Hey everyone! I'm new to this excellent website full of information. I wanted to add my experience in the hopes that it helps someone else out there since it really almost made me crazy! ...still is really! ... I had upper and lower jaw done and genioplasty. So I'm 8 weeks post op and still have swelling in my cheeks. It's not all that noticable to those around me but I constantly chew my cheeks and lips and feel like I'm wearing a football guard on top and bottom teeth! Very irritating. However, the MOST irritating is the non stop pain I have felt ever since my surgery. I have a constant burning like sensation on my top and bottom gums and roof of mouth. It feels like one side of my mouth all my tooth are loose. My right jaw screams in pain when I yawn which also causes an awful earache often. Oh and I have shooting, jabbing, electrical shocks in my mouth, teeth and chin over and over through the day. I told my surgeon this at every visit and he kept telling me it was normal. He then told me at week 4 that he could not give me any more pain pills. Honestly, they hardly worked but now not being on them I realize they did take a little of the edge off. Then he refused to help me. thought I was crazy. Said he never heard of pain this long after. I have been referred to several other Dr's who also looked at me like I'm nuts since there is nothing physcially wrong with me that they can see to cause this pain. Finally I went to see another surgeon to get a 2nd opinion and after some quick testing he told me I have Trigeminal Neuralgia! Look this up - it's awful. They call it the suicide disease. It's awful and it never stops hurting all day long! It's not a quick fix either I'm told I might have this the rest of my life and have to stay on meds - that is IF we can find one that works! Anyway I'm writing this so those of you still in pain and Dr says it's nothing - it could be something so get it checked out! I'm under care of Neurologist now to help me find some peace and pain free days. Who knows when I'll get back to work. If anyone has experience with this or any other info - I would LOVE LOVE to hear back from you!! Thank you!
Jaw Surgery Forums » Share Your Jaw Surgery Experience!
Post Op Constant Pain - Trigeminal Neuralgia
(10 posts)-
HadEnoughOfThis
MemberPosted 1 year ago # -
Brandon
Site AdministratorThank you for sharing and so sorry to hear about this, it's the first case I've heard of so far, so I can't offer much help.
Do they think it was a result of the jaw surgery or connected in anyway?
I'm Brandon, the creator of JawSurgeryBlog.com. I personally had upper and lower jaw surgery on October 30, 2007. Thankfully, everything went beautifully, so I'm trying to make sure everyone else's surgery goes smoothly as well!
http://www.facebook.com/pages/Corrective-Jaw-Surgery/114627165257701Posted 1 year ago # -
kjcall
MemberThat sounds awful, I am so sorry. I am about 34 days away from my upper/lower jaw surgery, am nervous but also very excited. I have awful tmj and about 25% function of my mouth so it just has to be done! Anyway, my dad is a dentist as well and he had a patient (who is also a family friend) who had trigeminal neuralgia. She never had any oral surgery, so I'm not sure how it all started. But I do know it made her miserable. I know this info isn't really helpful to you, but I am just curious to what your doc w/the 2nd opinion thinks...I am curious as to what they think caused it. I do think that oral surgery could definitely create a problem like that, although it is probably very rare. (With my experience I know there is nothing too crazy! "You can't make this stuff up" is what I tell people who don't understand jaw pain!) All I can say is good luck. And good for you for insisting on getting help. It's so hard sometimes to find doctors that are helpful and have a clue, but I hope you find people who can help you!
Posted 1 year ago # -
Billie Glam
Memberfirstly i believe you i had the headache from hell for the first 2 weeks and the pain is so distracting...im 2 weeks post surgery and I take one Voltarol 3 x a day which is a pain killer and anti inflammatory in one also one other pill to protect my stomach from the voltarol so i dont get ulcers etc.
my doctor advised me to take it 6 weeks in all even if i have no pain to get the swelling down. good luck and i hope u resolve the issue.bright lights such as on the pc now give me a headache btw!! does anyone else get this?
i had upper & lower jaw surgery jan 2011. upper projected 8mm lower projected 3mm.Posted 1 year ago # -
K
MemberI am so relieved to hear someone else has this. I am also dreadfully sorry you do. I had upper and lower jaw surgery five years ago now, and have suffered since. I had my plates taken out as they thought there was an infection. But I was told it was pretty much in my head. They told me to take paracetamol, and Ibuprofen, which of course did not work. My partner happened to tell a member of his family who just so happens to be a top neurologist. He instantly told me I was suffering with nerve damage, and prescribed me anti-epileptics, along with anti-depressants. After searching for homeopathic options, or indeed anything that might help, I came across the term 'Trigeminal Neuralgia'. I could not believe it! It is comforting to know there are people out there who understand. Comforting to know I'm not insane!
I hope you are not feeling too low friend xPosted 5 months ago # -
May89
MemberHey!
I don't know if this is any reassurance but here's my story.
I was diagnosed with Trigimenal Nueralgia 3 years ago, and continued to take medication for it to ease the pain. I'm always admitted in the ER because there are time where the pain becomes unbearable to the point where I just pass out. I know what the pain is like.Anyway, I'm 22 yrs now and according to most neurologists this disease is mostly diagnosed to patients who are way older than me.
I was referred to a Hematologist and we did a few blood tests. Turns out this Trigimenal Neuralgia is infact NOT TN, but instead a severe form of migrane which resonate from my cheeks all the way to my eye. My blood results show confirm I have Lupus Anticoagulant Syndrome, a rare blood disease that causes most of my symptoms. My mother died from it because she went undiagnosed.
I'm getting proper treatment, and I can tell you I'm doing great now. My upper and lower surgery went really well. I haven't lost much blood and recovering really really fast. I'm 3 weeks post-op.
Don't lose hope, and you're not insane. I know it's horrible to go years undiagnosed and not getting the answers you want. But there's always light in that dark room.
As far as pain, I'll tell you what helped me. Although I was wrongfully diagnosed with TN, my pain was pretty much identical to it. I used Tegretol 400ML for pain and Amitriptyline to help me sleep. Neurobine helps with nerve regeneration and has lotsa B complex vitamins. Usually applying ice packs on the area of pain helped me TREMENDOUSLY. Most people heat packs work for them best.
My personal advice is just because you feel it's a nerve pain, you don't have to see and stick to a neurologist. Currently my neurologist, hematologist, oral & maxillofacial surgeon are all working together to help me get better. Get another opinion. See other doctors if you can. For all we know, it could be treatable and hopefully you'll lead a much more pain-free lifestyle.
Sending you loads of hugs and kisses!
Posted 5 months ago # -
jointherapture
MemberI'm 8 weeks after lower jaw surgery and genioplasty. I have constant pain in my chin as if someone was cutting me open continually. The pain meds helped a little bit but never took the pain away completely. When I saw the dr. after 7 weeks he told me I am the second patient in 30 years to have this problem. How did I get to be the lucky winner? Anyway, he put me on Lyrica which is used for neurological pain. I am on a low dose (75 mg/day) and it apparently can take weeks to be fully effective. I expect that they will increase the dose. It has side effects of weight gain, trembling hands and feet as well as suicidal thoughts but I haven't experienced this so far. In the mean-time I wait and suffer.
Anyone else with nerve pain should ask their doctor about Lyrica. I'd be interested to know what other doctors think about this treatment.
Posted 4 months ago # -
Lily984
MemberI'm so sorry to hear about all of your pain :(
It's still early days for me, but all I read before hand was how not painful
This surgery was, then when I got it done I was like :/ because I have been in pain. I can't imagine having it for that long. I hope you all manage to find something to helpPosted 4 months ago # -
jointherapture
MemberI was also told that there would be little pain because the nerve would be numb. The nerve is numb and I have no feeling in my chin and can stick pins in my lip without feeling anything. I'm told that the numbness could be permanent as it hasn't started resolve itself. If the pain is also caused by nerve damage I worry that it may not resolve itself either.
Posted 4 months ago # -
Peter1911
MemberI am 2 weeks post op. Had lower jaw surgery, Just wanna know my left side of my lower jaw is in constant pain and is a bit swollen but my right side is fine. Is this normal ohh and my throat hurts. Also i am on no painkillers. Hope to get an answer soon :D
Posted 1 month ago #
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