[edever34]

Hi -My name is Carol and I will try to be as concise as possible. I woke up on Aug.8th,2007 with an excruciating pain on the bottom of my right foot.My husband and I were living in Florida at the time -He was retired and I was running a family owned business. To shorten this story ,I went to @ 14 Doctors,2 pain centers and 3 hospitalazations,and NO diagnosis.At the second pain center ,one of the lumbar blocks did take away that initial pain on bottom of foot,but the burning,sensitivity,freezing and pain continued and travelled to my knee and groin.I was prescribed every pill in the book and because I am sensitive to drugs,I was a zombie.By January 2007,I was barely able to walk or function and we made the decision to go back home to Louisville,Kyfor two reasons. #1-all of our family would be close and able to help my husband care for me and #2.-We knew a very good Neurosurgeon who had removed a cancerous brain tumor from our oldest son @ 11 years prior.We made an appointment for March 4th,2007 and travelled back to Louisville (I barely remember this). By this time my toes were gnarlled under my foot and my last 3 toes were like concrete,I could not wear any shoes at all. The Doctor had been sent all of my records-MRIs Etc. Taking one look at my foot he told us that I had RSD. We had never heard of this and he was quite shocked that none of the 14 Drs. in Florida had not been able to diagnois this. He recomnmended a trial SCS implant and referred me to a Pain Management Dr. I tried another nerve block first with No results,so proceeded on with the trial. It was successful and I was able to walk a bit and put on a tennis shoe. I had the permanent SCS implant on March 12th 2008. My implant is a lamanectomy type done by the Neurosurgeon,and believe me this was a shock,as I did not know that there were 2 different types and thought that I was having the type that the Pain Drs do (Pecrutaneous). I was in the hospital 4 days and had 36 staples.Remember -I knew nothing about RSD or treatments!! HOWEVER, I did get back @ 50-60% of my life!! It took about 1 year to fully heal and I do have limitations,due to the tpye of SCS that I have,but I will be able to just be programmed if I spread to other side as my SCS is the Cadillac!!!. The key is to have a good repoire with your Manufactures Rep-get reprogrammed as much as you need it as pain traveles and changes constantly. BTW-My SCS is Medtronic and my Rep is wonderful.
I have since started a Support Group in Louisville as I had no one to turn to when I went thru this nightmare.
In summary-I am Ok with the SCS,but recently have been having sensitivity at the battery site,and my spine always hurts where the paddle is implanted. I still take 60mg of Cymbalta for nerve burning and dilaudid for flare-ups. I was able to completely wean off of 3600mg of Neurontin a day. I was never told of a pain pump,and would have liked to have weighed that option,however the SCS has allowed me to regain some movement in my toes and reduced the swelling,so all in all I feel pretty blessed.
Hope this helps anyone who is considering this option and feel free to contact me if you need to talk.My best advice is to educate yourself as I knew nothing and was at the point of desperation and do not wish this on anyone-Be proactive-start Support Groups or Awareness Groups in your area Raise money for RSDA Org if you are able and lets kick this MONSTER-
True Blessings to all of you-Carol Dever

[Rrae]

For starting a support group ! Let me know if you have a website at Louisville. I would love to join.

You have been thru quite an ordeal! I too didn't know anything about a lamanectomy type of SCS. I wonder if my doc is gonna pull that same 'surprise' on me . He isn't exactly the easiest to communicate with.
I will be getting the Medtronic as well. I hope to have the good relationship you speak of. That certainly is key.

And you know, I betcha the reason they didn't offer you the pain pump is because it's hard to find a doctor willing to make that much a commitment. Just ask "LostMary". She had to travel far and wide, but it ended up paying off for her and she is doing great.

I'm wondering what is causing your incision area to be tender? Can you think of anything that may have caused this, such as getting bumped there? Or do you think there is an infection developing ?
Well, whatever the case, I sure hope it gets resolved quickly.
You've been through enuf.
So glad to have you on board !

Rae

[lostmary]

Carol.

You have been busy. I'm so glad you started a support group. THere just isn't anything out there for us. My pump was a St Jude (ANS). My rep was good, but as he wasn't a dr. he (the second one), did pick up on all my complaints about horrible pain from my incision site. It turned out I had developed (withing 3 wks of surgery) a MRSA infection that almost killed me and left me in a nursing home. Long story short, I'm fine. My scs incision site hurt so bad. It seems as if the scs can cause rsd to spread. I've got the pain pump and am in 7th heaven. I know there are quite a few people out there who have both the scs and pump. some others have the scs removed when the pump goes in. It all depends on what works best for you. Most drs. don't want to do the pump because its a long term commitment on the drs part. He's with you, and you with him for quite a long time. If you are not getting, or are having, more pain or the scs isn't working, please take things into your own hands and find a dr who does the pump. It is wonderful. The dr that did my 2nd scs was well know. He had been on OPRAH and was pretty famous. He hates the pump, will give pain meds for 2 2wks after surgery and not a pill more, and once you have the scs, he will not follow up nor treat your pain. Being a well known dr, or one of the best in the area isn't important. being understanding and willing to commit to you and your wellbeing is.

Kudos to you for being active.

Hugs
Mary

[edever34]

Hi again
I do not have a Louisville website,only on the RSDA site under support.

To set a few things right- I do know that both my Neurosurgeon and Pain DR. do SCS AND pain pumps,so that is not the issue. I was just never told about pain pumps and as explained earlier,I was totally in the dark at the time. Lost Mary ,I have read all of your posts and I am so glad that the pump is working for you,as being limited is not fun.

Secondly, my battrey site has only begun to have "sensitivity" to touch. Maybe it is scar tissue build up as some one suggested in prior post. I have no redness or swelling,fever etc. Kinda feels like the RSD Monster has found a new home-LOL

I really appreciate this new forum-If we can help one person ,with information and support,I will be happy.

Always here for all of you-Carol