you're list looks great alaina. if i were you i might add that there is also a chance of infection when getting an scs. i also was told by one of my drs that the scs works best during the first two years of having rsd and is not as effective after that. as for the nerveblocks, i've had eight in the beginning but only helped a little but still may help you. everyone is different. i have been told by my pm dr that 3600mg of gabapentin is the max for rsd. never heard of 5000mg being the max. and maybe you could try a lower dose of presdnisone 5/325mg like for example several times daily as needed for pain instead of 10/325 only for breakthru pain. maybe there is a time release version that may help you more. there is also voltaren gel that my dr prescribes to me for my joint pain from my rsd. it helps me on those cold winter days but you need a prescription for it. also when i was first diagnosed i was given prednisone at (something like 10mg pills that i started at and took like 7 of those 10mg pills the first day and then slowly reduced the amount and slowly weaned off of after a few months that helped my rsd swelling go down and numbed the pain at least while i was on it. my neurologist prescribed it to me. but since it can't be taken for long term use because of side effects, i had to stop it after a few months. i can't remember the exact dosage i took but will look back at my files and see if i can find it. and there are alot of trial meds and procedures for rsd that you can look up on this forum and online that you may want to check out. i am curious about neridronate too, but my pm dr has not heard of it being used yet for rsd (i think its still in trial stage and i don't think is fda approved yet.) i know it's hard switching drs too. i loved my neurologist and she helped me in the beginning stages of rsd, but as i learned more about rsd i realized that she didn't know enough about it to help me anymore. she did'nt seem to think it spread unless all the symptoms at the initial site were there (which i have learned since then is not correct) and she thought that when physical external symptoms like swelling subside a bit that the pain also subsides. that is also not correct. and lastly she thought that maybe the meds like gabapentin and pain killers should be reduced if external symptoms were reduced which is also incorrect. my pm dr knows rsd the best and he knows that these suggestions are not correct because he has had the most experience with rsd. i also know that just because the external symptoms may subside a little does not mean the pain is going away. its actually gotten worse and has also spread without all the same symptoms i initially had. so i don't see her anymore. i stick with my pm dr and am grateful i have him to help me manage my rsd pain. i hope that you can find someone to help you too. just remember to be calm but firm about your symptoms and don't let anyone say its all in your head. some drs still try that one and it's just sad to me. and maybe show them the info you know about rsd and treatments for it so they know you know what you are talking about. (living with rsd should be enough proof that we know what we are talking about, but unfortunately some drs i've come across think that unless its written somewhere then it must be all in our head. that couldn't be farther from the truth. well i'll stop rambling now. i hope you have success with your dr and i hope i'm not annoying you with my suggestions. i am not a dr so please make sure to check with them before you try anything and know that i am praying for you to feel better soon.:hug:

RSD ME,

Thank you! I appreciate any advice I can get from everybody, especially those who have been dealing with CRPS for the length of time that you have. There is no way that you are annoying me.

I have completely forgot the use of steroids such as prednisone for CRPS. Thank you! I will certainly add that to the list.

LittlePaw,

I was in a bit of a hurry last night when I read through the replies here, as I was celebrating our anniversary. I wanted to give my husband all of my attention and love that he very much deserves. I wasn't able to do much for him this year, but I wanted to make sure to make him feel special and appreciated. As a result, I missed your message.

I am still seeing my Orthopedic surgeon. He is a caring doctor and does not want to release me from his care until the bones have completely healed. The non-union is showing a small gap in the posterior section of one of the joints, I can't recall which one to be honest, but that does not concern my orthopedic surgeon. Most of the non-union is only visible through the MRI, and does not show up on the X-rays. It is the MRI that shows that the bone has fused only about 50%. That is what concerns him. He has discussed the possibility of having to perform surgery again if the bone stimulator does not take care of things. I am not sure what his plan was, but we are all hopeful that it will not come to the point of having to do another surgery.

I am open to the idea of getting some fresh eyes to help me. I just really hate the idea of switching doctors again. It is so hard to figure out if the next one is going to be any more knowledgeable than the last. I did not know that I could request that certain doctors be restricted from accessing my records.

As always, thank you for your help and advice. It is always appreciated.

Enjoying your life in the world and focusing on those you love are the best reasons to miss a message! Congratulations on your anniversary.

I am glad your ortho is sticking with you.

I had another thought on your fusion... Has any consideration been given to biphosphinates? You mentioned them and I was thinking about the difficulty of laying new bone both with CRPS and non-weightbearing. These medications inhibit osteoclasts (bone eaters) and encourage osteoblasts (bone layers). I have no idea if something like that might help but since they do with osteopenia and osteporosis it might be an idea to try. Oral alendronate has shown some promise with CRPS in studies and should be fairly reasonable cost wise.

You can certainly ask medical records at U of M about restricted access. At the hospital system I worked in this was not a problem.

:hug:

Hey Alaina,

I thought of you last night as I was looking at info about metatarsal fractures. One of the ortho pages I looked at (sorry I don't know which one) said that in cases of non-union, 66% of patients had low levels of Vit D.

Have you had your D checked? Do you supplement? I don't remember if you ever mentioned this. D is so commonly low. Even mine was despite taking a multivitamin and living in sunny Texas.

:hug:

That has been a lifelong struggle for me. My Vit D levels have been low since I was young. I do supplement along with calcium supplements as well. Thank you for the thought.

Alaina,
Just read on Zinna's wonderful thread about how much you continue to suffer. I am so sorry that you are hurting so badly. I feel so sad for you. I respect your courage to keep fighting even when all that you have tried is not working. It is a roller coaster ride between hope and despair with each new treatment.
My injury is quite different from yours (not as severe) and my Crps is not as severe either, but I thought I'd share what is working for me. I had a 3 day ketamine/steroid/magnesium infusion at the first of October. This made a difference but I don't think this is the best ketamine protocol (it was all that was available near my area). The swelling has stayed down throughout most of my foot since this and I have fewer flares. Started LDN at the end of October and this has helped greatly with the burning. PT of couse has helped. To begin a bisphosphonate this week. Neridronate is not yet available in this country. There are several trials going on now. I figure any bisphosphonate is better than none though. I also have oral ketamine for pain. I dissolve it under my tongue and it does help short term (an hour or two.) I use it sparingly. I also take vit. D,C, Fish Oil and magnesium.
You have a great list going. Just thought I would chime in on whats working for me. I'm by no means back to normal, but I am at least more functional and in less pain. I know this is a blessing many would give anything for. I still so miss the old me though.
You are in my thoughts~mac