What am I in for
 

I was injured at work which I had found out that I tore my meniscus. My Dr told me, don't worry I do thousands of Arthoscopic surgeries a year. Boy...what a line of B.S. that was.
I did 6mths of pt with NO relief. My rehab Dr. did an mri to see what was going on inside and concluded that infact the 1st surgey was a failure because the 1st surgeon never removed the torn part of the meniscus.
I went to a 2nd surgeon that basically told me the samething and guess what, he did a "cleanout arthroscopy" which means that he went in and just shot fluid around to clean it out and closed everything back up.
Once again, more PT with no relief, and again my rehab Dr sends me for another mri which now shows broken cartilage, bone on bone rubbing and meniscule root missing. I recently had a high tibial osteotomy and a 4 compartment fasciaotomy due to complications.
Now I'm being told that I have RSD and there is a good likelyhood that this will be permant. Can someone PLEASE tell me what I am in for...I am in soooo much pain, my current Dr will not give me any pain meds and says that I need to start pain management. Can someone please help me.

Hi Rigman and Welcome,

I am so very sorry for all you've had to go through and the pain you're having. Many of us are survivors of medical mishaps or unexpected complications. We understand the frustration of dealing with that and how frightening a diagnosis of CRPS is.

That said. Please hold on to hope. One of the biggest names in CRPS research, Dr. Michael Stanton-Hicks of Cleveland Clinic says 80% of RSD patients improve over time.

Pain management is vital. I myself put off going until the last possible moment. I wrongly thought it would mean the end of the road. In hindsight it would've made sense to get my pain managed better while still searching for answers.

CRPS is a diagnosis of exclusion. I know you've been through the medical wringer (I went through it too) but make sure you feel 100% confident everything that can be treated HAS been treated. If there is an identifiable cause for your CRPS (sounds like a lot going on in that knee!) then treating the cause can help. In the meantime, get your pain treated and please keep using the limb gently in whatever ways you can without ramping your pain up. Many of us have accomplished that starting in a pool or doing aqua therapy. Movement and even the lightest exercises will help circulation and swelling.

If you have concerns about possible nerve injury during surgery consider seeing a peripheral nerve surgeon or a Physical Medicine and Rehabilitation doctor to explore the possibility of entrapment. It is the number one mimicker of CRPS and an important rule out. I had to go this route and found help at a large academic institution.

If everything is ruled out and treated, know there are many options for treating CRPS pain. It can take time to find what works for YOU. I can't tolerate neurontin but did well on nortriptyline. Some people like Lyrica. I've done great with ketamine and others have done great with low dose naltrexone. You have options. A good pain management doctor will help you find them. Make sure they listen and you feel comfortable with your doctor.

Watch your diet and stress level. Consider a pain therapist, they can help with mindfulness training, hypnosis and EMDR for pain coping. It does help.
Hang in there and know that we're with you and people do improve.

It's taken three years but I am running again. Still on twice yearly ketamine maintenance but that ain't nothin' compared to where I've been.

I hope you find relief and healing soon, :hug:

Thanks for the reply it's nice to know that someone else was able to "to see the light at the end of the tunnel"
I am trying to stay positive and use this as a life changing chapter I guess you could say. Sometimes I think, if the pain would just ease up a little bit I would be ok but my problem is that I've taken percocets which has help a lil bit and Ive also been on short stints of extended release mophine and Oxycontin. Honestly neither of those extended release even touched my pain. Honestly, for me to go to my Dr. appt today and hear that this RSD is what he feels is causing everything and then hand me a script and say hopefully this helps till you get in to see pain management, that really bothers me. By the way my Dr did perscribe neurotin 300mg and says this will also make you sleep. I realize this will take time though it seems like when I am asked what my pain level is or when i'm at PT and say that Im having pain I need to stop and their response is "dont worry about pain" all this stuff makes me feel like no one wants to listen. I was raised that if you dont care about someones feeling you shouldnt ask them how they are doing but dont get mad when it is done to you. I just hope this is just a stumbling block and I can look back at this and laugh about it one day.

I've been in a lot of PT with repetitive motion injuries over the years, none of my PTs ever told me to not worry about pain...:(
If they did I would have found a better PT place.. not all PT's or places are the same..
You can find better ones..

And if it is RSD, getting the correct kind of PT is important..
Don't settle for substandard care, or even worse, treatment that might worsen things..

I meant to mention oral steroids as well. Dr.Stanton-Hicks wrote of a recommendation of prednisone 10mg 3 times daily for ten days in early cases. I tried that early on and it did help knock the inflammation down. I had two rounds so needed to taper.

I can post a couple links to some helpful videos tomorrow. One is from a Stanford Pain specialist. Lots of great info in there on research, treatment and neuorplasticity (which can work for or against you) hence the benefits of early treatment.

Aack I saw your response after putting this addendum......

I agree your pain is important and especially with CRPS you don't want to push too hard. Your system is ramped up already. Not all PTs are familiar with CRPS patients.

More tomorrow, gotta turn in,

I had a "cleanout" arthroscopy after my accident as well on the right side. I woke up with a leg that was black! Red/purple in bed, and black when I got out of bed. They put me into bed immediately. Doctor refused to visit. I heard the nurse shout at the doctor, because indeed, I had filled out pre-op records and it said "feet turn blue". I had it bad back then, but the surgery caused it to "hit" much harder all of a sudden, on both sides. A bit after that I could no longer walk 10 steps without devices. I had 8 months of PT, only to get worse.

Then after about 3 years I got diagnosed with CRPS, but by that time it was too late for my legs (disability). And to say this only started in 2 knees (dashboard injury, and I held back surgery on one knee).

Had all the specialists I went to, only seen this sooner.

In the end I went to my GP, out of sheer desperation, and he IMMEDIATELY sent me to a neurologist, who IMMEDIATELY noticed what was up (thankfully) - I had full blown osteoporosis at that time. But all the treatments were much too late for me, they still tried, though, for which I am eternally grateful! The meds did work on the osteoporosis which is one symptom of a complex disease, but not so much the RSD itself.

Go to pain management! They not only take care of the pain but they are excellent doctors that are well-known with RSD.

I wish you lots of luck!

Thanks Rigman,


You're doing the right thing staying positive. Healing is possible. Some of us have found it comes in tiny increments. Rejoice in those. They accumulate over time. I had three foot/ankle operations including peripheral nerve repair for traumatic neuroma and spent a year on a scooter. My recovery did not happen quickly. But it did come. Sometimes I was just grateful I was able to do exercises and prevent more loss when I didn't see "progress".

Get that appointment and let us know what happens. Maybe ask about neridronate infusions too. There is a clinical safety trial, meaning no placebo, going. Neridronate has good results and current use in Europe. It is recommended early on so now would be a good time to check.

Here's Dr Sean Mackey from Stanford.
Treatment and Research: What's New? - YouTube

And here's Dr. Pradeep Chopra.
Pradeep Chopra MD speaking at RSDSA's Learning to Live Well with Chronic Pain - YouTube

:hug:

Do NOT allow a PT push you to what you feel is too far. Trust your body and what it is telling you. Yes PT is going to hurt to a degree. But creating massive pain is actually NOT a good idea in PT. You do want to keep moving as much as possible.

As far as the neurontin. Many find it helps a lot with the burning, but you may need a higher dose. I'm NOT a dr. but for me I had to take a great deal more. So its ok to go back and say that its not working, and see if they can give you more, you are on a very small dose (3600 is the top dosage) if you are tolerating it.

Many find that meds like Percocet don't do anything, but it is still common to try them in case they do help. You still have, as others mentioned, many other options to try as far as medications. In addition there are different procedures they can try, if you are open to them. Your dr. may offer them, things like a sympathetic nerve block. Go to RSDSA to learn more about the disease and different treatments, etc.

Hi and Welcome. I am sorry you have rsd but am glad you found this forum. I have learned to much here from other people's experiences with rsd. I also have learned so much from all the great information posted here. I have had rsd for over six years now and have learned that having a good pain management dr to help manage the pain and a good psychiatrist to help manage the depression and anxiety from having rsd helps me deal with better with rsd. Also having a great support group like the one here at NeuroTalk has helped me immensely. Hoping you find some comfort in knowing that you are not alone. Hugs and Prayers.