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severe intense pain 4 weeks after titanium rod put in full length of my femur

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Posted 6/25/2015 10:06 PM (GMT 0)
I have a rare bone disease, called Polyostotic Fibrous Dysplasia. I have spent most of my life dealing with this disease. There currently is no cure available, and the only reason any doctors have been able to give as to why anyone has this disease is a mutation in our genes. I recently had a very major surgery (my 4th surgery by the way) on my femur and hip to first, remove a small titanium rod and pin from my femur and hip, and replace with a full femur length rod and hip pin. I am in majorly severe intense pain. I've spoken to my orthopedic surgeon about why my pain is still so severe, because now they want to take me off my pain medication, which makes absolutely no sense to me. The surgeon told me he has done this surgery on other patients and their pain is usually called by mow. When I asked him if those patients had the same bone disease, he said no I am his first. I begged them to keep me on my pain medication at least for a short time longer. I just feel like they have not taken my concerns seriously. Does anyone have any ideas or suggestions for what I can do? Please help. My pain is so severe right now. I feel like I'm losing an important battle with my health
. TITANIUM DUDE
Posted 6/26/2015 3:59 AM (GMT 0)
Hello & welcome to the forum. Sorry to read what you are dealing with & hopefully soon you can get this all resolved.

Surgeons are usually the very worst when it comes to rxing pain meds after surgery. Usually a patient get 10-14 days worth of pain meds & thats it. How long ago was your surgery? Your primary care is probably not going to be of much help either. With all of the hype & hoopla over the drs being monitored for prescribing that unless you are seeing a pain mgt specialist help will be short & limited. Pain mgt dr handles long term patients as a rule. Other than letting your primary care know what is going on perhaps he/she will help you a little longer.

Take care.
Posted 6/26/2015 5:05 AM (GMT 0)
Hello Titanium,

I am so sorry that you are having to deal with this. I honestly had to look up what you have because I have never heard of it. I am blown away by the severity of this type of disorder. (hugs)

I think that Susie gave you the best advice and has more knowledge than I do regarding dealing with chronic pain than I do. I am learning from her and others here myself. I hope that you will be able to receive the relief you need and rest that you deserve.

Blessings
Posted 6/26/2015 10:53 AM (GMT 0)
Welcome Titanium to the CP forum and I think at this stage of the game getting one of the Dr's to make a pain management referral is the way I would go. The surgeons like Susie said do not want to write pain meds long term and expect healing post op to follow the medical book guidelines but in your case you have a rare and genetic bone disease that is even going to decrease your chance of healing normally after procedures and that's a fact the surgeon isn't taking into account. Pain management is a speciality that deals directly with the many facets of pain and managing it to ensure the best quality of life obtainable for individual situations.

Glad you found us and the folks here have decades combined of dealing with and living with chronic pain conditions.
Posted 6/26/2015 3:29 PM (GMT 0)
Welcome to HW. You've landed in a place where people give their best to help others who are getting to live with chronic pain.

Yeah for titanium! LOL. I have a lovely chunk of it running almost the length of my femur. Broke the darn thing for the second time in the same darn place. (What are the odds of that!?!) We failed at getting it to heal so I ended up with ORIF surgery...and chronic pain. Although the femur did heal! (Thank G-d!) I've been dealing with chronic nerve pain since the surgery. The orthopedic surgeon was brilliant and hates that I'm now dealing with this. He made the referral to the pain management clinic and the did the testing to validate I do, indeed, have whacked out nerves. I guess when you cut that much, there's bound to be trauma to the nerves, huh?!

I agree with the gals who pointed you in the direction of a pain management physician. The ortho surgeon I had was specialized in his field and was able to say he needed help fixing the pain issue which wasn't in the field of his expertise. Might be you'll need to help yours say the same thing, especially given you have this rare bone disease going on at the same time. It would be hard to determine which was creating the pain issue--and if your surgeon is anything like mine he didn't WANT to be the cause of the pain.

Ask for help from him, see if he can't refer you on so you can get some help with the pain you are experiencing.
I found when I simply asked him to help me--and told him it wasn't about 'who to blame' and it was about getting help with the pain I was having he took really good care of me by getting me help.

Good luck. And welcome!
Posted 6/29/2015 1:02 AM (GMT 0)
It's hard having surgery due to a disease, and extra hard when it's not a common type of surgery, or if you are not the "normal" type of patient.

I had both sides of my TMJs replaced(titanium) due to the bones fusing together-kinda like a zipper. These joints are not replaced often, and usually it's due to cancer or trauma.

Luckily, my surgeon realized this and included advice from my pain management dr(who I've had as a Dr for years prior to the surgery). I healed much differently from his other patients, and had many many complications. Years out, and I still wind up with issues and have had multiple surgeries. Other jaw replacements are eating steak and chewing gum-I'm no where near there :(

Like the others have said-a pain management Dr is probably your best bet. Is there one that is within the same hospital network as your surgeon?

I'm assuming you receive treatment at a large research hospital due to your condition. If not-they are the best way to go when most of the hoofbeats a Dr hears are horses, and you are a zebra. My Drs call me an alpaca.

I'm sorry you are in such pain. I hope you are able to find someone to help you. Your primary care Dr could possibly refer you, or if you have specialists who treat your condition-they could be helpful as well.

Just because we are oddballs, doesn't mean we deserve to be in pain.
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