Complete Reverse Shoulder Replacement in side/ lymphedema

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Complete Reverse Shoulder Replacement in side/ lymphedema

Postby Pamela » Sat Feb 06, 2016 5:42 pm

Hi, it's been years since I posted here. Not expecting to hear a response since this message board doesn't seem active any more, but I will give it a try anyway. I am having a complete reverse shoulder replacement on my left shoulder at the end of the month. It is the same side I had breast cancer, removal of 24 lymph nodes resulting in lymphedema, 13 years ago.

I had my right shoulder replaced 6 years ago and it didn't affect my lymphedema at all, but this time it is a concern. I have read on this site where others had their hips replaced and did well. The point was raised that non use or limited use of a limb is not good for lymphedema either. That is my reason for my surgery, my rotator cuff is so badly torn that I can no longer reach out or to the side. I can only move slightly forward and bend at my elbow.

I know I am taking a risk, a risk of increasing the swelling, of infection of even losing my arm, but I can't live the way I am either. I drive very little, to work and short errands because I know the roads, allow plenty of time to get where I am going and plan every move. Because of the impact on my driving I don't feel I can safely drive further. Surgery will allow me to move my arm again, giving me normal control over the steering wheel.

I don't know if anyone on this board has ever had experience having a surgery on their shoulder of a lymphedema arm, but I hope to let you all know how it goes for me in the hope of helping others. I am 63, they tell me I am young to have this surgery, not having had an accident. I have a genetic issue with my tendons. I don't wear garments, my lymphedema seemed very stable without them and one of the reasons I stopped wearing them was because of that.

Any comments are welcome. This is a wonderful site and I am thankful for what I have learned in the past and hope to learn in the future.
Pamela
 
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Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Pamela » Tue Mar 01, 2016 3:41 am

I had my surgery last Wednesday, almost 6 days ago. So far so good, but I now know why the surgeon wasn't worried about my lymphedema, it was because it wasn't his problem! It's mine, and since I haven't seen a lymphedema therapist in years, I'm on my own.

At least I had an awesome anesthiologist who talked me out of having a block and just having the general anesthesia. He said the nerve block would greatly irritate the nerves in the arm and cause swelling. I have some swelling but so far it's not bad. Honestly I felt better without the block too! I had a block and general anesthesia with my right shoulder replacement and looking back I wish I didn't have it then either!

The surgery was uneventful, but I was in a specialty hospital and it was clear the morning after surgery that I was just a number.....a room number! They couldn't wait to get rid of me and I was home less than 19 hours after surgery. It's been rough at home , but I survived! It is so ironic how compassionate everyone is before a surgery and how abandoned one feels afterwards! No one from the hospital called me for over 2 days after I came home.

I was showered with concern and medical support beforehand but afterwards no one is there. Calling the nurse for help was a joke! They have no clue what lymphedema is. I gave up trying to get answers to my questions and just lied and thanked them for their help while thinking that I'm too tired to try to educate someone on lymphedema.

Sadly the place I went for surgery is all about the money! They were more concerned that the HD went out on my TV rather than how I was feeling! They gave me a "gift bag" with a shirt, chap stick, water bottles, all with Hospital logos and a thank you card with the signature of everyone who treated me. It didn't impress me at all! In fact I found it annoying! I felt like saying, " you kicked me out without ever talking to me about how I was feeling and you think these things are going to make up for it?" I won't recommend that specialty hospital to anyone unless they are having an out patient surgery! I know I will never go back there, at least now both my shoulders are done!

As for the lymphedema, I will keep updating on here. My advice to anyone facing a surgery like mine, skip the block for surgery and have your own lymphedema therapy plan not affiliated with your surgeon, and a therapist scheduled to see you after surgery.~ Later~
Pamela
 
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Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Pamela » Tue Mar 08, 2016 6:34 pm

I will try this again, my last post got an error message, ugh.

I do apologize for the negative feelings in my last post. I was feeling afraid, not well and abandoned. I still feel my hospital stay was not great, but my surgeon and surgical team was excellent!

My lymphedema never got a lot worse! It is slightly larger, but I am hopeful my blouses will still fit. I will let you know.

I saw my doctor today and no more sling! Wooohooo!!! I feel free again! I still have many weeks of home therapy ahead, but I am hopeful it will make this surgery totally worth it!

My goal is to be able to totally dress myself, (my husband has been helping me with my tops), start practicing to drive in about 3 weeks, and regaining my former arm function. Right now I am no worse off, so any improvement is a plus! I know it takes time, but I feel very positive about it.

Hopefully this time my post will not be rejected. I used another device before. Of course this is a much shorter version, I am tired of typing, but the gist is there. Good wishes to all who deal with lymphedema!
Pamela
 
Posts: 11
Joined: Sun Jul 27, 2008 11:37 am

Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Pamela » Thu Mar 10, 2016 6:55 am

I am not writing on here any more. It feels just like the real world, no one cares, no one comments. I hate this condition and I wish I never had one single lymph node removed from my body. If I had to do it all over again, knowing what I know now, I would have refused to have them take out nodes. It never made a difference in my treatment. Honestly, breast cancer for me was no big deal, but this lymphedema has ruined me. I am not the person I was, I am deformed, and the medical community doesn't care.

There are no doctors to help. NONE! only therapists who only want to wrap my limb and make me look even more like a freak show.

I will get through this the way I have gotten through most things in my life, by myself!

I know no one read what I had to say so I never helped anyone here. All I can say is if you are reading this and you have lymphedema, my sympathies, I totally understand. I will hate doctors forever for what they did to me. They didn't save my life, my cancer was too small that even doing sentinel node didn't work. I could simply have had my cancer removed and be far better off than I am now!
Pamela
 
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Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Pamela » Sun Apr 17, 2016 4:43 pm

I am going to eat my own words, I am back. Anyone going through major surgery knows that it is very often a long mental roller coaster ride. I came back because I left so abruptly, and so negatively. I see by the number of posts that people do indeed read what I wrote. It is because of those people that I am writing this.

I am going into my 8th post-surgical week with the complete reverse shoulder replacement. I set my goal to get back to work 6 weeks after surgery. My biggest hurdle was driving. I practiced at week 5, just around the neighborhood, and it was difficult. It isn't my dominate arm so I did better than when I had my other shoulder replaced. The lymphedema didn't get a lot worse, but it did get worse after surgery. It feels like added weight trying to do anything with that arm. It mostly increased in size from my elbow to my wrist, but the upper arm feels a mixture of swollen and numb. The numbness is due from having the lymph nodes removed years ago. It is a weird sensation. I kept up my pulley exercises and practiced driving and every day got a little easier. Where I live, one must drive everywhere, so it was a big deal when I got the ability to drive again!

I went back to work 6 1/2 weeks after surgery and feel so much better physically and mentally! I feel as if I am getting my life back.

Again, my recommendation for anyone having surgery on limb affected with lymphedema, set up a plan with a therapist before surgery, DON'T HAVE A BLOCK on the limb, make sure they wrap the limb (I am assuming they wrapped my arm after the surgery, but I don't know exactly when they did it because I was under anesthesia). Also, have someone at home to help after the surgery! I attribute my good outcome as far as the lymphedema is concerned, to the great anesthesiologist I had! He saved me a lot of pain and kept my lymphedema from getting horribly worse! My surgeon was equally great as was the whole surgical team!

I am on my way back to normal and it feels great! Best wishes for anyone reading this who faces a similar surgery!
Pamela
 
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Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Brad » Thu Jun 02, 2016 11:23 am

Pamela,

I am so glad to hear you are doing well!

Thank you for sharing your experiences and feelings. I cannot speak for Pat, only as I believe he would. That said, you must always be your own best advocate. Learn all you can, ask questions, and don't accept answers you don't believe. Share your feelings, you need not experience this alone. Pat left this site behind to assist others, and your participation is greatly valued. His hope was always that the knowledge and experiences shared here could bring a measure of relief to others. Thank you again for sharing in Pats vision.


-Brad
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Brad
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Re: Complete Reverse Shoulder Replacement in side/ lymphedem

Postby Pamela » Thu Feb 16, 2017 8:44 pm

Thank you Brad! Things haven't been going all that well with my shoulder and arm. I have had several issues since my surgery. My surgeon just ordered an MRI of my humerus because I have periods of muscle pain similar to what I had before my full tears in my rotator cuff. The MRI proved to be a waste of time, compromised by the implant, degrading the image quality. According to the report my shoulder/humerus/surrounding muscles are normal, so normal that " No subcutaneous edema or fluid collection identified!" Really, no edema in an arm twice the size of the right arm from the removal of 24 lymph nodes? Now I'm almost doubting that I have lymphedema, maybe I just have a super fat arm? Shouldn't the lymphedema show up on an MRI? Does anyone know?

I don't plan to go back to see my orthopedic surgeon again unless I break or dislocate my arm, maybe not even then. If that happened I would probably go to the ER at my local hospital. My family doctor told me that after the post surgical follow up appointments, any follow ups benefit the doctors and research more than the patient, and there isn't any reason to have them unless there is a problem.

So I am moving on, ignoring the pain, which is sporadic and not severe enough to take any medication. (Apparently I have a high tolerance for pain.) I'm still glad I had the surgery, but I find it frustrating when I know something is wrong but can't prove it to the doctors.

I wish this forum was active again. I miss getting feedback from people who understand what it's like to have lymphedema.
Pamela
 
Posts: 11
Joined: Sun Jul 27, 2008 11:37 am


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