Total shoulder replacement has been recommended - advice from other patients?

Hi Shirley,

I have also been diagnosed with degenerative OA of the right shoulder, and my symptoms are high pain 24/7 and loss of ROM. It's hard for me to sleep, also. I'm sorry you are in such pain.  It would help if a doctor who specializes in shoulders  could run some diagnostics (imaging) to identify if your have OA of the shoulder and if so, how far advanced it is. It's helpful to know exactly the cause of pain, and that's the only way to know how to treat it.  Advanced OA in the shoulder can cause nerve pain and damage - not irreversible though.

Thank you Holly, good luck with your shoulder.

Hi Jason,

Thanks for sharing your experience. Your symptoms sound very similar to mine. Would you happen to know if your surgeon spared your rotator cuff or did you already have damage or a tear? Finding a surgeon seems to biggest challenge for this complex surgery. There may be better surgeons in UK than where I live. Would you mind giving me updates on how you are doing WRT range of motion, pain (if any) and strength? I'm curious to know if you will be able to use your shoulder in the same or better capacity because the surgery.  

Hi holly , I did not have tears in my rotator cuff, but they do cut threw to access joint, I was told if I had tears they might do a reverse shoulder replacement , I would find the best surgeon and go from there. I am in Washington state and found university of Washington med center, even though there 5 hours from me all the homework pointed me to them. Good luck finding a qualified dr, I’ll keep you updated on my progress , Best of luck

This is amazing! It's quite a coincidence that from all my research into the best surgeons and hospitals in the US, I have also found the Univ of Washington! The other hospital was NYU Langone in Manhattan.  In fact, I have considered making an appointment at U of Washington, but I'm not sure which surgeon to see. I will have a much longer trip up to WA as I live in TX, but it may be worth it to travel out of state. The reason I have asked about sparing the RC is I have met 2 shoulder replacement patients who underwent the surgery without cutting into any of the 4 muscles that comprise the RC and their recovery time was extremely short. One of the patients was operated on by a surgeon in a private practice near Gig Harbor, WA, and he went back to skiing after 8 weeks. That was 10 years ago and he's a couple of years older than me.  He still skis an and is an avid golfer. The other patient is a female about 10 years younger than me and had a double TSR - one 2 years ago, and the other last year. She is now pain free and enjoying all the physical activities she did before she developed degenerative OA in both shoulders. Her surgeon was at Langone and spared her intact RC.

The technique on sparing the cuff may have to do with the individual patient's anatomy and what kind of device the surgeon uses. The surgeon I was initially considering in Austin performs the traditional surgery like you have had but he assured me I will regain my strength and be able to use the "new" joint to a better extent than the damaged joint, and I won't have to give up any of the athletic activities I was involved in prior to my injury.  

Would you mind sharing the name of the surgeon who performed your TSR? If you don't feel comfortable giving names here, please email me at

Thanks so much for giving the updates and hoping that you have a speedy recovery. 

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

HI holly,I really wish I could have spared the rc ,it is most definitely quite a long recovery as I finding out,I am a 45 year old man worked construction all my life ,and was told that I would have to slow down when its healed up,i am fine with that, but he said I could go back to the pastime I enjoy archery shooting ,which uses your shoulder quite a bit,I could not e mail you .it would not let me.but I don't mind letting you know who my dr. is ,his name is Winston warme, I have been impressed with how I have been treated ,he has been up front and to the point with me during this journey.I have been having some good and bad days with recovery.monday I have my 6 week post op meeting with him,im hoping I am ready to start rebuilding process.I think it would be worth looking in to uwmc.I was even told going into surgery they would evaluate and work on any repairs thought to be needed ,and I agreed with them.good luck holly!

Thanks - I'll look up this Dr. He sounds like he's a very good surgeon. I remember speaking to one of their P.A.'s and I thought the said one of the surgeons there was able to spare the cuff, but I didn't take notes on that conversation. There is another surgeon in Gig Harbor who I know performs TSR that way. His name is Dr. Arroyo. 

I hope you will soon be able to go back to the activities you like to do and the p.t. goes well. It may take a longer time, but it'll be worth it. I'm hoping to have found a surgeon and schedule a TSR in spring as I can't tolerate cold weather and even though it's fairly mild in San Marcos, my p.t. will be much more comfortable during summer. I'm not sure why they took down my email on this site.  If you can get into my profile, it should be there. 

I feel very strongly that since there are so very few shoulder replacement patients, we should as a group, find ways to affectively communicate on forums like this one or otherwise. Some information on doctors and hospitals probably should not be stated in writing, but if patients could speak privately about matters that could make or break the success of our surgeries, it would be most beneficial. I'm trying to start a shoulder arthroplasty site on FB, and when that is up and running I'll let you know.

Hello Dawiz,

I hope your recovery is going well. I have not checked out the Steadman Clinic. It would not be as far away for me to travel as Washington State. Would you mind saying which dr performed your surgery, and I could send him my diagnostics and records?

Thanks,

Holly

De Millett

Thanks Dawiz,

HI Dawiz,

Did Dr. Millett perform a conventional TSR, meaning did he cut through any of the rc muscles and use an anterior approach or was he able to spare them? Last month, my sister in law in Houston spoke highly of Steadman and knew folks who had gone there for surgery, but it didn't appear from their website that there was a surgeon on staff who only specialized only in shoulders.

I am happy to hear there is one and that you have had a very good outcome. Best wishes for hoping that you continue to improve. I will call Steadman and see if I would be able to speak with his PA to get more info. Thanks so much for sharing your experience.  

Holly

Hi Rita,

I haven't been on this forum for a while, but I'll be glad to share what I've learned. That said, there are many other folks who have much more knowledge in this area than I do. I have been researching TSRs(TSAs) and alternatives treatments (including bogus "stem cells" or so-called regenerative medicine) since I was first given this surgery as my only option for degenerative arthritis. My unfortunate condition has been the cause of excruciating pain and disabiity in my right shoulder joint subsequent to a failed labral "repair" in 2014.

The only surgeon I was aware of that performed successful TSR's with spare the cuff technique at Langone was the head of orthopedic surgery dept, but he is now retired (I don't have the name but can get it) ,and I wasn't convinced by his replacement that he was at the same competence level. I'm sure that new head of dept is experienced and good, but I am not familiar with any patients that were treated by him. 

It would be worth checking out the HSS in NYC as I have personally talked to a patient who had a double TSR there in her 70's with a very good outcome. The surgeon's name is Taylor.  I have also been informed that all of the ortho shoulder surgeons at HSS are able to spare the cuff if possible.

On another note, my cousin just had a TSR in Orlando which is logistically easier for me to travel to and she is doing very well. Her case was extremely complicated after an traumatic accident that separated her glenoid bone into fragments and necessitated a reverse replacement. The surgeon who operated on her personally called me, and we spoke about sparing the cuff which he does. He claimed that most shoulder orthos do both anatomical (spare the cuff) and reverse replacement depending on the quality of the cuff tissue. He explained that if the cuff is in quality shape, then it can be spared. If not, he will perform a reverse,which my cousin had. She no longer has any pain after 2 months and began PT yesterday. Frankly, I was blown away that a surgeon would take the time to call me and answer questions, as I am out of state and the answers to certain question would determine whether or not I would travel to Orlando. 

Would you mind sharing what your diagnosis is? 

I would like to share with you a couple of ideas regarding the TSR & not knowing your diagnosis, I'm hoping they will still help: 

1.The first is TSR's have a short lifespan compared to other replacement joints averaging 15 years - could be shorter or longer.  Also, not many surgeons specialize only in shoulders and if you had a TSR that 's what you would want - a surgeon who operates on only shoulders and several/week. The short longevity or prosthetic and my desired activity levels post surgery could still be a deal breaker for me at age 62.

 

2. The second is a treatment I have just recently discovered in the last 3 weeks that has helped my pain tremendously and ROM. Let me say first off it is NOT "stem cells" or PRP. I am putting stem cells in quotations because these "cells" (amniotic, adipose, or bone marrow), if that's what they even are, because they are not not living by the time they are injected into a patient & are usually mixed with steroids and others chemicals. Sometimes the doctors who give these injections claim they have "growth factors'" which I have yet for just one of them to explain what they are. The reason US surgeons are injecting dead stem cells is that they are not allowed by the FDA to store them for more than 24 hours and then disposed of, so there is no way they can be kept alive in a petri dish and cultured for platform injection. These p.i.'s have been successful with just a handful of surgeons who are in countries and working primarily on knees. The other treatment that I have heard mentioned these days is muscle strengthening which will not even begin to address pain caused from loss of cartilage, which is a major part of the "support system" of a joint. When bone rubs on bone and spurs form, tremendous pain can result even though there are instances where arthritis does exist and patients do not experience pain - but that it not the norm. 

The treatment I have discovered is miraculously helpful while bringing pain levels down so low and ROM improvement that I am reconsidering not going through with the surgery. It is truly nothing short of a miracle.

If you would like to contact me personally about this please go to my profile page where my email and phone # should be listed. Feel free to contact me either way, anytime.

Best regards,

Holly

I am curious about the information that you have shared in regard ti your TSR research. I have researched the rotator sparring TSR and had decided that this was a more viable option versus the standard TSR that cuts the cuff for access ti the joint for replacement. As you know there are few orthos in the US that do the rotator cuff sparring replacements.

I am curious as to what other treatment you mentioned in your last post that you had found pain and ROM benefits from. I have been diagnosed as needing replacement and really would like to avoid either surgical choice if possible. I have tried PT, stem cell injection, steroid injections and dry needling for the pain. My range of motion is severely impacted as well.

Thanks