View Full Version: Help needed, in a horrible state

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Title: Help needed, in a horrible state


Chris - June 4, 2011 02:37 PM (GMT)
Hi, having gone through double disc replacement on L5 and L4 about 20 months ago with Mr Shackleford I have not been doing well at all. And need some advice.

Since the operation I have not been able to sit down. I spent my time lying down instead of sitting while trying to remain fit with walking. 4 weeks after my back op my neck became really sore and 19 months on its awful, its posture though because I lying down instead of sitting.

All attempts at physio and back exercises have resulted in incredible pain meaning I gave up a year ago trying.

Mr Shackleford suggested a pain management program local, as I am based in Ireland, I did that, nothing gave me relief.

I went to see another surgeon in Ireland who suggested that I might have some compression of nerves as this is what he usually sees when patients have bother sitting.

Having had a few nerve blocks L5 right gave me relief for about 3 weeks, reduced my pain by about 50%. L5 left has now made it worse than ever.

I am going back to see him in a few weeks but I can already predict he is ready to drop me as a patient as decompression surgery he thought might help will probably not help.

To top it all I am now having some pain where my liver is and having been taking medicine for the good part of 15 years, high enzymes for 5, I am having to go medicine free which is increasing my pain up another few notches, Lyrica is the only thing that really helps but its certainly increasing the pain at my liver.

So at 36 with a one year old child I cannot sit, get very sore neck pain when I lay down and ahm in excruciating pain in the lower back from morning until night.

Have tried to send Mr Shackleford an email asking for some advice but I have no reply and having spent my life savings on trying to sort my back I cannot even afford the flights etc to and see him again. (Just about to lose my house as I obviously cannot work)

Need some advice and help please

Chris

naintaid - June 4, 2011 03:53 PM (GMT)
yours is a sad story, cant offer any advice to you but wanted to let you know someone has read your post.
best wishes to you from alison

Alastair - June 4, 2011 04:31 PM (GMT)
Hi Chris,
I'm very concerned at your story, I would think that as the nerve blocks worked, that maybe see a neurologist in Ireland might be the solution? :P

this is the problem that the surgery quite often flares up nerves and when the patient tries to continue a normal lifestyle they continue to get irritated.

I can't comment on the liver problem because I don't know that area of people's bodies.

I know Mr Shackelford has been on holiday, so maybe that's why you've not had a reply from him but he's an extremely busy surgeon.

It sounds to me that you've got a trapped nerve and an ablation might resolve your problem totally.
I hope things get easier for you it sounds awful I don't know if you're in Northern Ireland or Southern Ireland, and if you could get treatment under the health service for a neurologist?
very best wishes,
Alastair :D

ajj1001 - June 4, 2011 04:40 PM (GMT)
Sorry things are so bad, I'm stuck with bad adr's but at least they worked for a while. I haven't been successful yet trying to revise them and have permanent problems in both legs as a result. Sounds like you need to find someone close to home who will find out what is going on.

Chris - June 4, 2011 05:38 PM (GMT)
Thanks for the feedback, it certainly is a nerve problem, its whats causing the nerves to be so agitated that I need looked at. I never get muscle spasms really so deep heat etc gives no relief, my area of pain is right at L5 on the disc / vertabrae it does not radiate, it just stays there but the pain is so intense and gets worse very quickly when I sit down.

Will ask the consultant when I see him in 3 weeks. I am in the republic of ireland have health care, hence I went to see him rather than a trip funded by myself to see Mr Shackleford. Would just love a bit of feedback from him as I don't want to go dealing with surgeons / dr's who have very little experience of adr.


Chris - June 4, 2011 05:42 PM (GMT)
On the nerve ablation, I have already had a rysotemy and it did nothing. The facets are fine, the nerve blocks were the nerves that cannot be done according to my doc in ireland, he said the nerve that he blocked cannot be zapped as it would result in paralysis?

Alastair - June 4, 2011 05:52 PM (GMT)
Hi Chris,
The neurologist I am sure is the way ahead.

If Mr S has said try a pain clinic then I don`t know what he can sugges its getting out of his province. Everything you say that has been checked seems OK its a mystery

Does cold help your pain?

Have you tried a TENS machine?
Best wishes
Alastair :D

Chris - June 4, 2011 06:44 PM (GMT)
I have had both recent x-rays and mri's and the local surgeon has said that in theory everything looks ok.

I'll suggest a neurologist to him and see what he says.

ajj1001 - June 4, 2011 07:32 PM (GMT)
QUOTE (Chris @ Jun 4 2011, 06:44 PM)
I have had both recent x-rays and mri's and the local surgeon has said that in theory everything looks ok.

I'll suggest a neurologist to him and see what he says.

Imaging took a while to show any problems when I first started with symptoms after my adr. I knew something was wrong as my left wouldn't work. Be persistent and keep on trying to find an answer.

Alastair - June 5, 2011 01:22 PM (GMT)
The neurologist should be able to locate the precise nerve which is causing the problem, how it is treated to relieve the pain is another issue.
Good luck with this
Alastair :D

Chris - June 5, 2011 09:46 PM (GMT)
QUOTE (Alastair @ Jun 5 2011, 01:22 PM)
The neurologist should be able to locate the precise nerve which is causing the problem, how it is treated to relieve the pain is another issue.
Good luck with this
Alastair :D

My consultant in galway has found L5 right nerve is certainly some of the problem, but thats just the root, are they able to find the precise nerves? do they test via nerve blocks? If so I really cant have one at the moment as I need to give my liver a rest for a while.

ajj1001 - June 6, 2011 07:07 AM (GMT)
I would imagine the only thing that would definitely show this as the source if the pain is removing what is causing the irritation/pressure/compression and the pain improving. unfortunately resolving chronic pain is rarely that simple due to the chemical pathways to the brain being complex and transmission of negative signal can continue even when stimuli is decreased.

Alastair - June 6, 2011 07:47 AM (GMT)
Just an interim thing which I heard on the radio this morning, which is the fact that hypnotherapy can relieve pain. Might it be worth having a session with a qualified hypnotist, whilst you're waiting for the things to be done?

A neurologist should be able to not only locate the precise nerve but have a solution for relieving the pain. You don't expect this from orthopaedic people because they do bones not nerves
Best,
Alastair :D

Chris - June 6, 2011 11:28 AM (GMT)
Thanks for the replies again, I will raise the points with my orthopedic surgeon in 3 weeks, one question though, if it is a trapped / compressed nerve (which everything is pointing towards) is that not suggesting that decompression surgery would be the way forward?

Also, Alastair how does a neurologist go about identifying the precise nerve(s) that is causing the pain?

Alastair - June 6, 2011 12:36 PM (GMT)
Hi Chris,
Yes the neurologist will pinpoint the exact nerve, and should know how to treat it to get you out of pain. If that is impossible than they will tell you so or should do.

I hope you start to get some more positive replies from the professionals than you had in the past, but quite frankly I can't see Mr Shackleford embellishing on what he's already told you. Nerves are not his job, bones are :rolleyes:
Best,
Alastair :D

Chris - June 6, 2011 03:25 PM (GMT)
How do they pinpoint the nerve?

Alastair - June 7, 2011 01:40 PM (GMT)
Hi Chris,
I've known about this imaging equipment which can actually see the large nerves in the body for a long while, and some members here actually have had it done in the past, so it should be no problem at all providing they got the equipment. Get yourself into some postings and use the search facility :rolleyes:

The USA do this on a regular basis, but you need to be somewhere that they do have the equipment to see the major nerves in the body.

Obviously they can't see very very minor nerves which are thinner than a human hair I experienced this myself personally recently, and that is just impossible but imaging has now come to an extremely sophisticated level. How do you think they do injections using fluoroscopy and avoid or not the nerves they want to inject.?

You need to go talk to a neurologist and see that they've got the equipment and get the job done.
Best,
Alastair :D

Alastair - June 7, 2011 03:30 PM (GMT)

Chris - June 7, 2011 10:04 PM (GMT)
Thanks Alastair, you have been very helpful, will see if the orthopedic surgeon I am seeing can refer me.

Alastair - June 8, 2011 07:43 AM (GMT)
Hi Chris,
just make sure that they can do the procedure where you are going, there is the full information about it not only in the above link but elsewhere on the Internet
good luck,
Alastair :D

Chris - June 9, 2011 10:51 AM (GMT)
so just to confirm, its not the same as my ortho surgeon doing nerve blocks either side of L5?


ajj1001 - June 9, 2011 12:56 PM (GMT)
no, it's a specialised kind of MRI that shows far more detail and can see nerves. i have been unable to find out how your implants would affect it as I know with a standard MRI that the metal causes flaring and restricts the view. in my quest to find out what us wrong with me I have had many diagnostic tests but these on their own do not give a diagnosis just give information to inform one.

Alastair - June 9, 2011 01:58 PM (GMT)
Usually what I have found, is if they're doing an MRI, they put a lead belt over where your implant is. However having so said, I have never had one of these special MRI nerve scans but there's no doubt about it they would have got all bases covered and you will NOT be the first person to have this by a long chalk
good luck,
Alastair :D

ajj1001 - June 9, 2011 03:29 PM (GMT)
QUOTE (Alastair @ Jun 9 2011, 01:58 PM)
Usually what I have found, is if they're doing an MRI, they put a lead belt over where your implant is.

.... they do that if the scan is to look at another place apart from your lumbar spine but unfortunately they need to leave as much "visibility" as possible.

When i have had my MRI scans since my two level adr (quite a few unfortunately) it looks like a big reflection and obscures the view close up to the implants. It needs combination with CT & x-ray to form an accurate picture of what is going on.


Lynda - June 14, 2011 01:59 PM (GMT)
Chris

I am so sorry to read you are suffering as you are and hope that the surgeon you have locally can offer something to help. Finding the generator of spinal pain can be difficult and often a process of elimination....which you seem to have gone through with no avail.

It does sound like it could be a compressed nerve somewhere though so maybe a decompression surgery would help? When is it you see your local surgeon? I hope he can offer you some worthwhile options.

Best wishes for improvement soon

Lynda


Chris - July 19, 2011 12:53 PM (GMT)
Update,

Been to see my ortho-consultant, he is reluctant to go any further at present but has not ruled out decompression surgery.

Got to see a neurologist, he is starting off with an MRI on the pelvis and a nerve conduction test.


A couple of questions,

If it is trapped nerves, will the conduction test show anything?

I also have pain just above the ankle on the outside, its stopping me walking for exercise purposes, an mri has shown nothing, does anyone else have ankle or low leg issues after ADR?

Alastair - July 19, 2011 02:40 PM (GMT)
Hi Chris,
lower leg pains are quite usual following surgery.

There is no guarantee that the conduction tests will show a trapped nerve if there is one but they should do.

It sounds like a typical compressed nerve to me but wait and see what the scans say and what the experts say.

It would be ever so helpful if you could put your profile on just where you're located and from your surgeon was and the dates of your surgery so they appear at the bottom of each of your postings. It's awfully difficult to keep track of so many members now. If you open up your profile it says signature at the bottom right-hand side, just pop it in there and close your profile up again
Do let us know how you get on
Best wishes,
Alastair :D

ajj1001 - July 19, 2011 04:22 PM (GMT)
i've got problems in both ankles following problems walking in 2008 and falls due to leg weakness last summer. I have had orthotics, physical therapy, steroid injections. the orthotics have been the most successful but the right ankle still has a significant amount of fluid on it and both have thickened ligaments. I had a detailed (and very painful) ultrasound to find out exactly what was going on.

Chris - September 1, 2011 10:11 AM (GMT)
Hi, completed the conduction tests although I was pretty sure he didn't test my lower back, he stayed on my legs.

I asked him via email afterwards could he do further tests to check for a trapped nerve, which is what originally wanted.


This is his reply.



an EMG/NCS always follows the clinical indication from a neurological
examination, so my suggestion was that you might have a piriformis syndrome
or a painful neuropathy and not that you have any additional nerve root
damage. Your SLR's were normal, also your reflexes and there is no motor
nerve deficit, so no reason to go for further not indicated
EMG-examinations, whichhave their limitations anyway.
There is no evidence of any polyneuropathy, but a slight hint for a
piriformis syndrome R sided, which can cause sitting intolerance. The
further MRI should prove if there is more evidence about and MR Burke would
be the one to be asked about.
But first you should physio and wait for the results of the MRI.


I understand the potential piriformis syndrome but is he suggesting I dont have a trapped nerve?



Chris - September 2, 2011 11:03 AM (GMT)
Any thoughts on the above email?

naintaid - September 2, 2011 11:58 AM (GMT)
sounds like that to me ,no problems with reflex and nothing further needing doing.
good result for you id say.

Lynda - September 3, 2011 02:26 PM (GMT)
QUOTE (Chris @ Sep 1 2011, 10:11 AM)
you might have a piriformis syndrome
or a painful neuropathy and not that you have any additional nerve root
damage. Your SLR's were normal, also your reflexes and there is no motor
nerve deficit, so no reason to go for further not indicated
EMG-examinations, which have their limitations anyway.
There is no evidence of any polyneuropathy, but a slight hint for a
piriformis syndrome R sided, which can cause sitting intolerance.I understand the potential piriformis syndrome but is he suggesting I dont have a trapped nerve?

Hi Chris

As I read it he thinks you may have evidence of Piriformis Syndrome, (which can be difficult to diagnose). As you know its a disorder that occurs when the sciatic nerve is compressed or otherwise irritated by the piriformis muscle so he is not saying you don't have nerve compression as it could be your sciatic nerve being compressed by your piriformis muscle....causing pain, tingling and numbness in the buttocks and along the path of the sciatic nerve descending down the lower thigh and into the leg.

Your doctors examination findings were normal reflexes and SLR's so no indication of the need for further testing.

When do you get the MRI results? Hopefully they'll confirm a diagnosis for you...as you are discovering finding the generator of the pain can be difficult.

I take it you have been shown priformis stretches by the physio and hope the stretches help your situation and your pain is relieved.

Very best wishes

Lynda

Gilly - September 3, 2011 03:14 PM (GMT)
Hope you get some further answers from your MRI results Chris, which hopefully will clarify some of the issues mentioned.
Love Gilly xxxxxxxxxxxxx

Chris - September 4, 2011 06:09 PM (GMT)
Thanks folks for the feedback, especially Lynda, getting my first session of physio tomorrow and more mri's specifically for the piriformis on thursday. Will feedback how I get on.

It is indeed finding the source of the pain thats the problem although I really think most docs don't really have the motivation to find the problem, the generalise and then give up.....

The reason I don't think its piriformis is because I don't get pain the buttocks or the legs, just at L5, and pain increases linearly when I sit.

Could it still be piriformis syndrome?

Thanks again for the advice and will feedback when know more.




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