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

[Maria]

I didn't mean that I thought you surely had reason to seek legal representation rather that if you weren't able to get your records and really wanted answers at least in terms of your records that might be an avenue of recourse.

Unfortunately spine surgery comes with no guarantees. Signing consents prior to surgery we usually give the surgeon the right to make broader decisions based on findings once inside and act upon this so not sure if this is what happened with your case "or what"...

I hope whatever was done for whatever reason it will stop hurting so much and continue not to hurt so much or at all if that's possible. Good luck and please keep us posted.

[mmglobal]

Kajari... any progress? I'm anxious to hear what the doc and reports have to say... Mark

[kajari]

It has been a few weeks since my last post about the complications I am having from the Spinal Cord Stimulator and Multi-Level full Laminectomy. I was in high hopes that the crippling pain that I am now experiencing from the Laminectomy would be getting better with each passing day. WELL I WAS WRONG! I had a week where the pain (banding pain around my chest and thoracsic pain) did not get any worse or better and I thought that I might be able to deal with this type of pain with the help of medications. Over the past week the pain has become increasingly worse and is sometimes worse than anything that I have felt so far. This past week I noticed a lot of pressure in my thoracsic spine where the laminectomy's were done. My wife looked at my back and said the swelling is really bad...it is very noticeable over the t-spine but also goes out to my shoulder blades. The banding pain around my chest has become unbearable and I have now started to have severe contractions from the area of the laminectomy around my chest. It feels like someone places a belt around this area and tightens it as hard as they possibly can. It is so bad that it takes me to my knees and takes the breath out of me. This comes with no warning and the pain is HORRIBLE! I do not think it is an infection since my temperature is normal. I have also noticed that my feet get REALLY cold and start to sweat...this happens even when I am laying down on the couch. It has become so bad that my wife has to assist me in getting into/out of the bath, she has to bathe me, help me in and out of my recliner, and has to pretty much help me with most of the simplest tasks that I was able to do before the surgery. I am also dropping things constantly. My wife has to get my medications for me now since I have dropped them on several occasions. I have also started getting quick "jolts" from the SCS. The jolts are really quick and happen in my lower back and middle back around my t-spine. The SCS is still doing a good job controlling the pain in my legs and is about 70 percent effective. Ice and Heat do not have any affect on the swelling in my thoracsic spine. I still have lots of numbness in my right side abdomen, numbness in my groin area, and do not have any feeling when I urinate. I have to concentrate really hard to get the urine to flow and it takes about 15 minutes to drain my bladder. My bowels are working as expected now.
I have an appointment this week with the Boston Scientific rep and the surgeon who performed the surgeries. Ever since I had the SCS surgery and the emergency laminectomy's there always seems to be a gut feeling that something is not right. I also forgot to mention that it feels like there are rocks/pebbles in my back where they did the laminectomy.
Is there anyone on ISPINE.ORG that has experienced anything like this? I am getting really worried since it has been 1 month since I had these surgical procedures and I would expect things to be getting better by now not getting worse like I am experiencing now.
Mark, I have been able to get copies of my medical records from the Hospital but not from the surgeon. I just received these so I am in the process of going through them. I did find out from the records that I have read so far that the Laminectomy was not at two levels but three and 1/2. It was done at T7, T8, T9 and half of T10. There is also conflicting info in the records. In one record he states that there was not a hematoma when he did the laminectomy but in another report it states the he had to evacuate a hematoma in the T-Spine. URGGG...still trying to get all the info and find out what really happenend during the emergency laminectomy. I still do not have a reason as to my he did the laminectomy or what went wrong to cause them to do the emergency laminectomy.

Take Care,
Greg

Take Care,
Kajari

[mmglobal]

Can you get to someone who specializes in thoracic surgery?

[kajari]

Mark or anyone on the list.....
We are having to move to Western KY at the end of May so I will be close to my family for support and help. Does anyone have any good recommendations for a Neuro Surgeon near Nashville? We will be about an hour from Nashville, TN. Any recommendations would be greatly appreciated.

Take Care,
Greg

[dshobbies]

K,

You have a suspician that something went wrong? Let me tell you, something is wrong, very definitely. First suggestion, get yourself fixed. Something is terribly wrong and Dr. Regan is Los Angeles would be my first recommendation. Charge the whole thing if you have to and pay it back from that lawsuit against the doctor who did this to you!!!!! You should not be in this much pain - period and your doctor should be doing his best to help you through whatever you have to go through - including getting you those records. My anger at this doctor is at the boiling point.

Your symptoms seem to be bad enough that this is now an urgent situation. Please do not wait.

Dale

[Maria]

Follow Mark's advice re finding the best thoracic spine surgeon you can and maybe find an attorney that can help you expedite your care/needs.

I don't know that multiple level thoracic discectomy is the standard of practice in the community for what your original complaints were or if the surgeon can justify his surgery. Sounds like the surgeon is keeping his records unavailable to you for a reason tho of course I could be wrong.

I don't mean to send you on any wild goose chase as your main goal is to find someone to attend to your immediate spinal needs so remain as focused as you're able and I'm so sorry to hear you're going thru all of this..

[Jim M2]

K,
I like what Dale and Maria say. The immediate need is to get your situation stabilized. Your symptoms are extreme. Your wife will have to take charge and be very aggressive toward getting action out of these doctors. I would think that when you talk with the doctors present your case in an objective manner without any hint of placing blame. They don't like to get involved with tough cases like yours, especially if they think you are prone to place blame and bring lawsuits. I'm praying for you.

[Crystal33]

You need a top spine doctor, an ethical one, and willing to critically review and fix another doctors work. This organisation is headed up by a spine specialist.

(Dr J Regan is reputed top thoracic expert, uses minimal video system of surgery. don't know if he is member of the org.)

Association For Medical Ethics

[Crystal33]

This is the specialist branch of the org. for spine patients.....
http://ethicalspinesurgeon.org/

[Maria]

Kajari
I know this has been a terrible struggle for you, your wife, your family and the pain is horrendous. I can only imagine what you're thinking and feeling however the one thing that stuck w/me that Jim just mentioned above is leaving any blame re the surgeon out of a consultation w/another surgeon.

As best you're able present yourself and your symptoms as neutrally as able with regard to the surgeon himself. I remember now how after my failed 2nd spine surgery when I saw other surgeons for consultations I had to be very careful not to lay blame because I did feel for quite some time that he must have done something wrong or just not so kosher. Also I was unable to obtain my surgical records either and it was very difficult to even try as this was a WC case. WC didn't help me w/that end either I have to say even tho WC itself cannot be sued for anything.

I know you have to be emotionally spent with all this going on and that's OK to show as well as all your symptoms. Whoever is seeing you will likely formulate his or her own opinion as to what happened and you won't even have to go there with was something not properly done by the other surgeon.

You can always pursue the legal end if you so desire tho just try to get yourself medically/spinally taken care of as best able.

I sincerely wish you and your wife both additional strength and endurance to get thru all this. Just know you have to try to move forward as best you're able.

[Eddie G]

I know how you feel. You at least have a wealth of information available here and you can always pick Marks big brain.
I have been searching for my pain generator for almost 7 years now. I put alot of films online for different doctors to peruse. The more eyes the better.

Even House has some assistants.

I hope you feel better soon. Lifes too short for this crap....

[kajari]

I just wanted to take a few mintutes to let you all know that I am in too much pain to write much more right now. It takes every drop of energy I have to sit at the computer and struggle through the pain. I will write more in the morning when I have a few minutes after some sleep (broken sleep at that). Things are pretty bad right now but I have my wife and four children to help me pull through all of this. They give me the strength to get through each day and I thank God for their support each and every day. More tommorrow.

Take Care,
Kajari (Greg)

[Maria]

Greg,
I used a laptop and still do for most of my posting as I still cannot sit long at the computer w/o feeling the repercussions.

Glad you have all that love to pull you thru each day. Hang in there!!!

[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

[kajari]

Thank you so much for all of the encouragement. I just got off the phone with my Boston Scientific rep. They are no disagreeing with the remove of the SCS as they have done everthing possible to adjust the device without any success. I think I am at the point to where I need to put all of my fears, which were generated from the SCS surgery that caused these horrible complications, and go ahead with the removal of the device. The hard part is going to be finding a Surgeon who will take it out. Since we fired the surgeon who did this to me it will be even more difficult for any surgeon to speak with him and get the real truth about what happened or what mistakes were made.

Take Care,
Greg

[kajari]

It has been one year since the implant of the spinal cord stimulator when the surgery went horribly wrong. After months of consulting with a neurosurgeon I have decided to let the surgeons remove the spinal cord stimulator. The banding pain around my chest has become a lot worse about 7 on pain scale and the loss of feeling in my abdomen and parts of my back has become wide spread. Everything has become a lot worse. Consulting with my neurosurgeon he things that removing the spinal cord stimulator may alleviate some of this pain and loss of feeling. He will not know how bad the scar tissue and what exactly is going on until he does the surgery. He is also worried about my dura since the last surgeon accidentially cut open the dura which caused me to loose l large amount of cerebral (sp) fluid ultimately causing the surgeon to fill the hole in my dura with a special foam that stopped the leak. My surgeon told me that because there were problems with my dura the risk of problems with this surgery is a lot higher. I do now have any hopes of alleviating the pain after what happened to me with the last surgery in March 2010. I am getting desperate as the pain has become quite unbearable. I will be having the surgery this Friday (April 8th). I will update the list after I am home and can sit long enough to send an update

[dshobbies]

Kajari,

You are indeed living the nightmare that we all feared when undergoing spinal surgery. Though I do hope you someday find out what went so wrong, my much stronger wish is that your pain is alleviated and your sanity is restored to normal. I can't even describe how horrible I feel for your circumstances.

Maybe by next week the sun will shine again. My thoughts are with you -

Dale

[kajari]

Thank you for the nice response. The surgeon did tell me one thing that he thinks the last surgeon did wrong. The surgeon accidentally cut a hole in my dura during the surgery. When he cut the dura they filled it with some type of surgical foam to stop the leak. Two days later the surgeon did an emergency laminectomy from T6 to T10 and at the same time he implanted the permanent SCS leads. The leads were placed directly over where he had cut the dura. The Neurosurgeon I have now thinks that because the last surgeon placed the leads over the tear in the dura that the scare tissue formed from the dura and partially around the leads. He will have to be very careful to remove the scar tissue without damaging the dura during my surgery this Friday. He promised to document any of his findings for me. I really want to know what the last surgeon did to cause so much damage, pain, and loss of feeling.

[Maria]

You found someone honest that is telling you what may happened and if he actually documents findings and tells you about them that's good too. I hope if he does surgery you'll have some much needed relief and soon. I'm sorry to hear how badly things have been going for you. Please keep us updated.

[kajari]

yes I hope it is well documented as well. I have to be in for surgery at 6:00 tomorrow (Friday) morning. Hopefully I will be able to post in a few days that the surgery we well and I have some relief. After what happened to me with my last surgery I find it hard to have any high hopes or expectations for a good outcome. I will go into the surgery with a positive attitude though.

[mmglobal]

Good luck... please keep us posted. I'm hoping to hear about some positive progress in this horrific story.

Mark

[dshobbies]

Good luck tomorrow. We're right there with you

Dale

[kajari]

It has been a while since I posted but I had the surgery to remove the SCS from my spine and battery from my buttock. I woke from the surgery with the same symptoms. The horrible banding pain around my upper abdomen (around where my diaphram is). This pain never goes away and at times I have a horrible cramping around the area. It feels like someone tightens a hot belt around upper abdomen/lower chest. The pain brings tears to my eyes. The surgeon also had to do a revision laminectomy from T6 thru T10 but the surgical report does not state why. The surgeon states that he had to hollow it out more and "remove some rough areas". He also states he found a strange geletanious substance surrounding the SCS Paddles and had a hard time removing it to get the paddles out. My right leg going paralyzed has become worse and went from two or three times a week to almost every day. My right leg will just give out and I fall to the ground. I walk with a cane but I am unable to catch myself. Yesterday I fell harder than I have yet and when trying to catch myself I felt a horrible burning sensation in my groin area. I now have what appears to be a hurnia....just what I need with all these other problems. This has been such a horrible experience and I am at my wits end with all the surgeries an horrible pain. This has turned into a never ending cycle of pain, pain medications, and even more pain. I was in such high hopes that removing the SCS would remove some of the pain around my chest but those hopes faded so quickly after surgery.

Greg

[dshobbies]

Greg,

I'm so sorry the removal surgery actually worsened your condition. Personally, I'm furious at what happened to you and it's time for other opinions and a good lawyer. This should never have happened. I'm curious as to what your doctor has to say and why, the reason for redoing the lamis isn't in the surgical report.

I do wish you well and hope that someday the pain does subside but I fear it will be at the hands of more surgery.

Dale

[kajari]

I find it hard to even think about another surgery right now but when you are in this much pain (radiating in both legs..right worse than left, lower back pain, middle back pain and the pain radiating around my chest) you would do anything to have the pain go away. Just like most sureons, my current surgeon wont say too much as far as implicating the previous surgeon who did this all to me. Everyone is afraid of being caught up in a lawsuit. All I want to know is what happened and what can be done to fix this whole mess. My whole life has been turned upside down and the pain is taking over my life. I just want to get a little relief and be able to concentrate on something other than the pain or how I am going to get from one point to another. Sometimes I think I would be better off paralyzed so I would not feel all of this pain.

Greg

[mmglobal]

Kajari, I'm so sorry to hear that your troubles continue. I seems so odd that they can continue to stonewall you and not say what occurred in the surgery.

While compensation won't improve your life much, I hope you are able to get some... any lawyers interested in taking the case?

Mark

[Maria]

Kajari,
If we're talking about US surgeons not saying anything that seems perfectly normal to me, unfortunately. As you state one doesn't want to say too much that might involve perhaps himself getting into the midst of a lawsuit w/he said she said... sadly.

I know that feeling of just wanting to know what was done/what went wrong. I felt the same way after my failed 2nd spine surgery but then like you I also just wanted relief as the constant horrific pain (no extremities giving out) I wished was mind numbing but it was mind screaming/bending!

I do wish you some relief however it happens and perhaps it's time to talk to an attorney if you've not. Compensation may not be much if any relief however it may be one way to squeeze some answers out of somebody (supoena for the surgical records).

[jsewell]

Kajari,
I am so sad reading your plight. I am not surprised that the surgeon gave you no answers. During a VATS surgery, my right phrenic nerve was damaged (i know only do to my investigating) and i am left with 50 % lung capacity. The surgeon claimed nothing happened, yet in the surgical report it states they had problems with my lung and oxygenation. That was after T7-8 was operated on. Everything fine before that point. This was with DrJohn Regan , who is supposed to be one of the best . He never admitted anything or helped with anything either. I know it was an accident, yet if i had been helped last year, it could have been repaired. Now i am told there is too much scar tissue in there to attempt to free the nerve.

I had the surgery for the relief of some horrible thoracic pain so i feel i have experienced some of what you are going through , just not all at once. I just had lumbar/thoracic surgery last week and am suffering from the horrible nerve/leg/buttock pain at this moment.

I pray you get some relief and this gets figured out, but don';t be surprised if you are the one who has to do it. Not that nerve pain is easily fixed, but i tried in my case. My case was more clear cut to me , but not to the doctors!!!
WE have not talked about pain management. Are you under someone's care? You sure need to be, it really can help. When i was at one of my worst periods pain management was a life saver.
Sorry you find yourself in this position
judy

[Hooch]

Just wanted to say Hi and offer some support, what a fkin disaster of a situation for you.

[kajari]

Thank you for all the thoughful and caring response. To answer some of the questions. Yes, I am under the care of PM docs as well. I have been with PM docs for over three years now and have been through the ringer with medications. I am on a mixture of nerve medications (Neurotin and Lyrica - both being used because of a study that was performed at a hospital in Colorado Springs, CO), pain medications and meds to help me fall alseep. I usually only get a total of 2 to 3 hours of sleep at night due to the extreme pain in my back and hypersensivity of my nerves when something touches the banding pain around my chest. I was seen by my ortho two days ago and I am getting the same answers as I usually do. They are telling me I have spinal cord and nerve root damage along with scar tissue build up. Even though my right leg is going paralyzed more frequently my ortho thinks this not out of the ordinary considering the damage that has been done. I cannot get a straight answer about what actually caused this damage because he does not want to get caught up in what the previous surgeon did to me. He is afraid to offer any surgical or medical treatments due to the severity of the damage and I am told I need to wait a few more months to see if things get worse before he will recommend anything. I cannot lay on my back due to the severe pain so I will need to be anesthesized to have any further MRI's or CT scans. This has turned into an absolute nightmare. I really am grasping at any hope but cannot seem to get any relief or help with the pain and severe symptoms. I am stuck in a very bad situation and cannot seem to get any straight answers because these surgeons do not want to implicate the previous surgeon and face being caught up in a lawsuit. It is sad in the USA that it has come to this and every doc is afraid of being caught up in a malpractice suit. I know I have a pretty good case against the previous surgeon but if I even start a malpractive lawsuit there is not another Ortho or Neurosurgeon in the USA who will see me due to their fear of being caught up in a lawsuit. So I lay on the couch an pray for some relief and hope that something magical will happen to make this all go away or at least 25 percent of it. I deal with the leg pain, back pain, sciatic nerve pain, thoracic pain, the banding pain around my chest and the hypersensisvity to any touch around my mid section and t-spine. It is almost more than a person can take.... I would not wish this on my worst enemy. Thank You again for all the thoughtful and caring response. Take Care.......Greg

[dshobbies]

Greg,

My heart breaks as I read about your circumstances. I don't even know what to say -

However, if you decide you do indeed want to bring a lawsuit against your doctor, you can find a good attorney and he can then either recommend doctors for you to see and/or subpoena records. I'm sure this is the not the first time doctors have been reluctant to 'get involved'.

I am truly, truly sorry. This is absolutely horrendous-

Dale

[Maria]

I think you're getting ahead of yourself as I do think there would be another surgeon in the US and more that would consult w/you as well as perform surgery on you. You'd likely have to sign legal documentation releasing them from liability which can be done with regard to current and any future lawsuit regarding your spine though that in itself can muddy the waters re current findings and changing anything anatomically then later contemplating a suit.

So if there was ever a time to try to initiate a suit it would probably be now with the surgeon while you are in the current situation that you are w/the current findings and no other invasive procedure of any other kind being implemented.

Please think about this because you may be forfiting something that you could potentially gain and meanwhile perhaps allow the body to try and recover/compensate on it's own no matter how brutal this feels.

Then in time someone could well be willing to perform either surgery or implant of some sort for you.

There is always the option to go out of the country if you're able as well and quite possibly if you gained some $ from a lawsuit that would be a viable option for you.

Not trying to force you into anything just trying to give a different perspective. You may just decide all this would be bad karma and is too much for you to deal with emotionally and/or physically and as one who spent way too much time in bed for years after my 2nd surgery failed re more pain than I ever imagined possible (and it sounds like nothing compared to yours and others I have read about) I can certainly understand that point of view.

My case was WC so I was in litigation re both my spine surgeries (different surgeons) and surgery failed in '92. I considered suing my surgeon though unlike you doubt I had anything more than bad surgery bad technique perhaps to go with and then had scar tissue develop so that's always used as a reason for more pain ... anyway found a new OSS several years after this happened who offered surgery and found other surgeons as well willing to perform more surgery.

In my case one cannot sue the WC system in this state and getting copies of surgical records can be near impossible let alone finding someone that could take a case against WC (probably more impossible) ... I'd have really tried however if I had seen an attorney and he or she thought I had an airtight case.

[kajari]

I dont know if I even have the energy to even think about bringing suit against the other surgeon right now. My case is also a WC but it is a Federal WC and as much as I might win in a suit it would all go to pay back the hundreds of thousands of dollars that these surgeries have cost. Money isn't even of importance right now as all I want to do is fix this whole mess the previous surgeon has caused. I just got back from my PM Doc. He checked my legs and the right leg that is going paralyzed is extremely weak and has lossed muscle mass (is a lot smaller than my left leg). My right leg has started twitching and shaking when I stand or walk which is of a big concern now. The PM doc wants my surgeon to do further studies and MRI but I cannot have an MRI without being anesthesized because I cannot have anything touch my back or mid section or lay down without extreme pain and burning sensation. I do not know how they would do an MRI while sedating me. This is just getting quite unbearable and the pain has gotten so much worse. PM Doc upped my pain meds AGAIN and that just is not an acceptable solution to me cause these pain meds just make me feel sick and are poisoning my body. The amount of pain meds I am on now is frightening....would probably kill an elephant. It is a never ending cycle of more pain...increased pain meds...more pain...increased pain meds. There has got to be a solution to all of this horrific cycle and torment that my body is enduring. No one really realizes how much of an impact an injury and then a mistake by an incompentant surgeon can have on your life. It can destroy your life as you know it and that part of your life is gone forever.
Take Care,
Greg

[kajari]

Maria and all, for all of you who know the legality of medical issues I forgot to mention that the surgeon who did this to me last year NEVER charged for his services or for the cost of the spinal cord stimulator. He had one year to charge federal WC for his services. His one year ran out April of this year. There is a legal term, which I cannot recal at this time, that refers to a physician who knowingly makes a mistake or error during surgery and then charges for his services. By him not charging for his services it puts a HUGE RED FLAG in the air. It just makes me so angry that he did this to me and then zipped his mouth shut once things went horribly wrong because of his mistakes during surgery. ANGRY, IN PAIN, SUFFERING, the list goes on and on and all I want to know is what this surgeon did wrong so just maybe another surgeon can fix his mistakes. Thank you all for listening to me rant and for all of the support and wonderful posts.

[jsewell]

Greg Rant all you want, you can see by my posts that i do for sure. I have past posts ranting about DrRegan and my pulmonary problems. He basically left me in PACU after surgery where i ended up almost dying adn then was sent to ICU when stabalized enough. His phone message on my phone (not my husbands, who he never talked to) saying about Mrs. Sewell, everything is fine. I stopped breathing and was on a respirator and everything was fine. You can see i can still rant at any time about him.

Did you ever see your surgeon who did the damage after the surgery? Some of this is just my curiosity.
I also wanted to let you know that the taking of pain meds seriously reduces your testosterone levels so you should get yours checked and get an endocrinologist to get you on testosterone if needed. Even as a female i am replacing it daily as i too have been on pain meds for 3 years +. I also have endocrinology problems so i have an excellent research doctor who checked my levels years ago. Just trying to get you to feel as good as you can and it might help a little with the muscle weakness . I realilze the nerve damage is doing most of it, but the testosterone would not hurt if you are deficient.

I considered a law suit against DrRegan and still have not dropped the idea entirely, but i have been told the same thing that i would not get another doctor to treat me as they would fear a law suit. Doesn't that just suck!!!!
judy

[dshobbies]

Greg,

We all hear you - ALL of us. We've all lived in pain and know how it both physically and mentally takes your life away.

Whatever you need from us, we're here. I know you feel all alone but I assure you, you're not.

I know your life is filled with Dr. appointments and tests but please keep us posted. We care so much more than you realize.

Dale

[Maria]

Greg,
I hate to hear how badly you're suffering and while I definately understand your position re not having energy to deal w/a lawsuit and also the consideration that perhaps no one would work with you again plus what you really want is just to know what is wrong so you could perhaps have it fixed I still want to include this link as the statute of limitations is 2 years from when you had the offending surgery to file.
Surgical Accidents & Mistakes | Medical Malpractice Lawyers

This really could be for anyone considering a suit so just consider it that not being pushed in any direction.

I agree re BIG Red flag w/not charging for surgery. It could be the surgeon is the only person that knows what went wrong altho sometimes other persons in the OR that are assisting can know as well but there is less chance one will speak/admit something unless either pressured in court of law or leaving that employer and perhaps that field.

So sorry that you are suffering as much as you are and of course I will now cease bringing up anything more along the lines of lawsuit and just ditto to what Dale said re vent away as we surely do understand here.

[kajari]

The statue of limitations for this runs out next April so I have some time to think about all of this. Boston Scientific was in the OR but they will not say anything. I talked to the rep but they are bound by strict confidentiality guidelines which I understand. I am in the process of trying to get a referal and approval to see a Neuro at Vanderbuilt Hospital in TN. I need someone else to look at me and recommend further testing, look over all my imagining, etc. I really need a second set of eyes to look at all of this and see what they have to say. I may need emergent care though as the numbness has traveled to my groin today (though it is not constant) and I know this is a bad sign. It is just never ending but I will get through all of this eventually. It is just nice that I can vent all of this on ISPINE.ORG sometimes it relieves a little of the frustration as I am sure many of you are aware. Take Care, Greg

[Maria]

Greg,
Good luck w/this and that sounds like a good plan as well as getting emergent care as necessary. I'm sure you're aware of the condition known as cauda equina and the symptoms so should you think you might be experiencing something leading to that head off to the ER STAT! Otherwise I do hope you'll be able to get that referral and some further insight into what is going on.

[jsewell]

Greg I hope that referral comes through for you and quickly. I hope the groin issue is just a passing feeling and nothing else happens to you. You have your hands full with your own body as it is and that house full of young kids. I'm sure you are a great dad . I am in a rush today , taking one of my kids to his first job interview. I need to iron the clothes. I don't iron very often and don't want to mess anything up.,
judy

[dshobbies]

No comment on the ironing of clothes just 2 weeks post op!

[jsewell]

Hi Dale,
i have been out all day shopping for the clothes too and grocery shopping, with a driver and my kids to carry and put away everything too. I' ve been very bad and not spent any where near enough time resting . So i'd better not complain of the continuing pain!
judy

[Maria]

Judy,
I just can't believe you're this active so recently post op. I'm not even sure what you had done though so probably shouldn't comment. Everyone has a different ability to heal and perhaps yours is more rapid? Let's hope so. Maybe you can rest now that you've gotten all that stuff done~ and good to hear you weren't doing the driving or carrying of groceries tho a slip and fall in the grocery store or anywhere would be a huge "no no" as would any sudden jolting vehicular motion so please be careful.

take it easy ...

[jsewell]

Maria
I am not totall sure what i had done either., Seeing i saw my doc for injections at the surgery center only , i need to have the discussion with him on monday at my first real post op appointment.
I know he opened my back up from T7 thru L4. The fusion was extended down to L4. He removed some loose hardwear and screws, took out some insturmentation and may have re instumented some areas at least that was the plan before surgery, He also straightened out my back some more (resulting in better lung capacity) A big surgery and i have been a big dummy as far as thinking back to the last 2 1/2 weeks. Maybe i will start acting like i just had major surgery now
judy

[Maria]

Judy,
I recall you had a lot of hip and or nerve type of pain shortly after the surgery which sent you to the doctor to get the injection and since then you've seemed to be able to do quite a bit more so it sounds like the injection was pretty helpful tho maybe has helped cover some of the pain that would normally have kept you a bit less active this soon post op.

If you're this good to go this soon after surgery I surely want the name and location of that spine surgeon "just in case"!

Hope you can catch some rest.. sounds like you've had a lot on your plate emotionally and yes were more active than maybe you should have been though perhaps it wasn't impressed upon you to rest after the injection (following such recent surgery) either so you just did what you felt you were able to do?

Hope your pain levels stay low and you're healing well. Maybe the being up and active helped your healing.. who knows, probably did help your lungs!

[jsewell]

You are right Maria and soemtimes i forget these things. but a few days after surgery i noticed the nerve leg, thigh hip pain was awful which is why i had the injectiions,. actually my right leg feels almost normal., It is now the left side that is driving me crazy and keeping me on pain killers and neurontin and muscle relaxers. I guess i am asking too much, it is not even 3 weeks out yet.
my doc is awesome and a wonderful person to boot. DrWilliam Costigan in Pasadena Ca.
I rested all day yesterday except for a walk around the block with Buddy. It was hot and painful!!!!! I plan the same today except i need my son to take me to the grocery store too. No food for the kids, Jeff is out of town .
judy

[Maria]

Judy,
You're way more active than I was afer both of my discectomies even! Too bad you cannot just give your son the list of what you need and $ and have him pick it up for you vs you going to the grocery store. It doesn't actually sound like you had a fusion done at all .. more like hardware out or something of this nature (at least based on your activity level!)! That injection must really have really hit the target at least to cover any back pain that you might have resulting from your surgery!

[jsewell]

Hi Maria,
We have hijacked this thread and should continue after on my aug 8th surgery one. I am going to post tomorrow after i see the doc. I did have fusion from L2-L4 for sure. The pain in the legs (left more than right) is still bad enough that i can't drive. but my husband was supposed to return from a business trip on Friday, he extended it to Saturday to visit his cousin. He didnt come home last night and is now coming home today. NIce because i have school and don't have a ride so i have to drive which i am not at all comfortable with ,. I didn;tell the boys they would be so mad at him again. Tim only has his permit and RAndy is a whole story for a phone conversation and Jamie had to work at 7am. so i am stuck
judy

[ADR seeker]

That surgeon would not even make good butcher. He's lucky he didn't butcher me because I would have butchered him so that he can't butcher anyone else.

Sue him and everyone involved and if you want some do it yourself justice do it. You'll save other victims.

[kajari]

it has been a long time since I last updated this forum with what is going on with my pain and struggles with my lumbar and Thoracic. I have been slowly getting worse and the pain is relentless without any relief. I am still struggling with the horrible banding pain around my chest at the T7 level, my legs have become increasingly weak and most recently I am experiencing bouts of uncontrollable bladder.....just to name a few. things got so bad that I had to go to the ER where they did an MRI and finally the doctors can see that all of this pain is not just in my head. here is a transcript of the mri results of my thoracic and I have also attached s4ome images for you experts to see and advise me of your opinions. MRI THORACIC FINDINGS: At T7-T8 there has been prior laminectomy. There is a T1 isointense and T2 low signal structure in the laminectomy bed measuring 6.1 centimeters in length, 1.7 centimeters transversely and 1.1 centimeters in AP dimension. it is difficult to tell if this represents an old hematoma but the signal characteristics are very unusual for hematoma. A synthetic device placed surgically is felt to be more likely. in any event, there is dura sac compression and cord flattening in this region. At T11-T12 there is disc degeneration and disc bulging. At T7-T8 there is narrowing of the spinal canal.... Take a look at these pictures as you can clearly see this large defect in my thoracic at the T7 T7 and T8 areas. Keep in mind that the SCS was removed over 3 years ago and I have no device or hardware implanted in my thoracic.

[kajari]

I had another MRI and the results are below and attached two images from the MRI that the neuro provided me. Mark or anybody with some knowledge on this, can you tell me how serious this appears to be. I am scheduled for another MRI with contrast tomorrow to get a better view of the severity and damage this is causing. To say the least the pain around my upper abdomen is extreme and the weakness i am experiencing in my lower extremities is getting worse. The MRI report states "T7-T8: There is chronic anterior wedging of T8, estimated at 25%, with significant retropulsion. Loss of disc height and hydration. Disc herniation indents the anterior thecal sac with moderate central stenosis. There appears to be a large intradural extramedullary mass within the central spinal canal at this level. prior laminectomy is noted at this level. There is significant compression of the spinal cord at this level."