joint erosion - feel abandoned | Arthritis Information

Hi everybody, I have posted on this topic several times in regards to elbows specifically but I have yet to meet anyone who has suffered a major joint contracture (restricted of range of motion, freezing of joints, complete cartiledge destruction of any joint besides the knee)

Even when I went to the JRA website with people who have had the disease since early childhood, no one has mentioned having a complete joint destruction like I have suffered.

I was diagnosed with RA when I was 18 years old in august 2004. As of a month ago, I have learned that I have zero percent cartiledge in my right elbow and have suffered severe contractures (at 90 degrees, no flexion or extension) in both elbows. I almost cried with orthapaedic surgeon read my MRI report. Especially since the joint replacement is not an option. What do you do? Theres no answer at all for us? Isnt there a more durable joint replacement on the way!

This makes it extremely hard for me to sleep, wash, eat, brush teeth and etc. I know I am in the severe disease catagory but I am so disappointed and extremely sad that the doctors are not attentive to me at all.

Now my left elbow is contracting at a quick pace. If I lose function in this elbow, I will be nearly helpless. I cant believe I have just been abandoned to suffer like this and there is nothing they can do.

That's awful :( I'm wondering why your doc isn't trying you on new meds, or more meds or something. That sounds like your RA is out of control. Am I wrong?

Are they at least going to get you into occupational therapy if they are not going to do anything else medicine wise for you?

Unfortuantely medical science is not even with the rate the disease takes over our bodies. I really wish it was. There has to be braces or something they can do for you.

Okay, don't despair. I also had an ortho say that they could not do surgery for my problem. Since then two other orthos said, "No problem."

Also, look at these sites:

http://www.arc.org.uk/about_arth/booklets/6056/6056.htm

http://www.pamf.org/joints/procedures/elbow.html

http://www.allaboutarthritis.com/AllAboutArthritis/layoutTem plates/html/en/contentdisplay/document/condition/arthritis/c linicalArticle/Elbow_Replacement_Surgery.htm

There's lots more links if you just do a search on "elbow joint replacement."

Someone is going to help you. Get another opinion. You are not getting the right treatment. I hate when doctors do this because they don't realize how they destroy our lives.

I'm getting my shoulder surgery done after I was told nothing could be done, I failed PT and I had to quit doing my job on the computer. I get the new MRI w/contrast this time done on Monday and the surgery is scheduled for March 22nd. Of course, after the MRI, he might change my mind, but that's not the impression I got from him. I also just met one of his other patients who was recovering from shoulder surgery.

I'm finding that shopping around for a good ortho is essential. It seems that the ones with more experience have more faith in the possible. Find one of those.

I am sorry you've been treated this way. I know how crushing it feels. Please note that each of these sites mentions RA as the most common cause of elbow replacement. Why do doctors do these things?

Did the orthopedic surgeon have no suggestions at all for you?

How can the doctors abandon you when you are in that kind of pain and losing mobility at such a quick rate? Which doctors have you seen for this, besides the orthopedic surgeon? There has to be something they can do to help you!

I'm so very sorry that you are suffering like this. In today's world, when they are coming up with so many new things to treat RA and other diseases, it is just terrible that they would tell a young woman that they can't do anything to treat you. At the very least, you need to have something better for pain than your signature line says you are taking.

Please don't give up! If possible, go to another Ortho. doc, or whoever you think might help the most, and get a second opinion. Be sure to take the MRI results with you. Please keep us posted!

Gentle hugs and Blessings,

Nini

Wheres Joonie on this, maybe she has some input on this. I know she's had this almost her whole life so i wonder if she has expierenced this at some point.

JOONIE SPEAK UP, we all know your not shy

Karen

Did the surgeon say why you were not a candidate for a joint replacement? I
know they are not done as often as other joints, and I know it takes a very
qualified doctor, but I didn't realize there are certain conditions that do not
qualify. Can you explain what he told you were his reasons?

Look for an ortho who specializes in hands. They almost always specialize in wrists and elbows as well. It should make a real difference in your care.

The ortho you are seeing probably does not know how to do an elbow replacement even if he knows how to do knees and hips. My guess that is why it is not possible.

You just need to find the right surgeon. Go on a website for the mfg of elbow replacement hardware. With luck they will list surgeons in your area that know how to install their hardware.

my doctor (rheumatologist) is foreign, frank and older (sixties perhaps) to top that. i really have *just* realized that I probably need to move on. the lack of information and care has just been ridiculous.

i know how RA works and I know what meds are out there and etc, so I thought that was just enough to be in the know.. but this recent "shrugging of the shoulders" mentality has just had me absolutely furious.

The orthapaedic surgeons I have had were not hand specialists. I did hear of an option that had a 20 percent change of letting me touch my mouth. It required removing fascia from my arm and putting it in inside the joint as a substitute for cartiledge. The problem with this procedure is this fascia wears out VERY quickly and the whole joint capsule must be taken apart putting me at a high risk for loss of function OVER A TWENTY PERCENT CHANCE OF TOUCHING MY MOUTH!
absolutely disgustingly pathetic option

Thank you for those links I will check them out now.

Most of the reasearch into elbow joint problems is being done by hand surgeons. General orthos tend to deal with the soft tissue problems such as tendon problems.

where are you located maybe someone has a name for you

Im in Cincinnati Ohio

Are you near one of the teaching/research centers that has an RA specialty? There's a name for this, but I can't think of it as I'm not functiong too well tonight. Like Stanford in CA, but they're not the only ones. In my region it would be Birmingham.

Anwya, I keep reading that there is much better treatment for advanced cases, a better attitude for digging in and finding a way around bigger problems, a willingness to try new things, better access to experimental procedures or newer ways of thinking. If I get to the point I don't trust the locals to do all that needs to be done, I'm getting myself up to Birmingham. I did that for my heart and was glad I did.

Found this one: http://www.cincinnatisportsmed.com/csm/. I forgot about sports medicine. They are always having to deal with sports injuries, especially with kids. You might check that angle.

Also check out this: http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/fs /default.htm#ortho. It's children's hospital, but they still might be able to help you or send you to someone who can.

And call the University of Cincinnati, Department of Orthopaedic Surgery.

Hope you find someone soon.

What a small world Sophia!!! I am in Cincinnati. Go see Daniel Reilly or Peter Stern at Hand Surgery Specialists. a

http://handsurg.com/physicians/ourphysicians.html

Dr Reilly did both my elbows,and a shoulder and my thumb fusion.

to follow up on Deanna's notes.

The Dr to see at Cinci Sports medicine is Dr Hasan. He is very good but when I saw him I really felt like I was being rushed. Plus I decided on Dr Reilly because he actually looked at my entire arm not just my elbow.

Dr Stern is the Chairman for the Dept of Orthopedics for the UC Med School..he is an expert surgeon you also would not go wrong with him. Dr Stern is involved in research and he knows everyone who is anyone in the country involved in hand surgery.

Children's would send you to Hand Surgery Specialists for this kind of problem.

Who is your rheumatologist and who is your current ortho?

buckeye39091.3325694444 [QUOTE=sophistablack] my doctor (rheumatologist) is foreign, frank and
older (sixties perhaps) to top that. i really have *just* realized that I
probably need to move on. the lack of information and care has just been
ridiculous.i know how RA works and I know what meds are out there and
etc, so I thought that was just enough to be in the know.. but this recent
"shrugging of the shoulders" mentality has just had me absolutely
furious.The orthapaedic surgeons I have had were not hand specialists. I
did hear of an option that had a 20 percent change of letting me touch
my mouth. It required removing fascia from my arm and putting it in
inside the joint as a substitute for cartiledge. The problem with this
procedure is this fascia wears out VERY quickly and the whole joint
capsule must be taken apart putting me at a high risk for loss of function
OVER A TWENTY PERCENT CHANCE OF TOUCHING MY MOUTH!absolutely
disgustingly pathetic optionThank you for those links I will check them
out now.
[/QUOTE]

Sounds like it is time to do some doctor shopping. Out with the old, in
with the new. There has got to be another option out there. I work at an
orthopedic hospital but they only do hips and knees. So I have no
knowlege of this procedure. She certainly has more choices here in Cincinnati...

You are not alone, my right elbow is all messed up...I try not to think about it oo much, it is called denial I believe. When I broke my right wrist the ortho would not do surgery cause my bones are supposedly like dritwood....so hence.....I go with the flow. As far as an accident to my elbow, SH** happens. I am nearly 50 so I am not sure I want another surgery, I use a heating pad a lot and take my meds.

I am sure there is a surgeon out there somewhere that would /help you/care what happens to you.This is a dreaded diseases and it is so much more difficult when you do not have the much needed support.

You can deal with the pain on some of the days, but the rejection is difficult especially when they do not even want to try. Don't ever, ever give up...you are your only TRUE advocate.

I have doctor salem foad out in colerain avenue
wow- it is a small world!
Thanks
Good Luck. Your RA has progressed much further than mine but I feel the same fears as you. What ifs - we have to all look at Deanna as an example and never give up. You need a doctor that cares and says there has to be a way to fix this. Don't let these gloom and doom doctors get to you. There is better care out there. Good luck. I know someone with simalar situation. They took OmegaXL with great results. You can order free bottle, just pay for shipping. www.painfree4u.com
Hope this helps,
mectrade2@yahoo.com supplements have been a waste of my time, as I have found.

I went natural for my first year (supplements, and extreme dietary restriction) and lost valuable time (AND JOINT SPACE). I would not NOT NOT NOT suggest anyone to do this unless they have already started aggressive therapy and then tapered off of it with natural methods.

especially, if you do not know how aggressive your RA is. Trust me, I have paid for this at twenty one years old!
sophistablack39099.3004513889

Sophia,

are you interested in finding another rheumatologist. If so I'd be glad to suggest some names

Karen