Quote:
Originally Posted by Praise God
This is the 3rd time I have tried to post this reply. Hopefully, I has not posted 3 times. 
I had full body nerve pain (head to toe), shiny skin on my hand and changes in color on my left foot, sweating more predominantly on the left side, more hair growth on one left side, temperature difference. I discussed it with my neurosurgeon who thought it might be CRPS. That is when I decided it was time to see Dr. K who confirmed the diagnosis (you don't have to have all the signs - but the nerve pain in the key factor).
Dr. K has the new criteria on his website as to how it is diagnosed (most websites have old information - you know the 3 stages? - old information). He also has videos of patients and their rehabilitation. Very informative! Everyone presents differently. This is particularly helpful for doctors who do not know what this is.
I am sorry about your situation. Where is your pain?
My neurosurgeon said the pain was referred pain - like when someone is having a heart attack but they feel pain in their left arm. They have studies on this. I think one recently about women who had C-sections and would have pain in their feet or teeth - other places other than the abdomen.
They think that the brain may be remapping because of the pain but the good news is they have seen it can be reversed.  Oxford Journals had an interesting article on it. They can see the change using a functional MRI of the brain.
Just curious as to why you think the metal is an issue? You know your body the best. Will removing the metal help? I don't know.
I know it is hard to make a decision.
For me, I had cut my finger and I got full body pain, I had surgery on that same nerve and the pain went up then down (9 months later), PT massaged the nerve on the finger due to the scar and the pain went up, had a second surgery on that same nerve and the pain went up again. To me, this is a clear indicator that this nerve plays a role in this problem but it is not the only piece of the puzzle.
It may have been better had I had the surgeries under constant ketamine infusion.
Keep us informed as to what you decide. There is always hope!
By the way, thank you for asking, I am still doing better than I was before the infusions.
I pray you will be feeling better soon.
IT |
Dear IT,
Thanks very much for sharing your experiences and information. It is very informative. I went to Dr. K's site and he has done quite a bit since I last visited it a few years ago.
My pain is primarily in my left foot where I still have one screw left after a failed bunion surgery. I had 2 of the screws removed last year but this 3rd one had so much new bone growth around it and was so deeply embedded that they didn't want to monkey around with it. I get deep sharp shooting nerve pain directly from that area and a recent bonce scan showed inflammation in my foot directly under the area where the screw resides. The swelling of my foot increases with activity and stress. I think something has changed inside structurally very slightly and the metal is literally getting on my nerves.
I have burning and deep bone pain that moves around the left side of my body, primarily my joint areas and it comes and goes. My bones turn ice cold. If I don't stay on top of my RSD pain in my foot these other areas become overly sensitized, that completely exhausts me and I crash. You are probably right that it is like referred pain.
What is strange is that the bone scan also revealed more degenerative changes in my right foot, more so than the left side. While I do experience occasional pain in the right foot too it was never the nerve pain of RSD. Since I realized that my doctors were all concerned about my right foot too I became a bit anxious about potential spread but no one thinks I have spread there. I think the mild burning I'm feeling in that area is simply a psychosomatic response to reading the report. I keep telling myself that and it seems to calm down.
I've always believed that the 3 metal screws were the real source of my pain and I was so deeply disappointed when I was informed that they couldn't take out the 3rd. The surgeon is a very well respected head of the department for trauma surgery at that hospital and I think he did what was best at that time. There is no doubt that I benefited from the removal of the other screws as they were working their way out on their own with each step I took. I'm working toward a plan to see what else can be done.
I'm so happy to hear you are doing better following your infusions. Do you plan to have any more in the future?
You are right, there is always hope. Thanks for the inspiration.
MsL