So my knee MRI was negative for new injury. Cartilage loss at patellofemoral facet. Okay. So I can push through that pain...for the most part.

Then I get a call from the ortho office. Blood work was "not horrible" but Vitamin D level was extremely low...13. Wants me on Vit D (50,00 iu twice/week) and referral to endocrinologist. Okay. I can do the Vit D but why the endocrine referral???

I asked about the Dexa scan. She had to pull it up. Severe osteoporosis with an extremely high risk of fracture. Wow. So basically, I'm 48 with the bones of a 90 year old. Awesome.

A search through my medical books, some enlisted help from an RN friend and we came up with hyperparathyroidism as the most likely culprit of all my ailments...well except the RSD...no studies linking that yet that we could find. If that is confirmed, essentially my timeline would look like this:
Hyperparathyroid --> decreased Vit. D/increased release of calcium --> osteoporosis --> patella fracture --> peroneal nerve injury --> RSD

So the osteoporosis can be reversed (albeit, slowly) with a parathyroidectomy. Surgery. On my neck. With a documented (decent) risk of unilateral laryngeal nerve damage, causing voice disturbances and difficulty swallowing. There's also a risk (on the lower side) of bilateral laryngeal nerve damage, causing breathing problems sometimes requiring tracheotomy. (Okay, not going to freak out on that one)

My big concern (freak out) revolves around 'surgery' itself and the potential for spread. Then I add in the location of the surgery and major freak out ensues. Since I am just learning that my life has pretty much been falling apart for 5-10 years (incidentally, there are NO studies of anyone with hyperparathyroidism for 25 years or more because the effects of hyperparathyroidism contribute to ~20 year survival) and everything I have learned about RSD so far does not bode well for surgeries. Anyone have any experience/links/advice to prepare? I know I will not be doing anything surgically until after my daughters wedding next month, so I have a little time to prepare, and I know it's not a confirmed yet...but, after my son's major medical issues, I need to prepare for the worst while hoping for the best. Thank you in advance!!

Are you sure of that timeline RSD is known to cause osteoporosis it also effects the immune system making you much more susceptible to other diseases conditions.

Pretty sure. Obviously without the "official" hyperparathyroid diagnosis, it could be off a bit. I suppose it's possible my RSD started in my face (10/2007) and has gone un-diagnosed until arriving in a major weight bearing extremity. Thinking about that as I type this response, I am now becoming a bit more scared...

A timeline around that scenario:
complex zygomatic fracture --> RSD L-cheek/maxilla --> hyperparathyroid (unofficial) --> decreased Vit. D/increased release of calcium --> osteoporosis --> patella fracture --> peroneal nerve injury --> RSD spread to LLE

Looks like either way, I'm in for a long road...just hoping it's not bumpy because them bumps = flares...

Hi AB,

Don't get ahead of yourself on the panic. You don't yet know what you're dealing with and you can drive yourself mad with the "when,why,how timeline". I made myself crazy trying to figure out how this happened to me, micro analyzing everything, as if identifying an exact mechanism would negate the fact that I have to deal with the outcome.

Try to deal with not knowing and not with a diagnosis you don't have yet. Is your blood calcium elevated? That might provide a further clue on hypercalcemia from leaching. The low D is no surprise, it is quite common. Yes yours is very low but that's not unheard of. Mine was low on a multivitamin AND living in Texas. Hard not to get enough sun here and I do spend time outside regularly! Your levels should come up in a few weeks. Low D impacts chronic pain and nerve health so I actually see some hope in here. And on the osteo, it sounds like you are now a candidate for biphosphinate. If you can't get any infusions covered you could look at alendronate (fosamax). It has shown good results in CRPS bone pain and is oral and available generic from Canada if too expensive here. You might get rid of some your ache treating the bone issues.

IF you do have something needing a procedure, the parathyroid surgery is not super long so that's a good thing. Neurontin 900mg pre-op is good for heading off chronic pain and minocycline is the best post-op antibiotic, it attenuates glia activity. My plastics nerve guy basically gives it to all his patients no matter type of procedure he is doing whether it is nerve repair or DIEP breast reconstruction.
Don't give up girlfriend! You may get something outta this. Like I said there is some weird kind of hope in here, at least some things that are treatable and may improve your overall situation.

Sending today's Healing Love,
Littlepaw

Not sure I'm in full panic, just making sure bases are covered. It's been a bad (or good, depending) habit since my son's 1st heart surgery...kind of a protective mechanism

Not sure about Ca level, as she didn't state. She said doc wanted to start me on 50,000iu Vit D twice/week and refer to endocrinology. That referral is what prompted the intense research into the endocrine/vit D deficiency scenarios. Unfortunately, the *possible* hyperthyroidism in & of itself is not responsive to biphosphinate/alendronate. The offending parathyroid gland(s) need to be removed. Thereupon, the cure, as bone density returns (slowly), vit D levels rise and ... ta da!

I certainly appreciate the connection to my pain levels (see? I'm talkative but not crazy gone!). I think my daughter's BF appreciates the connection as well. Since he lead on my RSD was "self-diagnosed" (to which I responded with "Actually, medically diagnosed & documented in my chart, tyvm." After reading my patient summary and learning of the results of everything else, he has gone into "nursing mode" and become quite compassionate and helpful. The things black and white can do...

Thank you for this! Now I can make sure this is discussed with my medical team to be ordered and charted!

Indeed! While I was conflicted with the MRI results (sure FEELS like more than what was discovered), knowing I could push my boundaries without causing damage gave me some courage/motivation to rehab! This new biznotch, while has me a bit nervous, explains a little at this point and will explain a lot when the rest of the tests are in & diagnosis is confirmed. Direction = peace!
Thank you LP for your continued support and

I agree about catastrophic planning and arming yourself with knowledge. I do it myself. Seems to be ingrained in healthcare people. I know if you have the parathyroid problem they will have to attend to that. But don't get yourself freaked over the maybes and might happens on a procedure yet, all I'm saying...

I was just thinking if your bones are in danger of fracture right now that bishosphinate might be an option to help the resorption and bring some pain down. You hate to let that go and then take a while rebuilding if there's an option to hasten bone strengthening that might also help pain and CRPS. God knows people get achy even with osteopenia.

Look up minocycline and pain or minocycline and glia, very interesting. Well tolerated unless a history of sensitivity to tetracyclines. Low side effects, made me a bit dizzy and vision slightly blurred but not enough to discontinue for the 10 days I took it.

Take care and keep fightin, you can't give up till I do and vice versa. Good thing we're stubborn....
LP

I've dealt with RSD/CRPS in my upper and lower limbs and in my face, and from my experience as well as others I've talked to, find it improbable that you had it in your face since 2007 without being diagnosed. You can rest a limb without moving and get some relief. With your face it's hard to avoid speaking, eating, and drinking--and gosh even breathing are an issue.

Surgical procedures aren't ideal, but spread can be minimized when precautions are taken. The surgeon should be careful to cause as little trauma as possible to the area--frankly if they were more careful in the first place many of us that develop RSD/CRPS from a surgery could be saved a life of pain. Undergoing a block right before surgery can help, Ketamine can be used as part of the anesthesia, and Lidocaine patches can be used around the surgery site during recovery. (I underwent surgery on the limb that was my original RSD/CRPS site without complications and I'm betting newer surgical protocols are even better now.)

Kinda became a second nature method of self-protection after celebrating my son's heart surgery only to have him go into cardiac arrest a few hours later. Not sure I know any other way at this point. My medical background just makes it easier to jump to conclusions!

Well...my ortho just called (on a Saturday. After the nurse called me yesterday. ). Told me he has my chart in front of him and wanted to make sure & touch base. Went over the Vit D stuff. Then discussed the bone scan. Said "You most definitely have osteoporosis. I want you to walk a little bit everyday - but don't fall, please - just a little bit of walking."

Okay. I would like a purple walker please, sir. We will also discuss treatment options and the endocrine referral on Monday.

AMEN!!! (You DO know I'm a Taurus, right??

That's what I would think as well. I mean, there is most definitely nerve damage in my face from my zygo fracture and some days are worse than others regarding the pain intensity, but no where NEAR what my left leg feels like!! The face thing was the only possible connection to where Kevscar was going.

They have most recently began performing a minimal and focused surgical procedure for hyerparathyroid that is definitely more appealing. Not sure how well a lido patch on my neck/throat is going to feel...But hey, whatever ends up working. I;m a work in progress, you know!

They work better than you'd think. You can always use straight lidocaine cream if you prefer. You just need to get through a week or so post op.

I had my first bad reaction to a stellate ganglion block last week. Lidocaine patches to my throat an well as Epsom salt cream did the trick after a few days to reduce my pain and swelling that had been escalating to a scary degree.