My son in law is having his sixth hip surgery in four years today (add to that he had gall bladder surgery in there too and the boy has had an awful lot of surgery). He has a congenital defect that causes excess bone to grow in his hip socket causing much pain, and he has some hyperactive nerve disorder which just magnifies his pain. The docs keep going in and cutting away the excess bone, but it just regenerates so he has to go through it over and over. I don't understand why the docs don't just give the boy new hips. They keep saying it is because he is too young (mid thirties now), but that really doesn't make sense. Are they saying he must spend his young healthy years in constant pain and unable to work, then they'll give him new hips when he is older, not as strong, and has had many years unemployed so that no one wants to hire him because he didn't work for so long? Erggg.
At least they can now do the surgery arthroscopically. The first four of these surgeries they laid him open from hip to knee, unattached the ligaments and such, pulled the bone out of the socket to cut away the bone, then put it all back together. Recovery was terrible. Recovery is much quicker and easier now, but still no piece of cake.
Anyway, hoping for the best - again. The kids really need him to be able to work, but I don't know that it will ever happen.
Update : Surgery is over. They took pictures this time, daughter says they look like something taken by the Hubble unless you know what you are looking at, I just say ewww. I asked her again why they will not do a hip replacement. She said she just asked the surgeon that same question. Doc says "wouldn't be ethical", still want to know how it is ethical to keep a young person in pain and incapacitated and just wait until they are older to fix the root of the problem. Whatever. The kids have been told that he should avoid sitting. Period. Seems the excess bone in front pushes the leg bone out of the socket in back and sitting just exacerbates that problem. So now the simple act of sitting is out. Good grief.
At least they can now do the surgery arthroscopically. The first four of these surgeries they laid him open from hip to knee, unattached the ligaments and such, pulled the bone out of the socket to cut away the bone, then put it all back together. Recovery was terrible. Recovery is much quicker and easier now, but still no piece of cake.
Anyway, hoping for the best - again. The kids really need him to be able to work, but I don't know that it will ever happen.
Update : Surgery is over. They took pictures this time, daughter says they look like something taken by the Hubble unless you know what you are looking at, I just say ewww. I asked her again why they will not do a hip replacement. She said she just asked the surgeon that same question. Doc says "wouldn't be ethical", still want to know how it is ethical to keep a young person in pain and incapacitated and just wait until they are older to fix the root of the problem. Whatever. The kids have been told that he should avoid sitting. Period. Seems the excess bone in front pushes the leg bone out of the socket in back and sitting just exacerbates that problem. So now the simple act of sitting is out. Good grief.
|
"I pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation under God, indivisible, with liberty and justice for all."
Oh, my gosh. That's horrible! Prayers for him, your family and the doctors going out. Hope his recovery is pain free and *fast*!
Thanks Pam, he has been "hooked" on nasty pain meds, in withdrawal from nasty pain meds, or suffering due to lack of nasty pain meds for a very very long time. I will say, however, whatever they have had him on the last few months seems to have worked much better without so many of the unwanted side effects of narcotics. Except it really messes with his sleep cycle. Just wish they could get off this roller coaster, it ain't fun.
Wow. You know, when you hear about some of the things other people live with daily it makes the stuff in your own life seem so petty. I hope he's feeling better soon and something can be done to make this all something in the past for him.
thanks laura
Prayers going out for him...and you're right. It doesn't make sens.
I'm saying a prayer for your son-in-law.
Might I also suggest he start interviewing new doctors. There is someone out there who will help him.
Joanie he has seen more doctors than Carter has little liver pills, as my mother would say. His disorder is very rare and the treatment protocol is ever changing, even in the short time (relatively speaking) that he has been dealing with all this. He has seen Drs at both Duke and UNC, he has seen the Dr that is supposed to be the most experienced. Doesn't seem to make much difference. Frustrating.
But thanks for the thoughts and prayers. Some coming right back your way.
Thanks, Patti.
The thing is, even going to see docs at those places...there has to be someone else who will give him another option. Duke and UNC are likely teaching hospitals. That can actually work against him just as easily as it can work in his favor.
I'd be researching the heck out of his condition and looking for someone not connected with either institution just to see if there's an alternative to what he's enduring now. (I'm sure he's done this, but it never hurts to keep searching for answers.)
Part of the problem is fake hips are only good 10-15 years, so what they're seeing is a man in his 30s that could very well have to have 8 hip replacement surgeries before he dies. (Four for each hip...) That's where they are coming from. HOWEVER, that should be HIS choice.
(Having problems with Blogger... this is Bou.)
Hi Bou! Yes, we know they don't last - but at the rate of 6 surgeries per 4 years I think we'd all be very happy to slow the rate down a bit.
And yup, we really feel he should be allowed to make an informed choice himself. Before all this started he was a quality control manager for the sterilization of - are you ready for this? surgical implants.
As Bou says it's a real dilemma for doctors. But she's missing a few points.
People know these replacements are available and that they would take care of the pain "right now". Unfortunately they can only be done a limited number of times (2 possibly 3 times if you're very very lucky in a lifetime) before the foundation bones (in this case the femur and hip socket) are destroyed.
This means if they start doing replacements for him right now, there is a good - even excellent chance he'll be completely bedridden with no recourse by the time he's in his mid 60's. He may not even be able to sit in a wheelchair. That's what they are trying to avoid.
Of course, if you're in pain, you will say... do it anyway, I don't care about later. Until later comes... then it's a problem.
The other problem may be - the disease he is fighting won't be stopped by a hip replacement. In other words, they may still have to go in and cut out bone growth that impedes the implanted socket. This would make the life of the replaced joint even shorter. Thus making his projected life of the joint less than even 10 years.
Why in the world it's so difficult for doctors to give people information like this is beyond me. The doctors do have ethical considerations in cases like this as they must look at the overall picture and the chances of a successful outcome. Should the ultimate decision be left to the patient? I think so.
Then again - I see a complete disconnect between doctors and patients so often, as in this case. Where the communications process has so broken down, the patient doesn't even know the basic reasons behind their own treatments. I mean, what I'm seeing here is the belief that the doctors are being stubborn for no really good reason. When the real goal here is to keep him mobile for as long as possible in his entire lifetime, not just a short few years.
I know a young woman about this age dealing with the same types of issues except it's her knee.
Everyone expects "replacements" to be the answer, unfortunately medical science isn't quite there yet. It may be in about 25-50 years, it's MUCH MUCH better than it was even 30 years ago. But it's not yet the best thing to do in all cases. Especially when the age of the person is under 40.
*sigh*