My friend just had one of these implanted 3 weeks ago. She has RSD. She was really happy to be approved to get this after bing in pain for a long time, but now that it is in, she is worrying about a few things. She has questions about what it is really like to live with one of these, but everything she finds on the internet is usually coming from people that are experiencing problems. Does anyone know of a support group? Even an individual that has been living with one that she can talk to would be great. She is just struggling with the fact that there is a foreign object in her body now. Since she just had this 3 weeks ago, she knows that a lot of her pain right now is just from the surgery and will go away, but since she is not moving around too much yet, her mind has lots of time to wander and worry! Her doctor had told her that she is doing great and is right where she is supposed to be in recovery, but she just needs to talk to someone who has been there and there is no one that we know that has one. I figured I would try here for her.

TIA

What she has is RSD. It is Reflex Sympathetic Dystrophy. It is mainly causing pain in her knee. She developed it after she had a knee injury. Thanks for the website recommendation. I will check it out and see if it would apply to her.

I have had R.S.D. for 10 years and it is bacically alot of pain. even to have blankets on you sometimes is painful. I have it in my right arm and shoulder. It is caused from trama after surgery or broken bone. I got mine from having shoulder surgery, wrist surgery and breaking my right arm all with-in a months time. I am on a patch for pain and still have a hard time dailey with the pain. I have not heard of this surgery and would like to hear more. They wanted to shoot linocane into my neck and I just couldn`t do it.

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When you don`t know what to do-Walk fast and look worried.

I have heard of an oxygen treatment were you are put into an oxygen type tank but not what you are talking about. Would love to hear more about it.

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When you don`t know what to do-Walk fast and look worried.

Carrie: thanks for the tip of the other name. I will definately pass all the info on to her. She is getting relief! Praise the Lord. She actually took a walk around her neighborhood today. She only stopped because her back hurt from where they implanted the device. She said her knee was actually doing great, so It seems to be working just fine. She is feeling some sensation in her chest when it is up high, but they think they can adjust that for her. A lot of the questions she has are about emotional things that she is trying to get a handle on.

njfl: she got her RSD in a very similar way. She injured her knee during physical therapy to correct her kneecap that wouldn't track properly. Then after a few surgeries and different treatments, the RSD developed. She has the same thing about the blankets and even pants on her knee drove her crazy.

From what I know, this is a device that is implanted with lead wires to your spine. It send an electric stimulation to the specific area that is affected because of where the wires are placed on the spine. There is a small device that is put in your back/hip area to control the level. You can adjust the level by a remote you have on the outside. They are using these for a lot of different pain problems in the body. Many years ago I saw Jerry Lewis on a talk show. He had one and said it is the only way he is able to walk today. He had pain from all of his prat falls over the years.
Her doctor told her she would never walk again without the surgery. Her insurance took a while to approve the surgery, but they did! It was kind of surprising because they had cut her off from physical therapy because some doctor said there was no hope for her to get any better. This was an insurance doctor that never examined her! Her doctor was going to send her to a specialist at the Marshfield clinic in WI, but he left and that specialist moved to the area and became her new doctor. He recommended this device right away. We are in the Appleton Wisconsin area.

njfl:
My friend told me to give you a website. The link is: Medtronic, the world leader in medical technology and pioneering therapies. (medtronic.com)This is the manufacturer of her neurostimulator. There are 3 companies, but this one is the largest.
She said that you can also do a google search for "RSD neurostimulator" and you will gets tons of info that way too.

I hope this helps you!!!

Thank you so much for the info. I`m so tired of people thinking this doesn`t exist.

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When you don`t know what to do-Walk fast and look worried.

njfl: I hope the info will help you. I just saw her today and she is doing pretty good. We even went to Penny's to use our $10 off $10 salon purchase coupons! It is awesome to see her walking without crutches when she was told before this she would never walk again! It is truly an answer to prayer!!! Now, she couldn't shop the store yet, but the salon is right by the door.
I just noticed you live in southern NH. My inlaws live in Hollis. We love it out there are are going to go again this fall.

It`s the most beautiful place in the fall. thats why I would never leave. You should see vermont in the fall. Hollis is not far from me. nancy

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When you don`t know what to do-Walk fast and look worried.