Thursday, September 10, 2009

Silver Ring Splints

Hey, everyone! I hope you had a great holiday weekend! I certainly did - it was my birthday! 28! We went canoeing, just a short trip around the water in the park by our place. I didn't do much paddling, but I sure did have fun. I even took my pup, Meeko! So many beautiful birds, the water was perfect, the temperature was great. It was a nice relaxing hour. (Since I don't get out much, this was welcomed! I had some problems with the POTS and the back pain was off the charts, but I am so glad I forced myself to do it!) We wrapped the evening up with homemade pizza and some friends. I even got to have a vegan, gluten-free, nightshade-free pizza - it was SO good, really!! I have posted pictures below.


Second order of business: Social Security Disability. I GOT APPROVED!!!! :) For the disability and SSI claims! A judge backing me up!? That feels so good! I will be doing a long post on all of this soon, but I just wanted to let you all know! Hooray!!!

Third: Silver Ring Splints!


(Video: My Silver Ring Splints)


As you can see, the ring splints are a blessing! They really have helped my hand pain and I love them. They do have a few downfalls, and I think it is important to do your homework before getting them - to really understand what they are and how they work - since they are SO expensive.

As for the insurance questions, I wanted to post info on how I got my insurance company (the one I had at the time) to cover the cost of the splints. There are two things you will battle when trying this. First, the companies that make silver rings splints don't deal with insurance. They won't take it, won't try to work with you. They simply don't accept insurance. Secondly, the ring splints are not typically covered by insurance companies anyway. You have to prove to your insurance company that you absolutely need the ring splints and that you have exhausted all other resources first. They usually want you to try plastic 'oval 8' splints first. If you are like me, these are an okay substitute (and all kids will need, since their fingers will outgrow the silver ones - and with the cost you don't want to pay for these more than once!) - they do help a little, but they also cut my skin often and never fit well enough to stay on and do their job. So, how do you get around all of this? Here is how I did it (I am not telling you to do anything, nor I am telling you to break laws. What I did wasn't illegal. I don't condone or promote illegal acts.):

  • Step 1. These are prescription splints. That means you must have a doctor write you a script. So, get yourself to the orthopedic doctor, hand therapist, etc. First, I went to the orthopedic surgeon that deals with my upper joints (like shoulders and wrists). He said he wouldn't write me a prescription, that I didn't need the splints. Really, I think he didn't know what they were. He is really nice, but deals more with sports injuries than connective tissue disorders. So, he sent me along to the hand therapist (they work together diagnosing and treating, same office). My hand therapist took one look at my fingers hyperextending/subluxing and got out the oval 8 splints. I was sized and wore those for a few months (the plastic ones). They cut my fingers and were uncomfy, but I wore them to prove to her and myself that they helped. She also made me a horribly hideous thumb splint out of a Play-Doh like material (that was heated and hardened) and it fastened to my hand with velcro. This kept my thumb in place. Once she saw they were helping me, she agreed to do the sizing for the silver ring splints. She talked to my orthopedist and he had to write the prescription for 20 ring splints (I needed them for every joint on all of my fingers). Then, she had to order the sizing kit from the company. This kit does cost the doctor money and sometimes they can be hesitant about things like this. In addition, you will need copies of ALL of this paperwork: your prescription, your sizing charts, etc. - save these for step 3.

  • Step 2. Next on the agenda: Finding an 'orthotics and prosthetics company' to be the 'middle-man.' This is where things get tricky - but also the part that saves you the money. You have to do research. This will take time and effort on your part. You have to locate a company that works with (or is willing to work with) the silver ring splint company and your insurance company. They will be doing this for either a small fee or out of the goodness of their hearts, as they won't be getting much from you. Find O&P companies. Call them and ask to speak to a supervisor (this is a big help!). Ask if they have ever ordered anything from Silver Ring Splint Company (or company of your choice), or if they would be able to. (They have to be able to bill the correct codes, and most companies you speak with won't be able to do this.) If no one in your area is able to help, contact bigger companies. If no one is able to help you at those, branch out. Call small companies in other states. Big companies nationwide. Keep calling and calling until you find someone. Explain to them that they will act as a middle man. Tell them about your EDS and the problems you are having. This took me two years - to track down someone that would be willing and able to do this. It is work on their part that they aren't getting paid for, essentially, and so it will take a person who is caring enough to want to help - they are out there. One EDSer I know was able to find this person/company in a month. One a little longer. Me, two years. But - unless you have $5,000 laying around for rings, it is the best bet! There is a diagram below to refer to, if you need help explaining this circle to the O&P company. NOTE: you must find a company that works with your insurance. To get a listing of possible companies, contact your insurance and ask them for the names and numbers of providers in your coverage plan for Orthotics and Prosthetics.


  • Step 3. Get that paperwork from step 1 and send it to the O&P company. They will send it on to the Silver Ring Splint Company. The Silver Ring Splint Company will bill your O&P. Your O&P will bill your insurance. Your insurance will pay your O&P. Your O&P will pay Silver Ring Splint Company. Silver Ring Splint Company will mail your rings to the O&P. They O&P will mail the rings to you. Confused yet?! :)

  • Step 4. Try your rings on. Make sure they fit. They need to be snug. If your hands get cold, and your fingers shrink, you don't want your rings falling off (trust me, I have had several slip off already this way and officially have lost one). Try them on carefully. If you so much as scratch it, you can't return or exchange it. Make sure you are SUPER happy with the fit. If not, you need to go back to your hand therapist/ortho and have them re-size you. Then, you have to go back through the process with the O&P. Sounds trying, and it is, but it is worth it if you want your rings. The last thing about aesthetics I wanted to add: they do tarnish rather easily. They also may turn your skin colors. My fingers were green under the splints for a while, then black, then it went away. The rings are very tarnished now. I clean them occasionally, but the company recommends taking them off to shower, etc. I need them for things like that, so I never take mine off, I just deal with ugly colored rings! (The only ones I don't wear all the time are the large thumb ones.)

  • Step 5. Enjoy! :)

Silver Ring Splint Company is who I went through. I like their rings. The large thumb one with the bracelet is fairly new and wasn't in the catalog, but it was on a flier they sent with the catalog.

SILVER RING SPLINT COMPANY
Cindy Garris, Owner
Phone: 800-311-7028 or 434-971-4052
P.O. Box 2856
Charlottesville, VA 22902-2856, USA
Fax: 888-456-8828
Email:
cindy@silverringsplint.com


DigiSplint - Canada
(This company lost a copyright infringment suit filed by Silver Ring Splint in 2008 for web design, just an interesting tidbit!)

Murphy Ring Splints - can't buy directly from them, they use distributors.

P.S. I get SO many compliments on the metal all over my hands! People think they are just crazy jewelry - and most people LOVE them! I take that opportunity to explain that they are medical and why I wear them. I figure, 'what the heck, more awareness, right?'.....


Homemade rice crust pizza dough with homemade
pesto, squash and onions from the farmer's market! Yummy!

I love my Meeko!

xo
dani

33 comments:

alice said...

glad you sorted the disability out, you deserve it.

your little sweet dog. maybe getting one soon.xx

Achelois said...

Brilliant positive news about the disability funds, about time too methinks! If one replaced the words MS rather than EDS I am absolutely sure these things would not be such a struggle. Say EDS, rare genetic connective tissue disorder & it seems ridculous obstacles which should not occur happen trying to claim anything at all! I adore your little pooch. We have a lovely staffie (smaller over here I think than in the US) but would love one like yours. The thumb ring splint looks like something that would help me out greatly, unfortunately here in the UK they seem more difficult to source. Your birthday looked relaxing and fun. Belated Happy Birthday from a UK fellow bendy.

Breast Reduction said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Niki said...

Hello Danielle. I found your videos on youtube and followed them here. I also have videos on EDS on youtube. I have type 3. I'll keep checking in on the blog! Take care.

Julie said...

I just found your blog after googling "Ehler Danlos vitamin d" in the hope of finding information on supplements which could help my niece who has Ehler Danlos. I've read your story and I admire your courage and persistence very much, also your willingness to share info about your life in case it could help others. You also seem like a fun and nice person! I notice you haven't posted in the last couple months and wonder how you are? How has your weaning off medication and diet change/supplement program been going?

The Girl from the Ghetto said...

I found and then lost your blog months ago. Just refound you via Achelois. I see you haven't blogged in awhile and I wonder if you are doing ok.

Mayo Clinic "suspects" that I have ED, too, but I'm not sure what type. Although, I have new vision loss and I am now going to see a doc at U-M who is a Optical Neurologist so I'm hoping he isn't going to tell me I have the Vascular type, yikes!

Enjoy your blog, and hope to read more of your posts soon.

Jeff and Jenn said...

:) Silly Girl from the Ghetto, I wouldn't go around saying I had ED. :) I hope you don't have the Vascular type, as well.
Danielle, I just found your blog and I really like it. I have been fighting my insurance company and doctors all week to try and get started on the process of getting these splints and it is not going to be easy. This post was very informative. I do have a question about the spacing- I had heard that the ones that are spaced farther apart make it so that you can't straighten your fingers all the way. Is that true? I want the ones farther apart but I also have such severe OCD that I'm pretty sure I would be twitching all the time if I couldn't straighten them! If you have a minute to let me know, I would really appreciate it.
Thanks for everything you've shared on your blog. It makes me sad that other people have to go through this horrible constant pain.... but at the same time I'm glad I'm not alone. I wouldn't wish it on anyone, though. Thanks and I'll keep reading!
Jenn

Jeff and Jenn said...

This comment is just so I can click the email me when more comments are added option. :)

Jeff and Jenn said...

I went to my hand therapist today and pushed really hard for the Silver Ring Splints. They were quite hesitant, because, of course, nobody in the office has ever heard of EDS. But she finally agreed and "pre-fit" my fingers, provided that I send her information on the disorder and give her a week to research it to be sure it's right. I sent her your video while I was at it. She said she wanted to talk to a therapist that's actually fit splints for an EDS patient so she didn't get the wrong ones. I'm going to call around (again) tomorrow... but maybe if you have the number of your hand therapist could you email it to me? If you don't have time I totally understand. Either way, your video has helped me know what to ask for... because it's kind of the blind leading the blind over here. Thanks!

Jeff and Jenn said...

Well they ordered the splints today so hopefully they're right! :) My hand lady loved your video. She posted links to it on their therapy blog. :)

Jill said...

I was diagnosed with EDS about 5 years ago, and recently added the dysautonomia to the mix. It is so inspiring to see someone doing so much research and living so well!

Sweet Disorder Photography and Design said...

Hi, Danielle! I keeping thinking about you and hoping you're ok since you haven't posted in so long. The things I have read in your blog are inspiring me to start one of my own since doctors and people don't know about this! I got my splints and LOVE them. Love love love. One lady said she thought I just got fancy jewelry so I could wave my hands around and sing, "all the single ladies!" :) Now I'm finding a wheelchair. I've been being pushed around the house in a rolling office chair which is seriously ridiculous. Anyway, sorry I'm babbling, but I hope that you're ok. I'm thinking of you.

Jeff and Jenn said...

That last one was from me on my old profile. Whoops.

Anonymous said...

I am an OT working with someone that has EDS for ring splints. Your blog was by far the most informative thing I've come across to order her the correct types. Could you tell me exactly what type you got? The swan neck type with extra strength? It would help us a lot! Thanks so much, I will also direct her to your site as well!

annette2 said...

a custom made splint from Digisplint and I find it somewhat more delicate and more comfortable than my Silver Ring Splints are.
Luckily for me they are covered by my insurance the same way regular splints are, as long as I have a prescription
Annette

Vegan Danielle Davis said...

@Alice - thanks! Yes, it is so nice to have the SSD now! My dog is amazing! (Did you end up getting one?) I find he really helps brighten my day when the EDS and POTS is too much!

Vegan Danielle Davis said...

@Achelois - Thank you so much for the bday wishes (a long time ago! Sorry so delayed!) and for the nice words. I haven't seen anything as far as thumb splints like mine in the UK, but if I do I will post a comment to let you know!! :D Have a lovely week!

Vegan Danielle Davis said...

@Breast Reduction - THANK YOU!! I appreciate you very much. I hope you are still enjoying it, now that I have started posting again. Sorry about the delay! :) Have a great weekend! xo

Vegan Danielle Davis said...

@Niki - thank you so much for following! I hope that the videos are of help, and the blog posts as well! Bendy hugs! :)

Vegan Danielle Davis said...

@Julie - Hi! Great that you found the blog, hopefully there is info on here that is helpful to you! I appreciate your kindness. :) I have taken a few months off of posting, but happily, I am back at it! Things were tough for a while, but I am feeling better now. Please keep reading, and post your comments too! I would love to hear from you! xoxo

Vegan Danielle Davis said...

@Jeff & Jenn - thanks for your comments! So sorry it has taken so long for me to get back with a response! As for the ring splints, I have heard both. Some people I know can't wear them at all. Any of the splints drive them crazy. I had to take a break wearing mine in the winter months (my fingers get too cold and shrink, so the splints fall right off), but now that spring is here, I am wearing them again. They are annoying to get used to again! But, I don't find that any of mine restrict my fingers from straightening out - just that I have to put on or two on at a time, get used to them, and keep adding a couple at a time until my hands can handle them all at once. :) Hope that helps! I see you did order your splints and have been wearing them for a while! I would love to hear how you like them after wearing them a few months. Also, thanks for showing the video to your therapist. I wish I would have had a tool like that to use when I was originally going thru this - maybe it will help her size someone in the future too! :) Hope you are well! xo

Vegan Danielle Davis said...

@Jill - thanks for the nice comments! I hope the blog provides you, in the least, somewhere to see that you are not alone! Gentle and warm hugs! xo

Vegan Danielle Davis said...

@Anonymous with regard to what splints I got: I have the swan neck for most of my fingers, the boutonniere for my thumbs, and the bracelet thumb combo for my thumb/wrist. All of these are from Silver Ring Splint company in Virginia, USA. There are no photos of the bracelet one (from what I have seen on their website), but I do have video of it on this post. Hope that helps! Good luck!

Katlyn Constance said...

This information on the Silver Ring Splints has helped me so much, and will most likely help me a lot in the future as i proceed to attempt getting silver ring splints. I'm 16, and also have Ehlers Danlos Syndrome, Hypermobility Type.
Because you said that your rings are tarnished, and don't polish much, i thought i'd share a tip with you for clearing the tarnish in a simple/easy method.


-water
-salt
-an aluminum plate (you can substitute aluminum foil)
-water softener powder (you can substitute baking soda).

Procedure:
Take an aluminum plate (or a regular plate covered with a piece of foil).
Add 1 tablespoon of salt & 1 tablespoon of water softener powder (or baking soda).
Then pour some hot (but not boiling) water onto the plate.
Stir to dissolve the powders.
Now you can dunk your silver in the solution.
How long do you need to keep your silver in the solution? The results may be immediate, or they may take a few minutes. However, if an item is very tarnished, this cleaning method will not make your jewelry perfectly clean and looking like new. Additional polishing will still be needed.



Thank you for your helpful advice!!!
-Katlyn Constance

Anonymous said...

I'm 15, and I'm a near-professional cellist. I had been having pain in all my finger joints for a long time when I finally convinced my parents I needed to see a doctor. I was perscribed countless anti-inflammatories, given tape to try to keep my fingers in place, and given exercises to strengthen the muscles in my fingers. The anti-inflammatoris made me gain weight, left me tired, and didn't do anything for my fingers. The taping was expensive, a pain, and did not help. And the exercises just made the pain worse. I saw a rheumatologist, and countless hand specialists, and when none could diagnose me, I pretty much lost all hope that I'd ever play my cello again. My doctor said that even though I probably had Ehlers-Danlos, he couldn't definitively diagnose it. I went home and found information online, I was devastated at how debilatating this can be and how much it would affect a 15 year old's life. When my doctor told me that the last option before surgery was silver ring splints, I was skeptical. I thought about how much they'd restrict my activities as a 15 year-old who just wanted to play the cello and hang out with friends. But he told me that if I didn't do something about the swan neck deformity, I'd do permanent damage to my hands. So I agreed to try them. I got my first three and hated them at first. They got in the way, but THEY HELPED. They were the first thing that had really helped my fingers to stop hurting. I was amazed. Now I have five splints: four on my fingering hand, and one on my bow hand. they have made my life so much easier. I definitely recommend them to EVERYONE with swan neck deformity. Now, as much as it is hard to live life as a teen with Ehlers-Danlos, I get through it. Stay strong, and you can overcome the debilitating effects. :)

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Eli said...

Hey,

I've been wanting these Siris silver ring splints for years, and today I finally got my first four. I'm twenty-five and've got Ehlers-Danlos type III, hypermobility and back when I first started my occupational therapy in high I was given the Murphy ring splints. I hated 'em. They were huge, bulky, and big enough to be used as brass knuckles. I'm an artist, and I couldn't hold a bloody thing correctly with them. Ended up just flat not using them just so I could do my artwork. That lasted a few years but thankfully today I got my Siris. I love them. I can actually work in them!

And I think it's great that you have this page up. The information on how to work with the companies, doctors and such is brilliant. Fortunately my occupational therapists actually dealt with the company for me and got me my splints within a few weeks. I'm still missing the two for my thumbs but hopefully I'll get them within the next month.

tl;dr: blog is awesome, and so are you. <3

Eli said...

(gah, high school. i fails at typings.)

Mattheous said...

Danielle,

A little less than a year ago I picked up a set of silver ring splints for my pointer and middle fingers on both hands--since then, my pain has nearly vanished. But I've noticed the ones on my right hand have started to cut into my skin--my fingers (the ones that had the splints on them) looked red, irritated, and ready to bleed--so I ended up taking them off. I was wondering, is that a common issue with silver ring splints? I had a good fit--but I AM right handed, so that may have something to do with it...

Right now, I have my splints just sitting on my the top of my bureau...Any ideas or input?

annette2 said...

You could get some resting splints like they use for RA and wear them at night. That would keep your fingers in a good position and give them a chance to recover from the stress of the silver rings when you try to hyperextend your fingers all through the day

A

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