Yes, they keep recommending fusion and I have said No, but like you said, the pain continues and affects my quality of life. Have you heard of a place called the thebackinstituteneurosurgery ?
I'll have to post it to the site to ask others.
Even Mayo suggests fusions I think. I don't understand.
I had my left si fused.
85% of my pain is gone.
I saw a neurosurgeon.
I recovered rather quickly. 4 weeks I think.
No PT. I'M HAPPY I DID IT. I have to have my right done. Also right total hip replacement.
I just don't like the doc. That did my left side, very bad bedside manner. Lol
I had my left si fused.
85% of my pain is gone.
I saw a neurosurgeon.
I recovered rather quickly. 4 weeks I think.
No PT. I'M HAPPY I DID IT. I have to have my right done. Also right total hip replacement.
I just don't like the doc. That did my left side, very bad bedside manner. Lol
Inova Mount Vernon, Alexandria, VA. I was on a walker for only a little while.
But and this is a big BUT, I had a peritoneal bleed for no apparent reason. They couldn't find where it was coming from so they transfused me. It stopped bleeding on its own, thank the Lord, I spent the next 13 days on bed rest. So maybe 6 weeks.
I was out walking 6 weeks +1 day after my left total hip replacement (Feb 2022). Doing so well with the recovery. Walking 4-5 miles a day, at home and out patient PT. While out walking on day 1 after 6 weeks my left foot had a slight scuff over a dirt mound and I felt a twinge in my hip. When I got home I took a couple of Tylenol and lots of ice packs. After 48 hours I called the surgeon. At the visit a couple of days later, he said the X-rays looked great!!! He told me to reduce my activity for a couple of weeks. After 4 months of more dr visits, labs, imaging, lots of PT, and chiropractor visits. Finally one spine Dr said the pain and discomfort are signs of SI Joint Dysfunction. We did some diagnostic injections and then later, RF Ablation (which didn't last long) plus the same symptoms I've been experiencing have migrated over to the right side. Ugh!!! So, finely I got another pain specialist and we did SI Joint fusions (4 months apart). We used an Allograft from a company called PainTeq. Not happy with the product. Maybe because of my weight (200lbs) was too much for just the one implant on each side. The Allograft acts more like a pivot point and not a complete fusion. So, once I started to get into my normal activities (bike riding, walking, swimming), I was still experiencing the same discomfort. So, 2 days ago, my new best friend, implanted 3 SI iBone devices in my left SI Joint. Of course I haven't been able to test it, but I do feel less discomfort on the right side. I haven't taken a pain pill since Monday night. Ice is my best friend!!!
Thank you for the suggestion, @pacer3702! I have not considered disability until recently with my job loss and should talk to my doctor. I have an appointment at the end of the month and will bring this up with her. It is so hard to get a job when you are over 40 (age discrimination is very real and I work in HR!) and if you have any limitations/disabilities. I have not gotten new jobs when looking for something new over the last few years (have an excellent resume/education/experience) and believe it was due to my age and health status (probably don’t look the healthiest). I would get through phone screens just fine but once they saw me on video or in person, I was not considered further. I won’t qualify for social security until 62 but full retirement is 67 and Medicare at 65 so I have a huge gap to cover for myself while also raising a minor child.
I know this is now 2 years later. Did you apply for disability? I did in Feb 2022 and finally after 2 denials, I had a phone meeting with a judge plus I had a lawyer (25% or 6000max). I guess I passed because they gave me 100% disability. It was the best thing I could have asked for because I was receiving early retirement benefits (18 months before full retirement). I fought for the disability because the difference was about $400/month. If you filed for disability and haven'y received any compensation yet. Keep on fighting!!! Especially if you are the caregiver for a special needs child. You should be receiving something for that, I hope!!! Hope you are pain free or getting there!!!
I know this is now 2 years later. Did you apply for disability? I did in Feb 2022 and finally after 2 denials, I had a phone meeting with a judge plus I had a lawyer (25% or 6000max). I guess I passed because they gave me 100% disability. It was the best thing I could have asked for because I was receiving early retirement benefits (18 months before full retirement). I fought for the disability because the difference was about $400/month. If you filed for disability and haven'y received any compensation yet. Keep on fighting!!! Especially if you are the caregiver for a special needs child. You should be receiving something for that, I hope!!! Hope you are pain free or getting there!!!
Yes, I did apply for disability and was approved for me and my minor son. Thank you for checking in with me. I could not do it without disability since I need medical coverage for both of us and being a single parent with no help. I have had 6 surgeries in the last 4 years and anticipate more (still dealing with chronic pain in cervical and lumbar spine and it is hard to do much).
Yes, I did apply for disability and was approved for me and my minor son. Thank you for checking in with me. I could not do it without disability since I need medical coverage for both of us and being a single parent with no help. I have had 6 surgeries in the last 4 years and anticipate more (still dealing with chronic pain in cervical and lumbar spine and it is hard to do much).
I hate these pain clinics. But, sometimes they do something right.
Attached is something from a person I sat next to a a pain seminar: She had been experiencing a lot of pain for many years.
What a nice surprise to hear from you.
I saw a lot of docs but not as many as most. Trying to think back...Primary care, PA, orthopedist, physiatrist, endocrinologist, podiatrist, physical therapists, orthopedic surgeon finally confirmed it after a bone scan showed my left leg already had remodeling in it, so that coupled with tht bone loss on x-rays and all the other absurd symptoms from the many months earlier clearly made it CRPS. But often it is largely invisible if you're not in an acute flare or early in diagnosis, and there are not tests that conclusively identify for it which makes it even harder to diagnose.
It's basically based on tha patients history, what they express and what the clinician sees during a 20 min visit when symptoms vary tremendously and typically progress throughout the day. So that's a tiny snapshot. Great, huh lol
Are you thinking that the different types of pain you've experienced might be CPRS?
The thing with CRPS is it doesn't feel like any other type of pain really, even added up and like you said, I've experienced quite a few different kinds unfortunately. You certainly have too. With CRPS it's not that necessarily that there's a lot of diff types of pain though definitely lots of diff categories of sensations, or all over, it's how unique it feels. How extreme and intense it is and what influences it symptoms. For ex. your bones feel like they are literally shattered, muscles tearing, bugs crawling over your skin, pins/needles, pulling sensations, deep, deep aching of the bone, extreme sensitivity of the skin where any fabric or stimulus like wind is excruciating. There is a burning sensation the more you use the affected limb(s). It feels like the body part is not your own, like it's an aliens, you sort of disassociate from it in a weird way the most you avoid using it too. And then over time it can spread, and the painful symptoms are fueled by the sympathetic state your nervous system gets stuck in. That's what fuels the swelling, pain etc.
Does and of that sound familiar or like things you've experienced over the course of time?
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I had my left si fused.
85% of my pain is gone.
I saw a neurosurgeon.
I recovered rather quickly. 4 weeks I think.
No PT. I'M HAPPY I DID IT. I have to have my right done. Also right total hip replacement.
I just don't like the doc. That did my left side, very bad bedside manner. Lol
Good luck, God bless
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1 ReactionWhere did you have it done ? The Dr here said it would be a long recovery.
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1 ReactionInova Mount Vernon, Alexandria, VA. I was on a walker for only a little while.
But and this is a big BUT, I had a peritoneal bleed for no apparent reason. They couldn't find where it was coming from so they transfused me. It stopped bleeding on its own, thank the Lord, I spent the next 13 days on bed rest. So maybe 6 weeks.
Follow up. To my si joint fusion. It’s been8 yrs and im feeling the pain all over again. Has anyone else had this issue?
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1 ReactionSo sorry, I just can't bring myself to have it done and my PT said don't have it done.
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1 ReactionI’ve had two fusions, and from my experience, I am worse now that I was prior to the fusions. I hope others have had better results.
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2 ReactionsI was out walking 6 weeks +1 day after my left total hip replacement (Feb 2022). Doing so well with the recovery. Walking 4-5 miles a day, at home and out patient PT. While out walking on day 1 after 6 weeks my left foot had a slight scuff over a dirt mound and I felt a twinge in my hip. When I got home I took a couple of Tylenol and lots of ice packs. After 48 hours I called the surgeon. At the visit a couple of days later, he said the X-rays looked great!!! He told me to reduce my activity for a couple of weeks. After 4 months of more dr visits, labs, imaging, lots of PT, and chiropractor visits. Finally one spine Dr said the pain and discomfort are signs of SI Joint Dysfunction. We did some diagnostic injections and then later, RF Ablation (which didn't last long) plus the same symptoms I've been experiencing have migrated over to the right side. Ugh!!! So, finely I got another pain specialist and we did SI Joint fusions (4 months apart). We used an Allograft from a company called PainTeq. Not happy with the product. Maybe because of my weight (200lbs) was too much for just the one implant on each side. The Allograft acts more like a pivot point and not a complete fusion. So, once I started to get into my normal activities (bike riding, walking, swimming), I was still experiencing the same discomfort. So, 2 days ago, my new best friend, implanted 3 SI iBone devices in my left SI Joint. Of course I haven't been able to test it, but I do feel less discomfort on the right side. I haven't taken a pain pill since Monday night. Ice is my best friend!!!
I know this is now 2 years later. Did you apply for disability? I did in Feb 2022 and finally after 2 denials, I had a phone meeting with a judge plus I had a lawyer (25% or 6000max). I guess I passed because they gave me 100% disability. It was the best thing I could have asked for because I was receiving early retirement benefits (18 months before full retirement). I fought for the disability because the difference was about $400/month. If you filed for disability and haven'y received any compensation yet. Keep on fighting!!! Especially if you are the caregiver for a special needs child. You should be receiving something for that, I hope!!! Hope you are pain free or getting there!!!
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4 Reactions@j6957d
You are amazing at follow-up! 😉
Yes, I did apply for disability and was approved for me and my minor son. Thank you for checking in with me. I could not do it without disability since I need medical coverage for both of us and being a single parent with no help. I have had 6 surgeries in the last 4 years and anticipate more (still dealing with chronic pain in cervical and lumbar spine and it is hard to do much).
Hope you are well.
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Helpful -
Hug
1 ReactionI hate these pain clinics. But, sometimes they do something right.
Attached is something from a person I sat next to a a pain seminar: She had been experiencing a lot of pain for many years.
What a nice surprise to hear from you.
I saw a lot of docs but not as many as most. Trying to think back...Primary care, PA, orthopedist, physiatrist, endocrinologist, podiatrist, physical therapists, orthopedic surgeon finally confirmed it after a bone scan showed my left leg already had remodeling in it, so that coupled with tht bone loss on x-rays and all the other absurd symptoms from the many months earlier clearly made it CRPS. But often it is largely invisible if you're not in an acute flare or early in diagnosis, and there are not tests that conclusively identify for it which makes it even harder to diagnose.
It's basically based on tha patients history, what they express and what the clinician sees during a 20 min visit when symptoms vary tremendously and typically progress throughout the day. So that's a tiny snapshot. Great, huh lol
Are you thinking that the different types of pain you've experienced might be CPRS?
The thing with CRPS is it doesn't feel like any other type of pain really, even added up and like you said, I've experienced quite a few different kinds unfortunately. You certainly have too. With CRPS it's not that necessarily that there's a lot of diff types of pain though definitely lots of diff categories of sensations, or all over, it's how unique it feels. How extreme and intense it is and what influences it symptoms. For ex. your bones feel like they are literally shattered, muscles tearing, bugs crawling over your skin, pins/needles, pulling sensations, deep, deep aching of the bone, extreme sensitivity of the skin where any fabric or stimulus like wind is excruciating. There is a burning sensation the more you use the affected limb(s). It feels like the body part is not your own, like it's an aliens, you sort of disassociate from it in a weird way the most you avoid using it too. And then over time it can spread, and the painful symptoms are fueled by the sympathetic state your nervous system gets stuck in. That's what fuels the swelling, pain etc.
Does and of that sound familiar or like things you've experienced over the course of time?
I know, another thing to think about!!! UGH!!!