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Old 06-21-2008, 01:37 PM   #1
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RobG1975 HB User
Unhappy L5/S1 Decompression; pain; Facet Joints; more pain!

Hi to anybody who is out there!

I am 32 years old, with 3 young children... and my poor partner is starting to break under the pressure of all of this... and I thought finding other people experiencing the same (or similar issues) as myself may help me, on an emotional level.

In June 2007, I was in the shower. I lifted my left foot, and went to wash the bottom of my foot with my right hand... and I felt my back "go". I was getting constant shooting pains down both of my legs - but funnily enough, I had no back pain.

Within a few weeks, I had been diagnosed with a centrally prolapsed disc at L5/S1. The torsion slipped the disc, and was likened to golf swinging a club, and slipping a disc.

By September 2007, my cauda equina nerve bundle had started to get compromised - urinary incontinence. I had a discectomy performed at the end of September 2007, to decompress the nerves.

I had a rough time during the recovery period - I stumbled on the stairs twice (the second time, I fractured my big toe). On both occassions, I jarred my spine.

After the operation, my leg pain had disappeared... but in its place, I got excruciating back pain. I was on ridiculous levels of drugs, considering my operation was a "success".

Sixteen days ago, I had a caudal epidural and 4 facet joint injections (on 2 joints) performed. This was supposed to help me. At first, within the first few days, I felt the discomfort that I was warned about. Two days after that, I started to feel better... and then the well-being tailed off... and my back pain is now so intolerable, I cannot describe it.

The facet joint injections have made me worse - much worse! I have started with pain down both legs again... and the back pain is intolerable! Before, I used to walk with a limp... now, I can barely walk. I spend every moment, when I am not working, in bed - in an attempt to somehow magically cure the pain with rest.

To give an indication of the level of pain - here is a list of the medication I have been prescribed for this:
  • Paracetamol (4000mg per day)
  • Baclofen (5mg per day)
  • Diclofenac (150mg per day)
  • Gabapentin (1800mg per day)
  • Diazepam (5mg at night)
  • Nefopam (90mg per day)
  • Oxycodone Immediate Release (30mg during the day)
  • Oxycodone Slow Release (40mg at night)
  • Morphine (Oramorph) (when required)

Even with all of that - and dosing myself up on Oramorph, my pain will not go away!

The side effects from the drugs are making my life intolerable - hot flushes, falling asleep during conversations, sweating...

An orthopaedic surgeon removed my disc. A spinal surgeon performed the facet joint injections (under xray). The spinal surgeon has no idea what is wrong, and why the facet joint injections have made me worse. His best course of action now is Pain Management Clinic. I live in the UK, and I am covered under a private health scheme with my employer. However, I have been told that the Pain Management Clinic isn't going to be fully covered - and any prescriptions written will be at cost to myself.

It is a nightmare!

My GP is unhappy with the whole affair - and has compiled an extensive report for me, to take to a neurosurgeon for a second opinion. I am due to see a Mr Cowie on Tuesday. I am told he is very good in this field, and he should be able to find out what is going wrong - but I have concerns that if he doesn't find the cause, that no one will...

Any help or guidance would be very greatly appreciated.

Thank you.

Rob

 
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Old 06-22-2008, 03:17 AM   #2
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Marywoo HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Rob,wow thats some story,iam so sorry for your pain it sounds excruciating,iam surprised by all that medicine,dont get me wrong iam not a dr and i would be lost without my meds,but most people cant get meds and it seems like their over medicating you.i also had very bad reaction to those facet shots,i was in H--- for almost three weeks,so i understand that pain,i still have to go see that dr. this wed and iam scared of what he might have up his sleeve next,he said burning off of my nerves,but iam gonna try to stay away from him after this follow-up because anymore of his so called help will kill me.we are kinda at their mercy.with all that medication something has to be going on.will your inssurance allow for you to get 2nd opinon?something is not right and it sounds like your dr realizes hence the meds,iam sorry i cant be of more help but feel free to vent,that will help your partner also because that is alot for her as a caregiver also.i pray you get the help you need. marywoo

 
Old 06-22-2008, 03:55 PM   #3
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SpineGuy HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

It sounds as though you are experiencing "post-laminectomy syndrome." The purpose of your initial surgery was to relieve your leg symptoms and urinary incontinence which was successful. The back pain is likely due to a degenerative disc and instability following the laminectomy. You should consider an updated MRI to evaluate that disc as well as the others and rule out infection. Consider a fusion procedure should the MRI coincide. A fusion can be performed anteriorly or posteriorly.

 
Old 06-24-2008, 08:18 AM   #4
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RobG1975 HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Hi Marywoo and SpineGuy,

Thank you both for your time in posting replies. It is most appreciated!

Marywoo - it seems like you are in a similar predicament than I. From what I have been told today (my 2nd opinion), the facet joints performed by the other surgeon were exactly as he would have recommended... and from what I have seen on the internet, Mr Richard A Cowie is amongst the best in the neurosurgery field - so I trust his opinion highly. Not to mention the fact that he was such a nice man to deal with! It doesn't make us feel any better though - and I wish you all the best with a swift recovery! Regarding the medication, I appear to metabolise medication quickly; thus, not able to feel the effects of it. Last year, I was on 100mg morphine MST, with Oramorph top-up, with no drowsiness side effects... and when I had my original operation, they had to double the morphine dose in the drip, due to my tolerance of the drug. The doctor is only trying to help... and I sympathise for other people out there who have to fight with their doctors to get medication.

SpineGuy - You are almost spot on with what you are saying there... I will go into further detail below.

I have seen Mr Cowie today, for my 2nd opinion... and he didn't give me the news that I wanted to hear...

He said that based on the facet joint injections not working, and the level of pain and medication I am on, he is under the impression that my joints are rubbing together, thus causing inflammation, and pain.

He is referring me to yet another specialist... but his recommended course of action is a Lumbar Disc Replacement!!!

I have read some scary things about these procedures... and I have been told that I need to "research it like a medical student" and get all my facts together. I would be lying if I said that I wasn't scared about all this... but he said the only other option is Spinal Rehabilitation (sounds like a posh phrase for physio, but please correct me if I am wrong). Other than that, I have to live with this.

All in all - a living nightmare!

If anybody could provide links or information regarding Lumbar Disc Replacement or Spinal Rehabilitation, I would be most grateful.

Take care everyone.

Rob

 
Old 06-25-2008, 04:46 AM   #5
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lilydilly HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Hi, just want to reassure you re possible disc replacement surgery. I had one done here in Australia 7 years ago in my lumbar region and it's been wonderfully successful.
I don't know the situation where you live, but the ortho I had got the prosthetic from Germany and told me it was the best in the world at that time. I have had absolutely no problems with it. I did have another bulging disc below the one that was replaced, and they left it alone because it wasn't causing me any major problems. And only occasionally do I get a bit of a twinge from that one, so having the disc replaced above it, didn't make it worse or anything. I'm now in my 50's and had this done when I had 4 teengage kids at home and a husband working long shifts, and life was hectic and very busy. Yes, it was a fairly up and down road to full recovery, but I had such relief from the previous pain, and the surgery was such a success, that I have recommended it to anyone I meet with similar problems.
I see the same surgeon in 2 weeks to have tests done because I'm having problems in my neck area and I would have no hesitation in having the same surgery done there.
It probably took me a full year before I felt absolutely over it completely, but to be honest, I had a hysterectomy 2 months after the back surgery and it was worse than the back surgery itself. Having 2 major surgeries so close is probably what made my total recovery a bit slower than others.
I just want to reassure you that if you do need to have this done, I've never ever regretted it one bit.
CHeers from Lily

 
Old 06-25-2008, 05:59 AM   #6
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RobG1975 HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Hi Lily,

Thank you for your reply! I am sorry to hear about your neck problems.

In some aspects, your post is very reassuring - with regards to the success of the operation. However, I am going to run into difficulties with work if I have this operation, based on the one year recovery time you mentioned. If you don't mind me asking - how did your recovery progress? I am a computer programmer, and sit at my desk all day long... at what stage in your recovery would you say you were able to do that (sit up for long periods of time)?

Also, I have been investigating the different discs on the internet - and the Charite disc appears to be common. However, the surgeon I am due to see (Mr Raymond Ross) wrote a paper on it, stating its failure rates as 12 out of 127 between 1990 and 2000. This troubles me. Additionally, the procedure itself appears to be problematic - the Charite website states the surgeon goes through your belly, near the belly button! OUCH! Is this how they did yours? Were there any complications (I'm terrified of there being complications).

Thank you again!

Rob

 
Old 06-25-2008, 02:48 PM   #7
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lilydilly HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Absolutely no complications whatever...I walked out of the hospital with only panadol as pain killers, but then that was my choice, as i react to so many drugs. But I coped fine on Panadol within 5 days of the surgery.
I'm sorry I can't tell you details of which disc. Somewhere my papers got lost when we shifted. All I know is it's made of something they use on space shuttles LOL.
I was able to sit and do stuff within weeks, but probably not for long periods at a time. My husband and I went on a 3 hour car trip up a bush track at 5 months, and I got all my old symptoms back and fell apart. But that was only for a few days, and it all settled down again until at 12 months, we went boating, and I had another return of sciatica, but just a few days again, and I haven't had it since.
At my 6 week check up, I went into the surgeon's office, and accidentally dropped my bag on the floor. I bent over to pick it up, and said to him, "Hey I wasn't showing off, I didn't mean to drop my bag", I just bent over without having to think about it". Then I saw he was standing there watching me and he had teary eyes. (He IS the best doc in the world), and he said, "I know. That's why I do what I do, to see things like that. I don't have to see anything else, just seeing you can do that without a thought, shows me you are a success".
I was walking up the beach the week I came out of hospital. And I sat in the lounge chair doing our office work within 5 weeks of coming home.
The surgical incision was a shock to me, because mine is from my belly button right down to my never-mind. I wasn't expecting that, but I was a bit abnormal. The surgeon said what should have taken him 3 hours turned into a 5 hour nightmare, because I'm all back to front inside. I have arteries where they shouldn't be, and all in a tangle, and he had to sort through all these thumb sized arteries to even get to my spine. But that's just me... even parts of my bowels are the opposite way round to other peoples LOL. So my actualy surgery took a lot longer, and they needed to open me up more because of all that... but that's the first time the surgeon had to do that.. I was unique apparently!
So that would have slowed me down more than other people.
When I say it took 12 months to full recovery, I mean recovery to the point that I was no longer careful.. well, I'm still careful, but at 12 months I could forget I'd ever had surgery, except for the scar. And who cares that I can't wear a bikini when I can go surfing and boating and fishing and hiking again.
I just looked up my surgeon's name on Google, and there were people on a forum talking about him and what he does, and it seems he uses the Charite disc, so I assume that's the one I've got. After 7 years, it's still holding in there. My husband had surgery (laminectomy) 26 years ago, where they just took his disc out without fusion or replacement, and he was months just getting to walk straight again. He thought I was so lucky in comparison to what he went through.
Sorry I'm not much at explanations, and it was a while ago now, but I think having confidence in your surgeon is vital. This man I see has done the most number of these surgeries of anyone in this country, and that's why I've bee waiting months to get in to see him... because I trust him fully to do the best possible job he can.

 
Old 06-25-2008, 03:51 PM   #8
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Smile Re: L5/S1 Decompression; pain; Facet Joints; more pain!

WOW! That is one heck of a story... and I thank you ever so much for sharing that information. I cannot express how much it means to me that you shared that information.

The lack of complications, even though you had your insides back-to-front, was amazing; and I take my hat off to your surgeon. He is truly a genius... and if I lived in Australia, I would be asking you for his name!

If you don't mind, I would like to share your story with my manager, in an attempt to explain the procedure, how it works and the potential outcomes. Its all well and good telling her information from a surgeon, but a real-life case may allow her to make informed decisions, based on best-case and worst-case scenarios.

As long as the operation is a success, I am hoping to try and work from home at my earliest opportunity. Firstly, be available on the telephone... then try working half-days (2 hours in morning, 2 hours in afternoon)... then build up to working all day from home... and eventually, try working in the office.

I have been told on several occasions by the surgeons that I am lucky because my job isn't an active job - otherwise, I would not have been able to return to work. However, issues are still present, and I would like to be able to get them sorted before making a decision.

I know my health should come first... but if I can struggle on, and ensure I keep my job, and feed my family, then that is more important to me than the risk of losing my pay while I am off (I have been told my job will remain open for as long as needed - its the money that is the issue).

Just as a footnote, I have been through what your husband has been through, and it was horrible for me also. I am glad your husband appears to have recovered from it all though.

My best regards to you and your family,

Rob

 
Old 06-25-2008, 10:25 PM   #9
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lilydilly HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

I just found a post here on another forum in Australia sent by a man who has also had a disc replaced in his lumbar spinal region by my surgeon. This man was back at work in 18 days, back at the gym in a month, and 12 months to the day of his surgery, he went on a 4 day hike on something he called the "inka trail". There is a photo on the surgeon's wall of him and his wife hiking. I wish I could send you his post, but it would probably not be correct to do that. Wow, I wasn't quite that good, but then I'd had back problems for years off and on, so probably had a lot more nerve damage to heal, and muscles to adapt. Also having a hysterectomy 2 months later would have set me back too, I imagine. And I'm not the fittest person at the best of times.
And remember my surgery was 7 years ago, and I think there has been a lot of advancement since then. A lot of the surgeons, doctors and nurses at the hospital where I had the hysterectomy were fascinated by my back operation and most hadn't even heard of replacing the disc. It was fairly new here back then, so I 'd have even more confidence in it now 7 years later.
All the best
Lily

Last edited by lilydilly; 06-25-2008 at 10:26 PM. Reason: spelling

 
Old 07-03-2008, 09:25 AM   #10
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SpineGuy HB User
Re: L5/S1 Decompression; pain; Facet Joints; more pain!

Although, I have seen some wonderful results with Lumbar Disc replacement. I would be more apprehensive to do so in your case and heres why. Certainly the majority of your pain is arising from an underlying degenerative disc and abnormal biomechanics from the post laminectomy status. In this regard, replacing the disc makes sense. However, dont forget with a lumbar disc replacement the facet joints continue to move and may be a source of continued pain. In your case, a more predictable outcome would likely come from a lumbar fusion. To educate yourself further, the majority of disc replacements are performed using either the Charite Lumbar Disc replacement manufactured by Depuy Spine or the Pro-Disc manufactured by Synthes Spine. Whatever you chose be sure you have selected a surgeon who performs these procedures on a regular basis. Also. see if you can speak with some of the surgeons patients (as long as they are ok with it) to discuss their experieince. The best thing you can do going into this decision is being well-informed. Let me know if you have further questions.

 
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