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Carol56
02-05-2017, 08:01 AM
Has anyone had issues with fusion failure. My story is long...........but in the end, I fear my fusions are bad. During my revision surgery that I had one year ago, (due to being allergic to the metal rods that were used) my doctor put in new titanium alloy rods. But when he opened me up, he reported that my fusions did not look very 'robust'. When I asked what he meant by that.......he said they didn't look as healthy as he would have thought. He told me it could have been that the allergic reaction to the nickel was hindering the growth of the fusions. Well, it's been almost a year since that revision and I have had nothing but severe pain. My surgeon and no one else wants to think it's anything but needing more time.........but I tell you........the pain is so bad...........I can't wait to be asleep at night (drugs help me do that).........and when I wake up in the morning.........i start to dread and become very anxious that, another day of pain is here.
I cannot walk more than 100 steps without it hurting so so bad. I cannot do hardly anything without the pain overcoming me.

I could go on and on.........but I just want to know if there is anyone out there who has ever had issues with fusions not healing and/or needing to have them replaced/repaired?

Thank you for listening
Carol

titaniumed
02-05-2017, 10:48 AM
Carol Yes. Non-union or pseudarthrosis is one of our main worries.....along with infection. When this happens, a revision can be considered, but you have had this done.

One of the posters here many years ago had problems with her fusions and she was around 25 years old. Sometimes, they just donít know why our fusion integrity is compromised, itís a biochemical puzzle.

She went into a 3rd revision at Twin Cities and they used BMP on her and I believe it was from the front inserted in a cage.(ALIF) Same procedure I had.

Have you been down to Hospital for Special Surgery? If not, I would talk with them....

I am sorry this has happened...

Ed

rjmacready
02-05-2017, 06:01 PM
Carol, I am very sorry to hear of your situation. Did you assess your bone mineral density before the surgery? I am facing a major ASD surgery in July, but was fortunate enough to find out I had osteoporosis before the fact. I will have had two years of Forteo injections by the time of the surgery. Its not a dead end, if you are not laying down new bone as you should, it can be treated with Forteo (1st choice) then other biologics. This doesn't explain your allergy, just maybe why the fusions didn't seem "robust".

It doesn't sound as though you can travel very far. I can send you a bio page for a surgeon in NYC who has an excellent track record with difficult cases. Just PM me and I'll send it off.

As for the chronic pain, I empathize completely. I hurt every waking moment as well, and am severly restricted in what I can do and for how long. Sustained release opiates like MS-CONTIN seem to work best. Ibuprofen is also very effective for me. The effective duration of the short acting opiates (MSIR, oxycodone, etc...) lead to many peaks and valleys. My neurologist also allows a dash of diazepam for sleeping and when the spasms are really bad. I also use a portable TENS unit on my problem area, it seems to help attenuate the debilitating pain that always ensues after I have been active. I had been relying on an ice pack, but that became very uncomfortable during the Winter, so in desperation I tried the TENS. I was very skeptical and so far am quite surprised, but it is just another tool in the endless battle against chronic pain. Unless someone has lived with unrelenting pain, they can't know what it is like. Good Luck, Chet

Carol56
02-15-2017, 12:19 AM
Hi Chet, thank you for your reply. I am seeing a new doctor tomorrow. Wish me luck.

I did try the drug Forteo prior to my first surgery (I was diagnosed with osteoporosis in my spine), but it made me so so sick. I was so nauseous that I thought I would need to go to the emergency room. Not fun. I consulted my surgeon and he told me to stop using it.

I will report back here after I meet with the doctor tomorrow.

Thanks
Carol

Carol56
02-15-2017, 12:22 AM
Also, to Ed.......thank you for your comments. I am just frantic that my fusions are bad....but "how do they know this"??? is there a test they can do to see them? I i can't live like this....it's just awful. I will be seeing a new doctor tomorrow.

I live in CT so I'm not sure where else to turn if tomorrow doesn't pan out.

I'll post what I find out tomorrow. I'll also continue here on this site to reach out for help and suggestions.

Thanks so much
Carol

springchicken
02-15-2017, 12:09 PM
Also, to Ed.......thank you for your comments. I am just frantic that my fusions are bad....but "how do they know this"??? is there a test they can do to see them? I i can't live like this....it's just awful. I will be seeing a new doctor tomorrow.

I live in CT so I'm not sure where else to turn if tomorrow doesn't pan out.

I'll post what I find out tomorrow. I'll also continue here on this site to reach out for help and suggestions.

Thanks so much
Carol

Hi Carol

I'm so sorry to hear of your situation and continuing pain. Have you had a CT scan? I'm not positive if it would be definitive, but I think that is a test that would reveal areas of non fusion (pseudo arthrosis).