More Surgery

[brian mccarthy]

I had a hybrid Charite L3/L4, L4/L5 and ALIF L5/S1 fusion April 22nd last year and have had pain ever since. I've had more denervation, FJ injections, pain management and finally another discogram last week. Went for the follow up today and I now need more surgery.

This time its L5/S1 Pedicle Scew Fusion, Sacroiliac Fusion and possibly partial removal of a sacrolised transverse process. At least this time it will be through the back and not my abdomen. But I'm still pretty scared. The last surgery took a long while to get over and as I still had pain all the while, it feels like I have never got over it. Has anyone had this type of operation and can tell me what the recovery was like and if it was successful please?

Mine is probably going to be wc 6th April.

Thanks
Regards
Brian

[Harrison]

Brian, welcome back to the community. I am sorry you are here under these circumstances. You’ve really endured a great deal of suffering, so I hope we can provide some support for you as you think through your next steps. Though we may be strangers, we are familiar with some of the complicated challenges you face, so I hope we can help.

There are many people that have passed through this community that have had hybrid surgeries. I can’t generalize about how they all are doing now, as their results appear to be varied. Most find some kind of pain relief in the first year, but it’s hard to say after that. We have some studies on this in the Article Library, but I don’t think any would correlate to your exact surgery.

Thanks for providing a detailed signature line. I noticed that you’ve had every lumbar segment affected in some way with problems. Can you tell us a bit more about the diagnostic parts of your journey? I ask because this “troubleshooting” aspect is often the trickiest aspect of treating spine patients and I’ve complained about this many times from the pathology perspective. I believe this process is much more critical for multilevel DDD patients, as it may be more indicative of disease (excluding trauma and other obvious factors). This is only my opinion, but it is based on my observations and follow-up with patients since 2004.

Have you seen other types of docs that have given you a thorough workup? E.g., rheumatologists, hematologists? Were you diagnosed with any particular kinds of arthritis before surgeries? I hope these observations and questions help rather than add to the stresses you now must be facing. But we are here for you!

[Liz]

hi brian,

i'm so sorry you are still suffering. i remember your story from last year and recall your desire to return to marathon running post-op b/c i'm a former runner. i, too, assumed i'd be back to sports (and have less pain) post-op and when you don't and you're still going through painful diagnostics, taking medications and enduring relentless pain it really wears you down. i'm heading toward a revision too.

I also recall your posts on remembered pain and neuropathic pain which i found interesting. Does your surgeon no longer believe your pain is remembered? I think our central nervous systems get so screwed up from years of chronic pain.

Cindylou on this forum recently had her SI joints fused, see http://adrsupport.org/forums/showthr...ed=1#post82049

Is that what you are having done? Does your surgeon think you'll be able to be active after fusing your SI joints?

Are you having the posterior L5-S1 fusion b/c of instability that could be causing pain? Do you have typical facet pain?

Hang in there and i truly hope this surgery gives you some quality of life back.

best,
Liz

[brian mccarthy]

Thanks to you both for your comments - really much appreciated.No the pain is not "remembered" pain now - it is very real. While last year's 3 level hybrid repaired the damaged disks, it apparently did not properly address the cause. I seem to have two congenital anomolies that are the root of my problems. The first is Spina Bifida Occult which is not too serious but just makes you more likely to get back ache. The second is more serious and that is Bi-lateral Sacrilized Transverse Process at L5/S1 (AKA Bertolotti Syndrome) This condition acted to protect L5/S1 but in doind so put much greater pressure/load/torque on L4/L5.

As a result I ended up with having a microdiscectomy about 10 years ago. That in turn put added pressure on L5/S1 and L3/L4 ending up damaging them both - hence the Hybrid last year. The sacrilisation is still there and is causing imbalance and a tilted pelvis putting pressure onto the L5/S1 facet joints. That, coulped with the slight movement at the fused level is causing problems along with severe inflamation around the SI joint, which is also moving more than it should. I have never been disgnosed with any kind of arthritis. So, the solution to all of this is the surgery I now have to have.

Although the thought of more surgery fills me with dread, I can't carry on as I am. I'm on constant medication which is only taking the edge off and it affects the whole of my life both work, social and sport. I am managing to ride my bike occasionally but it does hurt a lot especially afterwards. Our socail life is such that because I have to go to lie on the bed after trying to do a day's work, we never go out without it impacting on my pain levels. My work has suffered a great deal. I need to lie down for an hour around midday, work until about 4.00 pm and then go home to my bed again. Not much of a life.

Thank you both again for your comments and interest. I'll keep you posted as things develop - at the moment it is scheduled for the week before Easter, wc 6th April.

Kind regards
Brian

[hezeronek]

Brian,

Wow, it sounds like you've been through a lot! I'm sorry you have to go through another surgery, but I sure hope it will bring you the long term relief you so deserve! I will keep you and yours in my prayers as the weeks press on. Best of luck with everything! Keep us posted through your recovery. Hopefully by Easter you will be well on your way to pain free days!

[CindyLou]

Brian, sorry for all the obvious reasons why you are here posting again. Most unfortunate. I have had experience with what you are facing. I will be 2 weeks post op tomorrow from SI Joint Fusion. But, slight correction from what Liz posted. I only had my right SI joint fused. My surgeon stated that most times if you surgically fuse only the most painful side, the other side tends to, in most cases, correct itself. I am hoping this to be the case for me. In short, I am doing fantastic. Still on crutches. 4 more weeks of that, to limit weight bearing on that right side while it heals. I am taking it slow, but tip-toeing into the light, if you will. I have great hope for the first time in 8 years, since my bicycle accident. Don't want to get my hopes up too high, but hard not to. I also had ALIF Fusion last July, which took about 6 months to completely fuse. That was a much longer recovery than this is expected to be. I am not experiencing any noticeable range of motion limitations.

My surgeon suspects part of my complaints have stemmed from having a congenital, additional 6th lumbar vertebra pars defect, hormonal changes to my SI joints from multiple pregnancies, age factors, and certainly being a young gymnast who was constantly doing back bends and walking my hands and feet together as close as I could, did not help. Add to that my bicycle accident w/ 2 compression lumbar fractures, too many snow skiing crashes to count, and 1 major MVA......is it any wonder? I see my doc tomorrow and have more questions for him, but mostly all good news to report thus far.

Can you explain why your ALIF of L5-S1 now needs a pedicle screw? Or am I misunderstanding something? I had a pedicle screw installed during my ALIF, and 1 additional screw put in for this latest procedure. Please feel free to PM me with any additional questions. I will keep you in my thoughts and prayers with your upcoming surgery.

Take care,

Cindy

[Liz]

hi brian,

thanks for the detailed explanation... you have a complex case, but it sounds like your surgeon and diagnostic team have put you through a thorough diagnostic work-up and you have your head around what has occurred. Hopefully once your surgeon stabilizes the heck out of your L5-S1 fusion/sacrilization and SI joints and re-aligns your pelvis you'll no longer have pain with movement and you'll regain some of your life.

i have similar thinking re: more surgery, but a life controlled by relentless pain becomes a very small life so the risk and pain of surgery becomes worth it if your medical team thinks you have a chance of improvement and you've undergone thorough diagnostics.

keep us posted and i hope this surgery is successful.

all the best,
liz

[cathydownunder]

Hey Brian, sorry to see you back under these circumstances.
Can you answer a few questions for me please?
What is your pain pattern and how did you arrive at your diagnosis and treatment plan? Have you had SIJ injections and were they helpful?

Im having ongoing pain since my 2 surgeries and although not confined to my SIJ's, they certainly seem to be pain generators. Recent SIJ injections only gave immediate relief till the local anaesthetic wore off then nothing from the steroid component unfortunately.
My pain is deep in the butt midway between middle and side and also encompassing my whole right hip. (I think that's to do with my lumbar scoliosis) and I have a "catching" quick stabbing pain when I straighten after bending.
Is this anything like your pain??
Cindylou, maybe you can answer too please?
Cathy

[berry]

Hi Cathy

Sorry you have ongoing pain, the pain pattern you describe sounds similar to mine although I have it on both sides of my sacrum and right groin pain plus pain down my right leg if pressure is put on the skin, even light pressure feels like needles. My SI joints are "normal" on x-ray but I'm told I have trochanteric bursitis and am having an arthrogram and mri of my right hip next week to see if I have a labral tear or any impingement. It is thought the bursitis is putting pressure on the nerves and causing referred pain. I too get catching and stabbing in my hip but more when I make a left turn. Is your catching in your hip or back?

I'm not sure if my pain isn't coming from my facets as I have arthrosis at the index levels and also futher disc degeneration at three levels above my lumbar ProDiscs. I did get relief following facet injectons which makes me think its them and the groin pain could easily be a separate issue thrown in to confuse the picture.

Sorry Brian for hijacking your thread a little, I hope you don't mind. Cindylou's wonderful progress must be reassuring to you as you face this revision.

Very best wishes

Lynda

[brian mccarthy]

Hello all, no problem Lynda it's good to hear from you. My pain is constant. It's a nagging dull pain that becomes worse as the day goes on. Too much sitting, too much standing, walking all agrevate it. Mine is predominantly on my right side but not exclusively so. It's all below L5.
Prior to the discogram, I had several FJ injections with very limited and short relief. When I had the discogram, all levels were tested. I was very concerned that L1/L2 had worsened sine the last surgery as it was torn/leaking last time. The good news, if there is any, was that this level was not a pain generator. Apparently, I made a lot of noise at L5/S1 FJ which was also given another FJ injection. Both sides of SIJ were also tested and again generated a lot of noise - although thankfully I remember nothing at all this time. I had SIJ injected as well. I was also manipulated under flouroscopy to see the mechanics moving to confirm the problem areas. Interestingly, both ADR levels were also tested as a pain generator as apparently some ligament does form around the end plates and sometimes can be a source of pain. Some abnormal movement was seen with L5/S1 facet joint (this was the level I had fused last time) along with inflammation and movement at the SIJs.
After the soreness from the injections for the first two days, I did get some relief the next morning. But then it gradually resumed and bt the next day it was back full on.
I'm taking Tramodol among other meds which do take the edge off a little, but not much. The best relief I get is from regular massage therapy, but again it only lasts a short while.
My surgery is now confirmed for Tuesday 7th April - almost a year after the last surgery.
I'm dreading it, but it has to be done.
Thanks again for your support and interest.
Regards
Brian