ok here I am, roughly 6 mos later.......
realizing that - the orthotics helped, but not enough
I now have pretty significant arthritis in my ankles
I can't walk for more than 20 mins with out so much pain in my feet and ankles and in that one big toe, GRRR (that, I was finally able to confirm- is indeed from the spinal stenosis at L4 and L5) Now I have to figure out what exactly brings it on, because it's not just walking- I am guessing it may have to do with something I do at my garden- probably bending at the waist, since I am unable to bend my right knee enough to do a squat and getting down on my knees is impossible without something sturdy to help me get down and back up again...
anyway, I know it sounds incredible but my knees still do not hurt! Oh on rare occasions, if I've been sitting too long, I'll have a wee bit of a burning pain in the left knee in one tiny spot, I notice it but it doesn't slow me down at all
so my knees don't hurt- but my feet and my ankles do
and there is no denying that it's the body mechanics- the fact that my right leg turns in at the hip, and out at the knee, and that that Rt leg is longer in spite of it being bent at a significant angle inward (valgus)
none of this makes any sense to me, but there it is.
the left leg is still shorter, that hasn't changed, but the sensation of the right leg being even longer (not sure it actually IS, it just feels that way) has gotten stronger and most of the pressure and my wt feels like it is all concentrated on several odd places on my right foot primarily
It's hard to explain, but I can' not walk normally. My body is so twisted out of shape.
I am now having issues with my C spine stenosis, horrible nerve pain in my shoulders and neck
They want to give me injections at the C spine (NO! hell NO- my old spine dr had the same issues and he said HE would not get an injection in his cervical spine, far too risky. When a surgeon tells you that something is too risky for him to do it, it makes a big impression.
a few years after him mentioning this, a friend's father got a C spine injection and died from complications less than 24 hrs later. This may be rare, I don't know. But it's too scary for me.
anyway, I still have sHPT and need for that to resolve before I make any definite plans... the high PTH is still pulling calcium out of my bones, I have widespread bone pain.
I had a NM whole body bone scan that showed "hot spots" on the top of my head, "avid uptake" lol in my knees esp the right one
and also in my shoulders, c spine lumbar spine, ankles and and er somewhere else, I forget now
these are all the places I have OA and/or other degenerative changes except for the top of my head- that hasn't been explained yet (I don't see the endo til next month)
She ordered the scan to rule out Pagets disease - it's not officially ruled out but it seems unlikely (could be very early Pagets with the hot skull) The hot spots are diffuse where in Pagets they are spotty focused areas, in my understanding at least
So I need to get my bones back in shape, which apparently can take a few years, assuming I've had issues with the PTH for as long as 10 yrs or more (had the high ALP back in 2010!)
Endo tried to tell me that it's got to be my liver and not my bones because I never tested as deficient in vit D or calcium, just "insufficient" but she's forgetting that I've only had my vit D tested the past 2 1/2 yrs,
Drs didn't bother to test prior to this (they SHOULD have, as it turns out) and it was 2012 when I changed my diet and was no longer consuming an adequate amnt of calcium.
(potential vegans- you need to track your calcium intake! esp if you are like me and go "whole foods plant based" and don't avoid the plant milks that are fortified. and the junk cereals and other processed foods that are also fortified with vit D and calcium. I don't consume dairy, I eat extremely little meat. I thought I was doing ok because I love broccoli and spinach and kale but calcium in spinach is not well absorbed; I am also on a low fat diet for cardiac health and vit D at least needs to be taken with fat or it's not well absorbed- so anyway, taking B12 as a vegan or vegetarian is critical but you may need to keep an eye on your calcium intake. Younger ppl may not need to worry as much as you're likely more active and consuming more calories so it's a bit easier to get enough calcium from food BUT at my age - almost 70 and with my current activity level, I would have to massively overeat to get enough calcium in food - OR eat foods I don't wish to eat - processed foods or plant milks that also contain things I don't want to eat like emulsifiers and carageenan sp? etc) I will get some fortified orange juice from time to time though)
sorry for going a bit off track there but any time I learn something I think might be useful to someone else I want to share it
could have saved me a lot if, when I was vegan (for about 2 yrs or so) I hadn't been swayed by the die hard vegans that said not to worry, the only thing you'll need to supplement is B12
that's not quite accurate. PLUS everyone is different!! regardless of what foods you choose to eat, you should from time to time, check and see if you are getting all the nutrients you need and not just assume that you are.. At least, I think that's a good thing to do. or maybe take a low dose of a multi vitamin in case but even then it's best to have a ballpark idea of what you are consuming because there can be issues with too much of certain things Like zinc is important but the amnt you need is very small and too much can be as problematic if not more so than too little!
yeh I am much more comfortable talking about food than bones LOL
that is one reason I worry so much about this surgery. I am VERY very particular about what I put in my body. It is important to me. the way that I eat is so different from what most others eat and few ppl seem to respect my right to consume only what I feel is in my best interest, so I worry about getting support for meeting my nutritional needs esp after surgery when I may not be able to cook or shop
oh, you hear me talking about surgery........
um yeh
It seems likely I will need to have my right knee done if I want to be able to walk without pain in my FEET and ANKLES
still disturbs me that I need to have a knee that is NOT at all painful removed to do this
still makes me nervous because valgus knee replacements are the most likely to fail or have issues afterwards
AND I am still unable to get ANY answers as to why my body is twisted in the particular way that is is NOW
so if they can't tell me how I got to this place-
how can they know or assume that they can fix this?
I am still afraid I will be trading one pain for another or setting off a series of events that will lead to more and more surgeries (with all the risks that come with that)
funny, if i was younger, I would not worry so much about risks but as my time on earth grows shorter it is a HUGE concern for me
I have NOT had a "good long life"- I have had mostly a horrible life and only recently have been able to enjoy life
and I don't want to risk it ending before it normally would
so any way that is where I am now
I know drs will say it doesnt matter if you have SPTH or other conditions, they can still do surgery
yeh sure they CAN (and will, they make a lot of $$ on these) but that does not mean they should
so I feel I have no reliable source of information on how long I need to wait or how to tell if my bones have re mineralized well enough to go ahead with surgery
I am having a dexa scan soon, that might help. My first Dexa scan over 10 yrs ago showed no problems
second one a few years ago showed a little bit of ostoeopenia
most recent one shows a bit of osteoporosis but it was mild
I expect this next one may not be as good., I am also having the non dominant forearm done to find out if my HTP is progressing to primary vs secondary- which is possible
I'm considering getting an exercise bike- just not sure where I'd put it LOL my place is small now
but I know it will help me esp in the winter when I can't get out
hope everyone is doing well
I am trying to figure out how to approach the surgeon that I dislike greatly - his personality totally grates on my nerves BUT I don't have the option of seeing a different one in that practice and the practice I was going to go with is not reliable. Surgeons may be good, IDK but you can't reach them, you can't get refills or meds as needed and if you have a problem after hours you have to go the ER and yeh, that's just not acceptable.
The guy knows I don't like him, and I doubt he likes me either (he LOVES the pts who ask no questions and act like he's Gods gift to the world and that is so not me LOL Don't get me wrong I respect drs and the work they do, but *shudder* Have a very hard time with arrogant pushy obnoxious men - and women too, for that matter.
I'll have to find a way to handle that
or maybe there is another practice with good orthos, I will ask my primary doc when I meet her
right now I have no PCP lol
ok I guess I had a lot on my mind
gnite all
United States
It's a testament to your strength, meecies!
