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tarajane Asked September 2015

My husband has a extremely bad shoulder and his ortho doc said the only thing left to do is reverse shoulder replacement. Should he do surgery?

He has a surgical consult this month. He is 67 and with Dementia, newly diagnosed. In anyone's opinion should he continue with the surgery? If he does not have surgery he will continue on with his pain meds for the rest of his life and as now they are not doing their job because he has been taking them for about 6 years for other pain issues as well. Thanks.P.S. Will the anesthesia hasten his Dementia ?

tarajane Sep 2015
Cricket 33, Thank you for being so long winded. We sign all the necessary papers with our atty Monday. I will be sure thanks to you that everything is covered. My husband's left shoulder hangs lower also. There is nothing left of his shoulder. I'm glad to know someone else knows about total reversal. YOU have your hands full.....My full respect and prayers go to you. I do not have the patience to handle things. But I pray all the time that God will give me some. Also it's a matter of when, not if he falls again and I am on edge 24/7. How do I handle this stress ? I'm new at this and just don't know how to handle it. I am sort of thinking no to the surgery but we will see when we go for consultation. Thank you

jeannegibbs Sep 2015
I suspect that the rehab is a critical part of this picture. If to "fix" the problem the treatment plan is for A, B, C, and D to happen, you cannot expect B by itself to provide a successful outcome.

Be candid with the surgeon. What are the chances of success with full and cooperative rehab? What are the chances if there is no effort at rehab?

Hugs to you! This is definitely Not Easy!

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crickett33 Sep 2015
My Mom had a reverse shoulder replacement in 7/2015. She fell in 12/2014 and ripped her left arm out of the socket. In 2008 she had a "complete shoulder reconstruction" after a fall in a store [the store was deemed liable]. The recent fall was at home: i think her knees buckled and she slid with her left arm straight out, about 20 feet across a tile floor, landing on her side in the coat closet. Same surgeon. They don't do this surgery for anyone under 65 - he's a renown sports surgeon [football players, etc], Mom was forgetful before surgery, and the pain of home care exercises from Dec-Jan caused a challenge on her cognitive state. She began ruminating, repeating herself, forgetting where we were going in the car, etc. She kept falling [14 times in Feb], so the surgery was delayed and the home PT/OT people were supposed to get her legs stronger so she could have the surgery, eliminating the possibility of her falling. She went straight from o/night in the hospital, admitted for 3 days, to a NH/Rehab facility. She's now also on Nameda - for dementia. Yes, the medical personnel do indicate that anesthesia can effect short term memory, but the direct correlation to dementia is a bit in the gray area. Once a person has the "dementia" word in their chart, i find it becomes the scapegoat excuse for anything they don't want to address any other way.

Your DH will probably need outpatient rehab. i had to choose NH/Rehab because Mom would not do her exercises at all if the PT/OT person wasn't physically there to make her do them. i tried everything - doing them with her, trying to make it fun.... nothing worked. She just did not want to do them.

i cannot lift up my Mom, and she's not able to push up on her elbow to get out of bed [bought a bedrail that she could pull on]. i had to remodel the bathroom - grab bars, shower seat, etc. The car required modification: a grabber to get in, a gel seat to help her get onto the seat, a walker, and a rollator.

May i please suggestion, BEFORE scheduling surgery -- please make sure the Trust or Will or whatever documents are completely up to date. Make sure there's a provision for "future medical care" ... i wish there were something in Mom's legal papers for a "Disability Trust" that would have isolated part of her assets. i live with Mom, but as a daughter, i'm not entitled to what a spouse would [i.e., preservation of 50% for household expenses, and yet the house is left to the Trust, and i am to live in the house until i die. If i sell, the proceeds go to the Trust and two sibs. Mom became stubborn after surgery, resenting signing any documents that we were working on before her surgery. But you'll definitely need DPOA, DPOM, HIPPAA and ... well, the other day, the psychologist suggested i file for guardianship. WHAT? All of this since 7/20/15? What kind of fast train is going on...... i really wish we'd gone to an Elder Care Attorney -- a different attorney than the one who drew up her trust. Elder Care Attorneys plan for the inevitable issues that develop when HEALTH and LIVING locations and asset protection become so very paramount. It's not only probate to watch out for -- but the horrific increase in medical expenses - whether at home, or in a facility. Mom was hospitalized for 9 days after experiencing a UTI and bed sores, which occurred at the facility --- it cost $102 a day to "save her room." We just aren't prepared for this ... so please, have a very frank discussion with an elder care attorney. You do not have to turn over management of any monies, stocks, bonds, pennies in the sofa, if you do not want to. You may be better off not since your cost basis would change. Most states have a 5-year look back period of assets [to see if anything untoward/ unusual has occurred in the balance sheet of assets - like 'hiding money' so as to qualify for assistance. You may want to look at any life insurance policies to see if any funds would potentially be available for long term care.

i want my mom home. i need her home. i keep praying it will still be my choice. There still is so much paperwork/retitling of assets to be done, and altho i'm not to benefit, it needs to be done, for the safeguarding of her assets and home. i could be in an accident tomorrow - especially the way people eat/text/talk on cell phones while they drive, etc.

Yes, it is a painful recovery. But there is no way she'd have been able to "suffer it out" - her arm was visibly 2-3" below her collar bone. Part of her collar bone was replaced with plastic.

With the pain, the meds, the rehab -- her appetite deteriorated: it takes 2 aides to get her in/out of bed. i'm proud of her though - despite the blisters on her heels, she's starting to use a walker! She just needs to start bending that stiff elbow. By the way, check with your insurance: Medicare covers the first 20 days, after that it depends on the terms of coverage from any "MediGap" policy or the likes that you might have, if there's a need for outpatient rehab. Other choice would be home care, IF your DH is the type to actually DO the exercises, but could you tend to him while he needed showering, using the bathroom, getting him up/down stairs, or in/out of bed, if he cannot get up himself? i had to modify blouses for Mom - tank top and cut the shoulder strap so that it's tied with ribbons. He won't be able to raise his arm, nor abduct.

Sorry to be long winded - feel free to write me if i can help please. Blessings ~ crickett

GardenArtist Sep 2015
Blannie, thanks. That's quite a bill, and a major step toward monitoring and deterring abuse of controlled substances. But I don't think it binds Tara to that particular doctor. However, there may not be that many pain management clinics.

tarajane Sep 2015
Controlled Substance Agreement stating that you will Only get your meds filled from the doctor named above. (somehow the sentence wasn't finished, I just finished for all of you cause it didn't make sense).

tarajane Sep 2015
Yes, the pain clinic could dismiss him. They call it the Casper agreement here in KY. I am filling out the registration packet for the ortho doc and there is a Controlled Substance Agreement stating that you will ONLY from the doctor named above. If the meds are not tolerated well we have to return the unused meds to the office. Lost or stolen rx will NOT be refilled. Yes, we can find another pain management clinic if we chose to but this one is about the only highly rated one and he has been going for a number of years. Not easy to find another pain management clinic. Yes, all his specialists will have to concur. He would not pull the bandages off or anything unless the anesthesia made his Dementia worse. Being a man I don't think he would follow up with the rehab. I hope I answered everyone's questions. Yes, it is very complicated. Thanks everyone.

gladimhere Sep 2015
Tara, another post of yours you were concerned about the guns in the house and locked them up. Is this at all still a problkem with him wanting them back? The anesthesia could cause a severe decline further into his dementia. Will he go to rehab if he has this surgery done? I would make sure that happens! You may find that following the surgery you are unable to provide for his care any longer. The best place to come to that realization is in rehab. The social workers there will help locate an appropriate place for him if you cannot or will not provide his care any longer. Following surgery who knows what might happen. Be prepared for whatever may come.

blannie Sep 2015
Here's info about the Kasper Agreement legislation in KY:

http://migration.kentucky.gov/newsroom/ag/fewerpillmills.htm

But I see nothing mentioned about patients having to sign an agreement or remain at one facility. I think Tarajane's hubby's doc may be taking it a step further.

Sunnygirl1 Sep 2015
There are lots of helpful posts here. I would also be concerned about the post surgery period. Is your husband able to cooperate with instructions? Will he pull on bandages and stitches? Will he allow the arm to rest for healing? Will he be able to focus on rehab? I know that when my cousin, a dementia patient, had fractures, she refused to keep a wrap on her hand. She would forget why it was there and take it off. She would not wear a Jerusalem brace when she fractured her spine. She couldn't appreciate how things worked to help her heal and get better. Just something to consider before a big surgery.

GardenArtist Sep 2015
Tara, I'm not familiar with the Casper agreement, googled it but none of the hits related to any kind of "pill shopping" issue. I have an uncomfortable feeling about what this might be about though.

Does this agreement prevent you from seeking treatment from any other physician for pain management? I can understand if the underlying goal is to prevent someone from seeing multiple doctors to get scripts for controlled substances, as I know that definitely can be a problem with some folks.

But if the agreement binds you not to see any other pain management specialist, I would be really concerned that this is a restrictive and anti-competitive agreement, even if it is mandated by your insurance carrier. I would think you still would have choice of physicians who accept your insurance plan.

You wrote that "they" would dismiss your husband if you failed to honor the agreement. Who's "they"? The pain management practice? Your insurance carrier?

Given your husband's risk factors, the decision to operate may also be a function of pre-surgery exams. The cardiologist and renal doctors would likely have to concur that he's a candidate for surgery. Has the ortho surgeon who proposed the surgery advised you to get these additional consults before the decision is made for surgery?

cwillie Sep 2015
TaraJ, I'm thinking that the orthopedic surgeon would not want to go ahead with surgery on someone who has as many complications as your husband. If you feel his pain clinic is not as helpful as they should be it may be time to meet with them and re assess his treatment plan. If you would rather go to a different clinic I'm sure there are ways to transfer, but there is probably a lot of red tape involved.

tarajane Sep 2015
Ron has had surgery on both rotator cuffs and one did not take so he had to have a second surgery on that a second time. I will look into tens units. He has been seeing a pain management specialist for all these years, the same one. We signed the Casper agreement not to go anywhere else for pain management "pill shopping" or they will dismiss him. I really don't think he will follow up with the rehab part and I am scared about the anesthesia. He has had a quad bypass and a pacemaker and 3 stents. Did I mention kidney disease from all the heart caths ? But the heart caths alone are not responsible for his kidney disease. I really wouldn't make this up. Now he has more arterial blockage but his kidneys cannot take another heart cath with the dye they use. So he has blockage, area unknown. Thanks to all once again.

GardenArtist Sep 2015
TENS is an excellent method for decreasing pain. Ultrasound helps as well. Has he had any specific PT for his shoulder condition? It might also be like a rotator cuff injury - sometimes the PT can help, but only surgery can effect a long term cure.

Besides the suggestions for other questions to ask, that would be an important one. How much of the pain will be cured? Can he expect full range of motion afterwards? How long will the rehab period be?

tarajane Sep 2015
Thank you. I will have to write these down as right now my memory is short LOL

blannie Sep 2015
The thing to remember about surgeons is that they want to operate. That's how they make their money. So I'd get the scoop from the surgeon but also try to get a medical consult from someone you trust who will give you the full picture of how things would go for your husband and whether surgery makes sense, given his dementia and age. Will he be able to even do the necessary rehab?

Anesthesia is tough on anyone who's older. Your husband isn't that old, but with dementia, I would believe the anesthesia will hasten his decline. Check out things like pain patches (lidoderm), which are expensive, but can work pretty well. Or has he tried TENS unit? Has he ever been to a pain management specialist? I'd research every other pain management option before I'd go the surgery route, if it was me. Good luck, it's not an easy decision either way!

MaggieMarshall Sep 2015
I'd have the surgery. Intractable pain is a terrible thing. As he might need stronger and stronger meds to manage, these take a toll. Some of the side effects of stronger meds make it harder for a caretaker to manage...clouding an already cloudy mind...dizziness and muscle weakness making falls more likely...constipation.

Things I personally would like to know would include likelihood of success, length of rehabilitation, whether the doctor is willing to prescribe home support and for how long...his opinion on the effects of the anesthetic...I'd also ask him what other things would he tell a family member in your position. Sometimes we just don't know the questions to ask.

I wish you smoother sailing.

tarajane Sep 2015
Reverse is placing the ball of the shoulder towards the chest and the socket where the ball was. Not many surgeons do this. He has been on pain meds for 6 years due to a broken ankle, severe arthritis, when he was a child he had Perthe's Disease where the ball and socket did not fit smoothly. He had to lay in traction for months while his hips adjusted. They told him he would be in a wheel chair by 40......Ha Ha he's not and he worked when he was younger 20's and 30's and 40's tending tobacco, milking cows, working at the stockyards when he would be hit by the gates and the cattle and had to jump gates. Don't know why I went in to all of this but this is why he is on pain meds. He has been on them so long it no longer takes care of his shoulder pain. Not sure what to do. Will have to decide after the ortho consult.

Windyridge Sep 2015
Not sure what reverse shoulder replacement is but sounds like a serious procedure. I'm 60 and have had rotator cuff surgery on both shoulders in 2 years. Very long rehab, lots of pain for a couple of weeks requiring strong meds.

Has does he handle the current level of pain meds? My Mom was a mess on oxycodone, falling and sleeping all day. Finally got her dosage way down and she's much better.

My Dad had hernia surgery at 83, was in very early stage of dementia and it seemed to me that the anesthesia affected him long term. He seemed to have a dramatic drop in short term memory. Could have been a coincidence but I'm not sure.

I think you have to carefully weight the benefits of this surgery against the risks. My Mom had hip replacement at 83, I was very concerned going into it but she is doing so much better now. But it was a long and difficult trip for her.

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