Sacroiliac joint pain and my introduction

Good to know!

@sunshine22220 Welcome to Connect. I am sorry you are having so much trouble. I had trouble with titanium after an ankle fracture and I had the hardware removed. I am also a cervical spine surgery patient, but I had a single level fused with no hardware. I hope you do find a doctor who can help.

If you want to go to Mayo, the first step is to find out if you have insurance that covers Mayo as "in network." You need that to get an appointment. I suggest contact the billing office to inquire. You can find insurance information at this link.
https://www.mayoclinic.org/billing-insurance
If you wish to request an appointment, you can start with this link and someone will contact you. http://mayocl.in/1mtmR63

I did meet a surgeon at Mayo who is going to remove the hardware. He will replace it with something else he uses. I'm just waiting for them to send over all my notes to insurance.
When you had your hardware in did you get redness and burning over your ankle? I have burning and it's red hot. I've never met anyone who's had this. None of the 12 drs I've seen know what this is our ever saw it before. It has to be taken out. Did you get any relief when they took the hardware out?

@sunshine22220 I see your back is very red. Wow! My immune response to metals wasn't that strong. With my ankle fracture, my ankle was warmer than the non injured one, but not excessively hot, and it was a bit reddish or purplish with slight swelling. It hurt all the time like someone kicked me and it throbbed. I was getting skin pigment forming slightly over the plates, and I had hives all the time that would expand to cover large areas on arms and legs or my belly. I had to stay on antihistamines all the time or the itching was severe and hives would start easily where clothing contacted my skin, but the patches of hives could come up anywhere. Perhaps this would have become more severe if the surgical hardware was in my body longer, but it was removed at 18 months.

I have some background on understanding my body's reaction to foreign materials and metals. A a kid I broke my teeth which resulted in a lot of dental work and root canals and crowns with various metals that would be replaced and redone over the years. I developed allergic asthma, and when the old root canals failed, I had all the old crowns and bad teeth removed and got ceramic Zirconia dental implants (no metals). My asthma improved immediately. My old silver fillings had been replaced by safer composites by a biological dentist. I was metal free for the first time in 50 years and my health improved dramatically until I broke my ankle and got titanium plates and screws. None of that metal is pure as these are alloys (mixtures), so I don't know specifically which metals caused the issues, and I had a lot of years of exposure with the dental work.

The first 6 months after the ankle surgery seemed OK, but with a lot of pain because that is a very painful injury and recovery. The hives started at the 6 month mark, and I had to wait at least a year before the titanium could be removed. I waited 18 months, and had the hardware removed which improved those symptoms of hives and throbbing pain immediately. I had pain from the surgery of course, but it was better. I am now 4 years past the fracture injury, and a bit over 2 and a half years after hardware removal. I don't have the former hardware pain at all, but I still have some discomfort with ankle tendons and ligaments that can fatigue and ache. That's because of the injury, not hardware. My orthopedic surgeon at Mayo said about 20% of patients have hardware removed after surgery like mine because of pain. He didn't know if the hives were related to having the hardware, but I thought so, and I don't have issues with hives now, so I accept that as being related to metal exposure. I have no metals in my body now and my asthma improved after the surgical hardware was removed.

The field of Environmental medicine does help patients with immune responses to foreign materials from surgical implants and metals. You could look at the Environmental Health Center Dallas as they have some information on their website. https://www.ehcd.com/

I think you'll be better after the metals are removed as long as what is placed inside your body doesn't cause a similar problem. Did your doctor do testing for metal sensitivity? That's not fool proof, because you can always develop a sensitivity further down the road after a period of exposure. I am also a spine surgery patient and I had a cervical fusion at C5/C6 done without hardware and I just received a donor bone implant and I stayed in a neck brace until it fused. That was the best choice I could have made knowing what I know now.

When is your surgery scheduled?

Jennifer

My husband tried ten mattresses before he found comfort. Now his sacroiliac joint is causing horrible pain. He just bought a TENS unit to try for pain relief. Anyone had luck with a TENS? He also has the option of paying for an ablation of the sacroiliac joint. Insurance won’t cover it because ablation in that area is considered experimental. He is desperate.

I had a laminectomy L4-5 w/fusion 12/2022. Per my MRI I have a lot of spondylitis, narrowing up/down my lumbar spine.

I have had 2 epidurals with relief from the last one in early January. I was just scheduled this a.m. for an ablation at the sacroiliac joints. I am afraid of this!! I want an epidural, I’m afraid of doing something so permanent as an ablation.

I’m also trying to find info on which is better - an ablation or a nerve stimulator. I’ve just found this website and this week found out about the doc wanting an ablation.

I am using straight Medicare with a supplemental plan - I’ve never paid a penny for anything health related. If MC is paying for something, it is definitely not experimental.

I would appeal the insurance company’s decision. This has been the standard of care for years. It’s just something I wasn’t interested in.

I’ve used a TENS unit both before and after surgery. It helped a bit, but wasn’t long lasting.

I was originally injured in 1979 - I was an RN. Had surgery in 1987. More or less o.k. Would occasionally have my back ‘go out’ for no reason. Now as a nurse practitioner, I have the ability to work around time off issues. This helps a bit w/the pain, only because my stress levels aren’t so high.

Good luck!

You have been through so much. My husband has been through two spinal ablations and they helped a lot. Just not in the sacroiliac joint. He is not scared to get another. Dr is giving him a good price and does them in the office. Be sure to choose a Dr who does lots of ablations. I wouldn’t let one do it who hasn’t done a lot. Wishing you pain relief.

Thanks Queenie. Was your husband afraid of getting paralyzed or made worse? I answered another girl that I am leaning towards the ablation, only because of the risk of infection with implanting the device, then running the wires to my back. If they accidentally get displaced - it’s another surgery to replace them. Another infection risk, etc.

This guy will be doing it in the office, does do a lot of them. Takes ~1 hr.

From I’m what I’m starting to read, the worse that can happen is I won’t get any results.

Why did he need two? And how did the need for the second one present? Does pain/stiffness return?

I’m afraid, that because I basically don’t due anything when I don’t work - which is in 3 month spurts, then nothing until I decide on another assignment, that my core muscles are weak. I just got a PT referral with building my core as my goal.

I can’t walk 75 feet without stopping and having to lean on my knees - bending my back forward. Pushing the shopping cart is a life-saver. Getting out of my husband’s car (Model Y Tesla), so its SUV like, is still difficult. Forget my car. About 4” off the ground. Unless I can fling the door all the way open, put both legs on ground, and rock my butt to finally get the momentum to get up out of the thing, I’m stuck!! I love my car, but I think I need a big, tall SUV.

How does your husband feel or know when it’s time for him to get another ablation? Anything like I’ve described? Is he still working?

I’m a pediatric nurse practitioner. During my last assignment (1/24-3/24), also the first since surgery, I was like an old lady. I would sit in the exam room to talk before examining the kid. There were a few times I could not get back up. Joked how my body wasn’t used to ME/Canada winters, coming from FL! No-one said anything. That was scary - the never knowing.

The good thing was they rented me a Grand Cherokee LTD 4XE (electric plug in). The thing was awesome - climbed up into it and slid down out of it! Again, I think my rag-top is gonna have to be a thing in the past - unless the ablation works.

Does DH deal with this? Does he get sciatica? That is much more rare. It’s the pain of going from standing to sitting and vice versa. And inability to walk far or fast that are driving me crazy.

Right now I am sitting in my Svago zero-recliner with the massage and heat functions going. My feet are higher than my head. This works, because it takes pressure off my back. Forget sitting on the couch or most other chairs.

I go through mattresses like no-one else. We have a king adjustable bed, so 2 twin-xl’s. Loved it until recently. It’s a hybrid, so has coils, foam 14” deep. When I sleep on my side, I hurt so much when I roll over, and God forbid I have to get up at the same time, I drag myself across the small dresser I use as an end table, then stumble to large dresser, ‘owwwing’ the whole way to bathroom!

Past 2 nights I slept in the guest room on a regular mattress - huge difference! I paid a lot for our current mattresses, ~18 mo ago. Second set. Still love the base which also does zero gravity, or raises head/feet, massages.

Please let me know if your DH has tried furniture that works!! Even out by the pool, I have 2 zero recliners - ‘BJ’s specials’!! Nothing fancy.

Sorry to go on and on!
Karen

Dear Karen,
The reason my husband had two spinal ablations they told him in case something went wrong it would only affect half your back and you could still walk. He also said he had never had anyone paralyzed. He said there was more risk of paralysis from the required two sets of test numbing injections done prior to ablation. It can take up to 6 weeks for the nerves to fully die after ablation. It did take weeks for my husband to get relief but his lumbar area is pain free now and it was very bad. The nerves grow back in a year to 18 months.. my hubby is very thankful for this pain relief. He cannot have surgery on the sacroiliac due to liver disease. He is 71. He is not afraid because God has always taken care of he and I.
He has a lift chair recliner, Golden brand, which helps when the pain is especially bad. Any lifting at all gets the sacroiliac inflamed and more painful. I just had shoulder replacement surgery a week ago and after spending 8 hours at the hospital on surgery day he was unable to return the next day to see me. It broke his heart. He was able to come bring me home, a one hour drive, the next day by taking oxycodone.he uses a walker at times but it is heavy to lift into our van. We had a Jeep Grand Cherokee also one of our most comfy cars. Now a Chrysler Pacifica fills our needs. Step up, slide out. I had a challenge getting in after my hip replacement last year but finally mastered it. At times he uses two canes to try to prevent falling. He gets terrible back spasms when he has done or lifted too much. Pills help but make him really crabby, he can even tell that he is.
Getting in and out of bed is hard for him but when he lays flat in bed he is pain free to sleep.
In spite of all his pain he is a wonderful caregiver to me while my arm is in a sling for at least 6 weeks. I do what I can and we help each other.
We bought a good TENS unit on pain docs suggestion saying it might help. My husband is scared to use it saying it could make things worse. Is that possible in your experience?
Best wishes for better days ahead.
Queenie

It absolutely will not make anything worse! Put it on and slowly raise the levels. If you go to fast, you do feel like you are being electrocuted - but nothing bad happens.

Riding in car, DG driving in pouring down rain. More later. I just wanted to let you know he’s good to use it starting now!
Karen