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Posted 9/9/2010 8:55 AM (GMT 0)
Hello to all.  I wrote several posts several months ago.  I found the responses so very helpful:  not just that I'm not the only one suffering on a daily basis, but it was so helpful to learn of people with chronic, daily pain, still living and loving their lives.

My problem is that I had 7 surgeries in less than a year.  Started with a micro-discectomy, then had a fusion.  The pain just keeps getting worse, with the physician telling me I have had too many surgeries for him to do another, basically that there is nothing he could do for me.

I had a neuro-stimulator implanted in my back, and it does very little to relieve the pain:  it's like spraying air freshener in a stinky bathroom:  it still stinks.  Because of this, I cannot have another MRI while the implant is in there.

So I had another doctor (surgeon) give me a CAT scan, and they told me that the fusion was unsuccessful:  that there was a piece of bone that had not fused where it should.

Has anyone else had this happen?  Do I need to have another fusion to correct it, or are there alternative measures?  Of course, I would prefer not to have more surgery, but it is so debilitating living with this constant, throbbing pain.  I can only walk a few blocks and spend most of my time lying on the sofa taking oxycontin.

Any advice would be so very much appreciated.

Love to you all and love to me,

Ric

 

Posted 9/9/2010 10:59 AM (GMT 0)
Hi Riccardo
Just thought I'd reply to let you know your not alone. Sorry I can't offer any helpful advice on your situation. I to had a spinal fusion done and it was considered a failed attempt. In my case however they did fix the problem which was a section of my spine shifting and compressing a nerve. The problem however is that now rather than have severe pain occasionally I have constant chronic pain. When I when back to the ortho surgeon he just said what he did looks go. In other words I should go talk to the nerosurgeon who also did the surgery. The problem with that is that he had moved out of the country. The best explaination anyone has given me at this point is that scar tissie is interfearing with the nerves causing the pain. So basically sorry about you luck pal. They can't give me any guarentee that they won't make things even worse by doing any more suregry so I'm not willing to go that route. So I'm left with just dealing with the pain as best I can with pain meds. And as I'm sure you probably already know that's not much help and the amount of pain meds just increase over time. Wish I could offer some suggestions but can only say to hang in there and don't give up. There's lots of great people here to lend an ear when you need one and some great advice from people who have been there and know what it's like. Take care and I hope things get better for you down the road.

Randy
Posted 9/9/2010 1:51 PM (GMT 0)
I have just been told that my CT revealed a "not successful" fusion as well. This Ortho said he could not say it was a failure because another Dr did the surgery, but that he would say that the fusion was not successful. My chronic pain has increased since surgery, although the intense nerve pain was relieved by the procedure.

What I was told was that we would wait another year (I'm 18 months out from surgery) and pray that the bone would continue to grow and use PM during that time. We will look again if things don't improve over the year and then perhaps have to go in to fix the problem.

I honestly don't understand the difference between failed and "not successful", but I guess that is the way of saying "I'm not going to talk bad about another Dr." Either way, it didn't work and I'm right there with you!
Posted 9/9/2010 7:52 PM (GMT 0)
Ricardo seven spine surgeries in less than a year is a lot. Each time they go into your back it weakens it that much more and also the success rate gets lowered each time. But 7 in a year is way too much. My thoughts would be to get a copy of this Ct report and find myself the best excellent neurosurgeon there is and go for a consultation to see what he may think is going on and is there anything else that can be done. Yes, sometimes a fusion does not either take, it may not become solid for whatever reason.

You have obviously been seen by a PM dr since you have the SCS. Has anyone ever suggest an intrathecal pain pump to you? If not, then you might want to discuss this with your dr the option of doing a trial to see if this is something for you. Please go to www.Medtronics.com to read about the pump. From what you are describing you have no quality life and that is a must. Laying on a couch or bed all day is no good, a CP person needs to be up moving around as much as possible. You are doing a lot of damage to your body by just laying around. Please take care....Susie
Posted 9/9/2010 9:07 PM (GMT 0)
I have a similar story without the stimulator. I found great support at http://www.spine-health.com/forum

There you will find many, many, many people with your same condition.  They have lots of advise how to deal with Chronic pain from back related surgeries and/or injuries.

If you haven't been there I would check it out!

People here deal with chronic pain from many different conditions and can offer great advise.  Over there they focus on the spine so just by reading posts you can learn what others do.

Everything in your post can be related to others on that site and here also.

 I deal with pain everyday with same meds and when you feel there is nothing more that can be done people like us wait till technology advances and continue to move forward to find answers. I would seek other opinions while on the journey.

I wish you luck!

 

Posted 9/10/2010 2:29 AM (GMT 0)
Hello to all and thank you so much for your good advice. Now I have a technical question: by doing this "quick reply," am I responding to everyone in the thread or only the last person?

I want to thank you. I used to be so outgoing, I went out all the time and had the time of my life. I realize I have been feeling sorry for myself. And I see that so many people are living with so much pain, yet they go on and on with their life. I agree with the lovely person who said that lying on the sofa all day is not good. I guess I'm scared that I will do further damage to my back.

Last night for the first time, I went down to the gym in my apartment building and did the exercise bike for 20 minutes. It felt SO good to do some exercise. I hope I don't damage myself.

If someone will let me know how the quick reply works, I would appreciate it. Also, can I reply to a specific person???
Posted 9/10/2010 9:15 AM (GMT 0)
You did the quick reply correct. All of us can see your post like any other. I use the quick reply if my post is a short one, lol. I am the one that said laying on a couch or bed all day is no good. It will cause you to lose so much muscle tone, zaps what little strength you may have. It is so hard to build that back up once its lost. Please be very careful on attempting any work out program without consulting with your dr first. Believe it or not but walking is the very best form of exercise for people that have had back surgery. Thats the one exercise drs tell their patients to do right after surgery too. You should start out slow and build yourself up. Can you give us a little more detail about all of these surgeries?

Take care.

Susie
Posted 9/13/2010 12:28 AM (GMT 0)
Hi Straydog:  Now I hope you will let me know if I am replying just to you or to everyone.

You wanted to know what my surgeries were.  First, there was a microdiscectomy (pardon if I mispell these things), which was supposed to be a quick, easy fix for a compressed nerve.  It seemed to be working well.  The next week, I lifted a mattress (I know, stupid), and something tore.  It make a hideous sound.  The next two weeks, I was in agony, however not much more than I am now.

So the doctors brought me back in and did the lumbar fusion (lower back, I think it's called l5, s1??).  That was a big surgery and I remember being in the hospital for a long time (over 2 weeks), and then in skilled nursing for another week.  When I got out, I realized I had a significant right foot drop, very weak, and needed a cane to stabilize myself.  I still use the cane.

Next came another surgery (supposedly minor) to do further decompression.  At that point, they found out that the hardware installed in my spine had become  seriously infected, so they took it all out.  The doctor claimed that the fusion had "worked," so that he wouldn't have to redo the hardware.  So there were then two more surgeries, and I can't even tell you what they were for.  The final one was to have a neuro-stimulator implanted in my back.  I don't think it helps much, and the severe pain I feel is exactly at the site of this stimulator.

Finally, the doctor has told me that there is nothing more he could do for me.  I am embarassed to say that I cussed him out because of the cold way he told me about this, so now I have to go to another doctor.

The new one says he won't do further back surgery until I remove the neuro-stimulator because he believes it could be the source of the pain.

So now, I am so confused and desperate that I don't know what to do. 

If anyone reads this, I would so appreciate some kind words of wisdom.  The pain and stiffness seems worse each and every day.  I wish I had the nerve to end it all, but I don't want to die.  I have some wonderful friends and I want to live.  I know I won't be like I was in my 20s, but just to be able to live without pain (or as much as I have now, which is constant), would be fabulous.

Sorry if I am whining -- I love you all and hope you are all having a good, pain-free day.

Love

Riccardo

Posted 9/13/2010 10:23 AM (GMT 0)
Sorry, bit you are not whining. You have been thru extensive back surgery many times over and you just need some relief. I do know that removing the SCS is not a big surgery and it is done as an out patient. If you are not getting the relief from it that was expected then it may be time to seriously consider having it removed to see if there is a reduction in your pain level. Considering all of these surgeries and the pain I don't see why a trial for a pain pump would be so difficult or unreasonable. I am not a dr but it is something to discuss with your dr.

I have a pump and can tell you first hand they do work if you have a good dr that knows how to handle a pump patient. Most people end up on less medication with the pumps too. Yes it does get very frustrating trying tp live with CP. From what I am reading about you, you need help in getting better relief and it is possible with the right dr. The SCS is like anything else, its a real hit or miss thing on whether it will work or not.

Take care.

Susie
Posted 9/13/2010 7:59 PM (GMT 0)
Hi Riccardo; So nice to meet you, however I am sorry that you too are in tremendous pain. I too have had several surgeries to correct two herniated discs in my lower back. First was a laminectomy to fix L5-S1. After that didn't work and the herniation came back a fusion was done. Two levels S1-L5 and L5-L4. The level above L4-L3 was fine then. That was in 2000. I got two years of wonderful pain free days! But after replanting my strawberry bed in the spring of 2002, I felt the pain going down my legs again. Come to find out....L3-L4 had decided to herniate!

So in the summer of 2002 I had another laminectomy to correct that and it did not work and reherniated. In the fall of 2002 I was back under the knife having another fusion surgery. However.....the pain down both legs came back after 6 months!! And I found out that the fusion did not take. So they went in the summer of 2003 and revised the fusion to L3-L4. They went in frontally this time and placed a small plate at the front of my back., Plus two of the screws were loose and they tightened them.

Now, let me tell you that after all of this I was totally back to the same pain that I was originally in before the very first surgery. Since my fusions have fused and all is well back there. But.....I am diagnoised with failed back syndrome and chronic pain for the remainder of my life!!!!! Constant pain medications is now my life. We are in the process of looking at the SCS to lower my intake of pain meds.

This I want more then anything else to work! I am on a very high dosage of Kadian (morphine) that my doctor is concerned about and if my ins will okay the SCS and it actually works to lower my pain from a daily 7-8 to even a 6 I would consider it a high success.

Anyway...I just wanted you to know that I understand your frustration and that you are not alone! If you need to talk ever feel free to email me or just post I am always here!

Hugssss

Scarred
Posted 9/16/2010 1:23 AM (GMT 0)
Dear Scarred for Life:

I hope this will go to you: I still don't understand when I'm replying to someone rather than replying to myself, aS has happened in this thread.

Thank you so much for your advice. The amazing thing is that we have had the exact same things! As I think I told you, the succession of the lamenectomy and then fusion is exactly the same. With me, the pain down the legs is completely gone.

But at the site where the stimulator is, it is a combination of a hideous pain combined with a numbness. I can't tell whether the numbness is worse than the pain. My primary care doctor says that numbness is better than pain, but I feel that isn't an appropriate response.

So by the pump, are you talking about something different than the neuro-stimulator? Could you let me know more about the pump? Does it only dispense morphine? At my last ER visit, they gave me a cocktail of toridol (sp?) and dilaudid. Boy, did it work, but only for 2 days. I was COMPLETELY pain free and it was must so wonderul. I felt young again.

I don't know if this is appropriate, but let me give you my personal email so you can let me know about the pump, or anyone out there who might know. It is [email protected]. Thank you so much. Again, I hope this isn't inappropriate, but I trust everyone who is on this site.

I can't tell you how much relief it is given me just knowing that there are people who understand and care, having been through the same thing.

Love and a painless evening to all!!!!

Ric
Posted 9/16/2010 1:44 PM (GMT 0)
Ric the administrator really prefers we not put our email address out here for everyone to see. Your mailbox can get clogged with spam mail. You can put your email address in your profile here at the forum. Then only members can see your email address. The profile section is at the top left of the page. So far you are using the forum correctly with your posting. There is no way to just send a post to one person here at the forum when posting, everyone see's what is posted unless you elect to ignore a particular person. It would be helpful to you to read the forum rules and there is other info there on how to get around the forum.

Scarred does not have a pain pump, she is awaiting to see if she can do a trial for the SCS unit. I have a pain pump implanted. There are other medications that can be used in the pump it is not limited to morphine. I cannot tolerate morphine and have a combination of meds in it. If you will go to the top right and see the search area and type in "pain pumps" a wealth of information will pop up for you to read. We have discussed the pumps a lot so there is plenty of info there. In addition I will be glad to answer any questions I can about the pump. So, please if you don't find what you need to know after reading about the pumps here ask any questions you may have and I will try to help you.

Take care.

Susie
Posted 9/16/2010 6:36 PM (GMT 0)
hey riccardo, sounds pretty rough buddy. my friend went through the same ordeal just a little difference; the orthopedic surgeon did all his decompression removed his facet joints, drilled the holes for the pedicle screws and then could not get the screws in; so then he went to his hip and took a bone graft packed it in there and sewed him up. he put him in a full rigid brace because he had no metal fixatures to hold the fusion ared still. the bone never fused so he was in that brace 3 years even in bed and the shower. that was his third surgery. then he moved from Boston to Norfolk. he got with a pain mang. doctor that was taking care of him but he told him you can't be like this all your life and he was pushing him to go to this paticular group of neurosurgeons that are the best around and they take tough cases [one did my lumbar fusion that was a redo and he was great] so after he twisted his arm for a year he let them fix him and he was stabilized but still in pain which could not be helped, at least he was out of the brace. Most spine surgeons are scared of redos because of the scar-tissue [adhesions or granulated tissue], so you have to do your homework and find the best spine surgeons in your area and get a couple opinions. i agree with everything straydog said; be careful doing any exercise because if your fusion failed you don't know what bone fragments are in spots you don't want them. walking is probably the only thing you should do until you know whats going on. if the stimulator is not helping get the sucker removed and as far as straydog was saying about the intrathecal medication pump was exactly correct. i have herd of and seem such positive things about them it has to be way more advantages in pain control, your liver; because it's not straining to metabolize the drugs, and you can still add in oral meds if you need them. i would keep the pump as plan B and see if a good surgeon thinks he can redo the fusion. i'm not sure what part of the country your in or even in this country but the wabsite for the surgeons in Norfolk is www.nsinc.com. ther is also new technology info on ther site. my doc. is David C. Waters and the two that opperated on my buddy are Grant Skidmore and Johnathan Pardington. i wish you the best of luck...
Posted 9/16/2010 6:42 PM (GMT 0)
hey, i just noticed you are in California. Saint John's spine center is a pretty famous one. i think it's in Santa Monica.
Posted 9/30/2010 9:38 AM (GMT 0)
if you are on Medicare and going to get a pain pump ..
well all I can say is I am on my 3rd one and being on medicare it`s very hard to find a doctor that will help you.
I live in Florida and the doctors here do not want to give out the meds that will keep me out of bed 24/7.
It`s all about the money..............
Posted 10/6/2010 10:24 PM (GMT 0)
Hello to everyone, and to everyone who responded to me.

Sorry, seriously, about posting my private email address.  I didn't know it was not a cool thing to do.  I respect my privacy and everyone else's as well.

I just wanted to thank you all for your wonderful responses.  I am now scheduled to have the CSC Intrathecal pump installed on November 1!!!!!!  I am so thrilled, as most people on this forum seem to think it did wonderful things for them.  Also, my doctor is on the Board of Directors of Medtronics, so I feel very comfortable that he is knowledgable about the pump.  Given that my new surgeon feels that if I were to do another fusion, the chance of the serious infection I got last time could kill me, literally. 

I hope you are all feeling well today and able to deal with the pain.  My pain level is high today, but I am so stoked about the possibility of decreasing my pain level by at least 50%, that it makes me feel better.

Love to you all and I hope to hear that someone, anyone, is feeling better today.

Riccardo

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