Been MIA for a bit...
 

trying to get the RSD under control and to get the SCS working properly.

Unfortunately, the SCS still isn't working, and I am planning on getting it removed. I was scheduled to go to the Cleveland Clinic, but I had to postpone it once again. This time, it's because I have to see my orthopedic surgeon again because of a CT scan I recently had done. It is showing extensive joint damage now :( . We have decided that the trip to Cleveland should wait until we see what the ortho has to do to my knee now. I've talked to the Doctor that did the implant surgery, and we will be coordinating with the knee ortho to remove the implant at the same time should I need surgery on my knee.

It's been a battle here, I've been more depressed and in more pain. I've gone through the physical and water therapy and also Laser Accupuncture (I couldn't have the "traditional needles" because of my metal allergy). I also had the IV laser treatment which was only done once because my veins are crappy :( . I also had the treatment in which the doctor put the "colors" into this contraption that I held under my tongue. I did manage to get a few good hours after treatment, but not long term. My husband and kids noticed a change in my attitude some days after the treatment, depending upon the color. Some days I was a total disoriented evil woman, and other days just normal.

The accupuncture doctor prescribed this cool machine - it's a Heat Wave, and I love it. It works like a TINS unit, and so far it is helping with the swelling and pain. I am questioning why my initial doctor did not try this and just pushed the SCS on me. It really makes me wonder.

I hope everyone is doing well, I continue to believe there is something put there that will help. :grouphug: to everyone!

Hi Patti! You've been missed. I'm glad you popped in and gave us an update. Pain can be so terribly exhausting. You are in my prayers. :hug:

Hi Patti .. ummm wow .. the color thing sounds interesting !!!

Am so sorry the SCS hasn't worked for you .. it's a long journey and a big op only to have it not help you any and you must be feeling low with it, I know I am.

Welcome back on the board !

Saffy x

Hi there Patti
 

Hi Patti,

I'm not sure if we've met/chatted before. I'm Sinéad from Ireland and I had my SCS implant last December and some revision surgery last week for the SCS to get it working better for my back, So far so good, I can feel my left leg is still a problem. It's primarily for left side back and leg pain.

I'm sorry to hear you have to have yours out, is it because of your metal alergy or because it didn't work for you, I hope you don't mind me asking, pure curiosity!

Please God you will get sorted soon and when you're feeling better the depression will hopefully lift a little bit and give you some energy.

Praying for you and wishing you every best.

Sinéad xxx :)

Thanks everyone for your comments. Sinead, I've posted on here previously so you might have read some of my posts.

As far as I know, or rather the doctors, the SCS does not contain any metals that I was tested for. It is made up of the more precious metals, while the screws that were implanted in my foot and knee were surgical stainless steel. Apparently, not all doctors use titanium screws, etc. I do have to question the way my body is reacting to the stim if maybe I haven't developed some different type allergen.

I'll try and pop back in a bit, and won't stay away so long. My kids are very active, especially in the summer and I have to try and spend some "quality time" with them before they are too old for mom. They are getting all geared up and ready for the local fair, as well as various other goat shows. The goats are growing, and all doing well:). So far, my daughter has shown her three nubian does (1 yearling and two that are younger then 6 months), and everyone is loving the babies and the yearling's udder development for a first timer. Hopefully, she will continue to do well. I will definitely share pictures with everyone soon :) .

Hi Patti!
 

I am so sad to learn your SCS has been truly disappointing to you. You question whether your doc should have tried a TENS unit on you first, and I find myself knowing in the practice through which I travelled all of the steps one of the intermediate steps of care was the issuing of an interferential stimulator unit to me [a so called TENS unit on steroids] which I used faithfully prior to being ultimately recommended to give SCS serious thought.

That stimulator never worked all day for me as does my SCS, so I would regularly be recharging the unit and could not use it as it recharged. The stim electrode pads were gummy [kind of like placing a moist Gummy Bear candy on my body] so as to adhere to the skin, and wires connected the whole works. I would walk around with the base unit in my pocket, electrodes on my skin, and wires coming out the waist of my pants and disappearing into a pocket. Unfortunately they regularly CAUGHT on obstacles, but it was good having that unit working when I used it. The maximum back stim program was 20 minutes in length, followed by reactivating the stim unit.

If, and that is a big IF, this unit works for you, then go for it, and I very much hope you may have found a solution!!

In the meantime, I'll pray.... can't hurt,
Mark56:hug:zzzzz