[ncpatches]

#1059104

Went for my post-op appt yesterday, after my shoulder surgery. Discussed my concern about my arm pain, i.e. no pain in the surgical area but very painful from mid-bicep all the way into my hand. Doesn’t make sense to me, not to him either. He had 2 xrays done of the bone between the shoulder and elbow, the humerus, I think its called (?), said it looked fine except I was more osteo than he would like for my age and asked about a bone density scan, which I had a year ago and was fine. This was 6 mo prior to my grave’s diagnosis. I’m wondering if just a few months of HYPER could cause a bone loss that they would notice. I know my pcp put me on Vit D a couple years ago, because I was low, according to bloodwork, but I never remember to take them, but wouldn’t calcium be a good idea now, if I’m having some bone loss? Bone loss being an issue with grave’s, has anyone else dealt with this and what did you do about it? I understand, getting your ‘numbers’ normal for an extended period of time will improve your bone density, help you to regain some, but isn’t there something that we can do to help, while waiting on these elusive ‘numbers’? All this being said, I still got no answer about the pain issue, but he did ask if I needed a ‘refill’, go figure! This is the first time I have even thought about my graves ‘dragon’ since the surgery, was more concerned with the shoulder/pain/healing.
Is anyone else frustrated with the lack of knowledge, about grave’s, from the medical community and the general public? Seems like it’s somewhat rare, but then, until my diagnosis, I had never heard of it either. There is a strong need for general awareness of this disease, anyone know a way to help get the word out, or what is being done that we can contribute to?
Thanks all! HUGZ!

[Bobbi]

#1172173

There are two types of bone cells — cells that build bone, and cells that remove bone. We are adding deposits to our “bone bank” until we get to our twenties or so, at which time, our bone mass starts to diminish. We can try to slow things down with weight bearing exercise, and a proper diet (which includes the proper levels of Vitamin D to enhance calcium absorption), but we cannot eliminate it. It is a part of the aging process, in reality. For whatever reason, while we are hyperthyroid, the cells that remove bone are stimulated more than the cells that build bone, so we lose bone mass while we are hyperthyroid. Taking steroids, like prednisone, also leads to bone loss, and many of us take steroids for eye issues, pretibial myxedema etc.

As to why the bone loss did not show up on the bone scan. They don’t typically do a full skeletal scan. They look at one or two areas (hips, heels in my case for some reason) where bone breakage can be more life-threatening. (Breaking a hip is often a precursor to complications that can lead to death, for instance.) Breaking an arm isn’t likely to be as big of a problem. And we lose bone from different parts of our bodies at different rates.

We live in an age of specialization. There are doctors in my area that “do” only hands. I don’t expect them to understand Graves. It would be nice if they did, but they typically don’t. There just are not that many folks who get Graves.

[ncpatches]

#1172174

Getting old is sooo highly overrated! thankx Bobbi

[adenure]

#1172175

Just wanted to say hi & I hope you start to feel better soon. You’re a strong lady- keep at it! I’m trying to be strong right now, but I’m all over the place emotionally. Just wanted to let you that I’m still thinking about you & your situation.

Alexis

[ncpatches]

#1172176

Thanks Alexis and hang in there, you’ll make it!
I was ‘out and about’ Saturday w/dil, walking around downtown. I live in a historic area, with small antique shops and such and met a lady that had shoulder surgery 6 weeks ago and is having the same issue with the weird pain. Her Dr called it something she can’t remember, but it’s a nerve issue because of the surgery. I guess it will go away, but at least I’m NOT crazy! You would think my Ortho would know, but he has no idea why, go figure. I find that the TENS unit helps it for a couple hours, I’ve been using it several times a day, guess all will work out in time.
I can’t tell you how much I appreciate the feedback, hugs to all, keep us posted Alexis.

[adenure]

#1172177

TENS unit! I used that on my lower back during my 3rd labor! It did help with the back contractions!

Alexis

[gatorgirly]

#1172178

Did the woman you met mention (reflex sympathetic dystrophy syndrome)? I was “diagnosed” with this after my knee surgery several years ago. Basically there was no reason for me to be having pain long after healing and completing physical therapy. The surgeon suggested a nerve block, which at 20, I wasn’t willing to do, so I sucked it up and eventually the pain dissipated over time. I’m not telling you to suck it up, but ask about RSD or CRPS, or whatever they are calling it these days.

[ncpatches]

#1172179

gatorgirly wrote:

Did the woman you met mention (reflex sympathetic dystrophy syndrome)? I was “diagnosed” with this after my knee surgery several years ago. Basically there was no reason for me to be having pain long after healing and completing physical therapy. The surgeon suggested a nerve block, which at 20, I wasn’t willing to do, so I sucked it up and eventually the pain dissipated over time. I’m not telling you to suck it up, but ask about RSD or CRPS, or whatever they are calling it these days.

HOLY COW! I sure hope that isn’t what this is, I got enough on my plate. The lady said ‘regional’ something, said she couldn’t remember the rest. aww geez

[gatorgirly]

#1172180

I’m sorry, I didn’t mean to scare you. I was surprised by the symptoms listed there, but mine was as minor as unexplained pain at my surgery site and a small area around the site. I just figured it was worth mentioning to your surgeon.

[ncpatches]

#1172181

It’s a possibility, but my surgical site is almost painless. The pain I have, is from bicep to below the wrist, which makes no sense, since it was the shoulder/rotator cuff that was operated on. I plan a long conversation with my physical therapist on the 14th, (when I start therapy) I want to know what is causing it and what will be done about it. Yeah, I’m buggin’, but I will get answers. I already ask the Ortho, at my post-op appt a few days ago, and he hasn’t a clue, he took xrays and offered me a refill on my pain meds. I’m sure it’s a nerve issue, but I’m hoping it will go away.
I do appreciate the info ‘gatorgirly’, it gives me a place to start.
HUGZ!

[snelsen]

#1172182

RSD is something that is quite disturbing to read about, think about or have.
i think you realize that this is not a syndrome you or anyone else will consider with you, but I would hate to have you use any energy thinking about it. It is very rare, with no treatment and intractable pain.
Shirley

Nerves do get pushed and bumped during surgery sometimes. I hope the “tincture of time” plus careful PT and medical attention will make this a non issue for you!
Shirley

[NLBatten]

#1172183

Rotator cuff takes a VERY long time to recover from. It is very likely just some nerves being compressed due to swelling from the shoulder. I had all kinds of random pain with my RTC repair – and sometimes down in my hand. I found ice and anti-inflammatories helped. Once you get in to PT, they can do some manual stretches that may help. Are you sure it is ok to use TENS machine yet? I know it is different with every patient, but if you weren’t given that by your dr or a PT, I would consider calling and ask PT before you use it again.

Also, once I had my RAI, I found a lot of my shoulder pain went away. I know that seems strange but I think I had a lot of muscle and joint pain from being hyperthyroid and that was 18 months after my shoulder surgery. You have to be very patient with RTC. Most ortho will tell you it is a full 6 months for arthroscopic repair and 1 year for open repair to be fully healed and I have often heard tales of it taking up to 2 years to get full recovery. You are only a couple of weeks out, so pain is to be expected – even if in an odd place. (Oddly I actually had leg pain after one of my open shoulder repairs. Best we could figure is 1) how I was sleeping and holding / carrying myself and 2) compression on a nerve that ran through my neck near my shoulder incision.) Be patient with yourself and still be diligent about exercises and ice.

[ncpatches]

#1172184

yeah Shirley, the whole idea is scarey, I’m inclined to believe its a nerve issue from the surgery and will get better with time.

NLBatten, the tens unit was attached, under the polar cuff, when I came home from the surgery, actually removed it 2 days later and it pulled off some skin (the patches) I was too out of it, for it to dawn on me, how sensitive my skin is and I should have never had it on that long, I know better!

I’m keeping my fingers crossed that the pain will go away in time, but I don’t see any possible way for me to go back to work in 3 weeks, not as much as it hurts. Would be different maybe if I was at a desk, but I’m a retail supervisor. hugz ya’ll!

[Author]

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