Surgery after Diagnosis

[JohnnyMags]

Thank you so much .... as you probably know any ray of hope helps immensely ... Thank you again Nikki

 

[joemz200]

I don't have ALS, but my wife has ALS and frontotemporal dementia. This post isn't about any of that, it's about my own experiences with bilateral knee replacement surgery (both at the same time). The rehab is extremely difficult because you literally don't have a good leg to stand on. When I had it done 10 years ago the rule was the bilateral replacements required going into a rehab hospital, for me it was two weeks, for PT and OT. It was extremely painful. I'm not sure that a rehab center, a skilled nursing facility (SNF) would be willing to manage the surgery and ALS needs.

Have you tried cortisone? That was very successful and each shot provided several months of pain relief

 

[JohnnyMags]

Joe .... Thanks for weighing in on my original question. We did have cortisone as well as the shot of lubricant. Nothing worked. As for the knee surgery I would only want her to have one done and then we would see if it helps. I have had both knees done as well but not at the same time. I really don't remember that much pain although I was taking some kind of pain killers. I was anxious to stop them because of the danger of addiction. That all being said I'm leaning towards not having her do the knee. You say you don't have a good leg to stand on well the fact is neither does she. Just tonight in the kitchen she complaining she can't move around without holding on to something. Her regaining some of her mobility is one of those rays of hope. We will see what the orthopedist says on April 4th.

 

[jackd7771]

I am new and would never make a suggestion on how to persue relief. I recently had a feeding tube placed. This has seemed to somehow speed up the progression of my ALS. The thought process behind this was that I was loosing a lot of weight. My core muscles condition is causing my spine to curve, hence the feeding tube while I am straight upish. Maybe I am way off and everyone's case is different. Feel like I lost time just not sure if it was worth it yet. Just wanted to share that.

 

[lgelb]

Welcome, Jack.

I am sorry to hear that your progression has sped up. Just a general note that corn/glucose syrup formulae such as Jevity, Isosource, Ensure, Boost, etc.,, in case that's what you're using, are not what the body is used to/made for -- this is especially true in ALS where the metabolism is affected by the disease.

So to aim at maximum nutrition, usable energy, and reduced GI issues, I always recommend either blending real food with liquids and/or mixing and matching with a "real food" unprocessed tube formula like Whole Story.

 

[JohnnyMags]

Jack so sorry to hear what your going through. Anything that seems to speed up progression has to be disheartening. I hate to think about it not a day has gone by in 5 months that I haven't cried. I don't know who has the worse end of the stick. On my wife's part she is putting up a good face but I'm sure when she's alone she's terrified knowing what will happen to her. That's the helplessness I feel not being able to do anything to protect her from this disease. On one hand I'm glad I will probably out live her because I'd feel like I'm leaving her alone in a world she'd be lost in if I went first. But that's the only benefit in outliving her. When/if she's gone I don't know how I can go on.

 

[Gtwals]

My husband is in a similar situation. He was diagnosed in September 2024. Both knees are bone on bone. We were seeing orthopedic before diagnosis and contemplating knee replacement. Ortho dr actually referred us to Neurologist. He thought there was more going on than his knees from the way he was walking. All that being said, my husband fell at hospital a small cut on his leg did not want to heal. Also had a small growth on his back taken off. It took forever to heal. He is getting the gel shots and inbetween he gets cortisone shots. Also uses alevex roll on. Surgery is not an option for him. I really don’t think it would heal. Know you are not alone in this journey.

 

[Bike Mike]

Lots of good advice provided so far. I am a PALS and was a physical therapist in your area (Bucks/Montgomery counties), so I can speak to the rehab after TKR. While rehab has improved with quicker and less invasive surgeries, it is still extremely challenging even under the best situations. Given that your wife has already had a decline in her walking, it is possible and even likely that TKR surgery would make things worse. If the goal is pain relief, there are other options. Seeing a palliative care practice (different from hospice to be clear), who has the perspective of identifying the goals of care over procedures, would be a good place to start. There is one at Doylestown Hospital that does office or house calls. Even a typical pain management practice may miss the mark. Most specialists do not comprehend the situation that people with ALS are in, even neurologists who don’t specialize in neuromuscular disease. Orthopedic practices can oftentimes be one trick ponies. It’s horrible how many people with ALS have surgeries with good intentions, but based on poor reasoning.

I live in Lansdale, PA. I’ve had experience with Penn, Jefferson and Temple’s clinics. Many people have spoken positively about Penn’s clinic. Unfortunately, I did not have a good experience there. Temple has an exceptional clinic, and will likely get your wife in much sooner than 3 months from now. Despite the neighborhood, it’s easy to park in the lot and get into the clinic safely I go to Jefferson, and have had a very good experience there as well. It is concerning that Penn has not had your wife’s respiratory status assessed. That’s a pretty fundamental part of any ALS clinic session. Your wife will certainly be required to have that assessed if surgery is being considered.

Happy to talk to you by phone if you want to talk to someone local. The moderator can connect us if you’re interested.

 

[Virgo777]

Thanks Nikki, I tried with Eleven labs voice banking . Had recorded voice from Old content . It has been almost 2 months but the device ipad funding issue . Now they want diagnosis information . Taking so long to get approved.
Sent them 20 min/30 sec/20 sec recordings . They still have issue of cloning voice . Problem is by the time I got diagnosed my speech was totally gone .