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.

Ketamine With A New Doctor

My Ketamine care has been under the guidance of Dr S in Philadelphia since October 2011.  He sent me to Germany on October 2011 for my coma treatment and orchestrated the outpatient infusions at Cooper Medical Center beginning in February 2002. He has now turned over my Ketamine care to a doctor in Miami FL.  The reason for this is two fold; Dr S is now in his 70's and his patient load is getting so large that he is trying to find local doctors for his out of town patients to manage their Ketamine care.

A week before I was scheduled to drive down to Miami with a nurse who I met through this blog (Christina)  who also lives in the Orlando area, I had a really bad fall.  I was taking my dog Nemo across the street to the grassy area of our cul de sac to do her business when my foot just gave out.  My foot has a history of doing this.  Because of my carpal tunnel syndrome, I can't use a cane or a walker.  I went down hard hitting my left knee, the right palm of my hand bending back my wrist and hitting my chin on the pavement.  I jerked my neck and lower back.  Of course I twisted my ankle and foot as well.  My knee, hand and chin were bleeding as I hobbled back to the house.  Over the week the pain in the knee that I skinned began to turn into burning RSD type pain and  was mirrored in the opposite knee.  This was one of the few places that I hadn't had RSD before.  My right wrist, which I had had injected for my carpal tunnel syndrome a month ago was now hurting worse than before the injection and was numb most of the time.  I pulled something in my left shoulder, was having muscle spasms in my neck and sciatica in my back shooting down into my right buttocks.  The next day I went to my PCP and got a muscle relaxant.  Because I was going to have Ketamine in less than I week, I couldn't take my Nucynta.  Opiates block the receptors that Ketamine binds to preventing it from doing it's job to reboot the nervous system.  They should not be taken any closer than two weeks before the beginning of the Ketamine infusion.

Sunday March 25th, I met Christina for the first time when she arrived at my house to drive to Miami with me.  Most doctors require that you have someone with you after your Ketamine infusions.  Since my husband travels for work during the week; Christina was kind enough to offer to drive down with me and stay with me in Miami while I had my Ketamine Monday through Friday.  

Our adventure began about 3:45 after loading my car with our luggage.  Fortunately there wasn't much traffic.  We had an enjoyable drive getting to know each other.  We stopped for a quick bite to eat just about half way there.  We arrived at the Spring Hills Suites, which was just a couple of blocks from the Sylvester Cancer Center of the University of Miami Jackson Medical Center just after dark.  

The protocol that Dr Patin was going to use was Dr S's since I had been inpatient with Dr S and these were supposed to be my follow up "boosters".  Even though the timing was off, Dr Patin felt that he should follow the dosages that Dr S uses in his post inpatient protocol for his set of 5 infusions.  After this week, we could talk about using Dr Patin's protocol.

Monday morning my infusion started over two hours late.  I have a port for my infusions.  Even though it is a cancer center with a pain management department within it; they had to search for a nurse from the chemotherapy area who was port certified who could access my port.  My pain management anesthesiologist, Dr Patin, had his resident doing a one on one with me during my infusion.  This was her first infusion.  Although she was already a pediatrician, she had decided to go back and do an anesthesiology residency.  Once the port was accessed, it took them a while to get me hooked up the the monitor, get the Ketamine and get things started.  The recovery room nurses were extremely busy by the time the drugs were in the unit and it was up to the resident to calculate the rate of the IV.  It was a 100 cc bag that was to run over a 4 hour period.  To calculate the rate per hour of the infusion you divide 100 by 4 and get a rate of 25 cc per hour.  Well some how she recalculated the dose, which was already calculated in the 100 cc bag.  There were 200 mg of Ketamine in that 100 cc of fluid.  Any how she came up with a rate of 0.5 cc per hour.  I politely asked her if I could check her calculations and she declined.  She put me behind the curtain and had things situated so that only the monitor could be seen.  She didn't give me the call bell either.  By the time one of the nurses came over to check on her; nearly half of the infusion time had gone by and only 1 cc of the 100 ccs in the bag had been infused.  Of course the nurse noticed the mistake and paged Dr Patin who was in the clinic seeing patients.  Dr Patin decided that since I had had the coma Ketamine and so much Ketamine over the last 10 years that it would be ok to run the entire 200 mg over the remaining  2 1/2  hours rather than starting over and going for 4 more hours.  He set the rate at 75 cc/hr (triple what it was originally supposed to be) and gave me extra Versed.  For the first time ever, during that infusion I had a hallucination.  Not even during my coma did I have a hallucination.  I knew that this was what it was while I was having it so I wasn't frightened.  I could see and hear what was happening within the room so the hallucination was a distortion of what was going on in the recovery room with people flying around.  When the infusion was over, there are a few things you must do before they release you: drink something, go to the bathroom and sit in the recliner for a set amount of time. As soon as they gave me some water, I got very nauseous.  Before the zophran was delivered from the pharmacy, I was vomiting. When Dr Patin came to check on me my speech was very slurred.  I had to stay and recover for over an hour when I'm usually ready to leave within half an hour at the most.  Christina walked me up to our room and went out to get food as I was not steady enough to go out to dinner that night.  We didn't want to take any chances on me falling.

Tuesday, Dr Patin continued following Dr S's post inpatient protocol of 200 mg.  We got started late again but my port was still accessed from Monday.  The resident knew where the supplies were and so the delay wasn't too long.  For the remainder of the week, she made sure that she had Zophran and gave it to me at the beginning of the infusion since it last for 6 hours. The IV pump was set to the correct rate so I was wide awake during the infusion listening to music.  After the infusion I was able to speak to Dr Patin at length.  I gave him an article that I brought from home on Ketamine nasal spray, spoke with him about his RSD experience and told him about my involvement with the Ketamine Klub.  He was interested in learning more about the Ketamine nasal spray and asked if I minded if he did prescribe it for me if it was approved if it would be ok to have it made at his compounding pharmacy and mailed to me.  That was fine with me since I don't know of a local compounding pharmacy.  I learned that he has been doing Ketamine infusions for a while but with cancer pain patients.  He has minimal RSD experience but was willing to listen, read and learn more.  I contacted one of our K Klub members and she volunteered to print some specific articles and bring them to me later in the week to give them to Dr Patin.

Wednesday we continued with the 200 mg protocol.  Things started closer to 8:00 and went without a hitch. I was still having pain in my knees, wrists, and sciatic nerve in addition to my usual places.  I decided that I needed to ask Dr Patin to forget about Dr S's protocol since my pain was as bad as it was before Dr S put me into Hahnemann for my inpatient.  We only had two days left to squash this new pain or risk it being a permanent spread.  

Thursday while they were getting set up, I had a visit from a fellow RSDer who works at U of Miami Medical.  I told the resident that there had been no change in my pain and that she needed to speak to Dr Patin (who was in a procedure) about increasing the dosage since we only had two infusions left.  After Talia left, I closed my eyes as I had come down with a cold and was feeling rather lousy.  I hadn't slept the night before.  All of a sudden I could tell that there had been a change.  Unlike Tuesday and Wednesday, I was starting to feel a bit loopy.  I asked the resident if anything had changed.  She said that she had reached Dr Patin between procedures and that she had doubled the dose from 200 mg to 400 mg over the 4 hour infusion.  On the stretcher with me I had a box of tissues, a plastic bag to put the used ones in and my cell phone.  Some how my phone dialed my friend Tara (who lives in Syracuse NY) who is my health care proxy.  I sounded like a drunk.  She asked me if there was someone else that I could give the phone to.  On my left, I was up against a wall.  On my right the curtain was closed.  In front of me the curtain was closed.  The resident could only see the monitor and once again she hadn't given me the call bell so I said no.  I assured her that everything was fine and that they had just increased my dose.  My husband Jim was traveling back home so she couldn't get him on the phone to find out what was going on so she left him a message saying nothing urgent because she knew that if he even saw her number he would panic.  As soon as the infusion was over; fortunately I remembered the conversation so I texted her and apologized for the phone call and explained that I had been wide awake which is why I had the phone with me to listen to music.  Thursday evening, another one of my RSD Facebook friends and her husband met up with Christina and I for dinner.  She was kind enough to have printed out articles for me to give to Dr Patin on Friday for him to read specifically about RSD and about Ketamine results on RSD patients.  We had a wonderful dinner talking about RSD, Ketamine and coincidentally Georgiana's mom has Parkinson's and my father died of ALS.  Twelve years ago when my father was diagnosed at John's Hopkins the neurologists there told me that there was absolutely no possibility that there was any correlation between my RSD and my father's ALS.  It just seemed like too much of a coincidence that we would both have a neuromuscular disease.  Now they think that there might be a connection between MS, Parkinson, ALS and RSD.

Friday I again got a late start but was able to get the 400 mgs over 4 hours.  This time I left my cell phone in the bag with my clothing so that there would be no accidental calls.  I was already out when Talia stopped by to say hello.  After the infusion, Dr Patin came to talk again.  It was very obvious that he had read the article on Ketamine nasal spray and gladly took the articles that Georgiana printed for me.  We spoke for about half an hour before his assistant came to get him because he had someone waiting in his office for him.

Right now he has staffing issues but he has been told by the administration that if he gets a Ketamine patient base that they will give him three dedicated beds and his own nurse in the anesthesia recovery room.  Right now, he can only do one patient at a time so it would be a huge improvement to be able to do three at a time and to have a nurse doing the infusions rather than a different resident each month.  Although cancer pain is his specialty, he really knows ketamine and is willing to do high dose Ketamine as high as 4 mg/kg/hr over 6 hours with a 2 - 3 hour recovery period.  That is the same dose that I got in Germany during my coma.  The difference is of course that during my coma the Ketamine ran 24 hours a day for 6 days rather than 6 hours a day for 5 days.  He has the experience working with pain management and he seems willing to learn about RSD.  Unlike most pain management doctors in FL, he is not opposed to his RSD patients having a local pain management doctor or RSD specialist and using him for their Ketamine only.

I feel that once he builds up his patient base and gets the extra staff that this could be a really good thing for those of us in the southeast.  Right now there are kinks and we will have to be patient while they work them out.  The nurses couldn't have been nicer or harder working.  I never saw them sitting down for a minute except for when they were making their follow up calls from the previous day's cases.

At this time, Dr Patin does not do inpatient Ketamine as he works in the Cancer Center; however I did hear that there is another pain management doctor at the U of Miami hospital which is 5 blocks away who does do inpatient Ketamine.  I'm working on getting that information.

There is a nice hotel (Spring Hill Suites) just a couple blocks away from the Sylvester Cancer Center.  I suggest that you make your reservations as far in advance as you can.  If you can't get in there, you'll have to choose a hotel near the airport which isn't too far away but  I suspect would be noisier.  There is a free breakfast at Spring Hill Suites but of course the one getting the Ketamine won't be able to eat breakfast. We found a couple of good places to eat including Greek and Cuban.  There was also a Winn Dixie within a couple of blocks.  The Spring Hill Suites has a microwave and a mini-refrig.  There is also a small pool for the person accompanying the RSDer.  Parking at the hotel is $15/day plus $3 tax.  They charge for parking at the caner center too but what we did was to have me call when they called transport to take me out to the pick up area.  Christina would leave the hotel then and most of the time we would both arrive out front at the same time.  This way we wouldn't have to pay to park at the cancer center in addition to the hotel.

This week of infusions really saved me since I'd fallen but unfortunately it didn't take care of my "normal" pain.  It is Dr Patin's protocol to have the infusions every three months but I'm not sure that I will make it three months which is ironic because after my 2009 inpatient and follow up, I didn't have another infusion until I went inpatient in late January of this year.  That admission was prompted by a bad fall October 30th 2011.

Thursday I am meeting with a podiatrist to look at the stability of my foot and ankle to see if there is anything that we can do to decrease my fall risk without the use of a cane/walker keeping in mind that I can't tolerate a shoe.  I can wear a sandal but nothing that touches the top of my foot where the surgical scars are.  We'll see how that goes.

If anyone has any questions about Dr Patin or the Sylvester Cancer Center, feel free to ask them in the comments or to email me at nrcotterman@yahoo.com.