SCS - Horrible Pain Everything went wrong!

[Eddie G]

I should take a pic of my setup here. I have a queen sized hospital bed and a hospital food tray with room for my laptop. I can lay in bed and type comfortably. Im all about the comfort now!

No ...no bedpan. Im not that lazy.... well almost...

[ans]

OMG!

I'm so incredibly sorry to hear this. I hope you find a resolution. Of course doctor's won't own or apologize (liability). I can't imagine your pain.

(And I have my hopes pinnned on a spinal stimulator).

My very best ~ Allan

[kajari]

I posted this on another thread and remembered I had spoken to Mark concerning this thread so I will post this information here as well. I do not know if you recall but several months ago (about 6 months) I posted about the horrible experience I had with the implantation of my spinal cord stimulator. See original post above for more detailed information. In a nutshell, I was left with a partially flattened spinal cord, horrible banding pain around my chest, loss of feeling on the left side of my abdomen and groin area along with intermittent bowel and bladder issues....much more but those are the major issues. These problems still continue today. About 2 months ago the stimulator stopped working in my legs and started a horrible shocking sensation in my tailbone. The Boston Scientific reps have tried numberous times to adjust the unit without any success. To say the least, they have shut off the stimulator because it has stopped working as expected. X-Rays show normal lead placement. I am writing because I am left with a huge dilema. Since the stimulator is turned off I have had two surgeons state that I should have it removed. Has anyone else experienced failure of a spinal cord stimulator? Has anyone had it removed after 6 months being implanted. What would your opinion be, considering the horrible complications I had with the original surgery? Would there be a problem with scar tissue having it removed. I am really concerned with the complications I am still experiencing and am afraid if it is removed that further nerve damage may occur. I would love to hear what the group thinks about this situation. Additionally the surgeon who performed this surgery will not say a word about what went wrong with the original surgery that resulted in a T7 to T10 laminectomy days after the SCS implantation. No where in the medical records does it state there was swelling or hematoma etc... I have sent a letter to him requesting that he provide this information but I have not received a response. Reluctantly we have spoke with a few lawyers who have reviewed my records and each of them want to file a malpractice suit against him and some sort of negligent case as well. Also, to date the surgeon has not charged insurance for his surgical services or the cost of the stimulator or laminectomies performed. I am told that if the surgeon knows he did something wrong and then charges for his services it could be some sort of fraudulent wrongdoing on his part. Either way, I would like to get advice from some of you who have gone through a similar experience or have had to have an SCS removed for whatever reason
Thanks So Much In Advance for you responses,
Greg

[steve55]

Hi Greg. I only just n ow saw your story. God bless you man. Your story made me realize how my situation is a cake walk compared to yours. At least you have family to support you and you dont have to go it alone. Ive read that the human body does have the amazing ability to fix itself in time, to at least some degree or another. There is hope.

And if you can win this lawsuit, the financial worries will be taken care of so you can have peace of mind in that respect. Im not necessarily a big believer in medical lawsuits at a whim, but this guy really screwed up and you certainly shouldnt have doubts about getting compensated now that you cant work and will have future medical bills to deal with. Docs have medical insurance, he'll be alright.(Not that you care for his financial well being, LOL)But thats what insurance is for, cases like yours.

There is a book you may want to look into called "The brain that changes itself". I havent read it yet. A british Indian man I befriended at starbucks one day (he is some kind of world real estate tycoon) recommended it when I told him my current painful ordeal. He thought it might help, especially with hope. It looks interesting. Amazon reviews seem to rave about it.

Hang in there my friend.

[fuzzy]

Hello Greg.

What an ordeal!

I feel that you need the missing information from your surgeon so you and other surgeons can make an informed decison on your scs removal soon. If the only way to get this information is through a legal means you should go ahead for that reason so you have best chance at making the right decision.

I really hope you improve from here on out. how is your lower back and legs doing now after the scs was turned off?

Like said before there are many here who feel with you and have experienced similar pain. Your story gave me flashback and I still have many neurological issues as well were I keep wondering why and from where in my spine, including ice cold sweaty burning feet, those 10 minute sit only pee sessions as the only way not to pee in my pants, and but then it is nothing compared to your ordeal. You are strong and you have a great family. I hope the collective wisdom here is helping you. I really wish you the best healing in the future.

[kajari]

The stimulator did a pretty good job of reducing my leg pain by about 25 percent until all went wrong and started shocking my tailbone. I could never get it adusted correctly to work any better. Ever since it has been turned off I am back to the pre-surgery pain, actually a bit worse, radiating down my legs into my feet. It is a horrible burning almost like a hot rod is being shoved down my legs. The SCS never reduced the pain enough that I could stop the pain meds but it made it to where the pain meds were more effective. As far as my back pain....after the SCS surgery and emergency T7-T10 laminectomy I was left with horrible pain banding around my chest just under where my pec muscles stop. I was told that it is coming from T7 T8 area of the spine. This banding has been horrible and if anyone touches this banding or a big portion of my T-Spine Area it feels like I am being burned with a blow tourch. I have to be really careful when sitting in a chair or on the couch because sometimes the pressure from anything will cause this horrible feeling of being burned. The pain radiates around my chest but also radiates up from my T-Spine into my shoulder blades like a "V" pattern. I am really reluctant about the removal of the SCS because I could not bear to feel anymore pain in these areas and I am concerned that the surgery may worsen these symptoms.

[Maria]

Kajari
I know this may not make you feel any better however if just having one more person aware of what you're going thru at least from reading what you wrote and hoping that your painful situation will become much better either with or without some further intervention just know that's what I'm definately hoping happens for you and ASAP. Wishing you far better days and soon~ Maria