Involved in a legal issue regarding RSD?

If you are involved in litigation surrounding your RSD, you might want to look into having a life care planner who specializes in RSD to assist you in your fight.  There is an excellent article about it at RSDSA.org. ( http://rsds.org/4/resources/Life_Care_Plans.html)

It is an important part of your case to show what treatments you are likely to need while living with RSD.  Check it out.

Follow up on Carpal Tunnel Surgery

I haven't been blogging because my RSD spread into my hand after the carpal tunnel surgery.  I knew going into this surgery that there was a 50% chance of spread but my doctor thought that by getting Ketamine during the surgery and immediately after that this would prevent spread.  Well it did not.

I was started on LDN (Low Dose Naltrexone - www.ldn.org) and got another round of Ketamine.  Two and a half months after the surgery, my hand is improving.  A great weight has been lifted for me. I depend on my upper body to compensate for lower extremity RSD.  Not being to use my dominant hand was an experience that I never want to repeat.

Carpal Tunnel Syndrome Surgery

It has been a while since I have posted. My worst nightmare came true following the carpal tunnel release

The Carpal Tunnel Release Surgery and RSD

High Dose Ketamine and CRPS/RSD Spread

Wednesday June 20^th, I finally had my carpal tunnel release surgery with the wonderful Dr. Brian Leung.  I had it arranged that I would get 100 mg of Ketamine during the surgery and would then drive down to Miami for high dose Ketamine with Dr Denmis Patin the following week.

The risk of spread of the RSD from carpal tunnel release surgery is 50%.  My dilemma was that I was losing function of my right hand due to the carpal tunnel syndrome.  I was having difficulties doing my activities of daily living.  So if I didn’t do the surgery, I could totally lose function of my dominant hand.  If I had the surgery and the RSD spread to my hand, I would not only lose function but have pain as well.  After talking to my RSD neurologist, we decided that the risk would be greatly reduced if I had Ketamine during and after the surgery.  Of course he could not make a promise that I still wouldn’t have RSD spread; there are no promises when it comes to this disease.  I weighted the risks and benefits and decided to have the surgery.

I had arrangements made for a friend to drive me to and from the surgery and another friend to accompany me to Miami for the Ketamine as it is required that someone spend the night with you after the infusion.  Two weeks prior to the surgery, the friend who was going to go to Miami with me had a person issue come up and all of a sudden, I had no one to spend the night with me.  Fortunately I was able to get another friend to stay with me. She lives in Miami so I would make the drive to and from Orlando on my own.

The surgery went well.  I was in a bit more pain than I expected, but nothing that I could’t handle.  It did cause a flare in my RSD however.  I expected that.  I had hoped that by getting the Ketamine during the surgery that I wouldn’t flare, but for me 100 mg isn’t enough to prevent me from flaring.

Sunday, I headed down to Miami driving through tropical storm Debby.  That was a harrowing drive.  I was never more relieved than when I pulled up in front of the Spring Hills Suites!!

Monday through Wednesday, I got 200 mg per hour of Ketamine along with IV Versed and IV Ativan.  The resident was wonderful as is the nursing staff at Sylvester Cancer Center’s Surgical Center.  I can not say enough about the staff there!!  The resident made sure that I was asleep the entire time so that I would not have any negative side effects from the Ketamine.

When I got home, I still had a suture in my wrist and was still having some burning pain.  I rubbed my Ketamine cream into my hand four times a day.  Within 48 hours, the burning was gone and although I was still having surgical pain it was soothed by NSAIDs.

Tuesday July 3^rd, I saw the surgeon and the suture was removed.  I had my first OT session.  I realized during the OT session how far I have to go to get full range of motion back.  During this week doing the home exercises, I have already seen improvement.

Thanks to a great surgeon, high dose Ketamine and now OT, I feel confident that I made the right decision to have the carpal tunnel release surgery with the high dose Ketamine.

 Immediately after surgery this is what my hand looked like

This is my hand July 6, 2012 sixteen days after surgery and a week after high dose Ketamine.

I'm normal, not a celebrety or a monster!

I'm in Miami helping someone with RSD get her Ketamine, just as she helped me in March. There are some members on an online group that I belong to staying here as well. Some were anxiou to meet me, which was flattering. One young member treated me like a celebrety. Then there are others, who think that I'm an egomaniac when I share the history of Ketamine in Philadelphia (and possibly the US) of which I happen to be a part of. As a nurse, we are trained to teach people about their treatments including the history, of which I just happened to live. I'm just a normal person like the other members with RSD. I have good days and bad ones. Stress aggravates my condition just like everyone else. I'm a normal person trying to use my nursing education to educate and help others. It DOES make me feel useful for the first time since I had to stop working five and a half years into RSD. If that is wrong, then I'm sorry! I miss my little group and desperately want to return but without being added to this group and that group without my permission. I don't know if that is possible. Should I start my own secret group with people that I know and trust? But then I'm not reaching the newly diagnosed or the people who need help. Do I branch out and not just do Ketamine? The admins of the K Klub have that under control. So many decisions, but for now, I'm off to Seattle Sunday to get onto the Disney Wonder on Monday headed to Alska to celebrate my 55th birthday. I return to the Internet June 6th, not as a celebrety or a monster but as a normal person with RSD, who is a nurse, a wife or 34 years, a mom of 31 years and someone who some times cares too much. (((hugs)))

Just human! Not a celebrety, not a monster.

I Thought I'd Heard It All!

I've had doctors tell me that RSD can't spread, that it is "all in your head", and many other falsehoods but last week I heard something that blew me away.  It was so off the wall that I just had to chuckle.

My migraine neurologist wanted me to go to a DO for a Osteopathic Manipulation Treatment.  His office made an appointment with a doctor who he recommended.  This neurologist is the head of the FL DO association so one would think that he has a good knowledge base but he is one of those neurologists who says that RSD can't spread so I should have known that the DO diagnostician that he sent me to might not know much about RSD either.

When I arrived, they asked for my history.  When I went in to see the doctor, she began the manipulation. As she was manipulating my head, she was telling me how she took her son to see a doctor in Chicago who was doing this new injection treatment for neuro-inflammation.  She wanted to be sure that I knew that RSD fell into the category of neuro-inflammation.  I reminded her that I was a nurse and that I had had RSD for 16 years.  She went on to tell me about how this treatment involves the injection of D5W (5% Dextrose in water) into the inflamed nerves.  Because of the allodynia on the top of my foot, she wanted to inject the scars from my surgery to fuse my right foot with the D5W (sugar water) to "cure" my RSD.  It took every ounce of restraint for me not to laugh out loud right there.

At the end of the treatment, she wrote down the web site of this doctor so that I could check it out.  I thanked her and quickly exited.  When I went to check out, they wanted me to make an appointment for Monday (this was Friday).  I told the receptionist "I don't think that I will be coming back, thank you" and ran out of the door.

I can not see how any physician can believe that 5% sugar water can reverse nerve damage when it is injected into a 15 year old surgical scar.  It has to be the wildest "cure" that I have heard for this poorly understood disease.  I wonder how many people who are desperate for anything that might help them would pay good money for something like this?  She told me that there is no procedure code for this injection.  Gee, I can't imagine why!  So, she was trying to figure out what to charge for it.  You couldn't pay me to let her stick a needle into my RSD foot.