Thank you for sharing and caring. Yes, I did see a good therapist when I realized I was having the same recurring nightmare. The entire actual situation shook me up so badly that I refused to go see anyone else by myself after that happened. TG a friend stepped forward to help me, accompanying me to office visits with a new provider office (ultimately the place I finally got the correct diagnosis). The irony of it all was I worked as an RN myself, and was known for being able to handle difficult/obnoxious doctors. It’s very different when you are the patient and also this was initially diagnosed as a “dental/TMJ” issue - that meant not only was I out of my element but also every single step I took, my insurance company fought me constantly. Long story short, they don’t want to pay for “TMJ” problems because they see it as either dental and/or think it’s in your head (it was, my jaw joints, haha!). Anyway, after going over the whole story with the therapist, she’s the one who said it seemed as if I had PTSD. This was a few years after my successful surgery. I felt I needed to file a formal complaint about this supposed “specialist” dentist with the State Board of Licensing & Regulation. The therapist thought it would help me to get it all out, and it did. Of course, ultimately it was a “the patient said” vs “the dentist said” according to the Board. IF they had done any digging, they might have found evidence behind my complaint but it would have taken work on their part. I found a site where other patients had similar experiences as I did! I had lots of notes. But, water under the bridge. It helped for a long time. But now, for whatever reason, it’s suddenly back and interrupting my sleep. Argh.
A collection of all of the medical horror stories would fill a large library. I have a few of my own.
I'm turning 70 in August.
I went through the TMJ muddle 30 years ago and was given amitriptyline, which did the trick. At the time I was in a dysfunctional staff situation, and when I resigned a year later, stress was gone, TMJ was gone, and I no longer needed amitriptyline.
I spend 5-7 hours every day working in my yard, and all the other things that need to be done. The more I do, the more I pay at the end of the day. When I sit in my recliner with my feet up, or lying in bed, my feet and ankles are at 8, though, honestly, it's worse than that some days. My SCS just doesn't seem to be doing anything anymore.
I'm sure I would like to say more, but my brain isn't operating at par for some reason.
Thank you for sharing and caring. Yes, I did see a good therapist when I realized I was having the same recurring nightmare. The entire actual situation shook me up so badly that I refused to go see anyone else by myself after that happened. TG a friend stepped forward to help me, accompanying me to office visits with a new provider office (ultimately the place I finally got the correct diagnosis). The irony of it all was I worked as an RN myself, and was known for being able to handle difficult/obnoxious doctors. It’s very different when you are the patient and also this was initially diagnosed as a “dental/TMJ” issue - that meant not only was I out of my element but also every single step I took, my insurance company fought me constantly. Long story short, they don’t want to pay for “TMJ” problems because they see it as either dental and/or think it’s in your head (it was, my jaw joints, haha!). Anyway, after going over the whole story with the therapist, she’s the one who said it seemed as if I had PTSD. This was a few years after my successful surgery. I felt I needed to file a formal complaint about this supposed “specialist” dentist with the State Board of Licensing & Regulation. The therapist thought it would help me to get it all out, and it did. Of course, ultimately it was a “the patient said” vs “the dentist said” according to the Board. IF they had done any digging, they might have found evidence behind my complaint but it would have taken work on their part. I found a site where other patients had similar experiences as I did! I had lots of notes. But, water under the bridge. It helped for a long time. But now, for whatever reason, it’s suddenly back and interrupting my sleep. Argh.
@wisco50- I think that you mean that your TMJ has returned? I have had it a couple of times. There is a wonderful PT in my state who does massages and shows exercises to help relieve it. Here are some exercises. I hope that they help.
@wisco50- I think that you mean that your TMJ has returned? I have had it a couple of times. There is a wonderful PT in my state who does massages and shows exercises to help relieve it. Here are some exercises. I hope that they help.
Actually, my problem started around ‘66-‘67 when I was still in high school and was thrown off a horse, landing on one side of my face. After that my jaw began clicking and snapping and popping. I never associated the incident and never complained about the jaw because I just assumed everyone’s did that at some point. I got diagnosed with “TMJ” around 19 or 20. Told to go on a soft/no chew diet and take aspirin until it calmed down, which it always did. It flared up off and on. Then when I turned 50 it suddenly did not go away. Got worse. That’s when I knew it wasn’t a simple “TMJ” thing any longer. Other than severe L sided jaw pain I had no classic reasons or symptoms. Wasn’t stress related. Didn’t grind my teeth. Etc. Turned out my discs were permanently displaced/worn through and my joints were bone on bone, just like a patient who needs hip or knee replacement. So began the battle of finding the correct doctor to make the correct diagnosis and getting my insurance company to pay for an out of network, very specialized oral maxillofacial surgeon to remove my joints and replace them with custom made ones! So now my joints are still FINE 11 years post replacement. Hallelujah! It’s just the PTSD that is suddenly rearing it’s head again. I know I will eventually beat this again, just having a rough patch.
I started with Dr Doran Ryan at Froedert Hospital Medical Center in Wisconsin. He was partners with several others including Dr. Steven Sewall. I ended up having multiple procedures and 2 major open jaw surgeries - the first was just to really get in there and actually see what the exact situation was. The first oral surgeon I saw did some office procedures and then in 2001 an arthroscopic jaw surgery to look and clean out my joint on the L side. He found scar tissue but said my disc was intact. It gave me relief for about a year but then it flared up. He (reluctantly) did a repeat in early 2003. They take photographs and I still have them. His report indicated my disc appeared to be okay. Turns out one cannot see the entire disc during that type procedure. I remember him saying he wasn’t sure why the area looked as red as it did/something to that effect. I still can remember when I found Dr. Ryan he knew exactly what it meant - severe inflammation.
Sorry, somehow I cut myself off LOL! Anyway, it took a total of 9 1/2 years for me to keep slowly moving forward against issues with my insurance company - by then Dr Ryan was retiring - so he had an appointment made for me with him, his partner Dr Sewall, myself and the friend who had been going with me. They discussed my case, issues (including insurance) and how to proceed. I was very sorry to see Dr Ryan leave but very impressed with how coordinated they were re my care. I was really comfortable with Dr Sewall. :>) They were the only two who did total jaw joint replacements in all of WI. I would have otherwise gone to Mayo or Chicago. Froedert was 90 minutes from me. One of the things that made me so angry was neither of the first two people I saw even mentioned these 2 well known guys were practically in my own backyard. I got the name from a surgeon who did jaw joint replacements in NYC area and I found him on internet! He’s the guy who asked why I was calling him when I had pros nearby! So you can see how convoluted this was!
I had a spinal cord stimulator implanted in my back in 2004 after several failed back surgeries (the first doctor was on cocaine when he was doing a per cutaneous dissection). I won't go into the specifics of that but I was diagnosed with PTSD afterwards...it was bad. I was terrified to go back to an Orthopeadic doctor for many years afterward. The doctor I chose had an excellent reputation and he tried everything. I had a foronotomy, a laminectomy. A spinal fusion at L5 S1 level and in between all of that I had 2 spinal fluid leaks. The very first doctor almost severed my sciatic nerve and it never regenerated properly. I had to have a total hip replacement because I was walking incorrectly between the first and my present doctor. My pain management doctor had me on morphine for a full year although I was begging him to take me off of it. Finally off of the morphine the pain was unbearable! He then brought in reps for the stimulator. It initially took some of the pain away, about 25%,but at that point I was willing to try anything. I had the first one put in in 2004. Then I fell in early 2005 and the wires along my spine snapped off. So, I had to have a 2nd one put in. Another nightmare ensued because the pain management doctor did it without any anesthesia or numbing of any kind. My surgeon was absolutely furious after all that I had already been through. The representatives from Medtronic stimulator met with us several times to try to improve the outcome. Finally, 2 years ago I gave up on it and turned it on only rarely. Now I haven't turned it on for the past year. I'm on a Fentenayl patch, but still have a lot of break through pain at times. They can remove the battery from my butt, however, the wires are so buried in scar tissue that it would be extremely risky to remove them. I was told I could never have an MRI because the wires are still in my body. Please make very sure that you're getting at least 50% relief from the stimulator during the trial period or you may have the problems that I have. Also, try to find out if your doctor is being paid by the company to push the product. It happens quite often. Good luck with whichever you decide to go.
A collection of all of the medical horror stories would fill a large library. I have a few of my own.
I'm turning 70 in August.
I went through the TMJ muddle 30 years ago and was given amitriptyline, which did the trick. At the time I was in a dysfunctional staff situation, and when I resigned a year later, stress was gone, TMJ was gone, and I no longer needed amitriptyline.
I spend 5-7 hours every day working in my yard, and all the other things that need to be done. The more I do, the more I pay at the end of the day. When I sit in my recliner with my feet up, or lying in bed, my feet and ankles are at 8, though, honestly, it's worse than that some days. My SCS just doesn't seem to be doing anything anymore.
I'm sure I would like to say more, but my brain isn't operating at par for some reason.
@cbrackle I just wrote a note to you in another discussion.
I've had 3 MRIs with the SCS implant, but I want it removed, whatever I do next. Is the pain pump MRI compatible?
I'm so tired of being in so much pain. And beside that, depression and anxiety are elevated from the Covid19, one reason being that one of my meds is an immune system suppressent, putting me at a whole new level of risk.
Thanks. Normally I do well (used to living by myself), I think it’s the timing of my “anniversary” date, coupled with the COVID thing (which appears to have no end) and with my SCS I have been much more active in garden (than I have in years!) which makes my neck act up. I’m about to be 70 this summer, so it gets to be a balancing act, LOL!
Sounds like you are happy getting implanted. What type of SCS did you have implanted? Can you get MRI's of the chest and stomach with that type of SCS if necessary? Thanks, Marty
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@wisco50
A collection of all of the medical horror stories would fill a large library. I have a few of my own.
I'm turning 70 in August.
I went through the TMJ muddle 30 years ago and was given amitriptyline, which did the trick. At the time I was in a dysfunctional staff situation, and when I resigned a year later, stress was gone, TMJ was gone, and I no longer needed amitriptyline.
I spend 5-7 hours every day working in my yard, and all the other things that need to be done. The more I do, the more I pay at the end of the day. When I sit in my recliner with my feet up, or lying in bed, my feet and ankles are at 8, though, honestly, it's worse than that some days. My SCS just doesn't seem to be doing anything anymore.
I'm sure I would like to say more, but my brain isn't operating at par for some reason.
Jim
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1 Reaction@wisco50- I think that you mean that your TMJ has returned? I have had it a couple of times. There is a wonderful PT in my state who does massages and shows exercises to help relieve it. Here are some exercises. I hope that they help.
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1 ReactionActually, my problem started around ‘66-‘67 when I was still in high school and was thrown off a horse, landing on one side of my face. After that my jaw began clicking and snapping and popping. I never associated the incident and never complained about the jaw because I just assumed everyone’s did that at some point. I got diagnosed with “TMJ” around 19 or 20. Told to go on a soft/no chew diet and take aspirin until it calmed down, which it always did. It flared up off and on. Then when I turned 50 it suddenly did not go away. Got worse. That’s when I knew it wasn’t a simple “TMJ” thing any longer. Other than severe L sided jaw pain I had no classic reasons or symptoms. Wasn’t stress related. Didn’t grind my teeth. Etc. Turned out my discs were permanently displaced/worn through and my joints were bone on bone, just like a patient who needs hip or knee replacement. So began the battle of finding the correct doctor to make the correct diagnosis and getting my insurance company to pay for an out of network, very specialized oral maxillofacial surgeon to remove my joints and replace them with custom made ones! So now my joints are still FINE 11 years post replacement. Hallelujah! It’s just the PTSD that is suddenly rearing it’s head again. I know I will eventually beat this again, just having a rough patch.
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2 ReactionsThank God. Who was your surgeon?
I started with Dr Doran Ryan at Froedert Hospital Medical Center in Wisconsin. He was partners with several others including Dr. Steven Sewall. I ended up having multiple procedures and 2 major open jaw surgeries - the first was just to really get in there and actually see what the exact situation was. The first oral surgeon I saw did some office procedures and then in 2001 an arthroscopic jaw surgery to look and clean out my joint on the L side. He found scar tissue but said my disc was intact. It gave me relief for about a year but then it flared up. He (reluctantly) did a repeat in early 2003. They take photographs and I still have them. His report indicated my disc appeared to be okay. Turns out one cannot see the entire disc during that type procedure. I remember him saying he wasn’t sure why the area looked as red as it did/something to that effect. I still can remember when I found Dr. Ryan he knew exactly what it meant - severe inflammation.
Sorry, somehow I cut myself off LOL! Anyway, it took a total of 9 1/2 years for me to keep slowly moving forward against issues with my insurance company - by then Dr Ryan was retiring - so he had an appointment made for me with him, his partner Dr Sewall, myself and the friend who had been going with me. They discussed my case, issues (including insurance) and how to proceed. I was very sorry to see Dr Ryan leave but very impressed with how coordinated they were re my care. I was really comfortable with Dr Sewall. :>) They were the only two who did total jaw joint replacements in all of WI. I would have otherwise gone to Mayo or Chicago. Froedert was 90 minutes from me. One of the things that made me so angry was neither of the first two people I saw even mentioned these 2 well known guys were practically in my own backyard. I got the name from a surgeon who did jaw joint replacements in NYC area and I found him on internet! He’s the guy who asked why I was calling him when I had pros nearby! So you can see how convoluted this was!
Thank you for sharing your story. I'm sorry to hear that you have been through so much.
Thank you Jim for sharing your story.
Which SCS did you have implanted? What part of your body did you have the MRI's for? Thanks, Marty
Sounds like you are happy getting implanted. What type of SCS did you have implanted? Can you get MRI's of the chest and stomach with that type of SCS if necessary? Thanks, Marty