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    Old 12-16-2008, 04:39 PM   #1
    zac1980
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    Please help (sorry for the length)

    I have had an ongoing issue for several years (almost 8 which is truly surreal) that revolves around a wisdom tooth extraction site. Simply put I had been having issues for quite some time at the base of my head and into my neck and shoulders. I also had problems breathing to my nose, which I attributed to a deviated septum. After several years of finding nothing I finally decided to get my wisdom teeth out (not thinking they could be causing most of the problems). Literally the 2nd day after I had them out I felt the sensation of something draining out of my sinuses. All of a sudden my sinuses loosened up and I could breath FREELY out of my nose. My neck and shoulder pain was gone, and my face looked totally different (my didn't look as swollen, my cheeks as puffy, and the dark circles were gone from under my eyes). I couldn't believe it what I was seeing and feeling. My body felt EXHAUSTED and I went to sleep for SIX hours in the middle of the afternoon (it was awesome).

    What troubled me about this whole scenario was that I was always pretty in tune with my body. I had recurrent sinus infections when I was younger and had my sinuses drained when I was eleven. I guess I was so infected once they got up in there that they had to disect a large part of my membrane. Thereafter I had headaches nonstop for 3 months, but once my membrane completely healed I felt like a new person. But before the surgery I always had drainage, and usually colored mucous. It was always obvious when I had an infection. But leading up to my wisdom teeth surgery I really didn't have much drainage, and didn't have the colored mucous. I just didn't get it.

    I thought everything was fine until I went back to classes (college) and bore the brunt of the Iowa winter. Everytime I went outside (in the cold) my upper two sockets would hurt and it bothered my breathing. Initially thinking I had dry sockets, I went back to the oral surgeon only to be told I had good clots and the pain should subside. I believed him and went on my way.

    My bottom two sockets caved in and caused me no problems and eventually my upper right did the same. The upper left however, hurt like hell every time I went outside. Then one day it hurt worse than any other day, and I noticed a tissue bubble forming inside the socket off the back edge of the abutting molar. Over the next hour it swelled up and encompassed the entire socket. The tissue hurt like hell to the touch, and it felt as if my sinus was being pulled down to that spot. My head hurt severely and I couldn't breath (I thought my sinus had dipped down into my socket). Needless to say I went back to the oral surgeon.

    The first time he examined me he said the tissue appeared "pink and healthy" and that the Xrays looked fine. I told him I didn't care what he thougth he saw, there was something going on and it was extremely painful. After I came back for the THIRD time, he finally decided to reopen the socket (to the sinus) and let it start from scratch.

    Right away I felt better, but nowhere near 100%. Over the next three weeks the area began to heal, and was accompanied by extreme itching and tickling sensations. Every I ate the area would feel "tight" for about 2 hours, then loosen up and feel itchy and tickly. This persisted for three weeks, with the area of itching and tickling getting smaller by the day. Also as this was happening it felt as if something was "pulling out" of the socket. My breathing improved and my headaches dissipated. It was if I could feel my sinus pull across (to my right side) my palatte. Then on a day where the itching and tickling subsided, I decided to go workout and then sat in the sauna.

    In retrospect going into the sauna may have been the biggest mistake in my life. Upon entering I felt a very small area (in the region of my socket) itch and tickle profusely, so strong I wanted to reach up into my face and scratch it. I stayed in the sauna for 10-15 minutes as this continued. It didn't hurt, it just itched and tickled so I thought it was healing. I went back to my dorm, showered, and went to bed feeling a little stuffy. But it really wasn't a big deal.

    Or so I thought. I woke up about three hours later and the swelling (tissue bubble) came back. While healing the contours of the socket (as it healed into a nub) felt EXACTLY like all the others. However once the swelling came back the socket opened up and I could feel the softer tissue just like I did before. Unfortunately I hadn't been back to the oral surgeon since the first bubble's removal as I was feeling better and didn't think it was necessary. This meant he hadn't seen how it was "suppose" to heal, and thus said "everthing looks normal" when I went back. Again it was as if my sinus was pulling towards the socket and the tissue was painful to the touch. I was furious when he told me he wouldn't dig it back out and he gave me little direction as to what might be the problem or what to do.

    The next several months I went to several oral surgeons in the area (many in the same group, big mistake) trying to get the socket excised a second time. I didn't know whether it was infected (antibiotics did nothing), something healed out of place, or what but something wasn't right and it was in that localized area. After a few months I finally went to an ENT and had a CAT scan. This guy sucked and pretty much said my sinuses were fine and my troubled breathing was an allergy issue. Having had allergies all my life I know the difference and know when they are bothering me. This definately was not allergies. I tried to convince him to roto rooter that area out but he didn't listen. I really didn't know what to do.

    As this was happening my condition was getting exponentially worse. My entire head was being pulled to that area so intensely that it felt as if my head was in a ringer. In fact it got so bad that my vision blurred, I had to drop out of college, and my neck and the rest of my body got so tight that my toes were curling and I couldn't uncurl them. It was so painful I literally wanted to die. My family thought I was losing it as I was almost incoherent from the pain. It was like a double slap in the face. The pain was bad enough, but the fact that nobody would listen or do anything was almost as bad. I knew if they knew what I was going thought they'd excise the area or clean out my sinuses in that vicinity on the spot. But they couldn't and whatever was going on wasn't obvious to the naked eye. What was though was that I couldn't breathe (especially on my left side) and that nobody could give me any answers.

    Over the next 6 months things kept getting worse. I'd liken it to pulling on a rubber band at one end. The tension on the band won't release until you let go of the end of the band. My body felt like it was being pulled to this one spot and it couldn't release until my problem was fixed. My muscles burned more and more each day as what little sleep I got was useless. About 50 percent of my hair fell out as my scalp became a mess (what I assume is a lack of blood flow due to the tension). I couldn't work, and went off my dad's insurance because I couldn't go to school. I had no money and some of my family members acted perturbed as if this was MY FAULT and I had control. I wish I did but I couldn't make it go away.

    At the end of those 6 months I FINALLY found an oral surgeon that would (partially listen). I could take a toothpick and easily indent the soft tissue in the problematic "healed" socket. He said "I don't think that's right" and I finally thought I was going to be fixed. To my dismay he only wanted to excise up to the newly formed bone, stating "going up into the sinus is a bad idea". I tried to explain to him I wanted ALL of that tissue removed and said he needed to let it heal from scratch again. He didn't listen and removed the funky tissue. It was biopsied and it was found to be a tissue fibroma. He said it was a reactionary tissue that usually in and of itself shouldn't cause a problem. It helped a lllliiiiitttlllle bit, but I was still in quite a bit of pain. I didn't know what to do or where to turn and had no money to do so.

    Over the next three years I felt a little better by the year, but still had that intense pulling sensation. My head felt like it was (still) in a vice, and was unable to work or go back to school. I scoured the internet and tried to find something matched my symptoms but nothing. Eventually I felt well enough to where I could go back to school and get the grades to graduate successfully. I also thought that I'd eventually find out what was plaguing me and get it solved.

    Well I went back to school and bs'd my way through, even though I was at about 30%. Everything was difficult as my head always felt like it was in a ringer and had difficulty breathing. But as a way to overcome my situation I chose health and fitness as my major. I wanted to do something active as I spent more time sitting on my *** than I ever thought I would. Went back to several more ENTs, oral surgeons, and even some dentists. In the end I was either completely misdiagnosed, or tried several "solutions" to no avail. Allthewhile I maintaid something was amiss and insisted that the area be cleaned out and allowed to reheal. But the doctors were stiff opposition.

    Now I'm in the KC region with a new job in a new home. Within the last year I actually had an oral bone biopsy of a small piece of bone of the bone that had formed between the sinus and oral cavity. The biopsy came back negative, but the first few days after the surgery the pulling kind of subsided, only to return in a more vigorous force. I actually got on some clyndimycin and felt the best I had in 7 years. It was if something was getting ****** off, and my head felt much looser. I got off and it came back. I went back on for another week and I felt better. However the oral surgeon and ENT I was seeing at the time decided it wasn't smart to play "shotgun" antibiotics. I felt worse again, and tried one more round several weeks later which did nothing. Which brings me to now. Things are getting worse again and I want to bash my head into a wall and watch it explode. When my head gets really bad, my scalp and face get really dry which is disgusting (doesn't sound related I know, but once you live it becomes quite obvious scalpal blood flow is restricted). I'm getting about 2 hours (at most) of sleep most nights, and on the nights that I get more I still feel like a zombie due to the tension created in my head. Usually I'm not one to cry, but I'm objective and honest enough to admit I really do have it worse than most people.

    Now that my story's laid out you can hopefully understand what I'm going through and what I'm up against. I've obviously done some research and thought about this nonstop and think there is a possibility that I had a sinus infection around the area of that wisdom tooth. What I don't understand though is my lack of drainage, and the inability for the CT scan to pick it up (I also had an MRI that was negative). Also when I've had some ENTs scope up into the sinus to look they say everything "looks" fine in that area. My contention is that whatever is going on is affecting the underlining of my membrane (through direct or indirect means). I've also postulated that the fibroma grew off the membrane and forced the socket open. Once the bone formed it put additional pressure on the membrane which result in the severe pain and pulling. I also thought there could be some scar tissue on the bottom of the membrane, thus creating the pulling sensation. What I can't figure out though is why would the swelling go downward, forcing the socket open (after it had seemingly heeled) instead of going upward into empty space?? Another thing that I have been feeling, especially the last few months is a watery sensation as if something's trapped or growing. No matter what something just doesn't make sense.

    So then the other big question is WHY CAN'T I GET ANYTHING DONE!! I've tried countless recommendations from mouthguards (for misdiagnosed TMJ), to fixing my deviated septum, to allergy meds et cetera. Yet in the end not ONE doctor has been able to explain why any of these things occurred. Most of the time I also get "I've been doing this for 30 years and not had ONE patient describe these things". So I say, "then this is a unique problem right?". They say, "well yeah". Then I say "well don't unique problems often have unique solutions". What will it hurt to TRY what I am suggesting: clean out the area, sample the sinus tissue in the area (specifically the underlining), and let it heal from scratch. The ONLY THING that' s worked since I first got the bubble was when they cleaned it out. That's what I don't understand, why the resistance?? I'm not looking to sue, or be a problem patient, I just want to feel HUMAN again. And unfortunately I've been dealing with this long enough to where I feel like I know more (about my condition) than the doctors do since they don't know what's going on. All I know is something isn't right, and it is messing with my sinuses in a relatively small area. The tissue bubble is obviously important as it has occurred TWICE in the same spot. Yet here I sit in agony and pain.

    So my plea to you is one of help. Have you had a situation, or had a friend in a situation, with a misdiagnosed sinus infection or related problem that wasn't exposed on a CTscan?? I know when I was younger they didn't realize the extent of my infection until they got in there. Also, is it possible to be infected without any discharge?? Or for the sinuses to heal abnormally even though the top surface appears fine? I'm just looking for answers and running out of places to look.

    As a sidenote I found an ENT down here that may finally be listening to me. He said my septum looks good enough to where it shouldn't be the cause of my swelling (no duh). He also agreed it would be a good idea to debride the bone, sample tissue, and let it heal from scratch. I'm doing what I can on my end, but any additional help would be appreciated. I appreciate anybody to read through this crap and offer assistance. It really is a complex problem that can't be summarized to well without missing important information.

     
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    Old 07-05-2009, 11:03 PM   #2
    Thelma-Louise
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    Re: I would appreciate any help and insight (sorry for the "mini novel")

    Boy you have really had it rough - I am so sorry you have had to live with this for so long. It seems you do indeed have a very complex issue going on but I am pretty sure once you find the right dr this can be figured out and resolved. It sounds like a neuromuscular or musculo-skeletal condition or underlying undiganosed skeletal abnormality complicated by the trauma induced during the wisdom teeth removal.

    Do you recall any childhood accidents or mishpas just prior to your teens such sports, outdoor activites, etc - any blows to the head, face or neck?

    What was the MRI on - head or c-spine? or mandible and maxilla? What were the results - any abnormalities identified?

    Have you been to a neurologist somewhere during all of this and if so was the trimengial nerve evaluated or examained?

    What type of chiro have you been treated by?

    Did the oral surgeons you have seen check for necrosis or dead bone? Has the bone density been checked on the left side near that one spot that has the "bubble" forming? Have you seen a periodontist?

    Did you ever have ortho or braces done?

    In general - how has the over all health of your teeth and gums been - have you had extensive dental work done over the years or noticed any changes in your bite or your the appearance of your teeth or how your teeth meet?

    You do need to find a specialist - but not just a dr trained in tmj - you need someone who is trained in the orthopedics of the mouth and cranio-facial conditions or issue.They are out there but hard to find as you have pointed out. You may have to travel to find the right dr to treat this but at this point it very might be well worth the time, effort and money. Have you been searching for diff types of drs or are not sure how to find them or what to search under? I would contact a few of the more well known tmj surgeons such as Piper or Tarro or check the Great TMJ Dr thread for surgeons or do an Advanced Search on this forum - and send them what you have written here and see if they can help steer you in the right direction.

    PS I have had both the needle EMG and surface EMG done - for me they only determined that my muscles were overly responsive to slight stimulus - but b/c of your history with the surgery it might be worth enduring (I found the needle EMG painful) if they can determine if there is any damage or scarring of the nerve pathways causing some of this.

     
    Old 07-06-2009, 04:43 AM   #3
    zac1980
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    Re: I would appreciate any help and insight (sorry for the "mini novel")

    Thanks for the response.

    It's shorly after 5 in the morning and I am unable to sleep due to the pain. I'm afraid it's getting exponentially worse. I've also attempted to massage my jaw/facial muscles but this just results in pain due to the enormous amounts of tension.

    As far as the CTs or MRIs are concerned, only my last CT showed any abnormalities. I had an oro-antral fistula that occurred AFTER I had a surgery in Colorado in March. At that time I had a cyst forming off of a root of a molar on the side I had problems on. The doctor, who I think highly of, removed the tooth and debrided a bunch of bone and tissue. For a while I felt a little better, but as the area healed the tension resumed again. That's when the CT reveled a communication between the oral cavity and the sinus. I had sinus surgery to ensure I was draining properly, then had oral surgery to repair the hole. Again I felt better for a while after this surgery, but it resumed as the healing progressed.

    I am thoroughly convinced the MRIs are worthless and that they wouldn't even show a problem if it existed (as the area is so small and isolated). The last one I had done didn't even show the fistula that was obvious via CT. I don't know if this makes sense to anyone else, but when I put my fingers in my mouth (back by the old sockets) there is a build up of tissue in the back that is slightly lower than on the right side. When I open my mouth wide and feel back there it's almost as if a muscle or ligament is pulled down to the spot. That's why it seems like it's more of a soft tissue issue than anything else.

    To answer your other questions, I have never had braces nor have I had any traumatic injuries (I suspect my initial onset of problems coincided with the formation of my teeth, but those Xrays were destroyed a while ago). I have seen a couple neurologists, one being someone from KU med. He seemed convinced that my problems were related to trigeminal neuralgia and prescribed a gabapentin, which is basically is Neurontin. Until now I haven't taken the drug as this happen to coincide with the other surgeries and I wanted to gauge their effects first.

    To be honest I'm REAL apprehensive regarding this treatment as I don't display ANY of the symptoms I've seen regarding TN. Their pain is typified generally through intense electrical type shocks, and most (not all) seem to have trigger points. I have never had any electrical shock type pain, and all of my pain is the result of the massive cranofacial tension. When I've prompted several sufferers of TN regarding my pain, there don't seem to be any parallels outside of location. Then I look at all of the symptoms that I've had in the past/present and its a PERFECT match with TMJ. The only thing is that I think I developed a unique mechanism for the cause of the problem with the tissue bubble/scar tissue that developed in the socket location. Where itseems many people's TMJ is caused by the joint, I think mine is caused by the positioning of soft tissues and an improper healing for my body.

    In any case, my left cheek muscle appears to be in constant spasm and this never subsides. Also my jaw is becoming more painful to open as musculature and ligaments are etremely tight on that side. What I need to find is a TMJ specialist that really investigates the relationship between the muscles and the soft tissue, as several doctors seem to concur that my joint doesn't really seem to be the problem. I think it would be extremlely interesting to find someone that would redo the wisdom tooth area and let it heal from scratch as that has been the only thing that's worked up until this point.

    This is why I was curious as to whether someone here had reconstructive surgery where the doctor realigned or repositioned soft tissue/ligaments outside of the immediate TM joint area. Furthermore I am interested if there are more advanced scanning techniques that offer enhanced imagery of the muscle, ligament, during real time as a patient goes through a full range of motion.

    I think I'm going to call a local dentist I saw about 4 weeks ago after the last oral surgery. He was very open minded and he has a particular interest in TMJ and unusual cases like mine. All I know is that I need to find some relief as this is ruining my life. Again thanks for everyone's help and I'll keep you updated with what I find out.

     
    Old 07-06-2009, 06:56 AM   #4
    Thelma-Louise
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    Re: I would appreciate any help and insight (sorry for the "mini novel")

    You may want to search around for a dentist who has an ICAT - not necessarily to let him treat you but for the purpose of having digital images done - an ICAT is basically a dental CT scan and is rather new technology but it does show in great detail the areas you have mentioned - plus it can be loaded to a cd and emailed or brought with you to various drs for consults.

     
    Old 07-06-2009, 04:34 PM   #5
    thatbrian
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    Re: I would appreciate any help and insight (sorry for the "mini novel")

    You can find a dentist/orthodontist/oral surgeon with an ICAT by calling Imaging Sciences International in PA.

    Quote:
    Originally Posted by Thelma-Louise View Post
    You may want to search around for a dentist who has an ICAT - not necessarily to let him treat you but for the purpose of having digital images done - an ICAT is basically a dental CT scan and is rather new technology but it does show in great detail the areas you have mentioned - plus it can be loaded to a cd and emailed or brought with you to various drs for consults.

     
    Old 07-07-2009, 05:41 PM   #6
    zac1980
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    Re: I would appreciate any help and insight (sorry for the "mini novel")

    Quote:
    Originally Posted by thatbrian View Post
    You can find a dentist/orthodontist/oral surgeon with an ICAT by calling Imaging Sciences International in PA.

    I called the dentist I trust today and they also advised me to get an ICAT scan and I got one scheduled for Thursday afternoon. My appt with the dentist will then follow this upcoming Tuesday.

    One thing I'm curious to know is if the scan shows clear defintion of the muscles, ligaments, and soft tissue in the area or if it simply shows bone, weak outlines of tissue, and voids/cavities. The cheek muscle on the left side juts out (the tension here is intense) profusely near my 1st (and only) molar on that side, and I wonder if that scan could pick that up. It also feels like its trying to flip inside out as if something healed out of place.

    I guess I wait and see what happens.

     
    Old 10-17-2009, 02:32 PM   #7
    Thelma-Louise
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    Re: I need some advice/help (I tried to make it short but failed miserably)

    Yours is a gut wrenching tragic story - I hung on every word, so true and so poigant - I could relate to almost every aspect of it - especially the last paragraph - my heart goes out to you. I wish I had some answers or ideas for you - its obvious you have some type of cranio-maxilla issue going on which allowed the fistula to develop. Did the fistula ever get repaired? Are you sure it was a mogo and not a MAGO orthotic that you tried? Was it an upper appliance? have you seen a maxillary surgeon with myofacial pain treatment experience. Have your tried an ALF? there's a dr in texas I believe that treats upper maxillary issues -

    edited

    I can't even recall his name right now - I will do my best to look for it.

    Hopefully others will post with more suggestions. Hang in there.

    Last edited by Administrator; 10-19-2009 at 09:48 PM.

     
    Old 10-19-2009, 08:16 PM   #8
    zac1980
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    Re: I need some advice/help (I tried to make it short but failed miserably)

    [QUOTE=Thelma-Louise;4101973]Yours is a gut wrenching tragic story - I hung on every word, so true and so poigant - I could relate to almost every aspect of it - especially the last paragraph - my heart goes out to you. I wish I had some answers or ideas for you - its obvious you have some type of cranio-maxilla issue going on which allowed the fistula to develop. Did the fistula ever get repaired? Are you sure it was a mogo and not a MAGO orthotic that you tried? Was it an upper appliance? have you seen a maxillary surgeon with myofacial pain treatment experience. Have your tried an ALF? there's a dr in texas I believe that treats upper maxillary issues - I think I may still have his website somewhere but can not post it here so when and if I find it I will try and send it privately. I can't even recall his name right now - I just recall reading his web site regarding upper palate and maxilla issues and he made it seem so treatable so I will do my best to look for it.

    Hopefully others will post with more suggestions. Hang in there.

    I found a website of a guy that seemed like a possbility and he is now at a Texas university I believe. I tried calling to see if I could send information but they wanted me to make an appt. But without knowing that the guy/a guy is a great person it's HARD to make the travel arrangments, pay the money, and take the time off work if it's a WASTE of TIME (which is what usually haopens). Right now the only thing I have going for me is my job, and I'm doing everything I can to work appts. around it. So when I do take my shots, I prefer a chance to send in my stuff for a possible triage/review if possible. But few places outside of the Cleveland Clinic even do that.

    As far as the other stuff in your post I think it is a MAGO, I just didn't know how to spell it; and yes, it is an upper appliance. I had the fistula repaired once but it apparently didn't work, though it didn't relieve all of my symptoms (again something is effed up farther back and it seems like its not allowing that area to heal properly). As far as an ALF appliance, I didnt' even know what it was until I looked it up, but no I have not used it.

    I have been looking up things non-stop such as: increased intraosseus pressure (now lots of pressure when pressing on my palate and maxilla on that side), ciriculation blockage, perforations, pretty much anything that could realistically be causing my problem. I've also tried looking up muscle inversion and fusion as the zygomaticus started jutting out immediately upon the formation of the fibroma.

    I just can't believe it's gone on this long without someone doing a thorough exploratory of the surrounding region. But it is EXTREMELY hard to find the right people. It also makes it harder combing through this website as I don't believe my problem is TMJ in the strictist sense.

    This last week has been pretty rough
    <edited>

    Again my many thanks. I'm not going down without a fight, but it's just so hard to find the right people...if they even exist in my case.

    Last edited by Administrator; 10-19-2009 at 09:47 PM. Reason: removed inappropriate details

     
    Old 10-19-2009, 11:57 PM   #9
    zac1980
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    Re: I need some advice/help (I tried to make it short but failed miserably)

    Quote:
    Originally Posted by Administrator View Post
    Your posts have been merged into one thread.
    Thanks mod.

     
    Old 10-22-2009, 04:24 PM   #10
    bearsky
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    Re: Please help (sorry for the length)

    That is the worst story I have ever read. I feel so bad for you. I have been taking Gabapentin for 3 years. I had some food poisoning with campylobacter (ate raw chicken on salad) sent it back but did digest some of it. It gave me some horrible nervous system symptoms. I thought I was dying. After 3 months-they said try the Gabapentin. It worked slowly but surely. If it is a nerve issue this medicine is worth a try. Shelley

     
    Old 03-27-2010, 09:00 PM   #11
    Epictetus
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    Re: Please help (sorry for the length)

    I think you got better after each surgery b/c of the pain killer used (I've had some personal experience with this). I've read that pain killers fight some viruses. You also probably have a nasty bacterial infection that vies with that virus (so that the clyndimycin helped by giving your body one enemy temporarily). I'd recommend assiting your immune system with vitamins A, D and C; the amounts you need might vary. Also consider Mg, zinc, and occasional copper.

     
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