Surgery after Diagnosis

[JohnnyMags]

My wife has been diagnosed in Oct 2024. She had been experiencing problems walking and to be more specific a lot of pain in her knees. Needless to say the diagnosis was devastating for us both. There's no reason to rearticulate all that goes with getting and living with that news. Now two weeks prior to her diagnosis we saw a very well respected orthopedic doctor and he said her knees (both) are in bad shape and the bone was grinding into bone.

After my wife's diagnosis the neurologist (with the Univ of Penn) advised against having the surgery. His concern is the ALS will make recovery more difficult. Now the key word in that concern is recovery, it may be more difficult but there is recovery. With out the surgery there will be no recovery.

Today we saw my wife's PC doctor who has always been conservative in treating other ailments thru the years. He was rather animate in favor of having it done. The doctor brought up the fact what if she lives 8 to 9 years why would you want to endure that pain, which will only get worse over those years. He also said she can tolerate the surgery better now while she's still in relatively good shape. My wife's PCP said if the neurologist poo poo's the surgery we should ask what he plan's to do about her knee pain.

My wife can walk with a walker but not too far at this point but who knows how much of her pain is just the bad knees. The orthopedist wanted to do both knees at once but now I would ask him to just do the left (the side that hurts more) then we can see if that improves her leg/knee pain. If it does then do the right knee in 6 - 9 months.

If anyone has any kind of knowledge that would help us or the doctor decide if it's the right move. I'd appreciate it.

I just found these forums a few days ago and I've already gained insight about this horrible disease. I'm sure you'll see my name as time goes by and I deal with what is unknown right now.

 

[swalker]

I am so sorry your wife is faced with this decision.

I think "recovery" has to be evaluated based on her ALS diagnosis. Recovery may mean something very different that what she and you have in mind.

It sounds like the purpose of the surgery is to relieve pain rather than to restore function. If the thought is that it will restore function, then she should carefully consider her progression to date. The thing about ALS is that it never gets better, only worse.

If she goes forward with surgery, I think (my opinion, and I am not a medical professional) it is likely she will never walk again. The likelihood of her recovering to the point that she is not dependent on a wheelchair seems quite low to me.

If it were me, I would very carefully consider the implications of surgery and would seek out multiple opinions from medical professional with great experience in ALS.

Steve

 

[lgelb]

Welcome, Johnny. We will support you however we can.

Are we talking total knee replacement here or some other kind of surgery? Was the orthopod you saw the one who would be doing the surgery?

First, I would always get a second opinion on what kind of knee surgery to even consider given your wife's limited life expectancy. It is an area where not everyone does the same procedures, and you had the consult before she was diagnosed with ALS. I would also ask the same question of the original orthopod. The less invasive the procedure, the less recovery time, and TKRs are designed for a lifestyle and lifetime that your wife will not have, unfortunately.

Second, I would be clear with all the docs you consult and with yourselves as to what the goals are. I agree that bone on bone pain bilaterally is very hard even for a healthy person and with growing immobility, it will be harder to move in ways that help it, which could potentially make the pain and disfigurement much worse. I would expect permanent swelling, possibly even with surgery. I would also look to understand if non-surgical alternatives such as HA injections could help and if so for how long.

So I guess from what you've said, I would be trying to work with a knee surgeon who is not wedded to any one procedure (many are) to discuss the goals and how best to achieve them, in consultation with a pain management specialist, probably a physiatrist (PM&R) who understands the non-surgical options, so you can compare and contrast and come up with a plan. Some physiatrists even work with ALS clinics.

I have experience with the Penn clinic and would consider a visit to the Temple clinic if they are in network for you, to see how they would approach this question and what resources they could bring to bear.

 

[JohnnyMags]

First off thank you for the replies to my question. To answer some of the questions that came up here. My wife's PCP is the one in favor of her getting the knee done. We already tried the knee injections as well as the back injections. As for the surgery it is total knee replacement. We were given Temple as a place to go for treatment but we chose Penn due to the Temple neighborhood being bad.

I guess I'm in the try anything and everything mode .... there isn't a day that goes by that I don't cry I feel so bad for my wife ... I don't now what to do

 

[jjanesth]

Johnny,
Sorry to hear about your wife's diagnosis. Depending on her condition in relation to ALS, she might be able to have anesthesia and surgery without too much difficulty. Defining your intended outcome, as suggested above is very important. If it is pain relief, there are a variety of nerve blocks at the level of the knee that can help with the pain. There is something called radio frequency ablation that can target the nerves for long term pain relief.

The surgery itself can be done under epidural or spinal anesthesia, but anesthesia in patients with ALS is rare, so it is difficult to predict what type of complications might occur related to the nervous system. Maybe none, but there would be no guarantees, and it would be difficult to assess whether any complication is due to surgery/anesthesia or due to the natural course of ALS. You did not mention your wife's symptoms of ALS, but any arm or leg weakness will make rehabilitation after knee surgery very challenging.

If you are keen on exploring the surgical option, consider having the orthopedic surgeon refer you for a pre-surgical consultation with the anesthesia department at the hospital where he/she operates. Also, consider a referral to a pain specialist that the orthopedic doctor can refer you to. Anesthesiologists with further training are specialists in pain management, and are highly skilled with nerve blocks. It was suggested that you get another surgical opinion; perhaps your PC physician could refer you to UPenn for the second opinion, and you could also ask them for the anesthesia/pain consults.


Blessings to you and your wife.

 

[Clearwater AL]

jjaneth, I see this is your first post as PALS. Maybe you might share some info on your
diagnosis, when, who and where. You seem very knowledgeable and can be helpful
in the future contributing to the Forum.

Welcome.

 

[Nikki J]

I think she likely could tolerate the anesthesia part unless she has respiratory compromise already. I believe the concern is the rehab process. Recovering from tkr is a brutal rehab and if the patient doesn’t do it their outcome is suboptimal. I gather she has leg weakness from ALS ? I am still walking but I do not think I could manage the rehab and I would expect it to accelerate my progression.

This is truly a rock and a hard place I think you need to talk frankly with everyone especially the neurologist and the clinic pt

 

[jjanesth]

Clearwater AL,

I did post a synopsis on 10/20/2023 after I joined the site, but I have not been active in posting, though I have been following the site.

I have bulbar-onset ALS that initially presented as slurred speech in December, 2022. By June of 2023,, I had to stop working because my voice was noticeably affected, and it was exhausting to speak. That same month I had an EMG that was mostly non-diagnostic. It took forever to get to an academic center to get the final diagnosis (clinical picture/exam only) in September 2023.

I take riluzole and nuedexta, opting out of Radicava because I was not sure if it was making me worse, and I did not think that the clinical research results for Radicava were compelling (in no way do I wish to dissuade anyone from taking it, just my own opinion).

Currently, I use an eye-gaze device, as I have lost the use of my arms/hands and voice. After some serious deliberation, I opted to have a feeding tube placed, as meals were taking forever.

I don't wish to detract from Johnny's important purpose.

Best regards.

 

[JohnnyMags]

Well thank you for alerting me about the anesthesia obviously something I did not know. I did notice while reading other posts there was a suggesting to read "Read Before Posting". After reading it I found quite a few things that don't apply to my wife or they have other causes. I wasn't happy with U of Penn from day one. Our original diagnosis was from a sort of local neurologist. He recommended U of Penn or Temple. We chose U of Penn and that was to be our 2nd opinion. All he did was the tests of pushing and pulling as well as a reflex test. Then he said he agrees with the initial diagnosis. He never even gave her a second EMG. Now I'm wondering if I should seek a true 2nd opinion at Temple.

 

[JohnnyMags]

I took the step of calling Temple. They took our information and told me a woman who is a nurse will call me back. The thing that has me very concerned is my wife's voice. It seems to be getting softer and very creaky. Today I had to run to the grocery store and while there I called her to check on a product. I couldn't believe how creaky and weak her voice sounded. Right now I try to do anything for her but she has no energy and spends the day in a recliner falling in and out of sleep. It breaks my heart.

 

[Nikki J]

Look into voice banking or cloning if she or you are interested it needs to be done asap. Bridgingvoice dot org has a program with eleven labs that is free for pals and to me the voice clone sounds good. They can also work with previously recorded voice if you have that.

If she has voice involvement ( bulbar) already and started in her legs this is concerning The fatigue could be part of it though Do you think some of this is her understandable reaction to diagnosis? The other thing to consider is if she has any respiratory issues. Did Upenn check breathing? Was it ok and how long ago?

I have a couple of friends who go to Temple and are happy with it fwiw

 

[JohnnyMags]

I'm sorry if I seem to be bombarding this site with questions it's tough when you don't know what to do. Nikki you said "If she has voice involvement ( bulbar) already and her symptoms started in her legs this is concerning" Her voice has changed 6 or 7 months ago and yes her first symptom was her legs. Why do you say it's concerning? U of Penn did not check her breathing. She can still talk and she says in doesn't hurt to talk but as I said it is creaky and it seems to be getting weaker.

As for the banking and cloning along with the ASAP comment. That presents a problem our return visit to U of P isn't until March 19 and if Temple calls me back soon I doubt I will get in there very quickly .... It took almost 3 months to get into U of P so that is our ASAP
I really appreciate the responses there seems to be a lot we can do I just wish I knew more. Again let me say the use of the word concerning is in itself concerning to me. We have been getting through the days by taking the position she will be here for a long time but when I hear concerning it makes it tough to keep up the hope.

 

[Nikki J]

If she has bulbar symptoms after leg onset quickly that seems like it is spreading . That is why I said concerning but no one knows what the future holds. It is good that she is still talking and maybe this isn’t bulbar but fatigue and do you think she is depressed?

You do not need the clinic to do voice cloning. Go to the bridgingvoice dot org site i referenced. They have a page where you can apply for the free eleven labs and helpful tips. You can also message them if you don’t understand something

 

[JohnnyMags]

OMG I just spent the last half hour in tears. I looked at the voice cloning website but I need more time to look into it and somehow understand it. The gut punch was looking up Bulbar onset and seeing how bad that is. It seems that it is the worst form of ALS and with it comes quick disease progression and decreased life expectancy. That hit me like a ton of bricks. They say with Bulbar two years (of which we probably used 6-9 months). We have been lifting our spirits hoping for a long rest of her life ... This crushes that I feel so lost I will miss her more than words can say

 

[Nikki J]

Bulbar is not always 2 years I can name several pals who lived or are living three times that or more. Everyone is unique. When you get to your next clinic do tell them your concerns about her voice. See what they say.