BTHR & bilateral shoulders - AVN

[Simpleway]

Well, this is a bit long. bear with me

I was diagnosed with leukemia ALL B high risk on March 2017 when I was 17 years old.
For 1 year I was going through intensive chemotherapy including the high dose use of steroids such as prednisone and dexamethasone - as a result of them I am currently handling with multiple AVN affecting both my shoulders, hips, knees and ankles.

The leukemia treatment is a 2 year treatment constructed as:

1 year intensive chemotherapy +
1 year maintenance [including just taking chemo pills at home on a daily basis].
I'm currently 3 months away from finishing my maintenance treatment and already having AVN issues for 11 months now.​

Because I'm in the maintenance treatment. I could not perform any surgical intervention (low white blood cell count) and as the leukemia treatment is the number 1 priority. My AVN got neglected and mainly treated with just physiotherapy.

Right now I'm 19 years old and my hips are the most damaged joints that are MUST be replaced with something. I can't spread them at all. I limp. Daily struggle. Almost no range of motion at all.

My shoulders started deteriorating just 2 months ago and I almost don't have range of motion their too. Can't reach my armpit to put on deodorant, can't put or remove jackets on my own. Can't reach high things. Struggling washing my face.


I'm struggling a lot with the AVN and while checking how can we handle the situation after the last year of treatment is over, we have been visiting some doctors and they all pretty much says there is almost a 0 chances to self rehabilitation in the hips and shoulders as they already collapsed.

I'll probably undergo total hip replacement in my both hips and both shoulders a hemiarthroplasty. As for the knees and ankles - nothing was suggested by the doctors. I guess it will just get better after I go off chemo.

It has been suggested due to my young age, to go through hip hemiarthroplasty instead of THR in order to "buy" some time, the doctor also mentioned, of course, that THR will gain better results in function rather then the hemiarthroplasty. But he said that the hemiarthroplasty is also good and maybe just 5%-10% less function than the THR.

Now I'm really just in a long and exhausting "surviving" time, since March 2017.

I never had a minute to breath and be peaceful. Always something in the way hurting or struggling with. I REALLY just want to get over with all of these problems and just trying to regain my life and to live them the best way I can and never look back.

I'm here reaching to your suggestions on what to do -

Whether hemiarthroplasty or THR in the hips ? Or even try and ask about resurfacing even though some doctors say it's old fashioned.

Whether to do 1 by 1 or go and do BTHR and afterwards both shoulders as well?

Whether to give a chance to my shoulders to rehabilitate themselves after I'm clean from all the chemo. Although the doctors say it is almost surely is not going to happen with a 0 chance.. But I guess I'm just a believer in my body?

And what are the results after shoulder hemiarthroplasty, mobility, long last and such?​

Just to hear and learn from your experience through those procedures and how to manage this the best way possible.

By the way, I used to be very athletic person and sport is a really important part of my life. I'm looking forward to be active again and just to do what ever I can and build my muscles up. So I am really afraid of the way I'll have to live after the surgeries as I'm young and want to be able to do what ever I want....

 

[Carriemay60]

Hi Simpleway. I am in no way experienced enough to offer any advice on what you should do but just wanted to reach out and say hi. I'm sure you'll soon have a gang of hippies rooting for some relief for you along with myself. The one thing that held back my hip recovery on my original replacement was not being able to walk properly because of a leg break and limited weight bearing so I do wonder how your other joints will hold up in your recovery and obviously from what you describe, a walker will be next to impossible with your shoulder limitations. There must be a way though and I look forward to watching your recovery.

 

[Jaycey]

@Simpleway Welcome to BoneSmart! My goodness - such a journey for you. Well done on staying positive through all your treatment.

The good news is hip replacement will be a walk in the park compared to your chemo. Success rates are extremely high and most people wonder why they waited so long.

Shoulders might be a bit trickier. But you will find some of our members who have had shoulder surgery are very satisfied with the outcome.

I'm going to tag our Nurse Director @Josephine to address your question about hemiarthroplasty. She has many years of experience in orthopaedic nursing so is best placed to discuss the treatment options you have been given.

 

[Pumpkin]

@Simpleway
Welcome to BoneSmart, glad you joined us!
A number of teenagers have had hip replacements, here is a link to some of their stories, Teenage hip replacements

 

[Josephine]

Whether hemiarthroplasty or THR in the hips ? Or even try and ask about resurfacing even though some doctors say it's old fashioned.

Under no circumstances accept a hemi in your hips. Even in the very old folk who have usually suffered a fractured hip, it's not a reliable procedure. At your age you MUST have a THR. As for the resurfacing, in no way are they old fashioned. They are still being done in their thousands but I strongly suggest you have a discussion with an top rated hip resurfacing surgeon first to see how it would stand in your situation.

Whether to do 1 by 1 or go and do BTHR and afterwards both shoulders as well?

Definitely try to get a bilateral hip replacement but not a bilateral shoulder. You'll be able to walk after the THRs but coping after a bilateral shoulders will be rather difficul as you'll have to have your arm strapped to your body for at least 6 weeks. Also don't let them talk you into having a hemiarthroplasty in the shoulders. They too, will need total joint replacements.

Whether to give a chance to my shoulders to rehabilitate themselves after I'm clean from all the chemo.

Quite likely yes but you will need to discuss that in depth with the shoulder surgeon.

And what are the results after shoulder hemiarthroplasty, mobility, long last and such?

Here again, you should on no account agree to hemis in your shoulders. They are prone to poor outcomes. So you need a total shoulder replacement and nothing else. There are several types of device on the market, all with good reps. What you need is a top rated upper limb surgeon.

As for rehab and outcome after a TSR, it's a lot more protracted and difficult than THRs, principally because there is much less soft tissue and strong muscles around the shoulder than there is in the hip.

I hope all this helps some.

 

[Mojo333]

Welcome to Bonesmart and I add my sympathy for your struggles...though I am so glad you sound so brave and strong and will indeed survive!
I am ever so thankful for my new hips and I do think if this older lady can do it...you could handle bilateral and be glad to be one and done.
I work a very physical job..love to walk, climb, ride ATV, and swim.
My Bionic hips are Sweet!
The forum was great help and comfort to me on my journey, so you have lots of folks to cheer you on!

 

[Simpleway]

Thank you guys for sharing and trying to help! I really appreciate it.

Under no circumstances accept a hemi in your hips. Even in the very old folk who have usually suffered a fractured hip, it's not a reliable procedure. At your age you MUST have a THR. As for the resurfacing, in no way are they old fashioned. They are still being done in their thousands but I strongly suggest you have a discussion with an top rated hip resurfacing surgeon first to see how it would stand in your situation.
Definitely try to get a bilateral hip replacement but not a bilateral shoulder. You'll be able to walk after the THRs but coping after a bilateral shoulders will be rather difficul as you'll have to have your arm strapped to your body for at least 6 weeks. Also don't let them talk you into having a hemiarthroplasty in the shoulders. They too, will need total joint replacements.
Quite likely yes but you will need to discuss that in depth with the shoulder surgeon.
Here again, you should on no account agree to hemis in your shoulders. They are prone to poor outcomes. So you need a total shoulder replacement and nothing else. There are several types of device on the market, all with good reps. What you need is a top rated upper limb surgeon.

As for rehab and outcome after a TSR, it's a lot more protracted and difficult than THRs, principally because there is much less soft tissue and strong muscles around the shoulder than there is in the hip.

I hope all this helps some.

Hey there! Why specifically in my age I MUST have THR? - because im young and probbaly be more active then elderly people? and therefore ill need more function in my hips?

And about BTHR, the recovery stays the same time? 6 weeks? how is it diffrenet from having only 1 THR, i'd like to know what are the differents before choosing what to do.

About TSR... This whole thing scares me alot as everyone always say its more complicated and harder than THR. And THR is hard enough! Arent there more procedures able to preform that are succesful and less major than TSR? Is resurfacing is acceptable also in the shoulders joints?

And I like to hear more from people who have been through BTHR :D
About the recovery. Maybe some tips. Feelings.

 

[Pumpkin]

Simpleway,
Here is a link to all the bilateral THR threads.
https://bonesmart.org/forum/view/hip-replacement-recovery-area.5/?prefix_id=17
@Mojo333 and @Irish Joe had bilateral THR's and will be along to comment about their experiences.

You can find all the bilateral THR threads in the recovery forum, just click on the green bilateral banner.

 

[djklaugh]

@Simpleway I think what Josephine was saying is that the hemi procedure is not reliable to fix conditions such as yours and if you did go for that you'd just end up needing joint replacements any way. So why go through 2 (or more) operations if you don't need to? As for surgeon saying it's to "buy some time" - phooey! The hard ware used now a days is estimated to be good for up to 30-40 years at least!

As for having a BTHR well that is the best way (In my opinion and the opinion of my surgeon) to get 2 dysfunctional hips taken care of for one surgery, one hospital stay, one recovery period. While each person is different and each recovery is different, in general, as far as hip replacements go, you'd be fully mobile and able to get on with life on pain free hips with in about 3 months. And yes generally speaking the recuperation period for doing two hips at once is about the same as doing one. BUT doing one at a time means TWICE the recuperation time plus 2 surgeries and two hospitalizations plus 2 periods of worry and wait going up to each surgery. At least that was my experience though I was considerably older than you when I had mine done. Once healed up you probably won't have many restrictions on what you can do with new hips - only one I got from my surgeon was "no bungie cord jumping".

Go over to the recovery side and find a thread with a green Bilateral tag.Click on the tag and that will give you a list of all the bilateral threads, there are quite a few of us here .... and link to mine is in my signature though it is old and has not been up dated in quite a while. Read as many as you want

Shoulders are more difficult than hips because they are smaller joints, have many more muscles attached, and function in much more complex ways than do hips. I've had both shoulder joints replaced - pain following surgery was about the same as with hips (for me any way) and lasted about the same length of time and was easily controlled with ice and medication, having arm strapped and in a sling for a couple of weeks was a nuisance, learning to do things left handed when right shoulder was replaced was awkward and amusing, and PT is necessary with shoulders where as it's not usually necessary with hips. I have some weigh lifting restrictions with my shoulder replacements but for me that's not a problem. You'd need to discuss such things with a shoulder surgeon to see what you, personally, could expect after such surgery. There is a section here about shoulder surgeries - feel free to read some of those threads also.

Best wishes to you! You've already been through a really tough time and I sincerely hope the future holds the very best for you

 

[Simpleway]

Hello :D
Thanks for sharing.
I am currently in physiotherapy and today I spoke with my therapist and she told me that even though surgeons says that the recovery is 6 weeks for THR - that isn’t the case in reality. She told that the recovery can take up to a year since there is a lot to work on. So I’m just curious to know, what was your condition after 3 months? Also what way have you done the surgery because today there is a “front” surgery which make the recovery much easier and faster.

And how will I manage to go through the recovery with a decreased range of motion with my shoulders? I almost can’t clap my hands, can’t reach my arm pit. I’m doing a lot of PT at the moment for both legs and shoulders. (Since everyone use crutches and a walker and it’ll probably be hard to lean all my weight on my hurting shoulders)

May I also ask how old are you?
I feel like maybe I’m 19 but all my joints are 90.
Hopefully after I get clean of my chemo my knees and ankles will improve in a way that it’ll be easier for me to get through the surgeries.

 

[djklaugh]

@Simpleway I guess it depends on what one means by recovery. My surgeon imposed hip precautions for me ( no crossing legs, no hyper-extention of hips, and a few other things - some docs require these, others do not) for 6 weeks post surgery. By the time I saw him for my last post-op visit at 8 weeks post-op I was walking well with out any aids- no crutches, no cane). I was back to driving my car, doing all house hold chores and shopping, climbing stairs easily, sleeping on my side, wrangling my 2 big Maine Coon cats when they needed to go to vet or groomer, and was no longer taking pain medication . Surgeon "discharged" me at that visit saying I did not need to come back to see him again unless there were problems - and I have not need to seek out his care nor care from any other hip surgeon.

HOWEVER because I had limped for over 3 years before surgery I went to PT for about 9 months. Not because of the hips per se, but the muscles around the hips needed strengthening and retraining. Just as an example it took me 3 months to get left foot on to right knee and it took the full 9 months to get the right foot on to the left knee. I did travel across country for a school reunion at 6 months post-op and had a great time.

I had what is called an anterior-lateral approach - incisions were straight down the outside of my hips. The approach your surgeon prefers really won't have too much impact on your over all recovery.

As for crutches after surgery you might need to consider a different kind of crutch - the ones that have a band that goes around your forearm rather than the kind that go under your shoulders. You only really need the aids for balance because legs with new hips joints feel like they weigh 100lbs each and are made of concrete ( only partially joking here - that's just surgical tissue trauma that goes away pretty quickly with following the BoneSmart mantra - Rest, Ice, Medications, Elevate. )

I am now 71yo and had hips replaced when I was 64. Right shoulder done at age almost 66 and left one at 69.

 

[Simpleway]

Thank you for helping me! It is really good to hear that after 3 months you could be more mobile than I do right now. Since I have been through an aggressive treatment and using steroids all my muscles are basically disappeared so I guess I’ll be attending the physiotherapy a lot after as well. But it is a blessing being able to strengthen your body without any pain.
Im not afraid of this.
I guess the one thing that really frightens me is the shoulders issue. And the way my other joints affect/handle my recovery. I’ll be more than happy replacing my tired hips.

 

[Mojo333]

You will have muscle pain and discomfort after surgery but that horrid bone crunching pain will be Gone! Its amazing.
Dklaugh has laid it out very well.
The first month was hard...when two legs recovering, but not horrible and with the realization that it was temporary AND the hip pain gone...very Doable.
I don't know what additional factors that may look at in regard to your immune system and major surgery.
So glad you are nearing your quota for maintenance meds.
Such an inspiration you are for fighting for yourself!
Looking at everything at once can get very overwhelming...one day at a time, one thing at a time...as you know.

 

[Simpleway]

You will have muscle pain and discomfort after surgery but that horrid bone crunching pain will be Gone! Its amazing.
Dklaugh has laid it out very well.
The first month was hard...when two legs recovering, but not horrible and with the realization that it was temporary AND the hip pain gone...very Doable.
I don't know what additional factors that may look at in regard to your immune system and major surgery.
So glad you are nearing your quota for maintenance meds.
Such an inspiration you are for fighting for yourself!
Looking at everything at once can get very overwhelming...one day at a time, one thing at a time...as you know.

The thing is that in my hips I don’t have a lot of pain daily- it’s mainly the struggle with the range of motion as they don’t spread and it’s hard to manage this way. Yes of course I have a little pain and a discomfort while sitting more than like 15 minutes or sitting on hard material things. I often get pain also in my bed at night but I guess it is just something I got used to. It’s part of my day. The pain that really interferes with my sleep is my right shoulder that doesn’t let me sleep.

I don’t have pain standing up or sitting down or lying down. But the pain is there when I try to climb the stairs or sit down/get up, walking more than a few mintues or sitting down too much. And that’s not a way to live for a young girl so that’s the reason everyone offers me the surgery. I’m just afraid that the pain after the surgery will be way more intense than the one I have right now. Though I’m not really afraid. I can manage pain. Seems like the only thing i do the last 2 years. The knowing it is temporary that’s something that will motivate me go through, something I didn’t have a loooonnng time. Not knowing when the AVN story will end and how long it’ll takes really hard to manage through that.

 

[Simpleway]

Plus - I’m not going to go through the surgery till I get clean of chemo and my immune system will be strong and regular. Not taking chances here. Going to do this the best way possible

 

[Mojo333]

@Bevlah is a member who really struggled with ROM all of her life and has had hip replacement.
The shoulder has to be miserable on to of it all.
Bet you are a master pillow arranger! Oh, the things we will try !
Hang in there @Simpleway
You deserve to have a happy life!

 

[Layla]

Hi, Welcome to BoneSmart. Thanks for joining us.
My heart goes out to you, what a journey you've been on, sweetie.
The leukemia diagnosis and treatment is enough in itself, but then add to that the pain
of joint issues to deal with....it must be overwhelming. You're obviously strong, brave and you're an inspiration. I will be following your story and lifting you in prayer. Wishing you comfort and all the best going forward.
Big hugs to you.
@Simpleway