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Severe low back, buttocks, leg pain
lulu_20657 posted:
Hi, I had a fusion/laminectomy L5-S1 10/1/09 & have been in extreme pain every since. I have had injections, a bone growth stimulator, a TENS machine, attend pain mgmt since 5/10 & about every radiology test I know of including a CT Mylogram and have also had the nerve test done which shows damage to the L5 nerve. I sought out a 2nd opinion for reasons I wont go into & he sent me for another CT on 9/14/10 which again shows the screws at S1 are entirely to long, sticking out of bone & the left side screw is angled & very close to what he called the artery (i believe he refers to the nerves). Anyway he recommended removing those screws & see how it goes & that maybe after doing so I would be able to use the TENS machine as currently I cannot as it intensifys my pain. After further discussion, he said we should take the screws at S1 out & replace with new shorted screws, a new rod & build up the bone some more. I have slight slippage again & also appears as tho the disc is herniated again L5-S1 & that the discs at L3 & L4 are slightly herniated. He politely let me know tho that he could not tell me it was going to solve my pain issue. I am going for a 3rd opinion tomorrow in hopes of making a good decision. I worked up til the day before my surgery but have been unable to return to work nor do I know what I could even do if I did as I cannot sit or stand for more than 10-15 minutes. I can sit longer if in my recliner with my legs up. I experience severe pain in my lower back, left buttock, thigh, calf & foot with horrible pins/needles feeling in my foot & toes as well as an undescribable burning sensation. I am 37 years old & honestly just want to be fixed so I can move on with my life. This has put myself & my family in a very bad position and none of us were prepared for what has transpired. If you have any advice or tips or things to ask these doctors before I have surgery again, please let me know as I feel I am at a loss. Thank you for your time & hope to hear from you soon
maltlover responded:
Lulu, it sounds like you are doing everything right. Getting a second opinion is smart.....are you seeing an orthopedic spine specialist or is he a neurosurgeon? I always have gotten the best care from the ortho spine specialist, but there are some really good neurosurgeons out there as well.

Just be sure to take all your films from MRI's, ct scans, etc. with you to the new dr. so he can see things for himself.

I really hope that this will get you back on your feet after the recovery period. Please let us know.

bj1208 responded:
hi LuLu - Carol is right - going for another opinion is the best way to make a determination of what needs to be done -

and, as Carol said, are you seeing an orthopedic spine specialist?? I agree with her statement - I've received the best care and advise when I saw one last Feb -

one thing - as with any surgery, and surgery being the last resort, no one knows what the outcome would be -

I worked up til Dec 07 as I knew I would have to have surgery and had it done 2/25/08 (Anterior Lumbar Fusion L5-S1) - I thought it would take a good 6 months to a year to heal and then I could return to work - I was working a contract position and had it set up where another person took my place while I was out - but during my time off I did file for temporary disability - not knowing that I would have to change it to complete disability -

so there are a lot of us out there that are in the same position as you are and yes it does put a strain on the family in all ways and areas -

So I really think you are doing all the right things - and getting the opinions you need -

Please stay with us and let us know how you are doing and what you have decided - take care - Joy~~
lulu_20657 replied to maltlover's response:
Thank you so much, as my luck goes I didn't get to see the 2nd/3rd (depends on how you look at it) opinion doc as he was not able to be in the office on Friday 10/13/10 I must say I was devastated as I really just want to be fixed. Anyway I now have to wait until the 29th and hope I either get the same answers I already got or something better. Thanks for responding:)
lulu_20657 replied to bj1208's response:
Hi Joy,
Thank you and Carol as well for responding as I am sure you know how frustrating all of this is. I forgot to say in my message to Carol that yes my next appointment is with a Ortho Spine Specialist. I will keep you all posted as more of this mess unfolds. It seems as though everyone I meet or hear about has not had very good results with a fusion of L5/S1 which is very saddening, we can send a man to the moon but cannot fix his back.

My thoughts and prayers are with all,

Thank you,
bj1208 replied to lulu_20657's response:
Hi Lulu - you are correct about fusions -

the first couple of weeks after my surgery I was allowed to speak with 2 other patients that had the same operation as I - the first one I spoke with was a woman who was about 6 years younger than me - by her 3rd month post op she was pain free - and the 2nd person I spoke with was a man who was 8 years older - by his 7th month post op he was out golfing -

I truly believed I would be one of these that would benefit from the surgery - at my 6th week post op the x-ray showed I was 100% fused! this does happen, not too many times but does happen - so during the first 3 months everything seemed to be going great - was reducing my pain meds and was walking each day - feeling great -

just after my 3rd month post op everything went downhill - my pain levels increased and were worse than before the surgery - the surgeon kept having x-rays done and said everything was fine - I even had and MRI and CT Myelograms done - everything showed fine - screws, cage, plate - all were in place -

after my 8th month post op the surgeon told me he had done what he was supposed to do - remove the disc and put a plate, screws and cage in - and I was told that he has success of 4 out of 5 patience and that I was the 1% of what is referred as Failed Back Surgery Syndrome -

I was horrified when I was told this - and started doing tons of research - which I did this before my surgery but didn't see this as being a problem for me -

and as the story goes went from one pain management to another -always being told "oh yes we can help you and get your pains under control" but when they couldn't find out why I was in so much pain they told me they had done all they could - one told me to go off my meds and just deal with it!! Then I found a pain management clinic that specializes in PHYSIATRIST care - which goes deeper into pain management than regular clinics. they understand that i have chronic pains and that nothing has worked and have told me that i would be a patient of pain management for the rest of my life - and now I have 3 more bulging discs and my ortho spine specialist says no to surgery stating it would add to my pains instead of making the better -

anyway - let us know what the ortho says and what treatments are discussed - take care - Joy~~
lulu_20657 replied to bj1208's response:
I completely feel your pain & frustration Joy, its amazing how doc's forget to give us the pertinent information they should prior to a surgery like this and even worse when "they kick us to the curb" when it doesn't go right. I never saw my surgeon after surgery 10/1/09 until 4/28/10 & sounds pretty much like your doc of everything looks great or as mine said looks exactly as I would expect it to look. I think it is horrible that in my opionion they take are $$ and run. Like you, not only did I know about failed back syndrome until a few months ago and that was only by my doing my own research but I also did not know that once you have a fusion it weakens the vertebraes above and below your fusion. I find that to be critical information that all people should be given prior to this procedure. I am having serious anxiety attacks over this whole mess and the waiting to see my next opinion is only making it worse, how do you deal with this mess? I will be sure to keep you posted on what I find out and what hopefully the solution will be or should I say I hope there is a solution to this or my daughter will be visiting me in the pshyc ward.

Thank you for talking & sharing your experience with me.

Talk to you soon,
bj1208 replied to lulu_20657's response:
hi Lulu - LOL love the last couple of statements you made so had to respond!

hummmm gosh dealing with this mess???!!!! well there is a lot of cussing and a lot of cussing - oh and a lot of cussing! LOL

seriously, I was pretty upset when my surgeon, which I did not see him until my 8th month post op - i saw the PA from after i woke up in my room to the 7th month post op - well when my surgeon said he had done all he could do and that everything looked great and that i fused 100% - he just couldn't understand why i had so much pain - only stating I was the 1% that fell into Failed Back Surgery Syndrome - well the words that came out of my mouth (can't write) but there was an F, S, GD, BS and some other choice words - and I said that TO MY SURGEON!! LOL - boy did his face turn several shades of red - I basically told him BS that this cannot be all that I felt like i was getting the wrong end of the deal since I was in so much pain and my legs were worse than before surgery (back brace was cutting into pariformus muscles in buttocks which covers sciatic nerves so nerve damage in BOTH legs cause of this)

the PA had advised me to see a physiatrist at that time but I was so p'd that I forgot about that- stormed out the office and told them that they would get paid when I got my disability and if they wanted payment they should complete the forms ASAP (found out after my disability was approved that they were one of the last records to be received! LOL)

so yea no more working for me - was an accountant and now can't stand to sit in front of computer much less deal with numbers (hehe can you imagine what totals I would come up with being on pain meds!LOL)

one way i deal with all this mess is I have a wonderful caring husband, daughters (even though grown - oldest married and 2 grandboys - both Autistic) wonderful mother and father n law and a few friends that understand (yea lost a few that I thought were friends) -

So i look at all I have and that makes me put on a smile and I know that I have a wonderful life.

best thing is to think positive and look at all your valuables (spouse, family, friends etc) and you will see that you really have a goldmine and have lots to look forward to -

anyway - will chat later - take care - Joy~~
An_189594 replied to bj1208's response:
Good Afternoon Joy & Carol,
Hope you both read this as I need some help. I saw the ortho on Friday and am now really confused and don't know what to do or what is right or what is wrong????? First off I called the neuro's office on Tuesday to ask a few questions/clarification and found out the one of his major concerns isn't that the screw is close to the nerves(is, but not major issue) but that it is less than a centimeter from the iliac artery and needs to be removed/replaced. Also received confirmation that I am not fused. Now, on to the ortho- he doesn't think that the screws sticking out is an issue (seems to me its a preference thing, guess kinda like a cook) however he also stated that I am not fused. He said "we normally have good results with the procedure you had but there are people like yourself that it doesn't work) he wants another MRI, blood work to make sure there isn't an infection and another nerve test. I just had a CT on 9/14 and a nerve test in June, WTH? The radiology place is making a fortune off me this year! After all the test I have had why more?? He said have this done, then we can meet again set up surgery to go thru the back, see what all needs to be done, close you up and then set up another surgery date to do a fusion anterior style with heavier duty hardware etc. He stated that often times what they find is that after the initial fusion you end up with issues because the vertebraes above have become weak & need to be fused. Well thanks to the internet I learned about the weaking of the above & below vertebraes after a fusion so if he goes in and fused the 2 weakend vertabraes above isnt this going to become a non-stop issue? Anyway, I do not feel comfortable @having the anterior fusion as they already talk @scar tissue in the back from 1 surgery so if they do anterior fusion it will really be a problem as I have had 7 surgeries thru my abdomen from female issues & was advised a few years ago that I may have to have surgery to remove some of the serious scar tissue I have so what is this gonna do to me? I am really sorry for rambling and jumpin around but I am so confused about everything. The ortho also let me know that the nerve damage could be from when the disc blew out or from the fusion when they have to move/touch the nerves (well L5 is completely messed up as per nerve test & in my Op report it states they may have messed up at endplate but not sure). Ok enough rambling, my husband and I think I should go with Neuro as both state chances are wont solve my pain but because it didnt take has to be re-done. Can anybody help, advice anything????????????????? I am so confused, angry, upset and mentally challenged at this point, hope to hear from y'all soon....

bj1208 replied to An_189594's response:
hi lulu - sorry i wasn't on yesterday afternoon - I was in so much pain that I laid in bed most of the day - ugh hate those days! LOL anyway - first question - Why further tests? the reason for this is there can be changes - literally from one day to another - so this is the reason for repeat tests. Regarding CT Scan and MRI - CT Scans are still using technology from the 80's so they really have not been upgraded as MRI technology has - so even though a CT Scan will show the majority of problems and MRI is normally followed to make sure -as an example - this last Feb I was sent to an Orthopedic Spine Specialist - he ordered a CT Scan (with and without contrast) - the results showed I had 3 bulging disc (had L5 removed/fused - so now L4; L3; L2) he stated he really didn't trust the CT Scan and ordered an MRI (with and without contrast) - this came back with same of 3 bulging discs - so he was satisfied with the results. And the surgeon was point blank by saying NO to surgery advising it would only ADD to my pain levels. EMG test - a lot of times doc's will order this part of the nerve test but may not order the Nerve Conduction Test - The EMG test they measure your arms and/or legs (whichever may be) and then they stick the electrodes and send impulses to the nerve endings. The Nerve conduction test is normally done right after the EMG - as they have the nerve endings marked - they then stick a needle that has impulses and will get a readout of the nerves. Once this is done they can generally pinpoint which nerve root is causing problems - and as in my situation (nerve damage in both legs) they stated that I do have nerve damage but said it was coming from something else that is going on with my back - the findings for myself showed that the S1 nerve root on left side had been taken care of during the operation - however after my operation I was to wear this horrible back brace - the middle part was a wrap around velcro brace and the backside was a big turtle shell - I have a small stomach area/long legs so the brace was not measured and fitted - they came xsmall to xxlarge - anyway the lower back part of the brace (hard plastic) was pressing on the piriformus muscle which covers the sciatic nerves going down the back side of the legs - so this is where my nerve damage is - my left leg is worse than the right.- Your Ortho is correct stating that when doing a fusion (going in thru backside) that the nerves could be moved around and irritated - or from the disc bulge - if the operation is done usually within 6 months of the disc bulge sometimes the nerve roots can heal taking up to a year maybe longer but if after 6 months nerve damage sometimes sets in. so hopefully that helps with the reasons as to why tests are needed - as a matter of fact with me - I need to have a current MRI/CT Scan and EMG with Nerve Conduction Test as my tests are well over 6 months old and I feel that something is getting worse.

Now, regarding your situation - your OP report shows that they may have messed up but not sure - Was this the Neurosurgeon's note? I would have 2nd thoughts about having him cut on me again - What I would ask is: "Can you fix the problem?" and "Would another fusion add to may pains?" I would discuss this with both surgeons and you and your hubby need to really think about who to go with. YOU BOTH need to be completely comfortable with the choice of surgeons. Hope this helps - let us know what u decide. Take care - Joy~~
lulu_20657 replied to bj1208's response:
Hi Joy,
Im sorry you had such a bad day yesterday and sure hope today is better for you. Sorry if I missed it in your note but are the doc's not able to do anything for you?

Guess im just frustrated. To answer your question @the original surgery & OP report, I am seeing completely different doctors, I wouldn't let that neurosurgeon touch me with a 10' pole. I am seeing a new neuro & previous ortho. I had all the nerve test both emg & conduction done in June. My biggest concern is if I go with the ortho he wants to open me up in the back, confirm everything, close me back up and then set up another date to redo the fusion anteriorally (not sure I spelled that right). As far as solving my pain, both doctors have told me that they could not guarantee the surgery would solve it but because I am not fused and other issues with the screws at S1, I need to have that fixed. After the nerve test I was told the damage was likely permanent and to be honest that is how I feel. I have issues with both legs but the left is so much worse I kinda have to laugh at the right. The last couple of months the left has been so bad I can be standing or walking and it completely gives out on me. The doctors always ask me what bothers me the most, the leg stuff or the back. I am not very good at explaining it and sometimes I feel like they think im looney but both the back pain, buttocks and leg are non-stop but the back when its bad is really really bad, feels as if someone is hitting, stabbin or punchin me there (now you know y they look at me crazy) it is always like a throbbing pain tho. As far as the leg, it is a burning, tingling, going to sleep feel all the way down to my toes. These are the best descriptions I can give anyone. What I got from both docs is that they need to go back in regardless of whether or not it solves my pain and honestly I want the left screw at S1 moved asap as I am not comfortable with the thought that I am not fused and the top of the screw is less than a centimeter away from that artery. Somedays regardless of how much I hurt, I have things that need to be done and will tell myself screw it, cant make you hurt anymore than you do, so what if I pick something up and that screw shifts & hits that artery, I wouldn't know til when? I appreciate your input and help & hopefully I have a decision very shortly. I look forward to hearing from you and anyone else with help & advice and will keep you posted on my decision:)
Talk to you soon,
bj1208 replied to lulu_20657's response:
hi lulu -

well I had Anterior Lumbar Fusion L5-S1 on 2/25/08 - by my 6th week post op I was 100% fused!! I was doing great til just after my 3rd month post op - then my pain levels shot up over a 10 and have been that way since -

they could not do anything for the lower back pains or the nerve damage in both legs - this last Feb I was hurting more and more so was sent to ortho spine specialist had CT Scan/MRI done - now have 3 more bulging discs - he said NO to surgery as it would only add to my pains -

I cannot have steroid injections as I have allergic reactions - facet joint injections, piriformus injections, and had Radio Frequency Nerve Ablation done (2 times) only thing that that helped was the numbing agent and that lasted for about 30 minutes, had trial spinal cord stimulator implant (was great for nerve pains in legs but increased back pains trifold), used TENS Unit which increased pains so in the last 5 years I have been to 5 surgeons (3 neuro and 2 ortho); 8 pain management clinics - 6 physical therapist - have had numerous x-rays, MRI's, CT Scans, 4 discograms (UGH Barbaric procedure!!) and 3 Myelograms AND believe it or not I really don't have that many gray hairs!!!! LOL I think that covers it! LOL oh and the assistant that helped the pain doc to the trial spinal cord stimulator implant said I was ATYPICAL - ok so I thought something was wrong and asked him what that meant - he laughed and said that most treatments that work on others don't work on me! LOL

The pain clinic I am going to now practices PHYSIATRISTS - which they go deeper into pain management treatments than other pain clinics - since I have allergic reactions to steroid injections they tried a numbing agent/anti-inflammatory med injection into my hips (hurts because of how I sleep) and it's been almost a year and the shots are still working - so we decided to try them in the back - so had it done and went back in 2 weeks and told him it didn't work so he said NO MORE - he did tell me that I would be a patient of pain management the rest of my life!! I already knew that but to actually have the doc say that just kinda hit hard - so I've been tossing around the idea of having the pain pump implant done but have been scared as i've had so many problems with everything else -

well, just thought I'd give ya a little back ground - talk to you later - Joy~~
An_189595 replied to bj1208's response:
Wow Joy, you have definatly been through alot and I certainly can sympathize with you. I also have the TENS machine and cannot use as it not only increases the pain in the back it makes my left leg and foot burn worse than it already does, honestly feels like im holding my foot over an open fire. The PT looked so shocked & said she had never heard of anybody claiming it made it worse, I said well I dont know what to tell you but it does. As far as the spinal stimulator thing, both surgeons and the pain mgmt doc have mentioned that and I proceeded to let them know not a chance in h***. Based on horror stories I have heard & read and my own issues that is not an option. They both also said maybe after the screw is relocated I might be able to use the TENS as the screw is so close the the nerves, blah blah blah. Also, I am not a fan of the anterior fusion as I have read alot about it and mostly not good. Also, I cannot remember if I stated in a previous note that I wasnt a fan for multiple reasons, all the docs talk about how much scar tissue I have in my back from one surgery, what the hect is it gonna be like if I allow them to go thru front as I have had 7 abdominal/pelvic surgeries and already know I have serious amounts of scar tissue there as my OB/GYN thought he was gonna have to go in and remove as much as possible because it was causing me issues after my last surgery? Once again, I find myself rambling, sorry:(
Anyhow, I am still really confused as to what to do, which procedure it best??? As far as fixing my pain, they have all told me that chances were it would not solve but because of the issues, such as not fused, the screws at S1 etc. Also, they have all talked about the fact that the nerve damage is most likely permanent, the doc that did the nerve test told me that when he did the test in June. They have all also let me know that "although we have excellent results with the procedure you had done, there are always cases such as yourself where it has made the problem worse (failed back syndrome I believe was the terminology he used)" Well I still haven't made a decision or should I say I have made a decision I just havent done anything about it. After the night I had last night, instead of being on the computer I should be scheduling my surgery. Well I need to go laydown before I have to go to the pain mgmt doc and hope I can sit long enough to get there. It is such a bad morning, I just wanna climb in a hole. Thanks for listening to me & letting me vent.

Talk to you soon, Joy and will keep you posted on what I do! Hope you have good day:)

bj1208 replied to An_189595's response:
hi lulu - yea i can understand your frustration - my pains are getting worse now with fall/winter settling in - I live in MO and it's just so darn cold here - and for some reason the coldness goes straight to my plate then my whole lower part - just hate this time of year! LOL

my cousin has a neighbor that went to this one spine specialist - so I looked him up - impressive website - it's funny - he is not on my husband's ins but his partner is! but there are a lot of doc offices that will do that - this way they can get a lot more clientele - if u have a certain ins then one or the other doc can see you - they are not just tied down to certain ins -

i'm gonna talk to my pain doc on my next appt on the 17th and ask for a referral to him - get updated MRI/CT Scans and see if there are more bulging discs or the 3 bulging discs I already have if they are getting worse and pressing on nerve roots -

anyway - I think it would be best for you to get as many opinions as you can and see whats out there -

take care - talk to you later - Joy~~
lulu_20657 replied to bj1208's response:
Good Afternoon Joy & Carol,
I never got back on here to tell you what I was doing but I go back in for surgery tomorrow 12/8/10 the surgeon states that chances are it will not relieve my pain & issues but I am not fused and the hardware at S1 must come out and be replaced with shorter screws to prevent possibly hitting the ilieac artery as well as the possibility it may be touching the nerves although it does not show so in the films. They will also be trying to remove the catherer that was left in me by the last surgeon. I know that chances of this surgery making me feel better and give my life back but at least I wont wake up one day wondering why I feel like death warmed over or unable to get up because I have no strength etc but I am still trying to stay positive and hope and pray that it does. Just wanted to let y'all know and if you would, please keep me in your prayers as I will you all!

Talk to you soon,

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