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Old 12-01-2008, 01:11 PM   #1
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Lynne720 HB User
Failed Back Surgery Syndrome

I'm sure there are plenty of people here who have been told that they have failed back surgery syndrome. What do you do? How have you coped? My boyfriend is really at his wits end. After 3 back operations plus a stapf infection and then a hip replacement that was supposedly going to help his back, he is still in agony. After the stapf infection in 2006 he started to lose feeling in his feet. Of course the back surgeon told him its not related. Its gotten significantly worse. The neurologist told him that its neuropathy after putting him thru a painful EMG and said that its also not related to his back surgery. But the loss of feeling in his feet was not there before he was operated on. The surgeon has no reason to operate anymore because he is fused. The MRIs are normal except for a seroma (a pocket of fluid) in his back which we've been told by all the doctors that it doesn't cause pain but for some reason his body did absorb the fluid and its been there for about 1 year now. Then the hip surgery was supposed to stop him from compensating with his back before he had range of motion in his hip. He is 5 months post-op from that but his back is still killing him. He can't do the SMS even if he wanted to (which I don't want him to) because he is on blood thinners because of a clot from the hip surgery. These surgeons just seem to close the door and throw everyone to pain management and that doesn't help all the time. What in the world can I do to get the right answers and the right help? I am so tired of him suffering. He wasn't this bad prior to the surgeries and of course he wishes he never went through them. I just want to find him the best doctors and the right answers. There has to be a reason why there is loss of feeling after the surgeries. There has to be a reason for the continued pain in his back.

Frustrated beyond belief here.
Lynne

 
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Old 12-01-2008, 02:05 PM   #2
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randy71 HB User
Re: Failed Back Surgery Syndrome

I have been diagnosed? with failed back surgery syndrome. It has been the most frustating thing I have ever been through. I have a spinal cord stimulator...no help...injections, the same thing, now my pm is talking about taking me off the morphine and putting me on suboxone. I don;t know what to expect. He also mentioned methadone. Do you take both of them. I know what he is going through,

Randy

 
Old 12-01-2008, 04:00 PM   #3
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ms_west HB User
Re: Failed Back Surgery Syndrome

Hi Lynne,

I was told one year ago that I had failed back syndrome and all I have to say is that it is a catch all phrase for I can't help you anymore. Please, please don't accept this diagnosis. Maybe I am in a land of denial but I want to explain why I feel this way.

Last year when I was told, I sunk into a depression. I was 42 and thinking pain pills around the clock are my life and no one wanted to treat my pain. I was so frustrated and had alot of negative thoughts. The best thing that happened to me was I saw an excellent pain mgmt doctor, it took me several tries, who acknowledged my pain and was willing to treat it. PRAISE GOD. Once my pain was treated then we began going thru doctors. I probably saw 10 or so and slowly they began ordering tests. The EKG, the CT scan, the mylegram, etc. The EKG came back showing that I had chronic pain in 2 levels, MRI and CT were normal except I had no fusion. Some concurred with my doctor and two said I needed surgery.

My last doc I went to said well yes my surgery failed but I did not have failed back syndrome in his opinon. Without fusion, how could I be failed? He said I had a non-union but despite all of my other tests he felt that L3 was questionable. He felt pretty confident that L4 needed to be fused and probably did a year ago along with L5/S1. He ordered a Discogram. Has your boyfriend had one? I will start out and say that this is the worst test to go thru but WOW how eye opening it was in my case. What was unbelievable is that I had two levels light up that were normal on all my other tests. Suprise! Suprise!

So now I am in the process of being scheduled for surgery #5! And I have been informed that a #6 will probably happen but we are aiming for lessor than more first.

I am sharing this to you to just say:

(1) don't give up. This doc is politely saying they can't help you.
(2) see the big wigs - there is a doctor in FLA, NY, and CA that will review your xrays without seeing you to determine if they can do anything to help you. It might be worth investigating.
(3) Make sure that your boyfriend is in counseling - I am not saying that he is a mental case or anything by any means but chronic pain and numerous surgeries do pull you down. The best thing I could have ever done was have a counselor to talk to that specializes in chronic pain. We talk to one another monthly now but did talk weekly for awhile. Since I do not drive due to the condition of my back, we now do telephone conversations which help the number of days and times my hubby has to take off from work.
(4) find a good pm doc - one that does not push shots but is willing to prescribe meds so you do not suffer.
(5) encourage him to talk to others who are in chronic pain and that can relate to his back pain. I have found a dear friend that I email 15 times a day.

I hope this helps some and remember I am here if you have any questions. I will subscribe to this thread and if you respond it will email me.

Pepper

Last edited by ms_west; 12-01-2008 at 04:03 PM.

 
Old 12-01-2008, 07:34 PM   #4
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Lynne720 HB User
Re: Failed Back Surgery Syndrome

Randy, my boyfriend uses the fentanyl patches for pain. He has been on several other pain meds but this he has been tolerating the best.

Pepper, thank you as always for your very thorough replies. My bf is seeing his pm dr this week. Unfortunately he is new to the practice (but not a new dr) because the excelllent pm dr he had left the practice to do something else so now we have to give this guy a chance (we've only seen him once). He is very understanding. He isn't pushing any shots. He isn't making any drastic changes. He wants to really get to know my bf and try and understand his problems. He isn't doubting the pain. He seems like he really wants to help him. He has called me back everytime that I've had questions. He sent him for MRIs. He had gone for discograms in the past and they were positive so thats why he had the surgery. Right now any tests such as discograms or mylograms are out of the question because he is on a blood thinner for a few more months. That is something that is holding things up but it has saved his life so we have to wait. Pepper, he is very very depressed too. The pm dr works with a therapist that he is seeing this week for the first time. I've already spoken to her. I plan to be at the appointment as well. I can't stand that he is this way and antidepressants don't help much these days.

Lynne

 
Old 12-01-2008, 09:05 PM   #5
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ms_west HB User
Re: Failed Back Surgery Syndrome

Lynne -


I am so happy that he is seeing someone regarding his depression. Tell him this is very normal especially in light of being diagnosed with Failed Back Syndrome and failed multiple surgeries. It is natural to almost want to hibernate from life. You have to realize that it makes the patients feel like this is as good as it gets, this is what I have to look forward to for the rest of my life, and lets face it the pain he suffers everyday is not the slightest bit fun. It stinks. Also after you have been sick for awhile many people disappear out of your life and quit coming around because they have no clue what to say to you. You get to a point that you hurt so much when you go out, so why bother going out? The pain becomes not worth it. How depressing to be house bound!!

I know others may read this and think I am being negative BUT they have not walked a mile in my shoes or your boyfriends shoes. They have no clue. Each case is different, each case has its own complexities. Some surgeries work, some open the pandora's box so to speak to a life time of problems.

There is nothing that he did wrong or he should have done differently. He probably blames himself and says why did I ever have that first surgery. Sound familiar?

Some may say you have so much to live for and should be thankful for BUT that is the last thing in a million years he wants to hear. He is sorting this all out and there will be many ups and downs along the way and he is so very lucky to have you by his side. You are a jewel and he may take it granted right now but my advice to you is to stand by his side, be there to give him a hug or wipe a tear from the cheek. He needs to let it out so that he can heal. I have no doubt you will be right beside him. You are a very caring individual and as the healing process begins he will realize how special you are.

Again, I want to be positive and tell you that there is life after this diagnosis. Sometimes other surgery can be done, sometimes it can't be done. But the key is we and our families need to live with the cards we have been dealt in life and take it one day at a time. Just remember to provide him with the space to cope and mourn his loss as you rebuild your life together.

I am here for you if you need me. Just shout out to me. I read everyday every thread but I don't post as much these days because some days it is rough being positive all the time. I post on the chronic pain board more these days.

Happy Holidays!!

Last edited by ms_west; 12-01-2008 at 09:09 PM.

 
Old 08-30-2009, 10:26 AM   #6
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dogskeepmesane HB User
Re: Failed Back Surgery Syndrome

I am a 56yo RN who has never been dxd with Failed Back Surgery Syndrome, but I'm sure that is what I have. My pm Dr. said I have chronic pain syndrome, but I know that after 2 major back surgeries that totally rebuilt my back from L1 on down and chronic rt. leg pain that nothing has ever helped, that is what I have. I have had this problem for almost 10 years now and since the only way I can survive and pay my bills is to continue working, I can't take pain meds during the day. Since I am a home care nurse, I care for pts. daily who have CPS and some have had Cauda Equina Syndrome, which consists of loss of bladder or bowel function and partial to complete loss of sensation in one or both legs. I look at these people and think, there but for the grace of God go I. There has been many a day when the pain was so bad that tears were rolling down my face by the time I got home from work. Since I drive all day, the pain in my leg worsens throughout the day. I cannot walk or stand for more than 5 minues or my lt. thigh goes numb, so I can't exercise. Nothing anyone has given me takes the pain away completely, it only decreases it to a dull roar. I so look forwarrd to getting home so my dogs can get in my face and give me slobbery kisses and act like fools with each other. Watching that makes me laugh and that seems to be the only thing that makes the pain a bit more tolerable. That and the fact that I see patients every day who are in worse shape than I.
I have to be honest with you and tell you that your boyfriend may have to live with these problems for the rest of his life and that he is going to have to find ways to cope with it. i also have to tell you that he may be one of the lucky ones and find a way or a doctor who can make it better.
I only know that I will never have another back surgery as long as I live and, since I am alone and can't afford to survive without working for the 2-4 years it would take me to get disability, I have to keep working for another 9 years until I can retire. It is great to know that I can vent to someone who understands how miserable this all can be.
Good luck and tell your boyfriend that I feel for him and pray that he gets better.
Best Wishes for a quick recovery,
CJ

 
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