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Spine Problems; Pain 4 years after L5/S1 Lumbar ADR
Topic Started: 3 Jan 2017, 10:32 PM (326 Views)
Joannelloyd19
Jo19
[ *  *  * ]
Hi Everyone,
I had a L5/S1 ADR in Dec 2012, which seemed to be a success, although I still had facet joint pain, had spinal injections and finally facet joint ablations.
I had a fall in June 2014 which led to a C5/6 ACDF, (should have had a disc replacement, but NHS England stopped the funding in my area at that time, and due to pressure to get back to work from my NHS bosses, I had no choice but to have the fusion.)
I have now been discharged from the spinal service and sent to pain management, although I asked for a 6 month follow up appt, as I was worried about any other spinal problems occurring.
My problem is that I now have double incontinence, constant burning pain in my back, hip pain, sciatica and leg pain (again!) neck pain, throat and swallowing problems , and now a numb foot and foot pain.
I am now under 3 different Hospitals (one for my bowel problems, one for pain management, and one for my spine, bladder and throat) I am still working but am in constant pain. Have any of you experienced any of this following your disc replacements or fusions? I am at my wits end with the constant pain and deterioration in my health following my operations? I used to be a keen hiker in the Mountains with my Husband and now I can't even walk without limping and pain. My foot is numb but has the most awful pains shooting through it.
2009 Foraminal Epidural Steroid Injections commenced
2010-present Caudal Epidural and Facet Block Injections (several)
06/12/12 Activ Lumbar Disc Replacement L5/S1 by Mr Shackleford At Warrington Hospital.
31/3/15 - C5/6 ACDF operation - not fused
L1/2 disc herniation and C5/6 fusion caused by a fall in June 2014
Bowel and bladder incontinence (waiting to hear if it is nerve damage) and long term depression due to constant pain and disc trouble at the top, middle and bottom of spine.
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Alastair
Member Avatar
Alastair
[ *  *  *  *  * ]
It sounds like you have
http://columbiaspine.org/condition/cauda-equina-syndrome/

you describe a perfect patint for this and much is not known in this country.

What does Mr S say as he has done the surgery?

What does an MRI scan say?

I am amazed that you are still at work and some patients get a similar type of symptoms with damage to their Pudendal nerve

I`m so sorry to hear your dituation Joanne

Please keep us updated with your progress and case
Best
Alastair :mellow:
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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Joannelloyd19
Jo19
[ *  *  * ]
Hi Alastair,
Mr S says that my MRI is showing no nerve compression but L5/S1 and C5/6 are showing focal distortion due to the artefacts on the MRI's, so it is hard to see whats going on. Mr S said that he thought that I had Complex Regional Pain Syndrome in his referral letter to the Pain Management Doctor, but she said that I haven't. He then wrote to my GP saying that in his opinion it sounds like Fibromyalgia. My GP says that this is a catchall phrase given when they don't know whats wrong or are unwilling to say. Mr S discharged me to Pain Management. I was very upset as I am in constant pain and having multiple problems - worse since my operations. I know how hard it is to get back into the system once you are discharged (I work for the NHS) and asked to stay on his patient list. He agreed that I could have a 6 month follow up appt. I asked if it could be arachnoiditis as one of the surgeons told me that I had a tethered cord (in fact, they showed it to me and my Mum on my MRI scan) and said that it was tethered with cholesterol and that I also looked like I have some kind of connective tissue disorder
and that I needed a rheumatoid arthritis blood test and a cholesterol test, which I went for. I have asked the Consultant to write to my GP about this but tbey are now denying telling me this. I had never heard of this before and I wouldn't have gone for the blood tests unless I had been asked
to go. I am very upset about this as I am struggling to work and my life is severely compromised and feel that I would have been discharged only for asking to stay on the spinal books. I don't know where to turn hence me asking this forum for advice. I also think it sounds like cauda equina.
Hope someone can help,
Joanne



2009 Foraminal Epidural Steroid Injections commenced
2010-present Caudal Epidural and Facet Block Injections (several)
06/12/12 Activ Lumbar Disc Replacement L5/S1 by Mr Shackleford At Warrington Hospital.
31/3/15 - C5/6 ACDF operation - not fused
L1/2 disc herniation and C5/6 fusion caused by a fall in June 2014
Bowel and bladder incontinence (waiting to hear if it is nerve damage) and long term depression due to constant pain and disc trouble at the top, middle and bottom of spine.
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Alastair
Member Avatar
Alastair
[ *  *  *  *  * ]
It sounds like a classic case to me



Symptoms of cauda equina syndrome

It may be hard to diagnose cauda equina syndrome. Symptoms vary and may come on slowly. They also mimic other conditions. If you have any of these symptoms, seek medical advice right away:
Severe lower back pain.
Pain, numbness or weakness in one or both legs that causes you to stumble or have trouble getting up from a chair.
Loss of or altered sensations in your legs, buttocks, inner thighs, backs of your leg, or feet that is severe or gets worse and worse. You may experience this as trouble feeling anything in the areas of your body that would sit in a saddle (called saddle anaesthesia).
Recent problems with bladder or bowel function, such as trouble eliminating urine or waste (retention) or trouble holding it ( incontinence).
Sexual dysfunction that has come on suddenly.

Diagnosing cauda equina syndrome

If you develop any of the above symptoms, seek medical advice immediately or visit the accident and emergency department of your nearest hospital. Here's what you may need to confirm a diagnosis:
A medical history, in which you answer questions about your health, symptoms and activity.
A physical examination to assess your strength, reflexes, sensation, stability, alignment, and movements. You may also need blood tests.
Magnetic resonance imaging (MRI) scan, which uses magnetic fields and computers to produce three-dimensional images of your spine.
A myelogram - an X-ray of the spinal canal after injection of contrast material - which can pinpoint pressure on the spinal cord or nerves.
A computed tomography (CT) scan.

Treating cauda equina syndrome

You'll need prompt treatment to relieve pressure on nerves. Surgery must be done quickly to prevent permanent damage, such as paralysis of the legs, loss of bladder and bowel control, sexual function or other problems. It is best if this occurs within 48 hours of the onset of symptoms. Depending on the cause of your cauda equina syndrome, you may also need high doses of corticosteroids. These can reduce swelling. If you are diagnosed with an infection you may need antibiotics.

Even with treatment, you may not retrieve full function. It depends on how much damage has occurred. If surgery is successful, you may continue to recover bladder and bowel function over a period of years.
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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Joannelloyd19
Jo19
[ *  *  * ]
Hi Alastair,
I have just wrote a long message and lost it. Basically, I am very down due to not knowing what will
happen and where to turn to next. I had my first operation as I had a 2 year old Grandson that I was in too much pain to play with, I can't even play football with him still. It's upsetting as my 69 year old Mum is fitter than I am. I have lost my hobbies (Mountain walking) and my social life as I am too sore to go out. My Husband has been wonderfully understanding when
It has massively impacted on his life too - from having a depressed wife that can no longer walk with him and who is miserable, to having no social life and weekends away with friends, let alone the personal problems that this problem has caused. I know that I have many symptoms if not nearly all of cauda equina, but if the Consultant hasn't suggested it then I wouldn't know how to go about getting a definitive diagnosis. I wonder if anyone elae has been left with any similar symptoms on this forum?
Thanks for all of your help,
Joanne
2009 Foraminal Epidural Steroid Injections commenced
2010-present Caudal Epidural and Facet Block Injections (several)
06/12/12 Activ Lumbar Disc Replacement L5/S1 by Mr Shackleford At Warrington Hospital.
31/3/15 - C5/6 ACDF operation - not fused
L1/2 disc herniation and C5/6 fusion caused by a fall in June 2014
Bowel and bladder incontinence (waiting to hear if it is nerve damage) and long term depression due to constant pain and disc trouble at the top, middle and bottom of spine.
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ajj1001
Advanced Member
[ *  *  *  *  * ]
I'm very surprised that Mr S has discharged you, sounds like you need rereferal to an ortho or neuro to have a look. I had cauda equina prior to my ADR. This left me with some saddle numbness. I have permanent foot drop on one side. Keeping complaining and hassling, i had to do this when my ADR failed and it was really difficult but I'm 5 1/2 years post surgery to sort this now (second attempt to sort) and it really was the best thing I did as I am stable. Keep a daily log of symptoms and pain levels, keep going back to your GP or getting them out to see you if you are unable to get there, they need to see how ill you are. I went to A & E a couple of times too. Hassle, hassle, hassle (or get someone to do on your behalf if you are too ill on the occasion).
Std Meds Gabapentin, MR Tramadol, Paracetemol, Laxatives
2011 Sept PLIF L4 - S1
2010 May Discogram L2/L3 & L3/L4 both looking ok.
2009 May PLG Fusion L5/S1 Charite in situ
April Dismissed
2008 Caudal Epidural failed to work
2007 Deterioration L5/S1 Facet arthritis, Loss of disc height.
2004 Returned to Work
2002 Aug - physio
March 2 level ADR Charite L4/5, L5/S1
2000 Broadbased disc prolapses L4/5, L5/S1
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Joannelloyd19
Jo19
[ *  *  * ]
Hi,
Thanks for getting back to me. Mr S referred me to the Pain clinic but I have the same symptoms that I had prior to my L5/S1 ADR 4years ago. I now have sciatic pain and foot numbness and pain on the other side. I have bowel and saddle issues too. I also had a C5/6 ACDF fusion 22 months ago which is still causing throat and neck pain and restrictions in movement. It didn't fuse. I am still working 2 days a week but am really struggling. Mr S told the Pain Dr that I had complex regional pain syndrome but she said I haven't. He then wrote to my GP and said that it is fibromyalgia. I am
being sent to the Walton Pain Management Centre, not sure it will help but willing to give it a go. I had to plead with him to give me another appt, they discharged me but I wasn't happy. I know my own body, and I know that there is something wrong in my lower spine. I keep working and don't give up but I have no quality of life. It takes all of my energy to do 2 days and then I pay for it for days on end until I go in again. I need a proper diagnosis so I can make the decision whether I can stay in work or not. I spend my days off attending appts - in fact I am under 3 separate Hospitals to do with this - pain clinic, bowel, ENT, spinal, etc etc. Has anybody gone through the same and have they any advice?
Thank you,
Joanne
2009 Foraminal Epidural Steroid Injections commenced
2010-present Caudal Epidural and Facet Block Injections (several)
06/12/12 Activ Lumbar Disc Replacement L5/S1 by Mr Shackleford At Warrington Hospital.
31/3/15 - C5/6 ACDF operation - not fused
L1/2 disc herniation and C5/6 fusion caused by a fall in June 2014
Bowel and bladder incontinence (waiting to hear if it is nerve damage) and long term depression due to constant pain and disc trouble at the top, middle and bottom of spine.
Offline Profile Quote Post Goto Top
 
mhorton
Newbie
[ * ]
Joanne

I have been under a pain management consultant before I had any surgery and they did help. After I had my two discs replaced my pain was dramatically reduced but I was warned after that these discs were allowing me to have too much movement and would require stabilisation. At the time I couldn't get the stabilisation operation and whilst I wasn't in so much pain I continued on with life. I was due to have a follow up with my spinal surgeon consultant but he had a fatal road accident and so my hunt for a new consultant began. I eventually found one and with his help managed to get a stabilisation device suitable for my deteriorated spine. His comment was that it should have been done years ago but could see the amount of trouble that my previous consultant had been through to try and get my surgery agreed to. The stabilisation has helped a little but I am still in pain which seems to be more from the damaged nerves (neuropathic pain) than from the actual spine itself. My only option for surgery now is possibly flexible rods and pedicle screws or fusion but this wouldn't help with the nerve damage and could lead to other discs deteriorating quicker.

So I am back to my pain management consultant who has put me on a trial of Gabapentin. If that doesn't work then a trial of Pregabalin. She has also suggested that she swaps out my Tramadol to Tapentadol in a 12 hour release form. I have tried slow release Tramadol but I don't get enough relief from it. I also use a TENS machine which I find helps with the nerve pain but it can be quite distracting at times and I eat batteries with it. My pain management consultant has suggested that she could try a spinal cord stimulator (SCS) but wants to try the medication route first.

So Joanne, I would say to you to persevere with the pain management people, they have been a great help to me in the past and again now.

Mark
Surgery:
2001 L4/5 L5/S1 ADR (ProDisc-L) by Mr N Boeree at Nuffield Hospital, Chandlers Ford
2016 L4/5 L5/S1 Facet Joint Stabilisation (IntraSPINE) by Mr C Dare at Nuffield Hospital, Chandlers Ford

Treatments:
Facet Joint Injections
IDET
Facet rhizolysis

Medications:
Tapentadol, Paracetamol, Oramorph & Gabapentin for pain.
Clonazepam for tension.
Omeprazole for IBS.

Issues:
Lower back pain
Nerve damage and associated problems.
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ymyplace2
Member Avatar
Newbie
[ * ]
Joannelloyd19,Jan 3 2017
10:32 PM
Hi Everyone,
I had a L5/S1 ADR in Dec 2012, which seemed to be a success, although I still had facet joint pain, had spinal injections and finally facet joint ablations.
I had a fall in June 2014 which led to a C5/6 ACDF, (should have had a disc replacement, but NHS England stopped the funding in my area at that time, and due to pressure to get back to work from my NHS bosses, I had no choice but to have the fusion.)
I have now been discharged from the spinal service and sent to pain management, although I asked for a 6 month follow up appt, as I was worried about any other spinal problems occurring.
My problem is that I now have double incontinence, constant burning pain in my back, hip pain, sciatica and leg pain (again!) neck pain, throat and swallowing problems , and now a numb foot and foot pain.
I am now under 3 different Hospitals (one for my bowel problems, one for pain management, and one for my spine, bladder and throat) I am still working but am in constant pain. Have any of you experienced any of this following your disc replacements or fusions? I am at my wits end with the constant pain and deterioration in my health following my operations? I used to be a keen hiker in the Mountains with my Husband and now I can't even walk without limping and pain. My foot is numb but has the most awful pains shooting through it.

Same here
L4-5 L5-S1 ADRs

Back Leg pain burning with numbness stabbing pain.

I have slowed the problem with a reinforced back brace.

Aspen Medical 637 LSO
Aspen Evergreen Adjustable Back Brace w Extension Panel

The trick is how to wear it

Stand up
Suck in your gut and hold
Strap on the brace
Pull both straps and place on brace.

This will reduce the pain

Wear it 24/7

Doctors will not like this and PT will hate this but it works.

Dr and PT have told me it weakens your spine and you should exercse to strenghen you back to hold your damged parts.

That is the key I have damged parts not repairable so I do what helps me.

Try it it will help you
L4/5 blowout and like everyone DDD
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ymyplace2
Member Avatar
Newbie
[ * ]
I also find predisone 5mg daily helps as much as 5mg oxy also sream room or super hot bath will help in the really bad days.

Baths 3 4 or 5 times a day will give some pain relifie

Dr do not like the 5mg predisone and prefer to give 5mg oxy just due to steroid fear zone.
L4/5 blowout and like everyone DDD
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Joannelloyd19
Jo19
[ *  *  * ]
Thank you for all of your advice, I am still in pain and am half way through my pain management course. It is helping me psychologically but the physical pain is awful. I want to reduce my medication if possible as I felt really bad on Gabapentin but not managing to do it yet,
Thank you
Joanne
2009 Foraminal Epidural Steroid Injections commenced
2010-present Caudal Epidural and Facet Block Injections (several)
06/12/12 Activ Lumbar Disc Replacement L5/S1 by Mr Shackleford At Warrington Hospital.
31/3/15 - C5/6 ACDF operation - not fused
L1/2 disc herniation and C5/6 fusion caused by a fall in June 2014
Bowel and bladder incontinence (waiting to hear if it is nerve damage) and long term depression due to constant pain and disc trouble at the top, middle and bottom of spine.
Offline Profile Quote Post Goto Top
 
mhorton
Newbie
[ * ]
Joannelloyd19,Jul 31 2017
06:44 PM
Thank you for all of your advice, I am still in pain and am half way through my pain management course. It is helping me psychologically but the physical pain is awful. I want to reduce my medication if possible as I felt really bad on Gabapentin but not managing to do it yet,
Thank you
Joanne

Joanne

My pain consultant wants to stop me using Oramorph and reduce my Gabapentin, I'm on 2 x 300mg four times a day of Gabapentin and I tried just taking one 300mg capsule out in a day and left it like that, by the third/fourth day I had to put that capsule back into my tablet regime. Her hope is that my Tapentadol taken twice a day should be able to manage all my pain but so far I keep getting breakthrough pains. She is worried that the Gabapentin may be causing water retention so not helping with weight loss. Perhaps there is an alternative medication to Gabapentin, Pregabalin was mentioned about a year ago but has since dropped from conversation.

My best wishes goes out to you.

Mark
Surgery:
2001 L4/5 L5/S1 ADR (ProDisc-L) by Mr N Boeree at Nuffield Hospital, Chandlers Ford
2016 L4/5 L5/S1 Facet Joint Stabilisation (IntraSPINE) by Mr C Dare at Nuffield Hospital, Chandlers Ford

Treatments:
Facet Joint Injections
IDET
Facet rhizolysis

Medications:
Tapentadol, Paracetamol, Oramorph & Gabapentin for pain.
Clonazepam for tension.
Omeprazole for IBS.

Issues:
Lower back pain
Nerve damage and associated problems.
Offline Profile Quote Post Goto Top
 
Alastair
Member Avatar
Alastair
[ *  *  *  *  * ]
There is duloxetine which is a very good painkiller
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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