SCS - Horrible Pain Everything went wrong!

[kajari]

Please excuse my typo and grammar....in excruciating pain. On March 22, 2010 at 10:30 a.m. I went in for the start of my SCS Spinal Cord Stimulator trial surgery. Surgery at 12:30 p.m. and ended somewhere around 3:00 p.m. I awoke from the surgery with some discomfort as expected but some suttle surprises. To my dismay the orthopedic surgeon had installed the permanent SCS paddles which were around T8/T9. Since I have 4 younger children at home it was decided to keep me overnight in the hospital to give me some quite time to start the healing process. The surgeon stated the surgery went fairly well but he had to make a few holes in my spine for the paddle to fit properly.Around 9:00 PM that night I started feeling a good bit of discomfort in my back which the nurses said was normal and they administered some IV pain meds. Around 2:00 in the morning is when things went all wrong. I woke up with excruciating pain in my middle back and had a HORRIBLE banding of pain that went from near where the paddles were and wrapped around my middle section. It was like a horrible hot knife that was being stabbed around my ribs. The pain was 15 to 20 plus on a 10 pain scale. It was so bad that I was banging my head against the wall, pacing from wall to wall and could not get comfortable. The pain was so bad that they called the on call surgeon who said to give more IV pain meds. About an hour or two later I was able to lay down on a hard couch type bed in the recovery from and with some Zanex I got about an hour or two of broken sleep. Next morning pain had subsided a bit but my heart rate was over 145 BPS and they could not get it down. After lots of pain meds they were able to get it down around 110 BPS. Next day pain was a bit better so they discharged me from the hospital. I still had horrible pain banding around my chest, lost feeling in my left side, abdomen, and my testicles & groin. Loss off feeling in groin causued me to have to urinate by gravity since I could not feel the urine flow. Pain got worse at home that night and I started urinating on myself and hand not had a bowel movement in two days. I got about 2 hours of broken sleep that night only getting a bit of comformt on a hard couch in the living room. Around 6:00 AM I woke up with the most excruciating pain I have ever felt in my life….pain banding around my ribs and horrible pain in my t-spine area of my back. I tried to get up off the couch and collapsed to the floor in pain. Could not move or get up from this excruciating pain banding from the middle of my back around my chest, urinating on myself and still hand not passed a bowel nor felt a need to have a bowel movement. Paramedics were called, Blood Pressure was 186/116 due to pain. My wife said I was screaming louder than she thought was humanly possible. Was taken to the hospital by paramedics with morphine drip to control the screaming/pain. Surgeon ordered a CT Mylogram with die. Was in so much pain they could not get me to lay flat on the table. Docs decided to put me on constant IV Morphine and then Dilaudid. I was giving so much pain meds I do not recall many of the events (My wife is dictating). Surgeons took me in for emergency surgery. Performed double laminectomy at the area where the ortho placed the SCS Leads. I still do no know whey but surgeon is being very reluctant to share information. He removed to huge pieces of bone from around T7 thru T9 and also for some reason went ahead and installed the permanent SCS battery, etc. I woke up with TOTAL Amnesia which they attribute to the incredible mount of pain and stress that my body had been subject to. Still no feeling in my groin, scrotum, lower abdomen, and left side. A day or two later they discharged me from the hospital even though I was still having the bad banding of pain from mid back around ribs in front. Next day pain got so bad (Pain banding again) that I went in to see my pain doc. He took one look at me and said that there was something horribly wrong and due to me urinating on myself and no bowel movement for over a week that he thought I was in spinal cord compression distress. Hospital only 10 minutes away but he demanded that I be taken by ambulance to hospital. Admitted again, and was placed under General Anesthesia for CT Mylogram (due to my pain and inability to lye flat). Ct Mylogram showed some flattening of my spinal cord now and neuro states nerve damage. How could this have gone so horribly wrong and the ortho wont tell us what went wrong. States that the pain banding may last for a few years and may never go away. I feel so guilty for wanting to get rid of the leg pain and now these horrible complications have made things so much worse. I don't even know how to pick up the pieces from here and am scared to death of where to turn. I do have an a appointment with antother neuro this week but I just cannot even begin to think when or if anything can be done from here. I am an absolutle mess both in pain and emotionally a wreck.

[Jim M2]

kajari,

Truly you are living a nightmare. It's difficult to read what you write. You can count on the Ortho to never fess up, even if what he knows his information would help your other doctors treat you. Go up to Louisville to a neurosurgeon named Wayne Villaneuva. See if your wife can find him on the internet. I hope your situation improves.

[fortitudine]

Dear Kajari,
I am so, so sorry for what you are going through. We put our trust in surgeons, and when things go wrong we are often left completely on our own to solve the problems. Not fair.

I hope you can find some good help in your new referral. If not, keep on looking.
Good luck.

[Maria]

Kajari,
Having had a failed surgery that yielded miserable and even horriblly painful results for years afterwards (5) I can relate to where your head is at right now even if my results were nowhere as bad as yours.

I don't think you will get answers from your surgeon.. I'm not sure he can tell you why he did the permanent implant vs. trial except that he made a mistake. Just reading about touching that thoracic area makes me think there could be or would be swelling and spasms and involement around spinal nerves at involved levels perhaps other things that could be causing that banding feeling...

Make sure you have the best opinions available to you and best PM you can find to help you thru this and take it second by second and minute by minute in terms of the pain and getting thru. Don't beat yourself up because you went in for a trial and came out with something you didn't expect so even tho you put yourself there you did not get what you expected.

I don't know whether you should consult with an attorney or not altho I wouldn't rule that out either re obtaining medical records and the surgeons actions. Then again I'm not sure what the consent stated re the trial such as if the surgeon was given permission to do further work based on findings once he went in....

Any which way I feel your pain and emotional status and really wish you the absolute best with your ongoing recovery from all this. Hang in there and vent away.

[mmglobal]

kajari, thanks for taking the time to talk to me today. This is absolutely one of the worst horror stories I've ever heard. I'm so sorry that you and your family must endure this and I hope to hear that you recover well.

Thanks for posting here. Everyone must understand that even the procedures that seem relatively benign still come with substantial risks.

All the best,

Mark

[Gil Denis]

Hi Kajari

I am so sad to read your story, I pray you get some relief soon.

Be strong I will pray for you

All The Best

Gil