My RSD/CRPS is in my left hand, specifically centered in my index finger to the point where I cannot perform my normal occupation to its fullest productivity level (writer). And it's freakin' painful!

It happened as the result of a neck injury. That being the case, why can't a neurologist (not a hand doctor which is who I was sent to) do a test to find out what nerve is being affected and then do a sympathetic nerve block or some such thing? Why is this thing considered "incurable" when it seems to me that you can, potentially, find out what is causing it and then treat the root problem vs. just the symptoms?

Also, what has been other people's experiences here in terms of the most effective therapy? I have (hopefully) 3 months of private disability insurance payments that will buy me the time to get better.

So what will work? One specific type of treatment or a combination of different treatments? Any new breakthroughs? Has any one heard of Mirror Box therapy for this malady?

Thank you anyone who can answer some or all of my questions!

piper

So what will work? One specific type of treatment or a combination of different treatments? Any new breakthroughs? Has any one heard of Mirror Box therapy for this malady?

Thank you anyone who can answer some or all of my questions!

piper[/QUOTE]
I'll try to answer to the best of my ability some of your questions but you have to remember each of us is different and some treatments may work for one and not the next.
CRPS is considered incurable BUT someone with it puts their hope into getting remission. People have been known to go into remission for years and then come out of it. If you're one of the lucky ones to go into remission it's important to try to avoid anything like injuries or unnecessary surgeries that might bring you out of remission. (Some people wear medical alert bracelets just in case.)

The root cause of crps is currently being considered to be in the brain and in the spinal fluid. It's a very complex disease so I couldn't possibly cover all the information here or even from memory. This is the reason it can't be "cured" to date with something like a block. The medical profession isn't really sure what causes it and believe there are many things that can contribute to its development.

I have a neurologist and a pain management specialist (tends to be an anesthesiologist with advanced training in pain management). I find that the neurologist tends towards treatment with therapy and medications whereas the pain management md (PM) tends to treat with procedures like sympathetic blocks. You may want to have both types of doctors to cover all your bases. I started with crps in my foot and had 2 lumbar sympathetic blocks. The earlier one gets them, the more likely they are to work. I had mine at the 6 month mark. The first did not not even raise the temperature of my foot to register (it was so cold) but I had questionable relief 2 days later. So the PM repeated the LSB at 2 weeks. My foot went from ice cold to 98.2 degrees but I had no pain relief- it actually increased my pain.

3 mo. of private disability is not a lot of time to have any treatment to knock crps down. Heck, I had to wait over 2 months just to get an appt. with my PM. If your neck injury was a result of a work injury or someone else's fault, I would recommend getting a workman comp's attorney or personal injury attorney. This tends to be a disease with lifelong implications. On the bright side, the earlier your disease is diagnosed and treated, the more likely you are to get good results.

I've tried mirror therapy. It's interesting that my physical therapist (yes, you'll need one of those too) did some testing on me with photos of feet in different positions. I'd have to quickly say if it was a left or right foot. At the end of the stack of cards, he'd count up how many right feet and how many left feet I had picked out (in other words, he separated what I said were left feet vs. right feet). My injury was in my right foot. I always had many more cards in the "left foot" pile. After I'd done this test over a period of appts. w/ him. I realized what the testing meant- My brain was not recognizing my right foot. So I did do mirror therapy for a while to try to "fool" my brain into thinking I could move my right foot without pain and restriction.

As far as what therapy works, each of us is different. I would highly recommend you read as much about this disease as possible. This is a great site for that but also read from other sites. There are organizations too like rsds.org that has info. Do web searches and you'll find lots of info.

You'll need a team of medical professionals to help you. I have an internist (just because I've always had him but he manages my elevated blood pressure that's developed since I acquired crps). I have a neurologist, a pain management specialist with a specialty in crps (these tend to be few and far between- I have to travel to another state to see him), a pain psychologist, a physical therapist- warm water therapy is good for crps and a pharmacist. It's a complex disease with complex therapy required. People try (I'll try to remember as much as I can) medications including anti-depressants that work both on the pain and the resulting depressing, anti-spasmotics, pain creams, pain patches, Ketamine, ketamine cream or lozenges (called troches), pain pills - my PM doesn't like narcotics but does prescribe Tramadol- a synthetic narcotic. Diet- there is a 4-D diet that avoids preservatives and additives in foods- a retired MD, Dr. Hooshman, has a website that lists many of helpful things including the 4-D diet. Do a search on his name and you'll find lots of info on his site. Vitamins with an emphasis on Vit. C. If you ever injure yourself in the future, take vit. C. for a bit of time afterwards. Take vit. C for a week prior to any invasive procedure. HBOT- hyperbaric oxygen therapy since there may have been a lack of oxygen to the small fibers in the affected area that contributed to the development of the disease. IVIG- intravenous immune globulin infusions since there may be an auto-immune component to the disease. Mirror therapy. AVOID ice at all costs to the affected area. Run from any medical professional who tells you to ice the area. Lumbar sympathetic blocks. Indwelling epidurals, spinal cord stimulators. My mind is starting to fog now so I have to log off. The basic point as you can see is that crps is complex and so treatments are complex. Hope you can hit it quick and achieve remission and/or pain relief.

Hello Piper,

There are some doctors that do think this is possible when there is 'objective' evidence of nerve injury. Like say if they can confirm through MRI/Xrays and EMG/NCV studies that the nerve in your neck is causing your CRPS symptoms in your hand then yes it could help the symptoms of the CRPS. HOWEVER.. the surgical procedure to free up the nerve in your cervical spine could possibly cause spread of the CRPS to your neck. Have you been thoroughly evaluated to be sure you have CRPS/RSD? It is very normal to have nerve pain distal to the nerve injury (say from your neck to your hand) but just because you have nerve pain in your finger doesn't mean for certain that you do in fact have CRPS/RSD. (please forgive me if you know this already).
In my case I have a neuroma in my LFCN and Femoral Nerve of the hip/groin after they were damaged during surgery. My ortho didn't realize I had CRPS 2 and went back in a couple of months later to attempt to fix the damage.. long story short.. when I woke up in recovery the CRPS 2 had already begun to spread further down my leg. The area of pain and nerves involved had doubled in size within hours of me waking. Sadly, it wasn't until a neurologist looked at me 3-4wks later that they realized I had developed CRPS 2 after the initial nerve damage and the second op. made it worse. I've since spoken with 5 top neurologist across the country and only one was willing to consider operating but, he warned me that it could get worse. Frustrating I know..

My best advice is to make sure you have seen the top neurosurgeon and get at least 3-5 opinions before making any decisions.

Do you have long term disability that is available to you if your short term runs out?

I truly hope you get the help you need soon! I just got the spinal cord stim trial last week and it has made a huge difference in pain levels for me.

Take care,
Tessa

PS., I had laminectomy/foraminotomy on C3/4 and C5/6 just this past August for nerve pain after a head on collision and it worked very well for me.

Time is of the essense here. The chance of a cure drops precipitously after two years.

Nerve blocks are done in the left stellate ganglia which is probably uninjured since it is protected by the spine. This won't necessarily cure the condition and they'll want to try other procedures first. It sounds like you're diagnosed with RSD caused by a radiculopathy. Unless there's something mechanical they can do this is probably inoperable though the RSD can be cured or interupted by other means.

Can you type with one finger?

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The problem with RSD is, even if you are now able to fix the original injury up in your neck, the nerves in your index finger are now misfiring.

Your index finger would be controlled by the median nerve, which has roots from C6-C7 and C8-T1 and passes through the brachial plexus. You might want to google Thoracic Outlet Syndrome for more info about how an injury near your neck can impact how your hand functions.

A series of stellate ganglion blocks might be able to manage the original injury and can help manage the pain of some cases of RSD pain in those areas.

What kind of doctors are you seeing now and what types of treatments have they offered ?