A Year After Discectomy

[jaywalker]

Hi Guys,

I am hoping that some of you may be able to give me some perspective on my current situation with my back, as now I feel, I have come to a point where I dont know what is normal anymore.

Its now a year after my initial surgery, a discectomy and decompression. From what my consultant said, I had popped a disk and that was pressing on nerves, but I also had a narrowing of the spinal cavity (Spinal Stenosis). So after the surgery, I had some hope of the pain in my back and legs to be at least better than it was before the surgery.

The first 6 months after surgery was an uphill struggle, but after this it did get better. After this period I returned to my original role of gardener and since then my back seems to have got worse and worse.

Ok, so in my particular case, what has happened over the past 5 years is I belive my disk slipps on a regular basis. What happens is I will be doing something usually bending over and I will feel a bad pain in my back and I find that I am in bad pain for the next couple of months. This happens very regularly about 5 times in a year for the last 5 years. Do I just have bad luck?

Anyway, where I am now is I have a very painfull back, pain down my right leg, pain in the abdomen ( to the left of my bladder, but no bladder or bowl problems), and probably the worst thing is after about 4 hours in bed it feels like my whole spine hurts causing me to toss and turn all night and then when I get up, it hurts to get around the house. This goes away after about an hour of moving about, but then comes back when I come home and rest.

I see my consultant on the 21st of October and I have been seeing him on adverage every 3 months since the surgery. Last time a saw him he looked at my most recent scan (august) and said there wasn't much there, this is quite dissapointing when he tells me that there isnt much going on on the scan. However, after my sugery he said that there was spinal stenosis in the level above (the one above L4 S1) but not enough to operate on. Could this be causing the pain I am experiencing now?

The pain moves around so much, so its difficult to always give my consultant an exact idea of whats going on. What also makes things worse is I have just started my own gardening business and I cant really take any time off, so it seems that my back isnt healing because I cant take it easy for a few months.

I dont know what to do now after a year...

Please help, or at least give your experiences if you can relate to my situation.

Thanks guys.

 

[marriedmomof2]

Hiya!

A couple of questions please?

1)
Did you mean (above L5/S1) making it L 4/5
OR
Did you mean (above L4/L5) making it L 3/4.

2)
DO you feel you are expeiencing exactly the same pains in the same areas as before the surgery?
OR
Are you now simply feeling similar levels of pain, possibly in different areas?

3)
Are you lying in a straight or feotal postion when the pain is at its worse?

My thoughts go out to you in your suffering, don't despare help and support is out there!

Best wishes


SPINELF

 

[bethwood082]

Hi Spinelf,

Q 1) The operation I had last year was at L5 S1 (sorry for typo), so the answer to your first question is L 4/5. Sugeon said there was stenosis at the level above L5 S1.

Q 2) I feel pains in exactly the same place, but slightly worse, pins and needles are now worse in right leg, it also hurts when I tilt my hips inwards (all the time even when I dont feel in any other pain at all) like the physio tells you to. The pain in the abdomen is simular to before the surgery, however I did have alot of pain in the groin before the surgery. I dont think its moved that much is the short answer. Having said that, if I bend backwards and to the right I can bring on an immediate pain down the right leg and almost cut of sensation, this was not present before the surgery. Sorry, just trying to be as descriptive as possible.

Q 3) I fall asleep in a position simular to the recovery position. However, I wake up mostly on my back or lying on my left side with my right knee bent. But I dont feel that a position particularly affects the pain because at the weekends when I try my hardest to have a lyein, I try to find a comefortable position, so I move around allot, but dont find much benefit.

Thanks for your response.

 

[Pompal 09.]

You will need to get additional 'independent confirmation' of my beleifs, but based on my experiences, this is what I think!

The right side L 4/5 AREA is where the sciatic nerve exits the spinal column and then travels down your right leg, your symptoms match a right sided L4 OR L5 vertibrae osteoarthritic condition (osteophytes) inside the posterior of the spinal column itself causing the spinal stenosis.
OR IT COULD BE, the same condition, but in your right sided 'foraminal opening' impinging the sciatic nerve root as it leaves the spinal column causing foraminal stenosis. This would account for most of your symptoms.

The fact that your pain is in exactly the same place, post-op, leads me to think that the root cause of your main back and leg pains were missed!

The pains when you tilt your hips would suggest the impingement is in the back of the column or posterior as they say, this matches a sciatic nerve root inpingement at L 4/5 LEVEL exactly like mine! the same goes for lying on your back, this would confirm posterior impingemnt to me.

I would suggest to you that you find and book a different private MRI clinic and take another independant MRI scan and report, this should confirm most of what I said and give you an unbiased opinion of what is left post-op.

Best wishes

SPINELF

 

[solstice_baby]

Hi Spinelf,

After reading your latest post, and then re reading very slowly lol, I think I understand what might be going on.

One question though, in your opinion, do you think that these 'episodes', where I think my disc slipps on a regualr basis have any significance at all? I'd really like to get to the bottom of this as I dont know if this is common for somebody with a simular condition than mine, or if this is a direct result of the discs giving under pressure from trying to deal with those possible underlying issues you mention in your post? I guess it could just be muscle spasms right? Hmmmm, I just dont know.

If your suspissions are correct then I need to push my consultant at our next meeting. He has hinted that there is stenosis above in L4, but he has maintained its not enough to operate on. Maybe he has been stalling for healing time after the last operation (Oct 9th '08)?

What I may do is wait it out untill the 21st October when I get to see him again, only then might I get a clear idea of what path he wants to lead me down.

In the mean time, has anyone got any suggestions, links or ideas of costs accociated with private MRI scans/reports.

Spinelf, I have been reading through the posts in this forum, and I'd like to say that you are an inspiration to many in this forum, with a waelth of knowledge too. Thank you for your help. I hope it goes well with your MP!

Thanks again

 

[harvard521]

These two paragraphs are important IMO. I'm assuming from this that your back problems probably stem from your role as a gardener because you say things were improving until you returned to that role. Heavy gardening work, poor posture and poor lifting, will often push some core muscles beyond their ability to protect your spine, while others end up becoming weaker. This is often when damage occurs which can then result in compensatory behaviour/posture which can actually cause more damage elsewhere or muscles spasms etc.

When you are physically able and it is medically acceptable, I would encourage you to improve the functional fitness of your core muscles and look at other preventative measures you could take to reduce the risk of further injury.

Hopefully you will find relief soon
Pete

 

[Jerome-092]

I agree with you there! WTG Spinelf xxx

 

[Larry W]

Thank you both very much! You are too kind Guys! , I just hate the idea of others suffering needlesly as I did, especially when sometimes its just becuase of poor diagnostics, lack of comminication and the effects of vested interests that prevent better outcomes for us 'guinuine' back sufferers.

Re: MRI Scans, 'Google' MRI scans for your area, try Lodestone
MRI, BMI MRI, SHIRES MRI, BUPA MRI. and I think MDL?
If you are clostraphobic in the the tunnel, there are 'doughnut types' out there and they are getting cheaper all the time, the one I saw recently was £285 in Cardiff for a lumber spine scan taking 20 mins with a high resalution image. Do your research people!

With regards to the disc issues, they can bulge out under preasure and compress your nerves when you work hard which could cause the problems you state and then move back again giving the periodic epesodes. It could also be 'inflamation' around the point of contact, or possibly 'reacive or protective spasms' in response to the nuronogical signals produced by the contact. The 'independant MRI' should clarify and illiminate some of the possibilities.
If it hurts, then it is significant and don't let anybody tell you any different!!

Definately ask your Consultant 'all & any' questions you feel might be important no matter what. If you don't like 'or' don't understand his/her answers, push, push and push again.
Its your body, its your pain, its your life!

I'll shut up now and give someone else a chance!


SPINELF

 

[Morghanna]

I had to reply, For some reason I think that many of us suffer from 'patient syndrome'. We go into a hospital or doctors surgery (ugh why call it a surgery???) and we turn into numbers, patients, perhaps even victims. I have never met so many rude obnoxious and intimidating people as I have in the nhs! I still run my own company and am not a wall flower but the minute I walk through those doors..... I change to a mass of jelly! I write lists but start to go through them and get dismissed. I end up a mess in tears, I hate it! For my kids I would tear the walls down, shout at the top of my voice to get them the right treatment or support, but for me, I just cry, I well up and cannot demand anything, question anything. On the phone I do ok and can hold my own but even some receptionists get the better of me. Anyone would think they were the boss lol.
How can one get a second opinion in the nhs? Is it possible without alienating everyone and getting struck off the gp's list?
Is the only option really to go private now?

Sorry for the outburst

 

[JT skier girl]

Spot on Cassie!!
The answer to your question, at least for independant x-rays & scans and associated reports, is go private and as far away from you trust area as possible to avoid that type of bias and colussion (is that how you spell it?).

All the best


SPINELF

 

[vxqpogoq]

Yes Cascara, I agree with you on that one about going to mush. At first I had a preconception that all docs where arogant, so in the beggining I was very accertive, however now I have started to trust my consultant. I think thats where I am now going wrong. After our last meeting about 4 months ago, he said we should wait it out a bit (like 4 months ) even though I was telling him I was still in alot of pain, and here we are 4 months later and still in the same situation if not worse! I need to kick him up the arse again! I see him tomorrow PM.

Anyway, something happened on sunday just gone wich I am still perplexed about... After going to the toilet on sunday, I found that I could not feel my bum. A little embarrasing I know, but I have heard about quada equina syndrome or whater it is... So I phoned NHS Direct, hoping for someone to give advice... 5 mins later an ambulance was at the door and I was whisked off to hospital... To cut a long storey short I was in there for 8 hours before I was finally told that the registrar didnt think it was quada equina syndrome because I was able to pass water. Nightmare!

This week has been pretty bad with my back. I am trying not to work too much, but I also dont want to loose my regular customers. Sitting hurts, standing hurts, bending hurts, even lying down hurts and I dont want my consultant to say " I'll see you in 3 months ". I must admit it is tough getting out of bed every morning knowing that I face a day of pain and my sympathies are with anyone going through the same thing, as many of you are.

I am half expecting my consultant to say "nothing is jumping out at me", so if nothing is showing up on MRI scans, then whats my next move?

I have decided to put any private MRI on hold as my next meeting with the consultant is so near, but thanks for your advice Spinelf, I'll certainly bear this in mind for the future.

Thanks for all your comments guys!

Oh, one more thing... Just to throw annother discussion in the mix, whats your thoughts on how cold weather affects a bad back. Somebody said last winter "your back is bad because of the cold weather", and I didnt think much of it untill someone said the same this year. Whats your thoughts....

 

[Astens]

Oh, one more thing... Just to throw annother discussion in the mix, whats your thoughts on how cold weather affects a bad back. Somebody said last winter "your back is bad because of the cold weather", and I didnt think much of it untill someone said the same this year. Whats your thoughts....[/quote]




With regards to the warm weather question Awk, you only have to go on holiday to somewhere 'very warm' to suddenly find that you are able to move more freely, with less pain and increased energy levels. whilst I
accept that a psycological element comes in to play, it does'nt account for the extra physical range and gate that we gain. The link between heat and increased good muscle tone is accepted as a given, thats why it forms part of all massage based treatments, cold muscles will spasms as a defence mechanism when cold making them difficult to manipulate and stretch. Trying going to Florida or Dubai for a week and see the huge difference it makes.

I am so sorry to hear about your troubles and tribulations, it must have been gastly, you would think that having something scary like that would make a person unable to stop going to the toilet would'nt you! (if you get my drift!)

I rather like the concept of kicking Consultants up the arse Awk, the thought of making them share my pain appeals to my sence of justice and fair play!

I have found, that time means nothing to GP's & Consultants, I cant even count the number of times I have told medics of the suffering I feel when I am rolling around my living room floor at 3 am wishing someone would 'put me down' to 'out of my misery', only to get a balnk stare or a platatude or two.

I have learn't over the last 5 years, that the only people who understand my pain and suffering and its causes, are Me, my Osteopath and my MISS Spinal Consultant Mr. Knight. The rest spend most of their time trying not to get involved, protecting themselves from being sued and trying not to lose control of these very lucrative NHS surgical monopolies.

I am having a bad day today and ranting too much, I'll shut up now!

All the best every one, take care.

SPINELF

 

[vgednujaijmixfeba]

Yes Spinelf, I understand what you mean about time meaning nothing to GP's and consultants, as I will explain.

As you know I went to see my consultant on 21/10 (ended up seeing a registrar though). I went with the mindset of not letting the slippery doc evade all of my questions, but while I was waiting for half an hour I noticed my confidence draining away. I was adament that I was going to to be accertive so I managed to pull this back, but I was still very nervous. I managed to ask all the questions that I wanted and wouldn't let him evade, and he answered every last one. To be honest he has been the most helpfull registrar I have seen, however after telling him about the the extent of my pain and suffering all he could suggest is painkillers in the form of gabapentin and to go away and come back to see them in 6 (SIX!) months.

After reading alot of post in here, I felt I knew what I was talking about, so I questioned the reg and asked him how taking pain killers is going to deal with the physical side of the problem. i.e at best it might dull the pain, but the source of the problem will remain, and if the pain is dulled am I going to make things worse by pretending I can still use my back like a "normal" person, thus damaging my back further. This was his reply....

"Your back will never get better, it will always be bad. You will always have a disk bulge, and your "episodes" of pain is when the disk moves a tiny fraction and presses on more nerves. This is putting pressure on your facet joints. Also there is a bit of scarring in there wich is adding to the pain. You are too young for us to operate further on that level as it would stir things up even more. it will never get better and we have to get the most out of your back and the painkillers will help to prolong that".

I am not sure if this is a complete cop out, I sort of understand about the scar tissue, and I sort of understand that any further op might include a fusion (this has not been mentioned though). But am I too young to do nothing? I am 30 years old.

Oh, and he also suggested pilates.

Am I expecting too much for the NHS to fix my back? Is it fixable? Am I too young for it to be fixed? I just dont know.

Maybe some of you could put your points forward.

Thanks Guys!

 

[Rey]

Yes! Awk, your back can be improved, but not with standard NHS surgical procedures, thats what your 'kind Registrar' was trying to tell you!
Look up these links:
www.bonati.com
www.microspine.com
www.laserspineinstitue.com
www.spinal-foundation.org
to see the whats available elsewhere!

I think we all expect 'too much' of the spinal services in the NHS.

Not because of our 'unreasonable need' to suffer less pain, or because of our 'ridiculas desire' to be more mobile, or even because of our 'outrages expectation' to live 'something like' a normal life, let alone to try and challenge them with medical facts. No! we expect too much because we still expect the NHS to put the patients first!
NHS spine surgery is 'big business', a business that is 'greatly influenced' by and who's decisions are 'guided' by the drug companies, tool & fittings manufacturers, and by the senior council members at thier surgical council organisations.
They don't want to rock the boat!! Thier priorities are elsewhere!

The National Instituteof Clinical Excellence (NICE) the body that is charged with making sure that the tax payer recieves treatment that is the safest, most effective, least invasive, least expesive, less destructive and offers the very best possible clinical outcomes for us, the patients! Has been 'hijacked' by the very surgeons this body was meant to moniter and control. Their 'so called' expert specialists, control and hold back the introduction of cutting edge treatments and whilst making sure that old, familier, established and favoured procedures are the 'norm', even though they have no more clinical evidence to support thier use than the newer cutting edge procedures like minimally invasive, endoscopic laser spinal decompression. Try finding Laminectomy on this site! good luck!

If readers think that I am exagerating, try this simple test.
E-mail your local NHS trusts Corporate Management Department' and invoking the 'Freedom of Information Act' (FOI) demand the following information from thier Spinal Units:

PLEASE SUPPLY ME WITH INFORMATION REGARDING THE SAFETY AND EFFECIVENESS OF LUMBER SPINE DECOMPRESSION SURGICAL SPINAL
PROCEDURES.

MY REQUEST INCLUDES, BUT IS NOT LIMITED TO, LAMINECTOMIES, FUSIONS, DISCECTOMIES AND ALL DISC AND BONE BASED IMPINGEMENTS OF SPINAL CANAL, NERVE ROOT, FACET JONTS AND FORAMINAL OPENINGS.

I WOULD ALSO REQUEST THE RESULTS OF ANY AND ALL 'RANDOMISED CONTROL TRIALS' (RCT'S) REGARDING THE SAME.


You will find, as I did, that they simply do not have this information as they do not keep records of these vital pieces of patient information.
Why! BECAUSE THE OUTCOMES WOULD SHOCK THE COUNTRY TO THE CORE!!

Try it!!

SPINELF