Hardware failure from fusions

Sorry to hear what you are going through. This is my story I had a cervical spine op fusion and discectomy with instrumentation that had to be removed but broke while being removed I couldn't talk for 3months as my vocal chord was paralysed plus I still have a deficit a screw was left behind which I can constantly feel - I also have to be careful not to choke as there is now a narrowing. My discs on either side of the fusions c7-8 and c3-4 have crumbled and fused. They will not touch me now as there is too much scar tissue and they could damage the Vagus Nerve. I also had a Lower spine operation in 2011 which went wrong , ALIF and PLIF L3-4-4-5-5-S1 with instrumentation 4 0ps in total. The first op was the Anterior entry, 7 Days later Posterior entry.
It was found that the cage which was put in was too small, so a larger one was put in 14 days after the second op. After about 3 weeks while moving in my hospital room I got a thunderclap headache and had to lie down. We found out that I had a dural tear which had happened during the 3rd surgery they had tried to fix this with a blood blister but it failed. As days went on I suffered from intense pain, and sickness drifting in and out of consciousness - it turned out I had bacterial meningitis, a subarachnoid bleed, a dural tear and brain droop, I was told I died 3 times. I was in intensive care for 3 weeks in the hospital for a total of 3 months. In the last month of my stay, I had my 4th operation to repair the tear my consultant surgeon had an eminent brain surgeon to help with the repair. It was a success, I had to learn to walk again. I was in the hospital from the beginning of September to December 100 days. I now have residual pain from my instrumentation I cannot touch the area (across the sacrum) and after walking I feel a lot of pain also. I have had injections including nerve blocks, and nothing has helped but I am grateful I am alive.
8weeks ago I was also diagnosed with a Blood Cancer chronic myeloproliferative disease - between Essential Thrombocythaemia ET and prefibrotic myelofibrosis with Jak 2, but as my dear father also said when he was alive " Keep smiling my Darling"

@eddiestella1 You're welcome. Your surgeon is making recommendations with the best information they have available at the time and considering your health conditions, and often there are no perfect solutions. They can't promise to return your body to a younger state before damage or wear and tear happened or that nothing else will happen. Everything is a compromise of sorts, and as patients, we sign documents that we accept the risks based on a doctor's recommendations. When you think of yourself as "less than perfect" it's a loss and is hard to accept, but in reality that is normal as we go through life and age. Most of us develop some ailment that follows us for life. Not being "perfect" is really just being normal.

In my case prior to my spine surgery, the blood test said no allergies to titanium or other metals. After I fractured my ankle, it took 6 months before anything changed and that is when the hives started. I had pain, but there is lots of pain after a broken ankle during healing. My ankle isn't as good as before I damaged it, but this is the best it can be for now, and I'm doing what I can to avoid having a joint replacement in my future. Medicine is like that. It can do wonders for us that didn't exist years ago, but nothing is perfect. We are still learning new things and new ways to deal with disease and injuries. Doctors need multiple levels of proof and evidence before something is accepted as fact, and my surgeon was not willing to say that I reacted to the titanium or that the hives were related. He knows some patients have pain, about 20% he said, and that is enough to warrant hardware removal, but it was really my choice.

The issues with payment comes down to the insurance companies wanting to stay profitable and refuse payment if they can get away with it. Doctors have no control over that. Surgeons are under the control of insurance companies who can decide at the last minute not to cover a surgery, and the doctor has to cancel a scheduled procedure. It's not good, but that is what happens sometimes.

Oh my gosh. You have been through sooo much. I am sorry. Can I ask you to explain the difference between hardware pain that you felt and residual pain? I have two different doctors telling me different things. I have one saying I have residual pain from all the surgeries and I have another telling me the pain k have is hardware over my SI joint. The pain I feel is in the SI area and bone. It feels like a sharp dull pain as if there is a knife sticking out of my bones.
Again I’m so sorry you have been through so much. Im praying that things will get better for you. It’s amazing you have such a positive attitude with everything you have been through and are currently going through. Hugs to you.

Oh I’m aware of all the games insurance companies play. And you are right. Doctors are under control of doctors. It’s so messed up. At this point I just need my pain gone. I can’t live like this. Nothing works to relieve my pain. So I’m praying it’s the hardware over my assignment bone that’s causing havoc. It’s a sharp knife pain non stop. There is never any relief from the pain. I’m not here to point blame I just want to be fixed. I know doctors try their best to fix people. Insurance companies are my worst enemies. I e had many arguments with them over versions denials and jumping of hoops they make people go through as a stall tatic.

@jola13 I really like your positive attitude. It takes courage to share a story like yours, and I'm glad you are here. My gosh, you have been through so much, and I was going to suggest you connect with our mentor Lori in the Blood Cancer group, but I see you've already found her. I am sorry all this happened to you. Did your vocal cord reactivate on it's own, or was that another surgery to treat that? Was learning to walk again a recent recovery?

You must be immersed in a lot of treatment right now for your blood cancer. I hope that by sharing your story, you fund a purpose for all of this. I am sure that you have a difficult road ahead.

Bless you,
Jennifer

eddiestella, MELISA is a serum test for metal allergy.
Jennifer's skin pigmentation and hives are presentation of allergic reaction.
I think you will be getting a numbing agent to determine if the positioning of the screw is causing the pain.
I'm curious about your SI fusions. And would be interested in your surgeries, types of appliance and the positive and negative effects. What instigated the need? How will they fix the loose screws.
I'm not sure if I should be wanting anyone in pain to sit and type.
Hope you'll keep us posted.
Terry

Thanks Jennifer with my vocal cord I had to go to a speech therapist for months it eventually resolved.
With the walking I had a aqua physio - and a physio in house at the hospital - I continued with both after I left the hospital I continue for a couple of years. I forgot to say I also had two total knee replacements since then last was 5years ago. 🙂

I had L4 & L5 disc fused. I had my right SI fused 6 times. Then last fall it wasn’t a fusion but they removed hardware and added new hardware in my right SI. They also unbeknownst to me added screws at my left SI joint to support the hardware on my right SI. But the screws on the left are now loose and need to be fixed. I now have pain in my left side that I never had before. The pain on my right is debilitating. For the first time after seven surgeries on my right SI, it looks like it should. But that doesn’t explain why I still have debilitating pain. It’s either from residual pain from all the surgeries or it’s from the hardware (screw) sitting on my SI bone.
Yes the injection is to see if I get relief. If I do then they will go in and remove it and fix the loose screws. As far as how they are going to do that I’m not sure yet. They always used the Ifuse. What caused them to fuse me in the first place is from having kids. My pelvis never closed. So I had gaps on each side. But I’m in worse pain now then when I first walked into the doctors office. He made me worse. All 6 SI fusions have been the open approach. So I was non weight bearing for 3-4 mo for each fusion, pool and PT therapy. It was a long painful recovery. After one of the fusions where he cut in my back and across my stomach, 1.5 years later which was last December I had to have an incisional hernia surgery. It was a side affect to one of the fusions. Knowing what I know now, I never would have had it fused in the first place. sI fusions for the most part don’t work. That’s why insurance companies stopped paying for them. If you need an SI fusion be ready to appeal your denial from the insurance company. Best of luck to you and hope you get relief with the pains you have.

So pain I have are like electric shocks and a dull deep ache. If I lean against anything with my lower back it feels like the area is raw as if a knife is going into my back I scream if I accidentally brush against anything. As my nervous system was compromised my nerve endings are hyper sensitive and this is with my taking pregabalin and other strong painkillers.

Do the pain meds help you? I take 9 pills of Gabapentin per day for the neuropathy in both feet also take 6 mg of hydromorphone which I’ve come immune to. So I don’t get any pain relief. Maybe the deep dull pain is from the hardware then.
Thank you for getting back to me. And I wish you luck with everything. Sending prayers your way.