Welcome to Mayo Connect. I don't know if you read my experience with a stimulator, so in a brief summary - I had a Burst DR spinal cord stimulator implant in June of 2015, gave me great relief from small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs. It was effective for 2 years, then it became necessary to make adjustments to it every 3 months. After 2 years of that, it had become less and less effective, and now does nothing to relieve the pain. I'm trying to see the neurospecialist to discuss a dorsal root ganglion stimulator implant, but my appointment keeps getting bumped back.
Getting close to the end of my options is discouraging and disappointing. Living with chronic pain for which there seems to be no treatment wears us down, doesn't it. I wonder if AARP might have some resources to advocate for you. Are you wanting to have surgery on your back or a new stimulator?
One of the people in this group is amazing when it comes to finding helpful information is @johnbishop . Perhaps he will have some suggestions.
I'm a couple of months from turning 70, and I've been curious to see if I'm treated any differently at 70. I hope not.
Sorry it took me a couple of days to find your message. I'm really busy these days with my yard work.
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.
Welcome to Mayo Connect. I don't know if you read my experience with a stimulator, so in a brief summary - I had a Burst DR spinal cord stimulator implant in June of 2015, gave me great relief from small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs. It was effective for 2 years, then it became necessary to make adjustments to it every 3 months. After 2 years of that, it had become less and less effective, and now does nothing to relieve the pain. I'm trying to see the neurospecialist to discuss a dorsal root ganglion stimulator implant, but my appointment keeps getting bumped back.
Getting close to the end of my options is discouraging and disappointing. Living with chronic pain for which there seems to be no treatment wears us down, doesn't it. I wonder if AARP might have some resources to advocate for you. Are you wanting to have surgery on your back or a new stimulator?
One of the people in this group is amazing when it comes to finding helpful information is @johnbishop . Perhaps he will have some suggestions.
I'm a couple of months from turning 70, and I've been curious to see if I'm treated any differently at 70. I hope not.
Sorry it took me a couple of days to find your message. I'm really busy these days with my yard work.
Jim,
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.
Carl
I have had a Boston Scientific Spinal Cord Stimulator since 2012. Spinal cord injury at work. Complete lower lumbar. (2000) Pain for years.Leg seizing all the time, etc. Dr Abram,Burger / Phoenix, Az. did the operation & I have been doing well until 2018. My fusion collapsed due to degeneration/ age, etc. No one will see me now because I have had 3 Drs. before. Unable to find someone in Florida that will help me. Constant pain now & no longer mobile. Refer from Mayo to Baptist.Due to advanced condition, refused.
Hello @armsteaddarlene, I would like to add my welcome to Connect along with @jimhd and other members. You mentioned you were referred from Mayo to Baptist (Baptist Medical Center?) but were refused due to advanced condition. Are you currently being treated at Mayo Clinic in Florida?
Are you able to share more about the collapsed fusion and the reason for the referral?
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 I want to welcome you to connect where we cant diagnose but are a caring bunch of people who try to help . I,m so sorry for your isolation you have . I would like to ask @merpreb to talk with you here as she has PTSD also and is a cancer lung survivor .
@wisco50 I want to welcome you to connect where we cant diagnose but are a caring bunch of people who try to help . I,m so sorry for your isolation you have . I would like to ask @merpreb to talk with you here as she has PTSD also and is a cancer lung survivor .
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!
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!
@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
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.
@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.
@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/
Ginger
@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.
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.
Jim,
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.
Carl
@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.
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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.
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5 ReactionsJim,
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.
Carl
Hello @armsteaddarlene, I would like to add my welcome to Connect along with @jimhd and other members. You mentioned you were referred from Mayo to Baptist (Baptist Medical Center?) but were refused due to advanced condition. Are you currently being treated at Mayo Clinic in Florida?
Are you able to share more about the collapsed fusion and the reason for the referral?
@wisco50 I want to welcome you to connect where we cant diagnose but are a caring bunch of people who try to help . I,m so sorry for your isolation you have . I would like to ask @merpreb to talk with you here as she has PTSD also and is a cancer lung survivor .
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!
@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
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Like -
Helpful -
Hug
2 Reactions@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.
https://psychcentral.com/lib/types-of-ptsd/
https://connect.mayoclinic.org/discussion/anyone-else-with-ptsd/?pg=39#comment-401759
https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967
Have you been to therapy?
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4 Reactions@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/
Ginger
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2 ReactionsThank 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.
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Helpful -
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3 Reactions@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.
Jim