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    Old 05-18-2014, 11:06 AM   #1
    lubear2003
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    Angry Decompression made my SI pain worse

    Hello -

    I haven't been on the forum for awhile .... I'm a 45 yr female. History: I was in a high impact auto accident in 2005, fractured pelvis, fracture S1, sacrum, inferior/superior pubic ramus, broken left hip, fractured right hip. I was hit on the left side, however my right suffered as well to a lesser extent. All injuries were treated conservatively with a corset. I was on my way to the store to get milk, and didn't come home for 5 weeks. I went on to heal, return to work, etc. but wasn't able to sleep on my left side since. I could deal with that, because I still had my right side.

    In Sept. 2012, I was having a normal day, until suddenly, as I was driving, my left hip & thigh were stabbing so bad, I was in tears & had to pull over. That day was the beginning to the end ... I started seeing a Neurosurgeon for my spine problems (severe nerve compression @ L5/S1, herniated L4/5, bulging L3/4, bone spurs, stenosis). At my pre-op appt, he asked, When was the last time you saw an orthopedic? Did you know your sacrum is cracked?, That's chronic, Your SI Joints are worn? That's chronic. I could tell something was up ....but as he was preparing for a fusion, he called me the day prior to surgery, to caution me that both decompression or fusion would make my sacrum & sacroiliac joint pain worse. Initially, he felt that a fusion would less impact my sacral problems. My guess would be the absence of a laminectomy? Thus, I was referred to an orthopedic spine surgeon at UCSF. He disagreed with the neurosurgeon, that a decompression of L5 would remedy my problems, and could not see any other problems with my pelvis. I subsequently had the decompression Oct 2013.

    Less than 4 weeks after my back surgery, I had SI Joint injections done (procedure excruciating). My pain did improve; however, at that point I didn't know what pains were coming from where .. my back? my pelvis? I did feel good for a while. Two months ago, my sacral & SI pain came back with a vengeance. I am in 3 x pain than I was before the back surgery. Mmmmm ... The Neurosurgeon was right!! Being Naive to all of this, I went ahead with the surgery despite the cautionary warning & difference of opinion. At this point, I had been seeing specialist after specialist to no avail. I felt like I had no fight left. I had been dismissed by 2 other orthopedic surgeons in my area. My Primary told me that I can't give up, and to work with my insurance to find someone that specialized in both areas.

    I decided not to be discouraged anymore, and be proactive. Thus, I found a wonderful orthopedic surgeon in San Francisco, CA. Again, I found myself going to the City (2 hrs away) for help. He reviewed my films with me, and defined my SI problem & unresolved issues with my back. The L5 level still has problems, despite the decompression. He said that so many spine surgeons do decompression's, and it doesn't resolve the patients problems. He assured that he can help me & I will be able to work again. I left his office sobbing with tears of joy, but at the same time, tears for how many times I was dismissed. This is my life we are talking about!! I see him again on 5/28/14 to go over my options. When he told me I have options, I was beside myself. I go from being dismissed to having options? Wow!

    I suffer with debilitating pain every day. I have problems sitting, standing, walking, laying down. What can I do? NADA! My sacrum aches, *****ly; both sides of my SI hurt. I cannot lay on either side, I've been sleeping on my back for 1.5 yrs. The last coupla months it's been even more difficult to sleep. I have been using stacked pillows under my knees since all of this started, but now, I have to position pillows under each thigh, and reduce the contact of my sacrum from touching my mattress. Getting into bed is a total production to the point, that I require assistance to go to bed. I have hip pain, groin pain pubic pain, achy bladder, urinary retention/urgency, pain at my urethra, random sensations inside my intimate parts, burning from vaginal to rectum, buttocks, thighs (front/back), knees, calves, ankles, feet toes. If I don't take my full dose of Lyrica, I feel like I'm frying from the pelvis down to my toes. My sacrum pops all the time, and my SI joint pops every time I lift my legs to get dressed. Usually clothing that has leg holes.

    My board post pre surgery: http://www.healthboards.com/boards/back-problems/926976-help-mri-lumbar-spine-report.html

    I need to vent, gather advice, support, etc. It's been a LONG road!
    Thank you for reading my story.

     
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    Old 05-18-2014, 04:53 PM   #2
    teteri66
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    Re: Decompression made my SI pain worse

    I will have to spend more time looking at your earlier report to be able to respond in more detail, but I wanted to ask you something first.

    When you said you had a decompression at L5, did they do a laminectomy? It seems like that would hardly be adequate for all the issues you have.

    Second, you say that your sacrum pops and the SI joint pops. The sacrum should be stationary...it is probably tendons or ligaments that attach to the sacrum that pop.

    You definitely need to get those nerves decompressed since you are having bladder issues, groin pain, etc. and, the sooner the better.

    I will write more later after I read your other posting. I am really sorry you are having all these problems. I had SI joint issues after being fused from L3 to S1. It took a good year to work my way out of it...but I was able to resolve the problems. My left SIJOINT periodically pops out but I can usually get it to slide back myself.

     
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    Old 05-18-2014, 05:19 PM   #3
    teteri66
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    Re: Decompression made my SI pain worse

    " There is secondary evidence for some mass effect upon the left L5 nerve root with displacement. Consideration could be given to Lumbar CT myelography for further detail, if clinically warranted."

    Did they find out what this mass is? It is one thing pushing on the L5 nerve....there are several discs that have annular tears which would not be helped by decompression, and could be causing lots of pain.

     
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    Old 05-19-2014, 06:52 AM   #4
    lubear2003
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    Re: Decompression made my SI pain worse

    Hi Teteri -

    Thank you for responding to my post:

    When you said you had a decompression at L5, did they do a laminectomy? It seems like that would hardly be adequate for all the issues you have: Yes I had a Laminectomy, as well as Laminotomy, Facetectomy & Foraminotomy at this level. Right after the surgery, while in recovery, the spine surgeon told me. "This is going to happen again". I have read many articles about "Post Laminectomy Syndrome"; as it refers to worsening SI problems when the lamina, or portion is removed. I believe I fall into the category of "Failed back surgery" as well, because the surgery didn't resolve my problems. Being new to all of this, my worsening symptoms jive with the neurosurgeon's caution. What do you think?

    Second, you say that your sacrum pops and the SI joint pops. The sacrum should be stationary...it is probably tendons or ligaments that attach to the sacrum that pop: That makes sense. I have pops around the sacrum when I bend slightly forward or to either side. My sacral bone is always tender & constantly aches, feels pin-*****ly all the time. If anything touches/barely rubs on it, I feel sharp shooting electrical shocks all the way down to my toes & my legs turn weak. Even a tag at the back of my sweat pants rubbing on it will cause the same pain. Also, the pain around that area is sharp on both sides, and extends around in the shape of a bullseye (best way to describe). My lower buttocks have sharp burning, where I'd be sitting on a saddle. I get burning and/or pain in the perineum, rectal, vaginal, or all at once. The worse part is when everything burns from the pelvis down to my toes. I never had these sensations pre surgery.

    Did they find out what this mass is? It is one thing pushing on the L5 nerve....there are several discs that have annular tears which would not be helped by decompression, and could be causing lots of pain: I was never informed what the mass at L5 is/was. I assumed it was a disc pushing on the nerve?

    The new surgeon I'm seeing is the first one to actually review my films with me. At my last appointment, he said, " you have 2 conditions that are fixable", thus wanted a new lumbar MRI & pelvic CT done on 5/28 to study further; afterwards, go to his office for consultation. He could already conclude by the earlier films, there were problems at both SI joints greater on the left, lesser on the right; to what extent, I don't know?

    Let me know your thoughts.

    Last edited by lubear2003; 05-19-2014 at 07:29 AM.

     
    Old 05-19-2014, 07:00 AM   #5
    lubear2003
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    Re: Decompression made my SI pain worse

    I had another MRI 7/2013. It's similar to the report from the 10/2012 report (done 9 mos apart). There were some changes in the following areas:

    L3/4: There is right foraminal disc protrusion resulting in mild left neural foraminal stenosis.

    L4/5 : There is a prominent left lateral recess and left foraminal disc protrusion with results in moderate left neural foraminal stenosis. This posteriorly displaces the transitioning left L5 nerve root. There is also moderate facet arthropathy at this level.

    L5/S1: There is prominent disc osteophyte ridging on the left as well as moderate to severe left facet arthropathy. Findings result in moderate to severe left neural foraminal stenosis. There is also mild to moderate right neural foraminal stenosis.

    No paraspinal masses are identified. There is edema within the subcutaneous soft tissues of the lower back.

    Note: I had the left side of L5 decompressed.

    The comparison of the two reports were interpreted by different radiologists. The first report was more in depth with respect to the findings.

    I had an x-ray of bilateral hip/pelvis 3/2013 that reflects the following impression:
    - Stable exam with chronic healed fracture deformities of the left superior and inferior pubic rami.
    -Mild to moderate asymmetric arthritic changes about the SI joints left greater than right also chronic.

    I had the understanding that SI problems are rarely seen on imaging? I'm curious as to what the pelvic CT I'm having on 5/28 will show? My "S" nerves are angry for some reason??? When the pain is dull, it feels like I'm sitting on large bubbly spasms.

    I just don't know where else to turn. Although my new surgeon assured that he could help me, I have a fear I'll be left in this disabling condition with no where to turn. My primary said he would refer me to the Mayo Clinic if he had to. I refuse to be left like this. Sometimes I wish someone would shoot me out of my misery. As a chronic pain patient, I cannot go to the ER for pain control. I'm stuck to suffer in this body. I don't think of doing anything rash, just desperate.

    Thank you so much for assisting me with this.
    Christie

    Last edited by lubear2003; 05-19-2014 at 08:50 AM.

     
    Old 05-20-2014, 06:41 PM   #6
    Rampage
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    Re: Decompression made my SI pain worse

    First off, I'm not sure what you mean by decompression...is that a laminectomy you're referring to? That's meant to alleviate some of the pain, but not in your SI. It's meant to help with pain associated with compressed nerves at the spine.

    Second, you can't expect all to be perfect so soon. I had a 3-level fusion 10 months ago, and have had all kinds of side issues post-surgery. The way it works, so don't be so hard on yourself.

    I've been dealing with chronic back pain for 14 years. At some point you have to adjust your expectations of yourself if you're going to find out how to live with what you got. You keep pushing for better, but you learn to temper your expectations to keep your sanity.

    Good luck and keep your chin up.
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    Rampage
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    Anterior Fusion (BMP) L3-S1 '13

     
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    Old 06-01-2014, 08:39 AM   #7
    lubear2003
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    Update: Decompression made my SI pain worse

    Well, I had my new MRI, pelvic CT & surgeon follow up last Wednesday ... As soon as the orthopedic surgeon met me in the exam room, he pointed out/correlated exactly what's causing all my pain & why it got considerably worse after the 10/2013 laminectomy. He said I have a Pars Interarticularis Fracture (from prior surgery) at the S1 level; the nerves are very inflamed & irritated. The before/after MRI films (pre-post surgery) were clear to show the difference. There's also unresolved issues at the L4 and L5 levels & moderate-severe facet degeneration. He rated my SI degenerative issues as mild, and not the main problem. I would have never imagined this would happen, and thought my SI joints were the culprit.

    I'm having corrective & revised surgeries; 2 surgeries in 2 days on 6/23 & 6/24. The first day will be the fracture repair w/internal fixation & 2nd will be a 2-level ALIF from L4-S1. The neurosurgeon that I saw previously had mentioned the crack at S1 (originally injured in auto accident 6/2005), and cautioned me that a laminectomy would make my pain worse. He subsequently referred me to an orthopedic spine surgeon at UCSF, who disagreed, thus I went ahead with the surgery. Being naive to all of this, I trusted his opinion and only thought of the potential for pain relief.

    It seems as though the UCSF surgeon didn't study my films thoroughly. Both my new surgeon & his administrator (independently) asked me if I had an attorney. I thought they meant either Worker's Comp or Social Security; at the time I wondered why they would ask me if I had. Having had the time to process their comments in my head, I know they acknowledge why this was a "failed surgery", and what went wrong.

    My current orthopedic surgeon specializes in failed & reconstructive spine surgeries with 35 years of experience. He is realistic, and said my condition will most likely improve by 50%, and get me functional again. He also stated it's impossible to fix everything, and I'll most likely always have pain. I'm okay with 50%, as it's better than ZERO & am confident that I'm finally in the right place, with the right surgeon.

    Anyhow, if anyone is still having problems, or increased pain after surgery, DON'T assume the problems were resolved the first time around & you have to live the rest of your life that way. It's not normal for pain levels to reach a 10+ on a daily basis. Pay attention to your body, and find a new surgeon if you have to. Gather as many opinions as possible, especially if the opinions differ from one to the other.

    Thank you for taking the time to read my story.

    Christie

    Last edited by Administrator; 06-01-2014 at 08:53 AM.

     
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