurance use it. Theres no need to get really anxious because that in itself can cause a lot of issues. If you can take a deep breathe think rationally you will find the answers that you are looking for.

miwe13
Posts: 3
Joined: Thu Jan 25, 2018 4:52 am

Re: Please help. Terrible chronic pain. 10yrs post op sliding genioplasty.

#7 Post by miwe13 » Thu Jan 25, 2018 10:01 pm

Classic rheum/fibromyalgia. If your doc hasn't suggested this file malpractice...blaming SG is easy but think more likely not super rare exceptions.

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