Hi to all my old buddies and a message of hope to those who don't know me

[lisashea]

It's so good to see braintalk back up and to see all of old familiar names posting messages.

I am still doing great. No signs of RSD for almost 2 yrs now. I have been officially discharged from medical care and documented as " a miracle". For those of you who do not remember my story, I was diagnosed with RSD from an ankle sprain in sept 2001. I spent 4 yrs trying everything from the standard medical treatments( drugs, blocks, week long inpatient epidurals, ketamine) to alternatives (HBOT, accupuncture, cranial sacral, applied kineisiology, aqua therapy, herbology, passive yoga,...). My doctor was the infamous Dr. Daniel Carr, who at the time was one of the big name doctors treating RSD. He told me to give up and stop trying to cure myself. I prooved him wrong.

I finally found a doctor who theorized that I might not have RSD after all. That maybe I had 2 entrapped nerves in my ankle( the superficial peroneal and the sapheneous). I had told doctors for years that these 2 nerves were trapped because over 20 years ago I had an entrapped ulnar nerve in my elbow and the pain was exactly the same but no one would listen to my theory. Once this doctor came up with the idea, my chiropractor( Dr. Michael Miller) said he could make some adjustments to the bones in my foot/ankle/heal/toes and maybe it would help. Well, within 10 days my RSD symptoms completely disappeared!

It has taken me over 1.5 yrs in rehab and pt to get back everything I lost from 4 yrs of being unable to walk. It was not an easy road but it had a rainbow at the end of the storm. I have gained back the 30 lbs I lost and look like a healthy human being again. My coloring is back and I don't look like I'm ready to die. My black foot has no signs of discoloration and there are no tempurature changes. The only sign left that anything ever happened to me is a scar on my face from an RSD-blister. I also have no limp.

I have been waiting for the forum to get back up and running to post this for a very long time and hope that my story can somehow inspire other's to keep fighting to get better. If I can then so can you!

If there is anything I can do to help anyone, please let me know. If I can help just 1 person get better, then maybe, just maybe the pain and suffering I endured will be somehow worth it.

Peace and Hope to all,
Lisa

[angel1954]

Hi Lisa
I read your post and it was very interesting. I had read about entrapped nerves and I had forgotten that at one time I was going to bring that up to the dr. maybe that is what is wrong with me. This is workers comp so they dont really want to do much. I no longer have insurance but Im thinking about calling today to see if I can get a medical card and going to a dr that was one of my referrals to see what he thinks about it. I would love to be out of pain and burning.And to wake up and actually feel good. This day after day after day of pain is just wearing me out. I am just so drained its hard to get out of bed but I do. I gotta keep going. Im not going to lay in bed everyday and give up.I keep using my arm like the drs tell me to. I am going to make a list today of things I need to do and on the list will be trying to get a medical card.I truly believe if I can find a dr who cares he will be able to make me like I was before I broke my wrist. That would be so nice. Thanks for the inspiration. Hugs.Angel

[lisashea]

Angel,
Please don't stop looking for someone to help you. This entrapped nerve thing is a possiblity. Just do a search on google of nerve entrapment rsd and you'll find alot of information about it. I am NOT the only one who was told they had RSD to then be "fixed" once the nerve(s) were un-entrapped.

My chiropractor fixed me. Not all chiropractors will do adjustments to the extremities, but maybe you could find one by making some phone calls.

I really hope that my story will give you the fight to keep looking for the answers. If there is anything I can do to help you, feel free to ask.

Peace,
Lisa

[Jenmedic]

Just glad to see anyone releived of this kind of pain!!!!!!!!

Congratulations! Just also sad that you had to suffer so long when the answer was right there..

[lisashea]

Thanks Jen.

I am soooooo very lucky to have the pain gone but you are right - it really s-cks that it took 5 yrs away from my life. I try to think that everything happens for a reason and that something really good is going to come out of my experience. I'm waiting for that to happen. Maybe someday it will all make sense. Right now, it doesn't and I just have to keep pluggin away and trying to get a new life. It's not where I was in 2001 but at least it is pain-free. That is what I wished for and now I must revel in the fact that my wish did come true.
Peace to all,
Lisa

[kathy d]

Lisa,
Wow, thanks for your response on this web site. You have inspired me so much. I have been telling all the doctors I have seen that I have RSD AND there is something else wrong with my right foot. They look at me like I am crazy. I am going to look into the nerve entrapment. I was thinking of compartment syndrome, which is probably along the same lines. I have seen a chiropractor since 7/06 and she is the only doctor that has truly helped me. She has given me hope again. So, what does no pain feel like? Please describe it to me so I can remember what it is like! I am thrilled that you got rid of it. I keep telling everyone that I want to be the 2% or so of people that get rid of it and it never comes back! I am so happy for you and pray it never returns. Thanks for your posting. You have inspired me!!!
Take care,
kathy d.

[lisashea]

I am so glad that you are sharing my story with your doctors and others who you are seeing for help. It was such a simple solution for me that if 1 of them, just 1, had actually listened to me, then I could have been healed so much sooner. See, I KNEW I had entrapped nerves. I even knew the names of them. I had my ulnar nerve trapped 20 yrs ago and once you feel that pain you never forget. I had 4 operations to "unentrap" the nerve in my left elbow back in the 1980's.

I told all the doctors I saw for 2nd, 3rd, 4th...100th opinion what I thought was wrong with me, but they all said that it was RSD- no doubt about it.

So, please keep searching and telling what YOU think is causing YOUR pain. I think all of us who are in-tune with our bodies can tell where the pain starts or is the most intense and doctors should LISTEN and think about what we say.

Nerve entrapment syndrome is the term for what I had and I know I'm not the only person who has had rsd diagnosed and then came to find that once a nerve or 2 are un-entrapped(usually via surgery) the rsd symptoms go away. There are cases posted all over the internet if you look hard enough. Back when I was so sick, I could not find anything.

Keep on BELIEVING that YOU WILL be part of the 2%. Keep fighting and don't stop until you win!

No pain puts a smile on my face and soul every moment of every day. I've felt the same type of pain at 2 distinct different times in my life and I just pray that I never have to feel it again.
Peace and HOPE to you,
Lisa

[Sandel]

keep sending your message of hope my friend though I have inquired and my docs feel that is not an issue for me..:(

Hon I remember when you had that procedure done and I remember how excited I was for you.. and us all then. I also know of one other person that has had the same procedure done.. sucessfully too done a couple months ago in Canada.

Here is Kims posting on her procedure:

http://groups.msn.com/TheCanadianRSDNetworkSupportGroup/general.msnw?action=get_message&mview=0&ID_Message=7545&LastModified=4675591690783311367

Both times it inspired me to look harder to try harder and to just be aware that there are no absolutes here, my answer may be out there too. Thank you so much.

Kath hi hon.. I think as the nature of your accident was a crush injury same as mine (dastard cars eh?) I would get yr docs on the possibility.. I was told when I inquired that with my kind of injury nerves do get pushed to the side and entraped but that that it was not the case me.

Both our symptoms went what I call global.. realy soon into RSD. Yours went out of controll last summer and fall and hon I am so glad to see you here with us now. I was very worried about you and your son.

You are both my inspirations,
hugs,
Sandra

[lisashea]

Thank you so much for providing that link to Kim's posting on the Canadian RSD Network Forum! I knew there were other's out in the world who had the same experience as me, but this is the first "real" person I've found. Thank you so much! I've replied to her thread and emailed her personally to see how she is doing since the surgery.

I am very curious how her doctors came up with the diagnosis? It makes me wonder if Canadian docs a more accepting of a fixable diagnosis versus an RSD diagnosis. All of the doctors I saw in Massachusetts wouldn't even consider an alternative for me until the last doctor. Do you know anything else about her story? Please fill me in if you do.

I'm so glad that you find hope in my story and keep searching for your "own" personal solution to your pain. That is the exact reason why I post.

I wish for all of the people who I've met since 2001 with RSD to find the solution to their pain and be pain free. We had such a great little "family" here on braintalk. I was supported so much by so many people and I am so grateful that I found this place. I truly believe that it was here that I got the courage to keep fighting for a cure even when I wanted to just end it all.

Thank you to all of you that helped me. I will never forget.

Peace and HOPE,
Lisa

[Sandel]

Hi Lisa..

Kim dosn't post alot even before.. and I can imagine that she is rediscovering many things she had thought she had lost forever.. I just think it is so wonderful for you both..

Here are some posts as she learned of the procedure and what the doctors told her then..

http://groups.msn.com/TheCanadianRSDNetworkSupportGroup/general.msnw?action=get_message&mview=0&ID_Message=6923&LastModified=4675585327335177721

http://groups.msn.com/TheCanadianRSDNetworkSupportGroup/general.msnw?action=get_message&mview=0&ID_Message=6940&LastModified=4675585571178966516

In the next post by Kim after the procedure.. is a link to Michelle who knows of another person who has had that procedure done... ppst wouldnt be surprised if it is you..

http://groups.msn.com/TheCanadianRSDNetworkSupportGroup/general.msnw?action=get_message&mview=0&ID_Message=7891&LastModified=4675595622531183604

Brings tears of joy and hope for some of us.. Thank you.. And I would think that a period of adjustment is very normal.
The next post takes place 7 weeks after the procedure. Family comunication is very important throughout, so that some members dont start to expect too much out of any recovery too soon..

http://groups.msn.com/TheCanadianRSDNetworkSupportGroup/general.msnw?action=get_message&mview=0&ID_Message=7995&LastModified=4675597165817766846

You are both such an inspiration to me.. and if they can return your sympathetic systems to their proper whack, then we cannot ever give up hope that there will one day be a shutoff switch for anyone with RSD/CRPS.

Soft hugs an keep up the good work Lisa,
Sandra

[lisashea]

Your responses are always so thorough! Thank you so much.

I got you pm and will be posting on the other forum. I don't understand why some people aren't being allowed here. It was an incredible place and I am so grateful that the braintalk forums existend when I needed it the most. You guys were like my family. It was incredible support. I've actually met a few people in person who I first met here.

Oh well. Change is always something you can count on in life.

Thanks again for putting me in contact with Kim.

Peace and Hope,
Lisa

[mrshippie]

THank you for your message. I, too, began with a severe sprain to my left ankle and knee. I think the RSD was first begun after a cortisone shot to m y knee, but was aggrevated by surgery to my ankle. I have been trying to tell the doctors that there is something still wrong IN my ankle and that the peroneal nerve feels like it is pinched, thus causing pain. I do have other symptoms of RSD, and it MAY be what I do have, but I will be seeing a new doctor at DUKE Univ. Hosp. and maybe he will at least take a good look and listen to what I have to share! THank you for giving me hope and more areas to research! I'm so happy for you!!!