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L4 - S1 Herniations & DDD. ALIF vs. Spinal Cord Stimulator

Started by bmw1586 on 03/17/2010 4:43pm

Hello All -

I am a 33 yrd male with DDD at L4/L5 & L5/S1 (both with annular fissures). I have completed about every conservative treatment out there, and now am faced with an ALIF for the dics mentioned above. I am not at all interested in the fusion (especially at my age), as I have heard that once you start, then the dics above will begin to fail due to the off set of being over worked since I would be fused below. I had the surgery scheduled for next Wed., but my surgeon has suggested we try 1 last thing before committing to ALIF... Spinal Cord Stimulation (SCS). Curious if anyone has tried & had any success with this type of implant/procedure? I do not want to commit to a permanent fusion if I can at all avoid it, but my quality of life has been in the "you know what" for almost a year now. I am tired of the drugs as I am sure I am probably addicted by now, and want to get back to the life I had before this occurred (all I did was pick a pen up off the floor). I am a newlywed, and sad to say that this is not what my wife had signed on for... She is an exceptional women who still stands with me in this battle against the pain, but even though she won't admit it, I am sure she is having a hard time with our life given all day, everyday revolves around my constant pain. 24/7/365 my pain is at a 7- 8, even with the opiates. While the opiates help with the pain in my back, they do NOTHING for the pain in my leg. I am currently waiting insurance approval for the stimulator, but hope someone might be able to shed the light on expectations, and not just a "testamonial" from a company sponsored website. Please, if you have had any experience, I would love to hear about it. Thanks for listening, and I pray we all get relief some day soon.

Regards

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I curious why you are concerned about surgery. I have several friends with a similar situation who have had very successful surgeries and are back on the slopes and feeling normal. My understanding is that SCS is typically a last resort.

There are also alternatives to ALIF now, many procedures are done minimally invasive so you are in and out through an out patient facility with a much shorter recovery time. S1 - L4 is a very common location for DDD and should have a positive outcome. I have also heard that disc replacement is a real good alternative to fusion as it prevents adjacent level disease which can happen with fusion. If going that route make sure you find someone experienced in the procedure...

Good luck

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I just finished a 5 day trial for a spinal cord stimulator to treat cervical pain (after 2 cervical fusions). The trial was great and reduced my pain by at least 70%. I am now in the process of scheduling the surgery for the permanant stimulator implant. If I were in your shoes, I would at least do a trial to see if it gave you any relief.

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Hi bmw1586,
I had 360 fusion on L4-S1 9 years ago, it was a brutal recovery but definitley worth it to get out of that pain I was in every minute of everyday. the pain in your leg from nerve damage will get better once the area is stabilized and the sooner the better because nerve damage is permanent.
I have numbness in my right leg and it really bugs the WC docs that they can stab my outer thigh with needles and I can not tell them if it is sharp or dull (they hate being wrong LOL, I was told by one dr that that's not possible from a back injury) There is no easy way to get through it, if the nerves are being crushed it hurts like hell and no amount of pain meds will fix that.
I will tell you that now 9 years later I still deal with really bad arthritis which is a side effect from multi level fusions and it sucks but it is still better then where I was, I was in so much pain and my life had literally stopped because of it, I had no choice but the surgery.
I wish you all the best with the stimulator and your ongoing treatment keep us posted on your journey. God Bless!

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Thank you all for your comments & support. I decided to go the route of the SCS trial. However, due to the extreme amount of surgical pain of the trial implant, they could not set the programming on the temporary unit until this afternoon (03/29/10). So, I spent the last 3 days geting over the surgucal pain, and will have the unit attached and programmed this afternoon. I am veryhopeful/optimistic. I will post follow uponce I have the temp unit connected & programmed. I understand that a lot of people have hadpositive reults from the ALIF, but again, my reservations are about eventual damage to the discs above as a by product of permanent fusion at L4-S1. I was not given the option to try a micro-discectomy, or any other surgery before the fusion , thus reservation to jump to a permanent procedure whic entails a horrible recovery experience from everything I have read. Just have to wait & see if the SCS will provide enough benefit to putoff the ALIF for a while. Sadly, Iam pretty sure no matter what, I will eventually have to get the fusion done. Problem is that I am facing a potential job loss due to company reorginization in the next month, so cannot be strapped down with a 6 - 8 week recovery right now since I need to be able to start an active job search ASAP. Anyway, hope to provide feedback to the group over next couple of day. Thanks to all that responded!

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so- Had the implant installed/programmed. Happy to say that the effects of the stimulator are quite great. For anyone considering going through the tiral, I would say "Do It"... Still having surgical pain from the implant procedure, but leg pain has significant reduction vs. prior to SCS. Hard to discern if the back is getting the relief expected due to surgical, but hope it is. Will continue to keep posting.

Sincerely,

Bmw1586

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I think I might have nerve damage because at night I have twitching muscle which i never had before.. I am on SSI and I can't afford good medical health.. I am REALLY SCARED... this makes me so sad. I just don't know what to do anymore... I hate being in pain every single day.. I am trying my own stretches and whatever to eliminate some of the pain but I was told that it would take months even up to a YEAR to see a spine doctor.. this sucks I hate it.. I don't want to live like this I was so active before..

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I am so sorry you are having to experience these issues. Not sure what SSI benfits cover, but I am surprised that they are telling you cannot see a spine surgeon for a year. Have you looked into a pain mgmt specialist for the mean time? That would be my suggestion. Hope you find some relief. I know meds are not the answer that most of us are looking for, but youneed to find something to bridge the gap until you get in to see a spine specialist. Good luck & god bless...

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I'm glad your hopeful and feeling better now. Please keep us posted on your progress. Someday I will have to have an implant-pump or stimulator. Surgery is not an option according to 6 surgeons and 4 pain Dr.'s . How I understand it is I Nerve Damage that has progressed beyond repair. I have every other type of injury as well which I believe could be improved with surgery but, the Nerve and Disc damage have trump them all and surgery will make my pain worse. Something like that. They all agree I am disabled now, I am still processing the bad news. The more I try to improve my pain with all the tricks out there the more the pain Nerve disease gets worse. I can't believe this is happening. They told me to relax,take a break, have a sit, and find anything that helps lesson the pain. I can't take Methadone which is the strongest and has nerve inhibitors. It has way to many side-effects. my insurance wont pay for Lyrica or cymbolta which the samples didn't help much if at all. I've tried every thing. my Last/next step will be Implants. I'll check back on your progress. may God or someone help us all!

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Hi Madcat -
Sorry to hear about all of the issues you are dealing with. I understand that the methadone has some severe side effect issues, and decided it was not the right approach forme either. The Lyrica/Cymbalta (SNRIs) did nothing for me as well. The 1 thing that gets me through the day from a pain med persoective is high dose hydracodone. I take 25mgs every 4 hours, and a 25mgSR with my night time dose. This is a specialty compound made by a custom pharmacy. It is the only way to get the hydracodone in pure format. All others perscribed (like Norco or Percocet) have acetameniphine which we allknow can kill your liver. Thus, taking such a high dose of those would be extremely bad for me. Not that the pure opiate is a good thing, but just suggesting that if you have a good pain doc, then you might want to discuss havinging a compounded med rx written for you. They are very expensive, but Iam lucky that I get reimbursed through my insurance, and then just flex spend the rest. If your insurance doesnot allow for this type of expense, then perhaps not a very good suggestion. Have you considered other types of opiate dirivative meds?? Oxy, Morphine, Fentynal?? There is a lot that could work rather than Methadone.

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so, today is the first full day off the SCS trial. WOW!!! the pain is horrific... If I really understood. the amount of relief I was getting from the stim, I would not have let them take it out. I am pretty sure that I will have the permanent implant installed. Anyone considering going through the trial... DO IT!! I had the implant removed at 1:00 yesterday, and by nightime, I was almost in tears. The cronic pain had come back, and the meds barely made a dent. I am hoping that my surgeon will combine the implant & discectomy at the same time. I think that would be the most appropriate approach for me. I know that everyone is different, but again if you are considering...all I can say is that while the trial was painful, it was GREAT as well. I hope this helps. Sincerely

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What do you know about disc replacement surgery? I teach high school and was assaulted by a student. This being said, I am now left with 2 ruptured disc and nerve damage. I was partially paralyzed due to the compression on the nerve when this happened. I am thankful that only lasted 10 days but it took a month before I could half way walk. I still walk with a limp. I have tried the epidural route, physical therapy and take meds daily. I am unable to even perform "normal activities" such as walking in a store. Nothing is working. I was told by a reputable neurosurgeon that if nothing is working it will be up to me to let him know when I can't take it any longer and I am in need of 2 disc replacements. L4-L5 and S1 needs work. I will say, he is not pushy. I am just concerned because I have not received information but from one person that had the surgery (she is 60) and she did not have positive things to say. Any info will be helpful!

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Hi -

I would be very interested in hearing that a Dr. is willing to perform a mutiple disc replacement. I have not heard of it being done in the US. Most I have read is about a couple of Hospitals in Germany, and 1 in India. Do a quick scan through the "Surgery" section on this board, and you will be able to find a comuple of strings that discuss & give the names of the hospitals. That said, my surgeon does do disc replacement, and I plan to have a conversation with him about it on 04/16. That will be my final consultation before I decise what permanent route I choose to go. He has given me 3 option. SCS (Stimulator), 360 ALIF (fusion), or disc replacement. Not sure though if the disc replacement would be 1 level with a fusion at L5, or a 2 level. If he offers to do the 2 level, I believe that is the route I plan to go. Technology on disc replacement has come a long way from where it was 10 - 20 years ago. While I was extremely impressed with the stimulator, it only masks the pain, and is not a permanent fix. I still do think I will be about to perform some of the "normal" acticities you describe without either a disc replacement, or the Dbl Lumbar fusion. It is good that your Doc. is not pushy. Get a second of Third opinion before you decide to let someone cut on you. I did this, which is why I did not have the fusion yet to date. My other opinion stated that he did not believe the fusion would solve all of my issue (specifically my leg pain), which is the primary source of chronic pian. The other significant downside to disc replacement is getting insurance approval. this is very difficult. I know this as I am an HR person by trade, and specialize in compensation & benefits. To be honest, I was surprised I was ableto get approval for my stim trial. All that said, take your time, research, and make sure you are 100% sure of the advice & decision before you let someone cut. Once you go down that path, there are qno guarantee's, and most procedures like fusion are permenent. Good Luck. For more information on disc replacement, checkout the site below.

www.centerforspinecare.com

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Hi bmw1586. I am a 29 year old female and have the exact same condition as you do. DDD at L4/L5 & L5/S1 (both with annular fissures). I am Canadian and unfortunately, the shortage of doctors in Northern Ontario have made it almost impossible to get any good medical advice. I have doing my own research and have fallen on disc replacement surgery. Please keep us posted on your next visit and consult with your physician. Thank you.

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Hey B
Have you had any input or luck from other Doctors giving advice or options for you. I would like to hear what other Dr's had to say. i have found most say they find no reason for surgery and thats it. That was before I found out what I have wrong with me. I should go back or find new surgeons and show/tell them what I know and see what advice or options we have. Again like I said in my last post, I am F'd UP). Have you heard of Spinal reconstruction or something like that where they FIX,REPLACE or whatever they do to give you your life BACK!!! I am struggling with my family understanding what is wrong with me. No-one talks about it to me or ask me how I'm feeling, it's like nothing ever happened.
Yet, they seem like they are waiting for me to get back to work or do things I used to. I have said i cant bend, lift, walk for ten minutes without the nerve pain catching on fire. My pain Doctor was gone when I went to my weekly visit during the titrate stage of last of many trials of meds. They don't tell you he is leaving until you show up for the appointment. My new doc barely looks at me and gave me an increase after telling him I'm titrating. Now I'm afraid to ask for increase, I told him Im ok in hopes he wouldnt send me to the implant doctor. I'm not ready as I was tortured on all the failed meds I had to go though to get to this point where I can function now but with lots of BT pain.

I'm in the stage where your whole life has fallen apart completely. Money, Wife wants to leave, I'm criticized, I don't have real/healthy support. I can't concentrate long enough to help my self out of this mess and no-one is helping me rather abandoning me. It doesn't help that I don't want to be seen this way by anyone. I will delete this after a couple of days its to much to even read for anybody with our pain. Thanks for reading. I can tell you are on the right path no matter what you decide. I can feel you have the right energy flowing within you. keep going and you will find your answers and peace with them. I'll be following your progress as you post.

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MadCat -

I am so sorry to hear about the misfortune you have experienced due to your chronic pain issues. Not having support makes it very, VERY, difficult to deal with this type of issue. I am amazed that I have been truly blessed by the fact that I am a newlywed, yet my wife continues to stand by & hope that we get through this. It sounds as though your issues (pain & otherwise), far surpass mine. I understand the frustration, depression, and self doubt you share. I can only say do not give up. I will continue to update on my progress. My next appointment with my surgeon is this Friday. After long discussion with the wife, and the research I have done, we have elected to have the permanent stimulator implan procedure done. I am just not will to subject myself to a fusion surgery that cannot provide even a somewhat high probability of success. My odds are maybe 50/50 that it would fix my issue, or on the flip side, make them worse. I could not even fathom it being anyworse. With respect to a "spinal rebuild" essentially, I have not come accross any such sort of procedure. Not here in US or in Europe. Most breakthrough & leading edge right now would be a multi-level disc replacement. That will be my next option should the stim not be the solution I am hoping it is. There is a new mechanical disc called the "Maverick" that is getting significant reveiws, but due to the fact that it is only recently approvexd by the FDA, there is no long term data to demonstrate outcomes/benefits for more than about 12 - 16 months that i can find. However, the data & studies that i have read would lead me to believe that if I were to elect a significant traditional surgery, the disc replacement using these devices would be the route I will go. It is not fusion, and can be replaced if they were to wear, or just not work. Not sure if any of my rambling helps, but I hope that it does. Please keep your faith strong. I will pray for you & your family. BW

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I have researched artificial disc replacement for 3 years so I have so much information to share if you are interested. Email me at djprieve@yahoo.com and I will share it with you. I also have advanced multilevel disc replacement and surgeons in the USA will not offer any surgery stating that I need an entire new spine and that is not available and most likely not be available in my lifetime.Surgeons in Germany can do multi level disc replacements, however, make sure this is the primary pain generator. LA Spine Institute in California does multi level, however, they do not take insurance, you must pay cash. the maverick disc by Medtronic has been taken off the market in the USA due to a law suit by Pro-Spine, Pro-Disc. In addition lesions on my PONS at the brain stem multiply the symptoms. Send an email, I would be glad to share research and medical opinions.

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Hi Djprieve,
If you could post an overview of your Info that would be helpful to many of us.
Thanks

P.s. This is a picture of the last time I was able to bend without severe pain. Last fall I coached my daughters micro soccer. I now use the golpher which is a handle for picking things off the floor. you can find it at wal-mart for $10. it's in the ''AS SEEN ON TV'' section. This really helps. i'd thought id share.
''

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Hi there, I have so much information and everyones situation is so different. You can email me otherwise go to youtube or metacafe and search artificial disc replacement, stenum adr, wockhardt USA and you will find many video testimonies. I also have talked to many people from the USA that have traveled to Germany for surgery and have there response to my questions. I have a recommendation for finding options in the USA or abroad. If I post too much information, the site thinks I am spamming them. This is not true, I am suffering from multilevel disc degeneration at so many levels surgery is not an option, however, I have searched the world over for all options and the least I can do is share them, email me and let me know what you are interested in and I will let you know what I have learned.

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The latest disc in use in Germany is the M6 by Spinal Kinetics. It best simulates the natural disc offering shck absorbtion and mobility. I know a doctor in the USA that offers a hybrid fusion which is a pro disc replacement and a fusion at the next level for people needed 2 levels fixed.......better than 2 fusions......the USA is limited by the FDA to one level artificial disc replacements.......I have seen multiple levels done in the USA, however, insurance does not pay for this. I have also talked to many people about insurance issues, however, I cna not name insurance companies or doctors on this site.

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I just got back from my visit with my surgeon & schedule a permanent Stimulator Implant. I asled him the same question on AD, and he stated that he does perform 2 level disc replacements, but that most insurance companies will not cover. So the above is correct.

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This being the first time I let out some of my concerns, I hope that it help others. We should listen to others, especially your mother's advice. My mother, a retired school teacher, (RIP) used to tell me that sometimes the most intelligent made the dumbest mistakes, and that's why we should think before we make any decisions; and how true that is...

I had severe back pain and went to see my top notch, internationally famed, orthopaedic surgeon who two years earlier had done a very successful IDET procedure to relieve my pain. He knew me and also knew that I was very athletic, a workaholic that was always on the go and that I needed to do a lot of walking, bending, climbing, etc as an environmental consultant. He coerced me to agree to a L4-5 laminectomy with fusion by telling me that if I did not have surgery 'immediately' I would become paralyzed from the waist down, and upon my questioning said that there were no other alternatives: "either surgery or be paralyzed from the waist down". Because. as he said, they knew me and wanted to help me, they cancelled another patient, and scheduled me for surgery 2 days later. He was supposed to do a minimally invasive XLIF procedure, that as he said, knowing me in 2 days I'll be out walking a mile without pain. What a surprise!, I came out of the surgery paralyzed from the waist down and in excruciating pain; instead of 2 days, a month later I was still in the hospital's Intensive Care Rehab Unit. Almost 4 years later I'm in the worst pain there exists, and bound to a motorized wheelchair; unable to work or to take care of my most basic needs, depending on others and without a valid explanation for his "first neural loss in 19 years" . He took my life away, my livelyhood and all that it encompasses. All he says is: "i'm sorry; I swear I'm praying for you; I'll give you medical care for the rest of your life; but...you have to suit me because you'll never..."

Anyway, please BE AWARE, how can you trust orthopedic SURGEONS (BONE doctors?. Anything that has to do with nerves shall be left up to neurosurgeons.

I am very sorry for all our partners in pain and pray that someday we can get some relief. Do your own research before making such a serious decision that can ruin your lives. Now we are in the hands of doctors in pain management. Thank God I have an excellent one (although I'm always in the 8-10 range), but how about others less fortunate? Feel free to contact me if I can provide you with useful, experienced information. or just to let it out. I only have God to understand my pain and suffering, because no one seems to realize that the one that used to help others in their moments of need is now in so much need for understanding. I have to pretend , and can't show or share my suffering with those that don't know that their stronghold is now almost useless. It is not only the physical pain, but the emotional anguish and pain that we have to undergo, while the famous doctor keeps living his life as usual.

Good luck to all. bmw keep us posted.

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I had a temporay stimulator implanted when they first hit the market.
It seemed to help{ I still had to take medication } with all due respect to patients who had a “bone Dr operate} I have to agree, ONLY a NEURO-SUREON should touch your back! Ask others, ask the Dr for a list of patients he has worked on! I know they have laws to protect the patients privacy, but some may agree to tell their story. I decided to have the implant. I trusted my Dr.

My implant did help short term. Then it began moving around on the spine, it would not stay in place.
It cost { in 1998 } $7,000 to be programed in my Dr’s. office
Men and women listen-what are Dr’s here for? They take an oath to try and HELP. Or how much are they making when they sell us a implant???
I ask the Dr who implanted mine to help me come down on my medications-“he YELLED AT ME”
saying “ YOU ARE NOT THE ONE WITH THE PHD I’am, if you do not have another electrode implanted in your neck and get back on the Drugs I will not treat you”.

I was shocked I cried, but I walked out never to return! How unethical. How terrible a patient willing to suffere to see if they could be on less drugs. I personally was a money machine to this Dr. The implant cost Medicare { in 1998 $39,000} that was before inplanted, then $7,000 every couple months. Now I am 50, I wonder how much money do they pocket by selling one of those?
Then it just would not stay in place.
Was a I paying for his house—the Dr’s home?

The Dr helped me, I was alone-young, this was a new device, I was desperate.
I eventually found a Dr who would listen I had a Neuro-surgeon take the implant out.
I personally knew a man who had one implanted in his leg and some how the acid that was in the device leaked, and was this man ill!
After mine was removed & I was taken down on medication, I actually did better. I still have the device.
I still carry those scars of what this proffessional did to me. How dare anyone use us who are ill as away to make money. The Dr I had when confronted { I was kind and soft spoken young, but there had to be more going on with the man than met the eye} and guess what there was.....
He moved his practice. The man was just out of school, I respected him I had been in a wheel chair, I trusted all he said. People no matter your age “ reseach these Dr’s back ground” talk to others, I not only suffered but the man who had it in his leg lost 1/2 of his lower leg muscle.
Think long and hard about it.
I wish you all the best of luck. Then after what I went through I began to study, there was no link such as these to ask others, it was a new procedure. Procede with caution —all of you. Good luck and I pray no one goes through what i did. I even found out where the device was first made...It is to long a story to write here! It came from China. They made it first.

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To many of you that have had epidurls, back surgery,etc... I would like you all to look up ARACHNOIDITIS. This is a disease that you are in constant horrific pain and Dr. don"t want to tell anyone about. It is caused from to many surgeries. Also, I am waiting to have my trial spinal cord stimulator implant because I have Arach. I wanted this stimulator so bad, but doing my reserch I have found that a great many people have good results with the trial but the final implant did not work much at all. If you have a lot of scarring (scar tissue) built up from so many surgeries, the electrodes will not go through the spinal cord without forcing it. This is where the surgions can puncture your cord, or just leave it where it stops. Then it does't work or makes you feel worse pain than when you started because it isn't where it should be. I don't want to scare anybody, but please do your reserch before you commit to such a drastic procedure. If you have numbness in one of your legs & foot, have severe pain, or siattic pain , look up Arachnoiditis. If you do and it doesn't pertain to you, than count your blessings. Also, if anyone would like to know what your MRI says, here is a site that will explain what all those big words & conditions are. adriaanliebenberg mri terminology. Regards, Jan

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Janiceohio,

Great !!! Thank You for the info. I think I do suffer from the condition. Maybe why the implant did not work for me long term. I had so many scars...........THAX!!!

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