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Removing hardware from bone & nerve deadening

by moonscape on Sun May 21, 2017 7:55 am

In November 2015 I had two plates with bolts attached to my tibia to stabilize my leg when a plasmacytoma broke out from within. Then I had induction therapy and have been on Velcade maintenance.

I saw my orthopedic oncology surgeon last week for a final visit, mostly to wrap up, discuss a knee injury from falling, and let him know if I wanted to have permanent nerve deadening. I've nerve damage that runs down the front of my leg and can be really annoying. Because I didn't want another procedure, and am not ready for a new event, I opted out.

He said the bone has grown at the plate, showed me on x-ray, and mentioned he could take out the hardware if I wanted. It would not change the nerve damage obviously. Was so surprised that I just said no without further inquiry. Now I'm wondering what the upside of doing that would be.

As it is now, the hardware gets in the way of images. Is there any other advantage? Is the procedure difficult? What in general are the upsides and downsides of having the hardware removed?

Finally, what thoughts do people here have on permanently deadening nerves? Not feeling my leg all the time, pain when it's more than lightly touched, would be nice, but ... I'm wary. Without feeling, I' concerned that I wouldn't know if my leg was on fire! My surgeon said ya, I'd smell it :)

Thanks!

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015

Re: Removing hardware from bone & nerve deadening

by David Langston on Sun May 21, 2017 3:55 pm

I would be concerned about potential weakness of your tibia without the hardware. Can your orthopedic surgeon guarantee that the bone regrowth is strong enough to fully support that tibia without fracturing?

I suppose your Zometa treatments may have helped harden the regrowth. After a bone plasma­cytoma-caused break in my femur was reassembled with an internal Ti rod and top stabilizing bolts, my orthopedic surgeon told me he didn't think it would ever fully heal (harden). This was a year after the surgery. Now I can't have bisphosphonate treatments due to failed kidneys, so that may be a difference between our conditions.

Also at the time, I was on Kyprolis treatments, which may have caused my PTH and AlkP values to escalate more than normal bone healing / bone turnover would require. Subsequent to the cessation of Kyprolis, AlkP dropped quite a bit, but PTH didn't, which may have retarded healing. I've had lingering pain from the bolts that brace the rod over the past several years, and I've assumed that this pain was due to incomplete healing around the bolts.

Are you certain that your nerve pain isn't from the hardware pressing on the bone, or is there any chance it may be due / related to Velcade-induced neuropathy?

David Langston
Name: David Langston
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2010 & diagnosis from 2000 SPEP
Age at diagnosis: 59

Re: Removing hardware from bone & nerve deadening

by moonscape on Mon May 22, 2017 4:34 am

Good question as to the origin of the pain. The surgeon commented that removing the hard­ware would not solve the nerve pain issue, but I have a number of tender spots separate from the over­all nerve damage which perhaps could be related to the hardware. Maybe that's why he made the removal comment.

My thinking / assumption was so much in line with yours concerning bone healing with myeloma, which is why I was so taken aback by the suggestion. Needing to get to my next medical appoint­ment and reflexively dismissing another procedure meant that I didn't explore it. But you're right, I would need to know a lot more about the strength of my leg, and the holes left by the removed bolts. I don't have a rod, though the plates and all the bolts look impressive on the x-ray!

I chose not to have the more typical monthly Zometa and have had just 2 infusions.

The pain is definitely not neuropathy, though I have some of that as well. It's only on the front of my leg, starting right below the knee and ending just above my ankle.

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015

Re: Removing hardware from bone & nerve deadening

by GaryH on Mon May 22, 2017 11:33 am

Years ago, in a past life, I had developed Perthes disease. This left me with a faulty hip due to avascular necrosis. The head of my femur was flat, instead of rounded. In my teens, my hip started to pop out of joint, and it got more frequent (very painful!). When I was 26, i had to have my hip fused, due to my age and the fact that hip replacements were not as successful the second and subsequent times.

Fast forward to 20 years ago, and I was getting prepped to have this fusion reversed by getting a hip replacement. Then I was diagnosed with having multiple myeloma. The surgeon told me I would have to wait until after my stem cell transplant to do anything with it. Well, 3 years after my stem cell transplant, I got my hip replaced! They used a lot of hardware in it, and I was constantly in (minor) pain from it. The next year, they went in again and removed 80% of the hardware, which relieved the pain. There was no 'weakening' of my femur, although it has had a lot of hardware thrown at it and removed. The bone has grown back and covers the holes left behind. It is fine.

Hope this addresses your concern,
Gary

GaryH
Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

Re: Removing hardware from bone & nerve deadening

by moonscape on Mon May 29, 2017 1:42 pm

Interesting. Thanks so much for recounting your experience Gary. Perhaps hardware removal would help with some of the intermittent pain that is distinct from the nerve damage.

You've inspired me to explore further. Thanks.

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015


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