Little Victories!!!!

NatsFan

I haven't been on this thread for a while but wanted to share a little victory!

I was dx with right upper quadrant LE 8 years ago, but with use of compression garments, night sleeves, weight training (building up very slowly) and self-paying for a monthly full body MLD massage sessions, I've been able to push it back to the point where it flares only if I get careless about precautions. Based on the strategies I've developed over the last 8 years I'm able to resolve those flares pretty quickly with consistent management.

However, 18 months ago, I developed bursitis in the shoulder on the affected side (of course). X-rays showed I have a malformed bone in my shoulder that hits the bursa when I raise my arm, causing the bursitis. I also have a small rotator cuff tear, which doesn't help matters. In addition to the pain, the bursitis seemed to cause LE flares. In an effort to avoid surgery, I went ahead and got a cortisone shot which gave me relief for about 9 months. The second shot only gave relief for about 6 months, and after getting a second opinion, both surgeons agreed that surgery was the best alternative to get relief. Surgery is scheduled for tomorrow.

I discussed my LE with my surgeon, and he wrote an order for me to see the LET located in the hospital's PT department. I met with her last week to come up with pre-op strategies to get my LE controlled as much as I can before surgery. We discussed post-surgery strategies, and I asked if there was anything that could be done immediately after surgery, such as wrapping me before I even left the hospital. The LET said no one had ever asked about this before, but instead of blowing me off, she pursued it and spoke to the surgeon. Based on their discussion, he agreed to write an order that would actually permit the LET into the recovery room to wrap me immediately after surgery. Talk about little victories!!!!!!!! The surgeon is head of surgery at that hospital, so I especially appreciated his effort to try something new. With luck this might lead to increased coordination between surgeons and LET at that hospital when a LE patient is faced with surgery on the affected side.

When I was first dx 8 years ago, few in the medical profession took LE seriously - back then I had to really advocate for myself not to have procedures on the affected arm, and I know that so many others on this thread were doing the same thing. Maybe because LE patients have learned to advocate for themselves and others, LE is now on the medical profession's radar as a real issue that needs to be considered when treating an affected patient.

Of course, my post-op arrangements are all tentative now - we'll see what actually happens tomorrow. I'll report in and let you all know what happens - but it may not be for a week or so after surgery.

purple32

" He agreed to write an order that would actually permit the LET into the recovery room to wrap me immediately after surgery. Talk about little victories!!!!!!!! The surgeon is head of surgery at that hospital, so I especially appreciated his effort to try something new. With luck this might lead to increased coordination between surgeons and LET at that hospital when a LE patient is faced with surgery on the affected side."

Wow!
That seems so positive. I hope and pray the pro active approach keeps you from getting a flare.

I have to ask, did you allow then to inject the cortisone on the arm with the LE?

Good luck with you surgery - pls keep us posted!

Binney4

Natsfan, brava! Keeping you in my thoughts tomorrow, and looking forward with you to smooth sailing through both the surgery and the recovery.

Gentle hugs,
Binney

NatsFan

Thanks everyone for the encouragement. As we all know too well, surgery is no fun so your encouragement and good thoughts are most welcome.

Binney - so good to see you again, O Mighty LE Warrior!

Amapola - good point on the night sleeve. I'd arranged with the LET that I'd bring my wrapping, my night sleeve, and my compression sleeve/gauntlet tomorrow. If for some reason wrapping won't work (such as not fitting in the sling or otherwise turns out to be medically inadvisable) she can put on the night sleeve as an alternative. And if that doesn't work, she can put in the compression sleeve and gauntlet, but that's the last resort since those cannot be left on as long while I'm inactive. While I could put any of these on when I get home, I'd rather have it done immediately to prevent swelling ASAP, and also while I'm still somewhat under the influence of surgical anesthesia. We both agreed that it would be less painful for her to do this immediately in recovery, rather than trying to have my wonderful but untrained DH do it a few hours later after the anesthesia has worn off.

Yes, Purple, I did permit the cortisone injections in the affected side. At that time the bursa was chronically inflamed, which seemed to lead to more swelling. After the cortisone shot took effect and the inflammation lessened, so did the swelling. As with so much with LE, it was a no-win situation, so after weighing the pros and cons, I decided that I'd take the chance that the benefits of the cortisone would outweigh the risks. In my case, it worked.

tsoebbin

Thanks so much for sharing! Great news for all of us!

Kicks

I've had 4 steriod injections in my LE side shoulder for a small rotator cuff tear. So far the injections have worked great with no problems. The tear is very small and the Drs agree that as long as the injections every 6 months are 'working' its best to stay away from surgery (I agree - don't want any surgery unless absolutely necessary). An injection every 6 months that is working is a lot better as far as I am concerned than surgery as there are never any 'guarantees' of less or more issues post surgery.

A few years ago I did a 'good job' on my LE wrist that required surgery. My LET Guy was in the OR to wrap me.

hugz4u

Natsfan. Awesome to hear from you and awesome news. If you feel up to check in every so often we miss you! Nice to hear your managing le well !

vlnrph

Yes, nats! Delegate someone to type your follow-up report to us if you can...

NatsFan

Using voice typing on iPad and thought I'd give an update while I'm awake for a few minutes between painkiller doses. All went as planned. LET came to recovery right after surgery and wrapped me. Of course any kind of movement was painful but she was as gentle as possible. When she was done the doctor authorized me to have another dose of fentanyl to help reduce the additional pain unavoidably caused by the wrapping manipulation which I really really appreciated. All in all it seemed that the doctors and recovery staff were completely on board to make sure the wrapping got done and making sure the additional pain from the procedure was alleviated.

Once I'm up and about I do plan to write a letter to the hospital administration complementing everyone on working so hard to make this happen for me. Now that the prece is set hopefully patients in the future can benefit.

hugz4u

Great. Do you mind if we start the ball rolling and when we go for surgery we can show your posts? Or if there is another way to prove it can be done. Yeah we're so proud of you for advocating your rights!

glennie19

YAY, Natsfan! This is excellent news. Wishing you a speedy recovery.

NatsFan

Hugz-please feel free to share if you think it will help. I think the trick was getting my surgeon to get me into the hospital's PT dept so I could see the LET there for a presurgical evaland consult. On surgery day, all the LET had to do is walk down the hall from the rehab wing to the surgery wing.

I think the wrapping really helped. I stayed wrapped 24/7 for the first 4 days after surgery (with DH doing a daily rewrap). That kept the swelling down to the point where I can fit back into my Tribute night sleeve and vest, which I've been wearing since. There's still swelling of course, but my guess is that it's a lot less than it would have been and I'll have a lot less ground to make back up.

I'm at that annoying point in recovery where I'm feeling better, but still hurt too much to do a whole lot about it. But I am progressing. I have my post op follow up Friday so we'll see what the surgeon says.

Binney4

Mary, brava! Really, really well done! And hooray for the PT and surgeon both--may they continue to work together in harmony for the benefit of every "swell" sister who passes through their doors! You done GOOD!

Chocolate all around!
Binney