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Pain still 8 months after fusion surgery..any help please...

wildfire_101wwildfire_101 Posts: 68
edited 06/11/2012 - 8:55 AM in Back Surgery and Neck Surgery
Hello.. I have been here many times before but haven't for a while now.. well i read here all the time just don't comment..but anyway i finally had my L5-S1 spinal fusion done December 27th of 2010, so about 8 months ago...as for the surgery it went well, the disc was totally blown and practically in "pieces" as the doc put it. I spent 3 days in the hospital but b/c I have RSD (nerve disorder) he wanted to keep me longer, actually about 4 days longer and i pretty much begged him to let me go home early. So he released me after the 3 days.In which about a month into recovery i realized was a huge mistake...but anyway i have been in PT now since March and still there...I started having problems with my right knee about 7 months ago or so and it gradually just kept getting worse. Needless to say i had my PT check it out and he found alot of swelling and referred me to an ortho doc for it. I got in to see him finally (after a 2 month wait)and he did x-rays and nothing jumped out at him as to what could be possibly causing the pain...So got sent in for an MRI and it came back kind of inconclusive other than it showed a major calf strain and he put into PT as well for a month and if it didn't get better he was going to do a diagnostic surgery on it.. basically go in laproscopically with just a camera and look around and if he finds something fix it.. so i am dealing with that now.. granted he nor the PT guy can figure out how i got a calf strain being i am not active enough for that to even happen...so there is 2 doctors now that have me in PT. Then went and saw the PM doc last week and he looked at my back b/c i was really achy up in the L1-L2 region, so he checked it out and i guess my back is spasming like crazy, so in return he put me in PT too.. regardless that i am already there either way..but now i am there from 3 different doctors for different things, other then what the PM doc sent me there for it is kind of tied to my surgery in a way...I was giving a background of what has transpired in the last 7 to 8 months so hopefully someone can give me some advice but to do that i wanted everyone to know what is going on right now....Everytime that i go see my back doctor i have to go and get x-rays done to make sure everything is fusing properly.. so far he says everything is okay and looked fine..but my question or questions are after all this time my back still kills me but only centered on the right side of my back...and the pain is severe in my back and it also hurts in my right butt cheek and my thigh..this has been going on for almost 2 months now and the back doctor says it is everything still settling down from the surgery...but i'm not sure that i totally believe that..he also has told me it could be a nerve thing but i know what nerve pain is all about being i have that disorder in my other leg. So could this be? what is going on? Has anyone else experienced this before after a fusion surgery? he (back doctor) said the fusion part is going fine so no one can figure out why there is pain still there..Can someone please possibly tell me what this is? any advice would be greatly appreciated...sorry this post is so long but kind of needed to explain a few things..thank you in advance....


  • Wildfire,

    In answer to maybe a reason why no responses yet isn't your medical issues, but with NO paragraphs, it is very difficult to read your post - we lose track and give up. If you read in the new member section, the administrator of this site brings this sort of issue up as well.

    Now this thread... I've not had back surgery yet (pending two surgeries L2/3/4 and L5/S1), but have had 2 cervical surgeries and a revision is now on the list as well.

    Spasms and nerve pain can last a year or more as nerves only heal at about 1mm a year if they were injured. Additionally your whole spine was changed with your fusion! The muscles, ligaments, nerves etc., have to adjust to this change - and hence bring up all manner of new pains and symptoms until things settle down. I am now two years post op from my last cervical fusion, and still get zingers and lingering pain in my arms.

    Have they had you undergo new MRI's, electrical studies, x-rays for your back - anything besides PT and shots?

    As for your knee, I wouldn't let anyone do exploratory laproscopic surgery on me. With the way imaging is now a days, there should be no need for that. Just my thoughts there.

    I would find a fellowship trained spine specialist to do a complete exam and work up on your back. My surgeon blew me off so I am now with another surgeon. He has no "dog in the fight" with the issues in my neck, so his ego isn't bruised and he sees a spine patient, not a possible failure of his surgeries - even though I don't blame my surgeon for my neck issues...

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I started getting thigh pain about 6 months post op. I was told it was "scar tissue" etc. As you will see from my signature I have had issues with infection. Every time I get a flare up now I get thigh pain and I have constant back pain. So yes, I have had similar pain to you! The trouble is that backs are so complicated it is hard to tell what causes the pain. Also, so soon after surgery, it is often put down to "healing" pain.
    I hope you get some relief soon.
  • Wildfire,
    Where is your RSD? I ask as with the doctors not coming up with anything on your knee, if that doesn't have something to do with your RSD. I have RSD, and know a little about it, so as to why my questioning on it. There are yet other images they can still do before submitting to a exploratory surgery. Also if your knee is causing you issues, I wonder if your not walking out of balance hence causing you more issues with your back? Or vice versa the the sciatic nerve runs right through the knee and branches out to the peroneal nerve, and could be related to your back. First I think they should be running a new EMG as well before doing anymore surgery. If you back is that bad, doing surgery will require crutches thus making your back even more stressed. I am in the same situation that I need a foot surgery, but it is also the foot I have RSD in, and me using crutches is not a option either at this point and time.

    I think you need to resolve the back issues before doing anymore surgeries. There would be nothing worse than having more areas of your body torn up and painful causing both more physical and emotional pain. They have images such as myelopgrams, MRI's to look at your spine and see what is going on. You need to some how get your doctors all talking together. I love my spine surgeon, so that all the doctors talk together, I ask him whom he would like me to see regarding other issues, such as my knees. Also I do suffer from extreme knee issues, that really need to be replaced. I am using the injections and braces for now, as my spine is far worse than my knees and needs the most addressing, which is why I suggest this to you.

    As far as anyone here suggesting what is wrong it is kind of difficult as we are not doctors, but we can tell you as I have how we manage things. Read around to some other post of members having issues post back surgery and the things they are dealing. Have you tried massage therapy? What about a muscle relaxer do you take a good one? Opiods won't cover muscle spasms. Also have you seen a nutritionist? I ask as proper eating is also a key. Has your PCP checked things like your vitamin D levels and potassium as both of those can lead to muscle spasms.
  • I just want to say upfront that i appreciate a some info and advice..As for your question about where the RSD is it is in my left leg from a knee surgery in 08' that my body rejected.. and like an idiot i let the same doctor go back in again in October of that same year to remove some scar tissue that had built up on my quad muscle...i was already diagnosed with RSD by then...Got diagnosed in July of 08', so in between the surgeries pretty much..and since that surgery it has been nothing but down hill from there...They still are having a hard time getting it under control being it has been so long before more treatment was done.. I was in between pain management doctors for a year b/c I dropped one PM doc and found a new one but it took forever before i could get an appt and get in... They were talking about doing the "exploratory" surgery on my right knee at the moment...I am just tired of being in pain all the time... it gets to the point that it's hard to walk sometimes and get off my recliner by myself...I can't even shut the foot rest sometimes b/c I don't have the strength in both of my legs to do so...I have quad atrophy on my left leg right above my knee from having an immobilizer on it so long right after the left knee surgery happened, i woke up from surgery with it on...when you have 2 bad knee's and a bad lower back it's hard to try and have some type of quality of life...and i haven't had any sense of balance for quite sometime now, but trying to work on that in therapy..My PT on Thursday did some looking around and "surveying" as he called it and said that I was starting to show signs of RSD in my right knee now...the discoloration, temp changes, and when he made me flex my quadricep muscle he was pushing on it and i felt pain instead of pressure.. but these are his thoughts but wants me to talk to my PM doc about it, so i will when i go back in again...So to be totally honest I have no idea if my leg is tied to my back at all...all i know is that the pain hurts and it is mostly on the right side as i said before...and yes i take a muscle relaxer it is valium and i also take a pain killer as well.. I take Neurontin for the RSD and it helps to a certain point...but for now that is all i can do..and i have my blood drawn once a year just b/c i have high cholesterol and they check lots of things but not real sure what all they check for totally..Hopefully i answered all the questions you asked.. and gave enough information for you to understand my situation...thanks again for the response....
  • I am sorry about my post that was hard to follow...i didnt know about the paragraphs and that sort of thing.. I have been on this website for over a year now and usually have no problems with responses or info but don't write such long posts most of the time... But thanks for the advice, it was good to know..and i had an MRI on my lumbar part of my back about a few months ago and they saw nothing out of the ordinary other than alot of scar tissue built up but that was on my lower side of my back near the incision but on the left side..Other than that he hasn't ran any of other tests...and just tells me that not everything has settled yet from the surgery..and that is about it....
  • Hi,

    Sometimes a fusion can put stress on the areas around it. I had L5/S1 fused (after being fused L1-L5) and this caused my SI joint, which was the original problem before my back started to deteriorate, to become painful.

    I had 2 sets of cortisone injections, the first did not work because the PM doc could not get very far in due to scar tissue. The next one was successful This is also a diagnostic tool to let them know it is the SI joint that is painful. I tried a new anti-inflammatory and that combined with the cortisone and my pain meds is keeping it somewhat under control.

    Good luck with everything and keep us posted as to how you are doing.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Paragraphs are basically used with changes in thought or topic area. Plus it is easier for a lot of us to read. Like was said, some of us get headaches trying to read long posts with no breaks. :)

    As for the MRI and its findings. For example, my last MRI shows a lot of things, but my C7/T1 doesn't look "too" bad, but having an electrical study (actually had two of them) showed that the level is actually going bad. This also corroborated my physical symptoms. A good spine specialist will use your exam and these other diagnostics to help come to the bottom of what is going on. Think of each as a part to a puzzle they put together.

    Have you seen a spine specialist, or was the MRI and viewing of it by your general practitioner? From what you're describing of what you're going through, I would get with a spine specialist. Please let us know how it goes.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • My back doc is a neurosurgeon, he is the one that did my fusion and he is the only one that i see for my back...My primary doctor isn't involved with this in anyway..My pain management doctor also looks at my back as well when i go in..he is the one that i see for the RSD...My back doctor ordered the MRI and read it to me..and it said everything was intact other than that scar tissue area..but like i said that was months ago..but this on set of pain in my right lower side of my back, butt cheek and the back of my thigh is new since that last MRI..

    Since i have had this fusion done the pain hasn't really changed for me, as in before i had the surgery...I just want to be pain free probably like most people here on this site...My back constantly hurting, it is just that one side that hurts worse than the other or will come on all of the sudden without notice...then i take a pain killer but when it wears off it comes right back.. this happens more often than not...

    I just get to the point of wanting to give up and come to an understanding that i am never going to get better...In fact I have applied for SSI, this is not state disability either, this is the money that i have paid in through my years of working...but i finally got everything done that they wanted me to do and now waiting on a decision..they had me go see a psychiatrist and one of their medical doctors...in which the psychiatrist also worked for them as well....had to go see him b/c i take anti-depressants for chronic pain...I really do hope i get "approved", though i have heard from numerous people that everyone gets denied the 1st time around...but with 4 kids and only 1 income through my husband it's hard to make ends meet.. but there is no way that i could even remotely think about going back to work..my body couldn't handle it...sorry for the rambling.. but i did separate the paragraphs this time...lol
  • Many of us can say "Thank you" for the paragraphs. :)

    I know for me, when everything started going south, my Neurosurgeon sent me back to my Neurologist to find out what the heck was going on....little did I know - I'm an official mess! Lol!!

    I'm glad you are with spine specialists, specifically the surgeon who worked on you, and will hopefully work with you. I got the impression my surgeon was/is blowing me off since I am not an "in and out" kind of case anymore.

    Did you tell your surgeon of the changes you feeling since the last MRI? Our bodies are very good at telling us when something isn't right. So far mine has been pretty well spot on. I for sure would keep after them until they hear you and really work on troubleshooting what is going on. We normally don't hurt for "NO" reason.

    Are you per chance keeping a log of what you're going through? When you have pain, what makes it worse, what helps, how often this pain affects you day to day, etc.? I have human outlines that I use to mark what hurts (mechanical or nerve pain), what tingles, what is numb, what is weak. This way my doctor can "see me at a glance." What's that phrase, "A picture is worth a thousand words?"

    Please keep up the fight. Your body is talking to you, YOU are listening, so now it is time to get the doctor(s) to see it and hear it. Please let us know how it goes. Gentle *HUG*

    As for SSI, that is for very low income earners. SSD is social security disability. Did you file for that as well? I mention that since you said your husband is working - household income. As for a hand out or earned, no one on here will think you're looking for a handout. SS is something we pay into, and if God forbid we need it early due to medical issues, that sadly is a paid for, "earned" benefit. Yes around 70% get turned down on the first go around. Fingers crossed yours go smoothly.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I hear you on the whole mess thing...I always keep hearing how odd of a case I am and also not a straight cut one at that either...lol And yes i have told my doctor about the pain when i saw him last month and just took notes and told me it is nerves still out of whack basically...he asked me if the pain went down my leg to my feet etc...and of course i had said no b/c it hasn't, not yet anyway...

    No i don't keep a "diary" of when it hurts and what made it that way or that type of thing...though i have been told that i should....most of the time laying down for a few usually will lighten it up a little bit..but that is about it as for relief...the RSD in my leg doesn't help either...since the surgery it has been flared up ever and hard to control...

    I have a question for you...i know what nerve pain is all about and how it feels but if i had mechanical i am not sure that i would know what it was.. So how can you tell a difference if that makes any sense? I never get any tingling or numbness, nothing like that..I just get severe "hurt" pain when it comes on.. but I always hurt to a certain extent.. some bearable and some not so much...and i am hanging in there, I have been for over 3 yrs now...

    As for the disability thing I guess then it is called SSD.. for some reason i thought it was called SSI.. but SSD is what i applied for..I have been working up until 3 yrs ago when i had that knee surgery for 13 yrs straight and i never had a sit down job...i was always on my feet 8 hours a day..I worked in retail as a bagger starting out, then a checker, bakery and then promoted to a swing supervisor...Oh course this is between 2 grocery stores.. so i worked for every dime of the that $$ that i put in there...and my medical issues keep me from working right now and i didn't have any other choice...If i went back to work i honestly think my body would give up and totally breakdown...Just being it isn't in the best shape now..lol Keep you posted on how all that turns out..
  • I have been following your story and wanted to give you a couple of ideas. I had extensive back surgery 24 hrs ago and was pretty much pain free all that time but my fusion at one of the levels was not stable and ultimately had to have an ALIF and posterior rods and screws on July 22, 2011. Before I went into surgery I tried everything for 1yr. My pain management dr did medial branch blocks, nerve blocks, caudal lysis, ablation, etc. The was one treatment that she did that specifically worked on the scar tissue (approx 6 inches from waist down to top of coccyx). She was trying to loosen up the scar tissue and I absolutely felt that the treatment was helpful. Also, when going to another dr, the massage therapist specifically deeply massaged the scar every time I went and I think that was helpful too. I guess my point is that you should leave no stone unturned and you should be as proactive and as knowledgable as you can be. Try to read up on caudal lysis, ablation. Others on this website didn't think it was helpful, but, it was very good for me. If I didn't have all the instability in my back, I
    would have not needed surgery. Unfortunately, I had to have it. That being said, I am so glad I did because I believe after the recup process I will have my life back and be pain free!!!!

    Hope this is helpful and if you want to ask me any questions, feel free to private message me. Hope you get some relief and start to feel better every day
  • Yeah, being a mess (see my profile or sig) is such a fun ride - NOT! (G)

    My pains go down to my feet as does numbness to my feet (standing/sitting). Laying down with my legs and head elevated give me the most relief.

    Nerve pain vs mechanical pain (my take on it) from my body and medication response. Nerve pain most times is a very sensitive and burning feeling, or a tingling/buzzing that actually hurts over time vs irritating.

    Mechanical is to due with ligaments and muscle involvement issues. That achy, tight, stiff, throbbing feelings - heat or ice might help. My back gets a mix of mechanical and nerve pain. When I stand to brush my teeth for example, the pain in my back starts to ramp up; if I stand straight up, some of it goes away immediately, but then the burn stays, and too it travels down my thighs. I think the 'burn' is the key. Also, narcotics don't touch it.

    SSD. I paid into the system for over 30 years, and we 'earned' it should medical issues come up. Please NEVER feel like it is a hand out, or better yet, let anyone treat you like its a hand out. They pay in, as do you and I, but unfortunately that "disability insurance" clause is used by many well needing folks! :)

    I had to retire from my job (govt.) as a law enforcement officer and pilot about 2 years earlier than I wanted to, but it is what it is. My SSD is embedded in my disability retirement. Had to apply for SSD, but turn down or approve wouldn't have made a difference for me, as again, it is internal to my retirement.

    If they turn you down, you might want to get an attorney (specific for SSD) to take it to the next stage. They by law are restricted on what monies they can garnish from you for the case (SSD) being approved. Remember to look out for #1 (you) as the government won't. It sounds like you are on the right track. :)

    In closing, I would start a pain log and maybe get some human outlines to draft what you are feeling. It can't hurt (no pun intended). This tool can possibly show the doctor "what" he isn't hearing.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thank you very much for clearing up what the difference is between those 2 things.. and now that you have told me it all makes sense now and i realize i have experienced both..though i know what nerve pain is but mine is like i feel bugs crawling all over the area that is affected on top of the burning sensations...as for the mechanical I feel that too, just higher up on my back, in the L1-L2 region. My PM doc just wrote me a script for PT for muscle spasms in that particular area the other day, not that i wasn't already there anyway...lol His script was for 8 weeks, twice a week.. I am never getting out physical therapy...lol

    I have tried the heat and ice therapy, for pain and it does nothing for me but irritate more than anything..Ever since the RSD was diagnosed I have been hyper sensitive to either one of those 2 things(heat,ice)..Laying down for a few is about the only thing that works for me, other than sitting in my recliner with my legs propped up...That also helps from time to time...

    As for the SSD if/when i get denied, the first time, I had planned to get an attorney. I wasn't going through the motions of reapplying over and over again and have this carry out for 2yrs+, like my neighbor across the street from me...so most definitely after the first denial, which i am sure will happen, an attorney was my next step...Figured he/she could get me there faster and quicker than i ever could at getting an approval..

    i will most definitely try to get a pain log going.. I don't go back to see the back doctor until the end of Nov. and he wants a CT scan then to make sure the x-rays are accurate in what they are showing..Plus you can see more with a CT scan than an x-ray any day anyway...lol but if this pain in my back that we have talked about doesn't go away w/n a week give or take, i am calling to try and get in to see him. But we'll see what happens...
  • HI Wildfire,

    Have you done sensation therapy for your RSD? While yes it is painful it has to be done, and in the long run pays off. Also have they done any sympathetic blocks for your RSD? Have you tried clondepin for it either? I used the patches for it directly on the area, which helped. You need to talk to your pain management doctor about getting a emg study, and deciding what is what.

    As Brenda has explained the pain journal will go a long way with the doctor, helping him/her understand your wanting to get to the bottom of what is wrong and how to best address it.

    I am glad to see you are in physical therapy. If your physical therapist thought possibly you were getting RSD in the other leg, did they report that to your doctor. It just bothers me to see anyone not get the appropriate treatments fast enough to stop the progression of it. Ask them for a 3D bone scan that will for sure tell if you are developing RSD. If it was not done on your other leg it should be done. To many doctors throw that diagnoses up there without do the proper testing and treatments for the condition, and the patients ends up be worse off for it, in some cases.
  • Wildfire,

    Meant to reply earlier, but it was a hurt locker type day...a bit better now.

    I don't know much about RSD, but from what little I do understand, it can spread to other areas of the body? Like Tamtam said, I hope that they test you thoroughly to be sure that indeed that is what is causing your pain.

    Nerve pain verses mechanical. I know for me, my surgeon recognizing fairly early out that most of my issues are nerve pain, put me on Lyrica which helped immensely. Secondly, narcotics as needed when the mechanical pain ramps up. The key is figuring out which is causing the issues.

    I'm glad to see you have "plan B" in place if your SSD is turned down. Some people get approved right away, others it can take multiple attempts and up to 2 years! Sad...

    I'm glad you're going to start a pain log. If the doctor is open minded, it might help a lot, and too less chance that you will miss letting him know something. The other thing I do is write down my questions and concerns before my appointment so I don't forget. Before, I use to be half way home and go "Damn, forgot to ask him this!!" :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • never a cake walk. I had three levels fused and had three or four major flare-ups of pain post-surgery. I think one or two of those was way past eight months.

    As your surgeon said, things are still settling down from your surgery. This isn't the same as healing a knee or an ankle -- you have a huge concentration of nerves around your spine as opposed to one of your extremities. Recovery is going to take a long time. Tissues and nerves have been disturbed and, as they heal, they will cause scar tissue which may impinge on the nerves even more.

    If you haven't already done so, you might ask your PT about electronic muscle stimulation. I have an EMS device that I still wear occasionally, and my surgery was almost three years ago now. It really helps to ease up the pain when I feel like my butt or hip is seized up.

    By the way, I'm still in physical therapy. I only go a few times a month now, but I still go. This is not an easy thing from which to recover.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Hi Wildfire. I am sorry you are having a hard time. My fusion was a year and a half ago and I am still struggling.

    I had a few ideas~has your surgeon or PM considered a hardware block procedure to see if your hardware is causing your pain? From what I have been told the best test for this would be a CTscan.

    After my fusion I had a lot of knee pain and swelling. It was due to my SI joints being out of alignment. My PT would check me every session and help get me realigned.

    Have you tried aquatics? Being in the water takes away the horrible effects of gravity and it feels great. It would help with both of your knees.

    Thankfully I used a pain journal. It was really to justify my use of meds, but I took it to my 3 month post fusion follow up. Thankfully, I mentioned it to my surgeon and based on that info, he ordered an immediate MRI and I had massively herniated the level above my fusion. ugh!!

    Wishing you all the best! I know hurting and struggling while raising kids is rough! Hang in there!
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