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Old 02-10-2010, 02:29 PM
edever34 edever34 is offline
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Join Date: Mar 2009
Location: Louisville,Ky
Posts: 227
15 yr Member
edever34 edever34 is offline
Member
 
Join Date: Mar 2009
Location: Louisville,Ky
Posts: 227
15 yr Member
Default Scs

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
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