Bilateral FS, considering surgery
Posted , 9 users are following.
New to the group, hi everyone! My first symptoms started last October, and both shoulders were involved within a couple weeks. I blamed arthritis since it was both sides, although my shoulders had always been very flexible and pain-free before. Finally I figured out it was frozen shoulder (I'm a nurse, and like to research), and started trying to do some gentle PT on my own. That made things worse, so I went to the ortho doc. He agreed it was FS, gave me steroid injections, and sent me to real PT. I was into the second stage by that point, and the shots gave me less than 2 days of relief.
PT was underwhelming too. In the past 4 months I've seen absolutely no change, and if I push harder my ROM actually decreases while the pain increases. Keep in mind that BOTH shoulders are almost equally impaired, so really, everything I do amounts to "therapy", often too aggressive. My doctor talked about arthroscopic release surgery soon if things don't improve. At first I thought no way, but I'm starting to reconsider. This is really wearing me down; I haven't slept well in months and everything I do feels like a struggle.
What do you experienced people recommend? Can anyone tell me more about what you can and can't do with your arm in the days and weeks after the procedure? Do you think both shoulders could be done at the same time? If not, how soon do you think the first shoulder could be functional enough to become the "dominant" one? I know lots of post-op PT is a must, and I'd be happy to do it and put up with pain if I could just see some results. FWIW, I'm a 53-year-old female, not diabetic, otherwise in good health.
1 like, 11 replies
hope4cure jackieblue
Posted
everyone is different with frozen shoulder. both mine are in the same shape. PT and lots of rest has been helpful. above all else no lifting. i was in a study for xiaplex injection which helped one shoulder that was trapped with fibrous tissue on the cords and scar tissue. its is not yet approved for shoulders but for scarring and dupuytrens . i had many other injections for shoulder never helped much. you might check with your doctor about studies for frozen shoulder, thats how i was admitted into the study for xiaplex.
Hoosier hope4cure
Posted
Wow, Hope4cure -- I've been following your posts for a while, and I thought you left the group. With my first FS in 2014, I just missed the cut off by days for the Xiaflex/Xiaplex study.For this current FS, I figured Xiaflex would have been approved by now, but lo, the company, Endo Medical, has decided it's more economical to treat cellulite and dupuytrens than FS. Sigh.
But are the claims really true? The adhesions broke within 3 days? No migration of the collagenase to other parts that weakened the joint?
sandra38592 jackieblue
Posted
Recovery for me was really hard. Pain was really really bad for about 4 weeks after surgery, pain meds were useless. PT was very painful but a must. I think it took about 3 months to feel good. 2 months before I could safely drive. It took about 6 months for me to 90% pain free. I had surgery Feb 2018, it was well worth everything I had to go through. I couldn't stand the frozen pain. No way could I have done both shoulders at once, I am surprised that is even and option. There is no question that I made the right move with my shoulder but as you know everyone is different. I wish you well.
cindy_45475 jackieblue
Posted
wow that sounds like a mighty big procedure. I am a 51 year old female and I have had FS in both shoulders; one after the other. All I can say (as a survivor) is it Will get better on its own; FS has to go through its stages, they cannot be altered; sped up or slowed. both shoulders took 12 months from freezing; frozen to thawing stage. I obviously cannot comment on the surgery; to be honest i wouldn't have been brave enough to take it as an option.
what stage are you in ? have you frozen yet?
I found the things that helped were; heat pad (life saver); TENS machine; turmeric capsules and magnesium. I know everyone is different and everyone has their own stories; successes and opinions.
But if it takes in the region of 6 months to recover from an operation; the condition itself could of passed naturally in that time with no risks involved??.
Las_Vegas jackieblue
Posted
awe im the same dont know whether to have surgery or not , i had first frozen left shoulder 2 years ago and now my right shoulder has started about 6 weeks ago , i havent t slept proper in weeks and am in so much pain , i am a hairdresser and find it so pain full to work , last shoulder took full 1-5 year to be pain free so i dont think i can cope again its getting me down so much , any advice on op would be appreciated
jackieblue
Posted
Thanks everyone for your insight and good wishes! Las Vegas, it must be awful to have been through this once and now be facing it all over again. Hope, that's a good suggestion about seeking out some trials for new treatment options.
I should clarify that I don’t actually know whether doing both sides at once is even a possibility. I haven’t discussed it with my doctor yet. He says he is suggesting surgery this early because I am so impaired, what with having both arms affected. Cindy, you asked what stage I am in – – I’ve been in the second stage since at least the beginning of February. The pain is far less than it was initially, but it is still a problem, especially at night. My stomach can no longer tolerate the pain medicine, end it wasn’t really doing that much good anyway. There has been absolutely no change in my range of motion or pain level for the past three months.
Sandra, and any other surgery veterans, please tell me more about what to expect after the procedure. Do you have full range of motion right away, even with the pain? Are you given restrictions about how much you can lift? Is your arm less “useful“ right after the surgery than before? If so, how long does that last? If you were in my position, with both shoulders equally frozen, which one do you think should get the surgery first?
sandra38592 jackieblue
Posted
The doctor said I had full range of motion when he did the MUA and removed scar tissue. I was under and had no idea. I had a nerve block also, so that helped with the pain the first 36 hours. When I came home I had a special motorized chair that moved my arm a little further every day, I sat in it for about 5 hours every day, it moved my arm the whole time I sat in it, at first it was just a very small movement, the range increased a little every day. You have to move the arm or it will freeze again. The pain was so bad I had to use my hand on my good arm to move my bad arm, that lasted for about a week, slowly I got more range of motion and less pain, doctor thought he was going to have to do the MUA again( I think my heart skipped a few beats when he said that LOL) but slowly the range returned and there was less pain. The doctor said I was the worst case he has seen in his 15 years of practice. He also said it would go way on it's own but I was looking at at least 3 years. I started PT less than 12 hours after surgery, they were very gentle, but at the time the nerve block was still working. Don't plan on showering or doing your hair, on your own for about a week. I had surgery Feb 2018, was able to golf July 2018. PT 3 times a week after surgery for 3 months, plus I did it every day at home. I don't know if anyone else had this problem but I was black and blue all over my arm and my breast from them forcing my arm, that didn't hurt just looked horrible. It was a hard recovery but I will do it again if my other arm freezes and they recommend surgery. I wish you well, I understand it is a hard decision. Hope this helps and doesn't scare you to much.
catriona03298 jackieblue
Posted
Hi Jackie,
My story is as follows: Oct. 2018 start of pain and even with PT it still became full blown frozen shoulder. In Dec. my doctor injected it but i got zero relief. In Jan. 2019 i went to a surgeon and he did an MUA plus key hole two weeks later. The soreness afterwards was nothing compared to the original pain. I had PT twice weekly and followed a home plan of exercises.
On my six week follow up with my surgeon i still had limited movement so he injected it and this worked to some extent. My PT feels that i am gaining range of movement but it is slow. If i am not happy after six months i can have the surgery and MUA again.
I don't regret having surgery as it took away the terrible pain. I still have some pain and discomfort but i can cope with it, i think it will take time.
I was off the road for two weeks but i know i could have driven after a week .Best wishes and i hope this will help you decide.
maureen83743 jackieblue
Posted
hello Jackie, sorry to hear about your FS ....it's the most painful debilitating thing you can get I am on my second one with along with a rotator cuff tear which I am now awaiting second operation. I would definitely not recommend having both shoulders done together it would be too much it takes a few weeks to get your arm functioning properly followed by few months physio to get it working again, however. you would need to discuss with your consultant...... I wouldn't do it ? I had operation in 2017 and was so upset that it has happened again: sleepless nights, can't lift anything, can't bathe properly, can't drive, cant function properly its endless but the worse thing is the pain it's unbearable.... I wish you lots of luck in your decision and to get well soon
m.44051 jackieblue
Posted
Hi Jackie,
I can't speak directly to the surgery question, although I'm starting to wonder about it, but I'm in a similar situation. My symptoms started last September and by October I was in the constant severe pain stage and rapidly losing my motion. I'm a PT, and knew what was happening, but thought I would just buckle up and try to power through. I finally had to stop working late November and after a month of rest the pain started to improve. In hindsight, I wonder if I made it worse by trying to keep up with work and pretend that nothing was wrong. I now have minimal motion (only about 10 degrees external rotation, at about 45-60 degrees lifting arm in front or to side), but the pain is much improved unless I try to stretch it. But it's not a functional arm - I can't do my hair, can't put on socks with that arm, can't tie shoes, etc. My other shoulder started showing symptoms in February and is now starting to lose motion.
I've also found that if I leave it alone (no range of motion exercises), try to rest, but use it gently as able during the day, it feels better (sometimes pain-free) and seems to get a little more motion (but only a few degrees). Then I get excited and think it's starting to thaw, and the PT in me kicks in and I gently start to do range of motion and a couple days later the pain is back and constant, and it feels stiffer again.
I'm worried that if my second shoulder gets as bad as the first, I won't be able to wash my hair or get dressed.
I'm starting to agree with those in some of the other threads who said that once they stopped trying to do exercise/PT and just rest it, it healed after few months. I've also read a bunch of research, and it just doesn't provide a clear answer in terms of what treatment is best. I've noticed some reports of surgery, but then a year of PT - what would have happened if they just wait a year? Are you in the UK? I see that there is a large study on adhesive capsulitis wrapping up in June this year where they are comparing the outcomes of exercise/PT, with MUA, and MUA/capsular release - hope it gets published soon.
Are you still working? I wonder if you were able to rest, if your pain would improve a bit? Have you tried sleeping on your back with a bath towel just a little bit under your arm so it is supported a bit, maybe with your hand resting on stomach? That helped me a bit in the beginning.
jackieblue
Posted
Sandra, Catriona, and Maureen, thank you so much for sharing your experiences with surgery – – that’s the kind of information I’ve been trying to find! Most information on the web tells you all about the procedure itself, but not what it’s like to experience it. Maybe more people would run away if they read these stories first, LOL! Personally, I am leaning toward going through with it, probably on my dominant arm first. The prolonged debility and disability with no improvement is so frustrating that I would be willing to put up with the pain just to make some progress.
m.44051, I was so excited to read your post! Obviously, it’s terrible that you’re having to go through this, and now with the second arm getting involved also -- awful! But your physical responses to activity and rest sound exactly like mine. And the fact that you are a physical therapist really adds weight to your impressions. i’m telling everyone I know about your post, in part because I worry that on some level people have not believed me when I said that exercise and physical therapy were making me feel worse. Thanks for the validation!