Hello, my name is Patti, I live in Michigan and I suffer from RSD as a result of a car accident from 2007. RSD has taken control of my life. I feel lost and alone. I have an extremely supportive husband and family, yet I feel like I have failed them. I have become a burden to them. I went from working 40+ hours, taking care of the house, two teenagers, three boston terriers, 1 persian cat, 2 nubian dairy goats (expecting babies in March), 3 holland lop rabbits and 3 stray/barn cats that adopted us (we feed our pets well).

I have two kids at home - my 17 yr old son that will graduate this year and a 16 year old daughter. They have been active (very) in our local 4H since 2000. It has been a wonderful experience for the kids, especially since the accident as it gives them something to do for themselves instead of helping around the house. My 17 yr old has been cooking for almost 4 years. He has prepared a lot of the meals here instead of hanging out with his friends.

Now, onto my problems and concerns, but where to start? In Sept of 2007, we were in our Dodge Durango and hit head on by a woman not paying attention. She totalled out our Durango (a 4 year old 4-wheel drive vehicle, extremely clean and loaded with options and low mileage), as well as her Malibu. I was taken to the hospital by ambulance, x-rays taken, pain meds given, follow up with primary care physician, blah blah blah. I followed up with my primary care physician, she started me on physical therapy, gave me the ice/elevation, cane or crutches speech. After constant pain and x-rays, she finally ordered a bone scan of my right foot in October. This revealed a Lis Franc fracture and a chipped bone. She referred me to an orthopedic office, who prescribed a very expensive junk bone stimulator (good thing for insurance) that was junk. He did however perform an arthroscopic surgery on my right knee to repair a torn meniscus. He however missed that the knee cap was out of place and the surgery obviously failed. He referred me over to a knee guy in his office, yet insisted on continuing to treat my foot.

In May of 2008, my orthodpedic surgereon (knee doc) moved my knee cap back in place, repaired the meniscus again and screwed it all back in place. It was not healing right, and I expressed to my doctor that I think I might be allergic to the screws which he kept insisted that it wasn't possible. Finally in October of 2008, I was referred over to a different foot guy, and he treated my fractures and the bone chip. He fused three toe joints, removed the bone chip and fixed my tendon. Shortly after this, I got my knee guy to listen to me, and he went in and took the screws out. Of course, the screws had irritated my bones to the point where he had to use quite a bit of the bone putty to fill in the holes because the bone was dissolving around the area. My screws were so loose that any movement would cause them to wiggle around. I also advised the foot doctor (they were in the same office) that I had a problem with the screws in my knee and was asking about the screws in my foot. Finally in May of 2009, he removed the screws in my foot due to problems. Throughout this entire time, they kept insisting that what they had done was great, and it was probably due to muscle weakness and sent me to therapy. Having the surgeries spread so far apart really made things worse with the therapy. For my foot surgery, I had to go 6 months, non weight bearing at all. This prevented me from doing therapy to help me strengthen my knee, then when the foot was "ok" to walk on, the doctor had performed surgery to remove knee screws and once again, I was non weight bearing due to the softness of the bone, and the putty had to really set up or I could walk wrong and shatter things. All this time, I keep tellling them about the numbness, the tingles, the cold-water drip sensation, the swelling, the actual coldness of my leg. They didn't think it was anything, said they were done and that was that.

My primary care physican did finallly refer me to the pain management center I have been seeing for almost 2 years now. I had all the injections they try in the beginning. They suggested a spinal implant stimulator. I saw the shrink, I had the trial, and I also had the allergy testing kit on the materials in the unit.

During the trial, I had really only one day of success. I had such a huge problem with lead migration, that the doctor told me then that I would have to have the surgically implanted leads instead of just putting the wires in.

In the meantime, I had somehow torn the meniscus in my right knee once again, and had that repaired 20 days prior to the stim.

In Sept of 2010, I had the stim implanted. I think the doctor must have forgotten that he discussed the surgically places leads, as once again lead migration problems. After the 3 to 4 week waiting period, the stim was turned on. The very next day, I was admitted to the hospital because of cross-stimulation in my chest wall. The hospital (even though this was the hospital where the stim was implanted) thought it was a heart attack. We showed the E.R. doctor that it happened when my stim was on. They still admitted me for the night and insisted on a stress test the next day. Stress test was done, things were fine. They agreed that it was stim problem, released me and told me to follow up with pain management doctor.

Also, the pain management doctor had implanted by battery on my side, slightly above my hip. He did however, implant it on a stretch mark and the day after the surgery, the battery started moving even though I was faithful with my belly band (I wore it out and asked for a new one!). The battery continued to move, I continued to have to go in and be reprogrammed by the medtronics rep and seen by the original doctor that performed the implant. Everytime, the medtronics rep and I expressed concerned over the battery moving. At this point, it was sticking out about a half inch from my body (I actually ran into a door knob with it!). He kept insisting that it was fine, as long as the device could communicate with the controller. Lucky for me, one day at my appointment, I was seen by a different doctor. At this time, the medtronics rep (and I) were unable to communicate to the device, and it was becoming a problem. When they were able to get it to communicate, I was jolted off the examining table, and it was hard to shut me off. The "new" doctor took one look at me, had the device completely turned off and said I had to undergo yet another surgery to move the battery and to surgically implant the leads. This was done (finally) in Dec of 2010 and had to be performed by an orthopedic surgeon that worked with the spine.

The orthodedic surgeon recommended using a paddle lead as opposed to just the wires. He assured me that the paddle would prevent the cross firing and give better, more direct coverage. Of course, this was wrong. After the paddle was implanted, is when the real problems began. Currently, I have very little feeling in my fingertips, numbness in my hands, arms, both legs now, coldness all over, the cold dripping water sensation in my back and intense swelling. The device still doesn't provide coverage in the correct leg. I still get the jolts, loss of coverage and have to "wiggle" (which hurts) to get coverage at times. The ortho doctor suggested (highly) that the pain management clinic start blocks right away, as he thought the RSD was flaring/spreading. Of course, the pain management doctor thought it was just due to the swelling and said give it some time. Another doctor in his office thought it was med related and changed my vicoprofin to just vicodin and was going to look at my Lyrica - I haven't seen him since (he left on vacation) and a third doctor said it was indeed the RSD and wanted to finally start the blocks. I actually had the first epideral block about two weeks ago. The doctor said they have to be done in a series of two, two weeks apart. I am scheduled to go back on the 23rd of Feb, but am not sure yet. During the process, I had opted for the IV sedative. This however, did not help as it was the most painful thing I have ever felt to date! I screamed so loud during it that my husband, other patients, nurses, etc heard me. The doctor advised after I was in the "recovery" area that I was extremely sensative, more so then they had realized.

The block was a failure. Two days after, I couldn't even get out of bed without having 100% assistance from my husband. I could barely walk. The symptoms did not "ease", if anything it has caused more pain. I cannot sit long (hurts my spine and my battery area), I can't lay comfortably (especially with my unit on) and I cannot walk or stand long without the aide of my cane and my husband. I have tremors now, even when the unit is off, my entire body still "feels" the sensations. I cannot bear to go outside, even to go to my doctors appointments. It affects not only my right leg now, but my spine and battery area. I have to spend the entire evening on my heating pad when I get home.

I hate this. I went from a strong, hard-working person to feeling like an 80 year old. I can't stand clothes other then my pjs. A bra is like a straight jacket to me. Shoes are an enemy, as they are even harder to get off due to swelling. My pants (jeans) irritate my battery and my leg. I have certain socks that don't bother/hurt the top part of my foot as much, but these socks are extremely hard to get off at the end of the day because of swelling. I LOVE my pillows though. I too have found that the feather pillows work much better then other types, but have worn them out and am in a desparate search of new. I can't stand heavy blankets on me, my husband loves his flannel sheets, but they hurt extremely bad so we use just the "normal" sheets. I sweat, I freeze. It's annoying to be sweating, yet at the same time have the coldness and the water dripping sensations.

My husband was at least able to hug or hold me before the paddle was installed. Now a gentle loving hug that is meant to tell me the love he still has for me and to help with my mood turns into a teary painful embrace. I'm tired of this - tired of the medicines, tired of the problems and jolts associated with the stim. I want my life back, but I have no idea on how to do it. I'm not me anymore. I have trouble speaking due to the wonderful dry mouth, I have trouble getting things out at times, and sometimes I am just lost in my mind. Is there any "ray of hope", a silver lining any where? I just want to have even one hour of peacefulness. I'm missing my kids' important years (well, they are all important), as they won't be home much longer.

Well, sorry for the long rant/intro. I just really needed to vent. Now I'm off to read about others and hopefully find that silver lining.

Dear Patti;

Welcome..Iam sorry to read your post and everything you have had to endure to this point...I want to say that with us you can be your 'new' self as we all walk in your shoes, matter of speaking..Patti, RSD is an ugly animal..we are here for you..to listen, to vent, to help...Answers are not always possible but we have a wonderful RSD family here and we care a bunch...so come to us..and allow us to be part of your struggle..we can relate and really do understand your pain and what is happening to you..

Hugz, Kathy

Patti,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hello Patti,
I am very sorry to hear your ordeal..I am a new member to this site and my beautiful 19 yrs old daughter has RSD in her left upper and lower extremity and now in her head..it is taking control over her, unbearable..so i truly understand your pain..we all will pray for each other..
love,
dogsrn

Dogsn,

Oh my, 19 is too young to deal with this "monster". I understand that there are many other diseases/illnesses that strike our children, but this one is truly a monster. One never knows how they are going to feel minute by minute. One second, things are fine - next thing you know, the pain starts, the craziness of the "cold water drips", the looks on the faces of the doctors when you are trying to explain things. I think the lack of understanding this "monster" is what makes it so hard. Prayers and gentle hugs to you and your family. Let your daughter know that there are people who are suffering just like her and truly understand her pain. It's not just in her head - it's real, and we are here for you and her.

Hugs,
Patti