Arthroscopy Don't know what to do next/Knee-can't walk

[stephl]

@Jamie Thank you. My appointments are in two weeks with two different doctors. One in HSS Dr. Mayman and HUMC Dr. Klein. Crossing fingers I can get a TKR. My xray and mri don't show anything besides bone edema, but after my meniscus injury a year ago and a repair in January, I still cannot walk on my leg/extend it properly and pain all the time.

 

[sistersinhim]

It's great that you have 2 appointments coming up, and with 2 different doctors, too!

 

[Layla]

Wonderful news!
Your situation has to feel overwhelming and exhausting at times. I hope these appointments are with surgeon's who truly listen and understand what you're dealing with, taking your words and symptoms seriously, seeing the whole picture, and helping you move toward a TKR if it's appropriate for you.

I have faith in HSS especially since it's rated the top orthopedic hospital in the country. Please do keep us posted, stephl. We'll be here to support you whenever you're in need.
@stephl

 

[stephl]

Need to vent....

It’s so frustrating trying to find a surgeon for a knee replacement. There seem to be so many requirements, and if you don’t fit the typical picture of severe arthritis on an X-ray or MRI, it feels like no one wants to even evaluate you.

Why can’t symptoms and function be considered too? I’m dealing with bone marrow edema, an unstable knee, osteopenia, and significant difficulty walking and bearing weight.

I’m trying to schedule a third consultation just so I can keep my options open. Now I’m even nervous about the two appointments I already have because I’m afraid they’ll look at my X-rays and MRI and immediately decide I’m not a candidate without really considering how badly the knee is affecting me.

 

[Layla]

Looking back...I'm assuming you haven't met with the surgeon at HSS yet, or Dr Klein at HUMC...correct?
If so, please try not to get ahead of yourself. I do understand wanting an additional appointment on the calendar because it can take time to see some of these surgeons, but hopefully that won't be necessary after having the second and third opinion appointments behind you.

Consider relaying that you understand that your X-rays may not show the degree of arthritis they normally look for before considering TKR, but you'd like them to please evaluate the whole picture. Your symptoms, instability, the bone marrow edema, osteopenia, your limitations in function and the images you have. If after that they tell you they don't feel you're a candidate, I'd want to know exactly what they're basing their decision on and what they think is causing your symptoms. Also, what would need to change that justifies a TKR.

I understand your frustration. Try not to be nervous about the upcoming appointments, but instead hold out hope that one of these surgeons is able to determine the origin of your symptoms and a plan to resolve them.
Please feel free to vent anytime, we're here for you always.
Wishing you comfort, patience and peace of mind.
@stephl

 

[Layla]

Hi stephl,
I hope you're hanging in there. If I'm calculating correctly, your two appointments are next week?
Please let us know how you felt about your consultations at some point afterward, if you feel like sharing. We do care. Wishing you the best!
@stephl

 

[stephl]

Thank you. One surgeon down/two more to go. He listened to my unique case/complex. He will do another MRI to see how it looks compared to last time and proceed from there. (At least he listened to me and didn't dismiss me)

 

[benne68]

I'm glad you felt heard, @stephl! It's so frustrating when doctors dismiss our concerns when we tell them something they aren't accustomed to hearing.

I hope you have a good experience with the other surgeons -- and also hope the MRI gives some insights.

Do keep us posted.

 

[Layla]

This is an important step, steph...finding a doctor to take you seriously. Thankfully you met with someone who heard you. Hopefully having two more appointments for second and third opinions affords you additional opportunities to be heard and gain some clarity about what's going on and what your options are.

We're here for support so please keep us in the loop. I hope you have a nice weekend.
@stephl

 

[eaglemom]

It is so important to feel that you are being heard by your doctor. I hate either being dismissed by them or they tell me how my knee is doing. It's taken me quite awhile to get brave enough to speak up, and once I did I've felt better about my health care. The other appointments you have scheduled should help to bring to light what's going on.

 

[Jamie]

I’m glad this surgeon listened to you and agreed to look into your situation in more depth. Don’t be afraid to put a little pressure on him if he doesn’t give you some options for the pain and instability you are going through. You should not have to continue as you are without some help.

 

[stephl]

Thank you. I am worried, as it looks like an osteopenic change. Will need to wait for new mri.

 

[stephl]

Update: the second surgeon said everything looks fine in old mri/meniscus healed/repaired and that I just need to condition my knees/leg strength, and that a TKR would not benefit me. Yet, I can't keep my leg straight at all.

 

[EalingGran]

I am sorry you are not getting the answers you hoped for. Was this at HSS?
How did they explain the knee giving way? Do you have any obvious muscle wasting following your past injury?
If you want to look at a gentle approach to knee recovery. My pilates teacher has an excellent free glute strengthening workout on YouTube. Google katja/ pilates/ glutes and it comes up. It is specially designed for post knee injury as it is mainly side lying with no squats.

 

[stephl]

I am sorry you are not getting the answers you hoped for. Was this at HSS?
How did they explain the knee giving way? Do you have any obvious muscle wasting following your past injury?
If you want to look at a gentle approach to knee recovery. My pilates teacher has an excellent free glute strengthening workout on YouTube. Google katja/ pilates/ glutes and it comes up. It is specially designed for post knee injury as it is mainly side lying with no squats.

Not at HSS but another doc. He said if it were him, he would focus on rebuilding my muscle, but it literally feels like I have something in my knee that prevents my leg from being straight which the repair did not fix. Yes, both sides have muscle wasting, but I'm able to stand fine on my good leg. Thanks for the video.

 

[Layla]

Since this wasn't the HSS surgeon, let's hold out hope he has some insight that leads to a positive outcome for you. I hope you have a good day, steph. Thanks for keeping us updated.
@Steph

 

[eaglemom]

I thought I would check in and see how you were doing? We do worry and wonder when you don't report in!!