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Intrathecal Drug Delivery System

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3 replies to this topic

#1 TJ903


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Posted 28 February 2007 - 04:04 AM

This is my first posting and hope I'm doing this correctly.

My pain doctor wants to place an intrathecal drug delivery system. All of a sudden I'm very nervous. Has anyone had this done? I was diagnosed on January 4, 2007 with Diffuse Scleroderma. I just had my Pulmonary tests (waiting for results) and have to wait for another month to see the Gastroenterologist.

I'm currently on a pain patch, with some fairly significant side affects. It has affected my overall pain, but I still have breakthrough pain. Is there anyone out there with experience in pain control.

#2 Shelley Ensz

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Posted 28 February 2007 - 04:58 AM

Hi TJ,

Welcome to Sclero Forums, we are happy to have you here.

Regarding pain control, as it happens, we aren't able to discuss the high-power pain meds here, due to the unfortunate prevalance of drug-seeking addicts on the Internet. They like to join boards like ours and seek out people who might have access to good drugs they can either buy, or burglarize <sigh>. That's a sorry situation, isn't it? sad.gif

If you are apprehensive about your pain control management, you may want to get a second opinion, perhaps from a scleroderma expert. Intrathecal drug delivery systems are implants that deliver measured doses of high-powered pain killers directly into the spinal cord.

See our Scleroderma Experts list for a specialist center. They can work with your local rheumatologist to help deliver the best and most up-to-the-minute care.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 janey


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Posted 28 February 2007 - 05:28 AM

Hey TJ,
Welcome to the forum! You did a great job with your first posting. I'm so sorry that you are joining us due to your recent diagnosis, but you've come to a great place. Lots of supportive people and great information.

Sorry to read that one of your major symptoms is pain. I don't know how much research you have already done, but I did find some information on one of ISN's sources (WebMD) about intrathecal drug delivery. I hope this provides some helpful information.

Having just been diagnosed, I'm sure you are lined up for a series of testing. You may get very tired of it all, but all of these tests are extremely important. They help to establish your baselines so that the doctors can chart your progress and catch developing symptoms fast. I see you've already had your PFT's. Please let us know the results when they come in.

Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Sweet


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Posted 28 February 2007 - 05:48 AM

Hi TJ,

Welcome to the sclero forums. I'm sure sorry you have diffuse sclero. Looks like Janey and Shelley gave you a couple of good links, please review them.

You will find a wealth of information, support and friendship here. We look forward to getting to know you better!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)