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AlabamaGal

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Loved one DX
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AL
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Dothan
After 8 weeks of immobilization, the orthopedic doc said today my Bill's humeral head (right shoulder ball) is not healing, and has, in fact shift a lot. If he didn't have ALS he would do surgery. We are going to have mild PT for 3 weeks, redo the x-ray and see if it is healing in its current position or has shifted further. Surgery could be dangerous because of the ALS/breathing stuff, but it might also help. We don't know what to do. His right arm has been his strongest most useful. Just wanted some thoughts from other PALS and CALS on whether you have had surgeries since ALS struck. Do we take the chance on it helping him or just let it go?
 
I asked my friend who is a neurosurgeon if it would be worth it to fix my messed up hand. Since he's a friend he was honest enough with me to say that at this point it would not be wort the pain and risk. What does your husband want to do? What does the doctor recommend?
 
My doctor's replaced my knee a month or so before I was diagnosed with ALS. REHAB was tough, but worth it considering how stable my knee was for the 1.5 years I was able to continue to walk before my muscles failed.
 
Without knowing any other details, I'd probably do it if I was a slow progressor, and skip it if average or faster progressor.
 
I had a laprascopic hysterectomy last week with no complications. My fvc is above normal though. Orthopedic surgery is very painful so that should be a consideration.
 
Remember, shoulder are all soft tissue and very little bony structure. Make sure you are dealing with a surgeon from the upper extremity group of the AAOS (American Academy of Orthopedic Surgeons) and then discuss whether the lack of muscle regeneration makes this a good idea. It will immobilize the shoulder for some time,so that needs to be taken into consideration. I am a very slow progressor with no respiratory issues yet, so this will be a very individual decision. I have rods in my lumbar spine that I am considering removing, and my ALS neuro said to make sure anesthesia knew of the diagnosis.

Good Luck
H
 
My husband had patella removed from his knee 1/12. He did well with the surgery and did fine with the hospital stay even with his PEG.
He has been fighting infections in both knees (with previous knee replacements) since 2009, not related to his PBP diagnosis and is facing another surgery if he wants to get out of the wheelchair. His speech is not understandable and we did have a family member with him in the hospital for the several days he was there.

I would say this has to be a decision with the surgeon and your husband weighing all the factors. I wish you the best. It's hard to make this type of decision. My thoughts will be with you.
 
What a difficult decision you guys have ahead of you. Is his Neuro on board with the prospect of the surgery? Is the Ortho knowledgeable about ALS? Will the anesthesia people be well versed in the care of a PALS at the hospital where the surgery is being done? So many health care professionals do not have first hand experience with ALS. Best of luck to your family. I'll keep you in my thoughts and prayers.
 
Deb...you are absolutely right on all counts. I am very luckly that my ALS center is also where all my surgeries have been done and they communicate well. The good new is that this is a rare disease, the bad news is that this is a rare disease.
 
Thanks everyone. We will be making our 7 hour journey to the Vanderbilt ALS Clinic April 6 and hopefully Dr. Peltier (the neuro) and Dr. Butka (pulmonary) can help us know what to do or at least our options. He starts PT in home Monday. The orthopedic surgeon will x-ray again April 2 prior to our clinic appt in Nashville. Can I just say how much I hate this disease!?!?!
 
Rant all you want, we are standing right there with you. Prayers for your upcoming visit.
 
Keep us posted Alabama Girl! good luck!
 
Keep us posted and rant away! Both PALS and CALS know the daily frustration that this demon gives us. I have heard wonderful things about Vandy and I am sure the will give you the straight scoop. Good luck!
 
Two very good points raised - first the respiratory risk of general anesthesia and also the effect on the limb being operated on or not operated on. The respiratory one, I think, is usually the easier to decide on depending on current FVC. If it's good, the risk is relatively small.

I was faced with deciding on a recent foot surgery which would have left me non-weight bearing for 4-6 weeks. I have mild-moderate leg weakness now. Walking is ok on flat surfaces for about a mile, uneven surfaces are pretty treacherous, and stairs are out of the question. So the question was could I risk 4-6 weeks of immobility on my weakest side and HOPE that both the pain would be gone AND I wouldn't gain any additional weakness from immobility - or did I want to deal with whatever pain I was having. Neuro said the odds weren't in my favor (or any of us pALS) of immobilizing any body part for any significant length of time and coming out of it when the same strength you went in with. We all know the adage "use, but don't abuse," but I also try to stick to "a body in motion stays in motion....for as long as my neurons will allow it!"

For me, it was a pain vs. questionable loss of more function issue - I was ready to just deal with the pain, alter my ways, and not risk further weakness from immobilization. In this circumstance described for your husband, it sounds like the immobilization and waiting carries more risk than the surgery itself, which will ideally restore mechanical capability for function and get him back to moving sooner. The downtime for the lungs & diaphragm under anesthesia, even with some mild-moderate drop in FVC, is considerably less than the downtime so far for your husbands shoulder. Like everyone else said, as long as the surgeons and anesthesia staff are prepared for an ALS patient the outcome shouldn't be drastically different than most.

Additionally, there are regional anesthetics that can be used in many shoulder surgeries as opposed to general anesthesia, thus negating much respiratory risk at all.
 
Thanks everyone. Thanks MichelleRN. :)
 
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