Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
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!
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@wisco50 Im glad I helped a little we are a caring bunch and merpreb did help me out when I became overwhelmed she is very good . I,m 77 78 in Oct and am a retired LPN from Pa . Now life in Ca as my son is here . Love the warm weather still not like our hot summers but thats alright with me . I use to have a big garden and canned but now have a garbage garden . @fiesty76 my celery is growing , I told my D.I L about it and she grew scallions. Thanks. We are from all over the world . You have joined a good group. We vent and no one criticizes us . So welcome again
Liked by migizii, fiesty76
Chronic pain is emotionally and physically exhausting. It affects everything you do, IF you can do whatever it is that you want to do. It’s just miserable and I think unless someone has been there, they just don’t understand. I can honestly say that even working in a hospital as an RN, surrounded by people of all healthcare professionals, I often felt alone and definitely misunderstood. I especially think when the person’s pain is caused by something unable to be seen by others – pain in neck, back, chronic headaches, jaw pain, etc. – then it is less likely to be believed as (even) existing, or not being “as bad” as the person says or acts, and if said chronic pain causes significant emotional distress/depression then that just adds to the burden. These days my pain is tolerable (neck and back) and with ESTylenol/NSAIDS and a SCS for my back/leg, I’m doing ok. But my other major chronic pain episode (my first experience with it) began in fall 2000 and culminated 11 years after multiple doctors/dentists/oral maxillofacial surgeons and multiple procedures including both minor and major surgeries, ending with having bilateral jaw joint replacements. Recovery was a good 6 months re swelling etc. I had profound depression through most of those years. I had been written off as a “crazy/uncooperative patient” by several of the people I sought help from. I ended up being traumatized by one so called specialist – I still have flashbacks to her screaming at me in office. Ended up being diagnosed with PTSD. (No comparison to what military deal with, please understand, just saying it was explained what was causing my symptoms.) Anyway, sorry for rambling. Been having a rough time right now with more flashbacks – thinking part of it is this social isolation and it is 11th anniversary of my surgery (about 8-9 hours) coming up. The great news is it worked! My jaw pain is no more, I can eat, smile, talk, yawn, hallelujah! I just need to shake the bad stuff back and not think about it. Thanks for listening.
@wisco50– Hello, it's nice to meet you. I'd like to invite you to join the PTSD discussion where people who have PTSD share their stories and support. My PTSD is a lot of anxiety and some fear. It really showed up as a result of my second lung cancer back in 2007. There are 5 different types of PTSD. One is not more or less severe, to me, because it depends on the person. Certainly, someone back from war has horrible memories, but as you mentioned you can't stop seeing a doctor's response to you. So whose is worse? ink of
When we are experiencing memories that are painful we are remembering a time in the past. Years have gone by since then so even the memory has changed somewhat. Also, we are not at that moment, we are in the now remembering it so only our minds can feel how awful it was. It can't hurt us now. We aren't in the war zone or in the doctor's office. You can shut the door if you want.
Perhaps @gingerw can talk about her experience with PTSD.
I feel so much for what you must be experiencing. I hope that you have sought therapy.
Have you been to therapy?
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, lioness, Ginger, Volunteer Mentor
@merpreb Thank you for asking me to comment.
@wisco50 Good to meet you. As you can see, there are many helpful people here, and we each have our own stories, our own journeys' experiences. What may be considered or diagnosed as PTSD in one person, may be given a different name by another professional. We end up relying on ourselves, and looking out for ourselves. It doesn't mean that what happened didn't happen, it means we have to decide to be a victor over the effects of it. It takes work, oftentimes hard work over a long period, and we will sometimes backslide a little. And it's okay. Working with PTSD shows we are indeed strong, and think enough of ourselves to want to feel and live better.
I invite you to look at this discussion group, and see how our stories may help you out https://connect.mayoclinic.org/discussion/anyone-else-with-ptsd/
Liked by lioness, Merry, Volunteer Mentor
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.
Liked by lioness, Merry, Volunteer Mentor, Ginger, Volunteer Mentor
I know I’ve mentioned it before, but with the SCS and DRG stimulators not helping me, the Medtronic Pain Pump (now that I have a competent provider) is making a huge difference on my legs and feet. We’re still increasing to a “therapeutic” level for me, but I can pretty much stay active on my feet all day. I pay for it at the end of the day, but that’s what the fine tuning is working on.
Now if I could just find some treatment for the rest of the chronic pain throughout my body. Looking into having my stimulators removed now that the surgical centers are reopening. The other specialists all want MRIs and since the Stim units have not been helpful at all I want them removed.
I hope you are able to get some relief soon. I’ll be praying for you.
@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.
Good to hear from you again.
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.
Liked by lioness
@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.
Liked by Jim, Volunteer Mentor, Merry, Volunteer Mentor
Thank 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!
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