Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-02-2008, 04:13 PM #1
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Cool things are looking up

Well, it looks like the worse is over. I went to all the drs. yesterday, 3 weeks since the emergency surgery to remove my scs due to a massive infection. The open wound on my side, which was being packed and unpacked every day has almost totally healed. No more packing. Just putting a very large bandaid over it. I had my PICC line removed from my right arm last week as was developing another infection at the picc line site. They put it in my left are the same day. I saw my ID (infection disease) dr. and told her that the left one was starting to hurt and she pulled the picc line and put me on oral meds. So now I'm disconnected from all wires, tubes, home nurses, etc. I can actually take a shower this evening, my first in 3 wks. can't wait. I also adopted another doxi little girl from the rescue group. Hubby was so happy that I didn't die (another 24-36 hrs and that would have been an outcome), that he decided that a 4th doxi was workable. So, I'm starting to heal, and feeling better. the rsd has started to kick back in, and I go see my new PM in 2 wks. Hope that goes well.

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Mary
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Old 12-02-2008, 04:57 PM #2
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Great news Mary.

Good for you...

EJ
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Old 12-03-2008, 06:29 PM #3
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Thumbs Up Good news

Mary,
It is so good to hear this news!! Reading your post that seemed filled with hope after all that you have been through lately, just made my day. Even with the RSD kicking in, you put a smile on my face because you are amazing!! Going through all that and posting the good news, in good spirit...thank you! Wish we could see more of that on CNN and local news. You are a champion! All the best to you!
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Old 12-03-2008, 08:57 PM #4
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Thank you so much for your kind words. After almost dying, then being forced to spend a week in a nursing home, then all the pain of the packing and repacking, I figured things had to be getting better l. I know I can deal with future, and I have plans to get back on my horses by spring, Hope hope!!

Yes, things still hurt. My back doesn't want to hold me up for more than about 30 minutes at a time. Doc said after so many surgeries in such a short time, my back is going to take a little longer to heal. Thank heavens for pain meds. If I have to live the rest of my life on meds, so be it. I have found out that things can always get worse, so I try to look at the bright side, love my family and friends, and not to be afraid to tell them how much they mean to me.

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Mary
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Old 12-04-2008, 12:03 AM #5
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Hi Diana,

I agree Mary is amazing and a great example of hope and courage while going thru so much pain and near death. I agree we need to get the message of rsd out to the public and mainly medical students training to be doctors. My next door neighbor is a doctor and teaches part time at medical school here in Phoenix. He was a away for a few days and his daughter left the garage door open. My son in law noticed it and we went over and closed it. I left a message on his phone, and he called on his way back home from California. I asked him if he had ever brought up rsd to students. He said it had never come up. I think they are first year students. Anyway, he asked me if I would be willing to come to the college and speak about RSD. I said yes.

Monday I saw my Dr. of 4 years and asked him about HBOT for me. I have read your postings about HBOT and did more research. It makes so much sense. I called a HBOT center in California, just north of San Fran. Anyway, my Dr. is doing research for me and the treatment and is very excited about it for RSD. I think he would even speak at our RSD support group meeting. Haven't asked him yet. He teaches weekly on the west coast. and just has a part time practice.

Take care and thank you for all your encouragement. Loretta Jewell
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Old 12-04-2008, 12:08 AM #6
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Mary, I hope you can get back on your horses!

Loretta, that is so great you will be helping new med students learn about RSD.
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Old 12-04-2008, 04:22 AM #7
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Hi Mary,

Thank you so much for letting us know about your progress. We were all so frustrated for you not getting the proper treatment after your surgery. You endured all the infections and are so happy you are on the mend.

Yes, to be grateful is key to our emotional health. I also am encouraged by your attitude
after all you have been thru. We are so happy you have the infection under control.'Dealing with the RSD is bad enough, right. Take care, Loretta Jewell
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Old 12-04-2008, 04:31 PM #8
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Default Hi Loretta Jewel

You should be encouraged and we must never give up hope. I still deal with pain BUT I am so much better for having the chamber. Some people say they have been cured by HBOT, but for me, not true. But if you could have seen the amazing results I got, and am still getting you would understand how thankful I am to have tried this crazy thing called HBO. I have had 3 series of 40 dives each, plus numerous dives at home. I am doing a series of dives currently. Look up HBOT&Alzheimer, HBOT& Arthritis, HBOT& antiaging, HBOT & inflamation and anything else you can think of. I know it is not a cure all, but the benifits are amazing and research is on going in many areas concerning HBOTand treatment for various diseases. When searching also use HBOT and Canada, HBOT and Austria, HBOT and UK for a more varied search. I wish you all the best. Keep me posted. Di

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Old 12-05-2008, 03:49 AM #9
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Hi Diana,

I called a HBOT center just north of San Fran. Ca. and talked to them this week. It sounds like a great center with experienced Drs. etc. I'm very serious about going for it. My Dr. I've been seeing for 4 years now is a neurologist, pscychiatrist and pharmacologist, with knowledge of RSD. Formerly from New York, schooled at Cornell, a wonderful Dr. and man. I see him once a month. He has helped me greatly. Don't remember if I have written my depression I had for so long is gone now. I'm just on 60 mg. of Cymbalta. Was on 3200 of Neurotin and about a year ago changed to Lyrica. Am down to 100 mg. I have full body RSD 12 years following surgery.

Monday, during my visit I brought up HBOT and told him about you and my research. He was surprised. I would like to PM you some information he told me that isn't public yet.

My next door neighbor is a Dr. and retired a couple years ago. He is part-time teaching at a medical school. I asked him if he had brought up RSD in his discussions. He said no, but why didn't I come to the school and speak. So I told him I would, because education for medical students was an area that needed more attention to say the least. In his 30 years of family practice, he said he had only 3 RSD patients. Anyway, that is what's new here.

I'm so happy for you have a HBO unit at your home. How great is that. How did you go about finding one to buy.?

Would you tell me how to figure out how to PM you? Thanks, Take care, Loretta
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Old 12-05-2008, 10:30 AM #10
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I'm so happy to hear that things are finally looking up for you, Mary, that's great news!

I hope things continue to get better for you and you're in my thoughts and prayers.
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