Reassurance please!

[Cassidy]

Hello @Layla. I sympathise with your Mum, I really do. Most days I can get around okay - you do get used to the discomfort and it sort of fades into the background - but if I try to push myself a bit further, that's when I realise how restricted I've become. I just wish I didn't have the picture of the op in my mind - too much researching been going on, unfortunately! I have three questions for my OS, although I'm not sure I'll see him again before the actual op - 1) which approach, 2) which prosthesis and 3) do you think they'll be advanced enough in stem cell therapy in 5 years or so for me to hang on until then! The one and only time I saw him he sort of patted me on the shoulder and said it was up to me to get healthy for the op, do the exercises post op and leave him to worry about the op itself - I think he saw an "expert" patient (albeit a very nervous one) and decided he'd rather I didn't ask too many questions!

 

[AgilityDog]

Aloha, @Cassidy ! I slept right through your question. I apologise. OS is for Orthopedic Surgeon. DH is for Dear Husband. I wanted to 'chicken out'. My husband has had 2 back surgeries. He says he waited too long for his 1st and he has perminant nerve damage. He didn't want me to wait and possibly end up like him. (I don't know if that was possible, but won't argue with a loving thought.) He has Pain 24/7 . (He has pain in his hips similar to mine & consults with the surgeon next week.) When my THR was done & OS spoke with DH, OS said my femur head basically crumbled when they went to remove it. (Probably not the best description on my part.) I had times when my hip didn't hurt. I felt like a fraud; I didn't really need a new hip. Logically, I knew my insurance company would not approve payment if it had not been proved necessary to them. Then, after surgery, I hear that my timing was practically perfect.

 

[Layla]

Hi Cassidy,
I understand where you're coming from, truly I do. The fear and anxiety I felt pre-op is reflected within this forum through posts I've left here and there. Being post op, I see it all differently now.
Had I known then, what I know now, I could have saved myself months of endless worry.

Please find below an article on the various approaches. I understand this won't answer the question which approach your surgeon will use...but you can better familiarize yourself each one used.
https://bonesmart.org/forum/threads/16-months-post-thr-increasing-pain.46185/

Let's have @Josephine weigh in on how it is determined which prosthetic will be used.
Is the decision made while you're under anesthesia, during the procedure itself?

Also, curious about Jo's feelings on the progress of stem cell research within the time frame you mentioned above.

 

[Cassidy]

Aloha @AgilityDog - sounds so much more glamorous than hi! I must admit to wondering what they'll find when they eventually open me up - I almost hope it's bad enough to warrant the op! Because I had osteomyelitis in the acetabulum, my bone itself is in good shape - it apparently just ate up the cartilage (I get images of little Pacmen munching on my cartilage). That's why I'm sentimental about losing the head of the femur, if there's nothing wrong with it I suppose.

And, thanks @Layla - again, I read too much in the the Daily Mail health pages, and remember reading fairly recently about advances in cell stem therapy in rebuilding knees, so wondered if they were getting closer to a sort of cartilage rebuild so that my poor bone could be left in one piece! Wishful thinking, I know, but people keep telling me how much the replacements have come on over the years and it must only be a matter of time before they can regrow the cartilage ....... I think a wedge of silicone, or a squirt of a rubbery substance in the space would probably do it. My husband's very handy - surprised he hasn't got to it with his silicone sealant gun yet!!

Joking aside, I'm know I'm clutching at straws and I'm sure if there was any such thing on the horizon, my OS might have mentioned it. I didn't even ask him if I was a candidate for hip resurfacing, rather than full replacement, as my previous consultant - five or so years ago - told me not to believe all the things I'd heard about that op (not that I'd heard anything!) because it wasn't as miraculous for most people as had been made out. I think some famous chef had had it (can't remember which one), so it had been in the papers, and it made it sound as though it was an easy, straightforward op that would negate replacement. As I said, I ask too many questions and read too many articles for my own good!

Anyway, I'm talking myself out of it again now, and my husband's already put the risers on the legs of the armchair! I'll go with the flow for now and see if my MRI proves clear regarding infection, and then things will move forward - scary!

I would appreciate any input that @Josephine can give, though. Thanks to everybody for being so understanding about my to-ing and fro-ing.

 

[AgilityDog]

I had an MRI w/o contrast. Bunch of others as well. It showed the Osteo-arthritis & some of this and some of that && a little PACman activity on my femur. Apparently looking at my hip in person is much more informative than other tests. I don't say that as if I expected anything different. (I can't remember if that is my 'dry humor' or 'sarcasm'. )

 

[anny]

Hi @Cassidy ......could have written your last post myself! Like you, I panic out loud, suppose it's cos I want to hear someone saying it will be a breeze, but yes, when I've overdone it he does say "well you can always cancel" And the forum is strictly 'my' thing......don't think he'd understand why I want to talk to strangers rather than him (well, the obvious reason is that he hasn't had an op before, and forum members are endlessly patient with wobbles.....have never ever seen a reply saying 'well don't have it' )

I also wonder how I'm going to be immediately after the op....I can see if you have the awful pain some people have it is a vast improvement, but am a bit worried that, as like you, I don't have much pain in the day (night is different) I might be temporarily 'worse' off....feel such a baby, but I've never been in hospital apart from childbirth (and I know that makes me very fortunate ) If that niggling worm of doubt gets too much for you, feel free to p/m me, and we'll bore each other to death

 

[BeBe]

Hi @Cassidy
I have been on the wobble about hip surgery for years. I have also been unfortunate with my spine. Been MRI'd, injected, PT'd, medicated and gone to too many docs. Long story but involved wont go into now.

Four years ago I was told I needed both hips replaced and probably surgery on my spine. I jumped ship on conventional and looked into stem cell and went through all of the workup for that. I started by having another round of prolotherapy which I had had in 2005 but what I had in 2014 was a different animal. Very involved utilizing platelet rich plasma. This DID HELP and I say it bought me three years. Crazy painful but worked to stabilize my tendons and ligaments waist down.

Apparently I have a hypermobility issue. Anyway once I stabilized from the PRP injections I decided to NOT to go through with the stem cell. I felt that my joints were too far gone at that point for stem cells to work their miracles. I was told both had no cartilage. My research led me to realize when it gets to that point stem cell success can be uphill. That and it, SC, is crazy expensive and not covered by insurance and since health insurance is private pay for me also I had to make a $ decision. I was not in constant pain, subjective I know, but in retrospect I compensated and went my way. I gave up riding and most of my active lifestyle.

Until last March, everything started all over again and long story short I am scheduled for March 23 for first hip then next hip shortly after. This time around the pain has been pretty intense and my life has changed because of it.

My older sister had her first hip at age 57, knee at 62, second hip at age 70. She is currently 72 and completely functional and has NO PAIN. And is more active than most people in their 40's. I am 12 years younger and you would think she is the younger one. She doesn't even have gray hair!

I tell you that because she hounded me for years to just have the surgery, she could see how much I had changed mobility wise. should have listened to her! My husband agrees with her BTW.

 

[AgilityDog]

I only go to 9 in my pain level. @anny & @Cassidy . Every pain is compared to labor & childbirth (for me, in my mind). My pain, after my new hip, was my Fibromyalgia in the muscles of my thigh. My hip didn't hurt. It was the blasted Fibro. It was like (labor) transition phase....but an hours long contraction (no break in the pain). So, sure, there's discomfort after surgery, but it is amazing how your hip doesn't hurt. A new hip is not as attractive as a beautiful newborn baby. As I recall birthing, I felt better after surgery than after giving birth.

 

[Josephine]

I didn't even ask him if I was a candidate for hip resurfacing, rather than full replacement, as my previous consultant

There's actually very little difference between the two. In both you end up with a functional hip which is really all you're looking for!

I think some famous chef had had it (can't remember which one), so it had been in the papers, and it made it sound as though it was an easy, straightforward op that would negate replacement.

Heston Blumenthal. And don't believe everything you read in the press!

 

[Cassidy]

Thanks @Josephine. I just thought that resurfacing maybe retained a bit more of the healthy femur - but somebody told me it was only a short term fix and I'd probably need the full works soon anyway. And I've never been a very good cook!

 

[Josephine]

No, not necessarily. It used to be many years ago but as with all these things, technology has come on apace since then! And all I'm saying is that neither one is better than the other. As the saying goes "ya pays yer money and ya makes yer choice"!

 

[Cassidy]

Just got an appt through to see my OS on 12th March, so hopefully he'll answer my questions then (maybe not the stem cell one!). He should have the results of my MRI and blood test (to check for infection), and if he still recommends replacement, I'll go for for it! Not to say that I won't wobble. As I'm already on the list I may not have to wait long enough to fall off the perch completely!

 

[Bevlah]

This surgery is soooo much better and easier to recover from than childbirth!! No hours and hours of contractions and no control over what's happening. You are cared for by lovely nurses in pre op. The spinal injection doesn't hurt. You go numb from your chest down then they put you to sleep. Next thing you know you're woken up and you have the best cup of tea ever!!! Piece of cake! The recovery is hard but the pain is not as bad as the oa pain you are in now so please go for it! I challenge you to find a post on here of anyone that wasn't glad they had it done??? Impossible, just like even considering living with pain that will only get worse. Do it lovey you will not regret getting it done

 

[Layla]

We're here to back you either way @Cassidy
It's a tough decision, we get it....you know that.
Hope today is great!

 

[Cassidy]

Thanks @Bevlah and @Layla. I'm really relieved that I'm getting to speak to the OS again though, as I thought I was just going to hear about a pre op and no chance to ask questions now I've found out so much more via this forum. It's funny that I'm being supported by people so geographically far apart, and yet united by one cause as it were! Hip's been niggling a lot today, even when swimming, and each time I feel a pang I feel pleased that I'm justified in what I'm aiming to do - sounds masochistic, I know, but I need proof that I'm not imagining my aches and pains. It's lovely and bright and sunny here today, which makes me feel more upbeat about taking action so that I'm better-ish for the summer (which is my favourite season - I don't do cold and dark, although I don't know what it's like in Minnesota!).

 

[Layla]

I agree, @Cassidy, it is great to have friends scattered around the globe. Makes one feel so worldly

Sorry your hip is bothering you. It has a way of ruining a girl's fun for sure.
Hopefully talking to the OS today will provide answers to your questions and alleviate some of your fears.
We all had them.

Enjoy your bright sunny day, everything feels more positive on beautiful days. We're about 20 F
today in MN 3-5 inches of snow expected. No sun. The ground is white, the sky is gray, the trees are bare.
Let's just say the exact opposite of what @AgilityDog is experiencing in Hawaii, lol!
Thank God for Evergreen trees!
Hope your evening is good.

 

[Cassidy]

I'm feeling fraudulent again today, as I've been stripping wallpaper with little or no pain. I keep reading about bone on bone pain (not sure I know what that is, as I never feel any grating or grinding - just pain in my groin, or down my leg to my knee, or in my thigh - and sometimes my joint almost refuses to move any more), and I'm wondering again if I'm ready for this huge step. It also doesn't help that I've been reading a lot of hammering, sawing, drilling, sort of posts! That said, I walked around half a mile last Friday and thought I'd done pretty well - no immediate pain, just a bit of stiffness - but hobbled around for the next few days. It's strange how it's almost as though a nerve has been irritated and then settles down until the next time. Hubby thinks the fact that I can't walk more than half a mile necessitates my going through all the above agonies! I must admit that I've been thinking back over the past few years - three years ago I walked all day around Paris with my daughter, two years ago I walked all around Disneyland with the family, one year ago I had to decline walking around any of the ports we stopped off at on our cruise, and last Christmas I had to plan where to park the car so that I barely had to walk at all - but if I take care, I can get by. I don't wake up every morning in agony, and I don't go to bed every night in pain - mine comes on after walking or standing for a bit. I sometimes have to go upstairs on all fours (sounds fun!), because that can give me gip, but I've got used to the underlying discomfort that's there all the time. Anyway, that about sums up my overriding worry - should I hang on a bit longer? Am I being a wuss? (don't know if that's how you spell it!) What if the pain after recovery is worse than now? And will I ever be able to strip wallpaper again (not that I particularly enjoy that, it's just an example!) Going to see the OS on 12th March, and if all is well then it'll be the slippery slope to the op - and I think it may be a fairly short slope, so if I'm going to change my mind, it'll have to be soon. Oh, how I wish I wasn't a worrier/thinker!

 

[AJinNH]

Hi @Cassidy I certainly can relate to your hesitation and wondering if it's too soon to have surgery. If you search my username you'll see that my very first post was exactly that question. I'm having RTHR on March 19th, and it's been a bit of a rollercoaster ride the past few months; one minute I'm having it done, the next I'm totally questioning my decision. Like you, I can go long stretches of time pain free. I don't take any pain meds, I don't have pain when I sleep, I can bend down and tie my shoes and don't use any assisted devices. Well, actually, this week for the first time I started using a cane when going up and down stairs because of my knee. I hadn't limped at all until just very recently, and even then it's not all the time and very slight. Most times I walk along at a pretty brisk pace.
Which brings me to why I am going ahead with the surgery. I have OA, with bone on bone, and although I don't have daily pain, it has impacted my other joints. Your body finds all kinds of ways to compensate for a bad joint. My right knee has flared up twice since November to the point that I couldn't walk on it for close to 2 weeks. I've started having some slight sciatica in my left leg, which I'm sure is because it's compensating for my right side. And even though I hadn't limped, my gait isn't normal, it feels like my right leg and foot turn in at times. I look around my house and see how I've compensated for my hip: new chairs, new mattress, 'old lady' shoes . Most of all I'm not as active. I tell myself that I'm not in pain and do lots of things like you did without experiencing any pain at the time, then like you I pay for it over the next few days. Sometime's it's hip pain, sometimes knee or back. Sometimes I find myself holding on to the railings going upstairs and wonder what that's all about But we know what it's about. I pick restaurants where I know their seats are comfy. I try not to drive far too many days in a row. And I can't go out for those long walks that I love. Right now I can go out and walk for 3 miles. I've done it lots of times. No pain at all while walking. But oh boy, either later that day or the next I'm in trouble. So I've basically altered my life to avoid the pain. Hopefully I'll get my life back and can again look forward to those 3 mile walks. And the rest of my body won't continue to take a beating as it tries to compensate.

 

[Cassidy]

Hello @AJinNH. I'm glad you understand how I feel. I can't walk for 3 miles, but last Friday's jaunt was further than I've walked for a while, and I was surprised how reasonable I felt at the end - but, oh boy, I paid for it the next day! I haven't had my x-ray described as bone on bone, but the OS didn't hesitate in agreeing to surgery, which I suppose confirms that it must be bad enough for him to consider operating on - especially here in the UK, where the NHS are cutting back on all their hip replacement surgery. I'm going to see him next week, so I'll check with him that it won't wait much longer - he's a young man, and his comment last time was why wait and cope when I can have it sorted and enjoy things again. It's just that doubt that I could make things worse - I'm sure you know what I mean. (You're the same age as me, too, which is good, as I also think I could string it out until I'm older!) I'll have a look at your thread as you suggest. Thanks for coming back to me - I suspect my op won't be much behind yours, so I'll watch with interest!

 

[Jaycey]

What if the pain after recovery is worse than now?

I have had both hips replaced and can confirm the pain you are feeling now is far worse than post op pain. And the good news is that unlike pre-op pain, post op pain can be controlled.

It's just that doubt that I could make things worse

How about focusing on just how much better you will make things if you have THR. You will indeed get back to doing whatever you want to do without planning ahead based on being in pain.