Any advice please...

[Chambo5169]

Hi
This is my first time posting anything so I write with hope...I have had back problems for the last 2 years which has resulted in me not being able to work and the resulting loss of my home I worked for the same firm on a self employed basis for 17 yrs and now am in the unfortuanate position of being on benefits ( I hate it )...as I cannot commit due to this condition..I have had 3 epidurals ,2 lumbar and I cordal. of which the lumbar one's giving me the most relief but only for approx 2 weeks each one,Ive also have physio,accupuncture and tens machine but alas Im still in the same boat ( sinking fast ) Here goes my last MRI scan in July 2010 reads..There is a left-sided disk osteophyte bar at C3-C4 level and a right sided  osteophyte bar at C4-C5 level, these are both causing neurological impingement...In the thoracic spine minor degenerative changes are noted and again in the mid and lower thoracic spine...There is moderate left lateral stenosis at C3-C4 and right lateral stenosis  at C4-C5 with nuerological impingement....L4-5 AND L5-S1 disks are degenerated..There is diffuse circumferential annular bulge of L4-S1 disk...at L5-S1 level there is posterior right paracentral protrusion of the disk with impingement of the right S1 nerve root and narrowing of the right foramen...That's about it I understand some of it but cannot get answers from various consultants/doctors..my main complaint is severe back pain I wake most nights in agony and struggle to walk most day's...my medication is oxycontin/gabapentin/baclofen/amitriptyline/diazipan and lansoprazole....of which I hate taking but have no choice...I have also lost 2 stone to try to help but although I feel better for the weight loss there is no change pain wise...Im at my wits end so hopefully someone out there can give me advice or shed some light on the above MRI diagnosis I just go round in circles .....please please can someone out there help.....all the best to everyone going through this sort of nightmare....Andy.

[JadedSweetheart]

I'm glad you're at least able to see the surgeon again.  Even though it's the same one.  Hopefully they will see that you are in need of some medical or surgical help and give you some good options for helping your condition.  
The biggest question I can think to ask about is for options.  Ask what options the surgeon can offer you to deal with this pain.  I'm sure you'll ask about how they said it would fuse on it's own and ask how/when/what that entails, etc.  Perhaps you may also want to ask him to explain your MRI to you.  
Thanks for keeping us updated about what's going on with you.  It's always good to hear "the rest of the story".  I hope you will be able to update us after meeting with the surgeon again as well.  
I hope you get the appt with the surgeon soon as well as some relief for your pain!

[Chambo5169]

Hi all,

I have seen my G.P. and he has recommended a second opinion as things are getting worse only problem being is the only Orthopeadic surgoen I can see is the one I saw previously ( not really a 2nd opinion from the same surgeon I know ) but this time I want to go prepared with questions for him so if any of you guy's wish to suggest any, after looking at my first post (MRI) I would be greatfull...........obviously I have my own and know my own pain but you guy's have been helpfull since I first posted and I have nothing to lose by being as prepared as possible, you never know !!!( even medication that may help you don't know if you dont ask )
No date for app yet hopefully it will be a.s.a.p...
Thanks guy's and all the best Andy...

[mkh9]

I am sorry you are in this condition. I would also suggest another opinion from an orthopedic surgeon. I think, spinal stenosis is narrowing of the spine at certain points. I am not knowledgable about the spine so I just wanted to say my sister in law had a morphine pump and it worked until she started leaking spinal fluid a couple of years later. She went to crisis and had to go off the morphine cold turkey and went into a rehab for getting off drugs. she is on a lot of non additive pain meds or a combo of anti-depressants that help with pain too and some other pain meds.and is doing very well. You have to find the right drug combo and someitimes switch a bit. I am on Neurontin and trying to get off (been on it for 4 years then a higher dose for a year) it didn't help me just made me have brain fog , memory problems and visual impairment. I hope you can get relief soon. I was on some pain meds too and they didn't help much and gave me insomnia (vicadin and tramadol). My two other friends also got insomnia from them and I got shortness of breath and anxiety. These drugs are tough. I hope you can find a good orthopedic surgeon. I think in this case they may be able to help with some of the problems.
mkh9

[Chambo5169]

Hi again,

Yes my wife does come with me to all of my doctors/pain meetings etc and she is more assertive than me and also being an ex manager of a care home for the handicapped she sorts out my medication for me and your right she does see what I go through and have to deal with my mood swings etc because of what's happening but ( there's always a but eh ! ) no matter what either of us say's it just seems to be a viscious circle....as I have said previously after having 3 epidurals and 2 Facet joint injections I have been written off by the hospital,basically if this hasn't worked then stick to the meds....My wife came with me when I went to see the orthopeadic surgeon with him saying if one disk had basically gone it was a 60% chance the surgery would work but being I had two disks (gone) it halved to a 30% chance and no-one would have/or do any surgery with just a 30% chance it would work........so let nature take it's course and the spine would fuse itself....we both walked away confused and upset because as far as we were concerned this was the top man in our county telling us this and you tend to see it as it is...........only when a few weeks pass you think to yourself fuse itself ( how/when/what if ...etc ) .....which is why I'm glad I have found this site cos it seems I'm not alone as you say it's not nice  for your husband/wife to see you in pain most of the time.....I am gonna book another appt with my G.P. and see if there is any other route too go down...it just all seems such a shame I have to start again 2 years after this all happened....but everybody has to stay positive however hard things get..

All the best to you Jaded.

[JadedSweetheart]

I have the same problem with the doctors in that I will be in agony at home but put on a brave face or usually I think the adrenaline of being in the doctor's office and thinking that if something happens the doctor will be there to see it makes it so that they don't see how much pain I'm really in.
I decided to start bringing my husband to appts for a number of reasons. One reason is that he can, and does tell the doctor how often I am in pain and how awful it is for him to watch.  Another reason is that they seem to take me more seriously when he is there.  Point being, it may help you to bring your wife to the office visits with you to tell the doctors what is really going on with you.  I'm sure she hates watching you suffer and will want to tell the doctor what she has to deal with.
Please keep us updated as to what happens with you and if you get a second opinon.  I think it's definetly something you need and deserve!

[Chambo5169]

Thanks for all your kind words,
I have read all the comment's and yes it does seem silly I'm too young for the surgery,I do excercise as often as I'm able too but find walking puts too much pressure on me, so I have got myself an excercise bike which has helped me lose nearly 2 stone ( of which I put on due to suddenly stopping activities ) I played football twice a week and was very sporty before this happened which makes it all the harder to take,I too do not understand the back fusing itself and it's frightening to think if it is the case because most of the time i'm bent over cos I cannot straighten up due to the impingement I suppose..

Last night I woke screaming in agony,my wife had to help me out of bed and I had to stay on all fours.....it felt like an explosion had gone off in my lower back,thats the first time it's ever happened, normally my legs raise ( as in previous post )..I was in so much pain for almost an hour and ended up taking a sleeping tablet with a diazipan...This morning I could walk very gingerly but I was expecting to be laid up due to what happened.

Trouble is no-one see any of this happening and whenever I have been to see doctors, pain teams etc they look at you and say oh youve improved,when you tell them no I haven't they just seem to take it at their face value...ie he looks better so I've done my job.....I understand they can't sit in my bedroom waiting for something to happen in my sleep.....I do need another opinion because although I look better due to weight loss I certaintly do not feel better...I'm not sure who to see as there isn't that many in my area that specialise so as in previous posts everything goes round in circles.

All I want is a slightly better quality of life but no-one can seem to help me as I say I'm too young or seem to have the wrong type of problem for surgery....I do really appreciate all your comments and will keep you updated..I feel as if I'm whingeing but as I say if you guy's are in similar circumstances you know what it's like and possibly what I'm up against....

Regards Andy..

[RunningMom]

I wish they didn't put a age limit on surgery or pain.  I'm 36 and I had cervical fusion last year.  I'm looking into possibly having another surgery soon.  I had a pain management doctor tell me that I'm too young for this pain.  Well, I can't help it that I have this severe pain.  

It's been my experience to get as many opinions as possible and study as much as possible on your condition.  You have every right for that second, third, fourth, ect opinion.  I've seen a total of 5 surgeons so far and I'm still looking.

Good luck and I hope you are able to find relief for your pain and a good surgeon to help you.

[Jaybay]

Wow.  I was in my early 30's when my neck was fused and plated since 4 nerve roots were impinged.  I guess I was really lucky!

With my limited knowledge and experience, the stenosis isn't that big of a deal and no surgeon would operate simply to attempt a correction.  Physio is the typical protocol for stenosis.  The S1 disc and associated nerve impingement is another story altogether, and probably the primary source of your pain.  Since the MRI notes degenerative disc changes in other areas, it's almost certain that you'll have even more trouble in a few more years.  As much as it hurts, you'll do yourself a favor to stay as active as possible and not allow your muscles to atrophy.  Even a daily walk will help postpone additional pain.

I so wish you didn't have to deal with the UK national health and could more easily seek a second opinion.  It's absolutely ridiculous in my opinion to make you suffer for decades while your spine fuses on its own - and possibly in an even worse position that will cause more pain.  Allowing the spine to naturally fuse due to associated arthritis won't even correct the problem!  If the disc is causing nerve root impingement, and that will still be present and likely worsen with time.  

I also don't understand the "30% chance of improvement" quoted by your doctor.  Most people come through discectomy just fine, so I don't understand the reason for the doctor's pessimism.  There is always a risk with any surgery, but in good hands discectomy and fusion is no more or less risky than any other surgery.  Poor surgical outcomes can often be attributed to the patients themselves in that they don't complete the necessary rehab.  The surgeons are also complicit in those poor outcomes because they don't educate their patients in how important rehab is, nor do they tell them how painful it is.  It flat out HURTS!

Are you stuck in no-man's land now with only the opinion of the one surgeon?  Is there any chance you can consult another one?  Stories like yours just break my heart.  There is no reason for you not to be a productive, pain-free, fully-functioning person save for a bureaucratic and seemingly arbitrary decision to the contrary.  I'm so sorry that all I have to offer is sympathy.  :-/

[namnam46]

Jaded, your ABSOLUTELY correct about the age problem ( as you know FIRST hand :(  )!! Andy, the Doctr's know that IF yo have the fusion surgery now the PROBLEMS that would result from it in the LONG run are NOT worth what you might get from the Surgery!!  They are afraid that you would have SO many resulting side - effects from it that you would be in SUCH severe pain for the rest of your life and they would have trouble being able to treat you for that many years effectively WITHOUT running out of pain meds.  You would become immune to them WAY too soon and there would be NOTHING left to treat you with later in your life.  THUS, they tend to NOT do surgery, as Jaded so correctly said, until you arein your 50's or 60's.  

IF it got SOOOO severe that they would have NO choice then of course they would, BUT they will do ANYTHING that they can to keep from doing it at this point in your life. Just think there's a 70% chance according toyour Doctors that you would get NO relief and  you would have MORE problems resulting from even doing the surgery in the future.

I'm so sorry that it works that way!!  As far as the elderly getting the surgery, there's not that SUPER long period of time to worry about and so FORTUNATELY they can get the surgery to help them live their lives out in less pain.  :)  

Tuck gave you some great suggestions on getting a second opinion if possible.  I hope that you can get the pain relief that you need.

PLEASE keep us updated on what you are able to do as we are VERY concerned about you........Sherry

[JadedSweetheart]

I think the issue with Andy's age is that they feel he's too young for a fusion.  Typically they don't want to operate until a patient is in their 50s or 60s.  At my age, 28, they look at me like I'm crazy when I talk about surgery.  They just pat me on the head and say something like "Some day" and change subjects.  
I also was taking a muscle relaxer and am not now because I am pregnant.  As soon as the baby is born I will be right back on it as I am realizing how much relief it gave me.  I have muscle spasms in my neck, partly because of herniated discs, partly because my neck lacks the proper curvature which causes the muscles to spasm because they are being stretched, which pulls on the vertebrae, causing pain, which causes more spasms.  It's my vicious spasm cycle.
Currently my doctor has me using ice and heat with magnesium and fish oil as natural supplements to help the joints and muscles.
I also wanted to mention that oxycontin is not morphine.  It's extended release oxycodone.  The extended release form of morphine is MScontin.
I hope you find a way to get your pain under control, Andy.  We're all here to talk to and for support.

[Haven62]

Andy, Hi again. I don't understand about your age being a problem with surgery. A lady at my dr's office had had rods put in at 82 yrs of age. I was astounded. She must have had no other health problems I'm sure. I don't think I would do that at that age. The surgery recovery pain was horrible. Anyway, Tuck sounds like he has the similar nighttime pain and taking pills that way might be quite beneficial to sleep. Isn't the doctor concerned about nerve dmg. That is usually what some of the pain is about anyway (numbness etc).People who don't have the problem and pain has no idea what that is like, so just ignore that stuff. You do know what its like. Visit a dr. who will listen to you and explain it or ask an expert on this website. I would also ask "can your back fuse itself?" That's a new one to me. Unless they mean the arthristis or bone spurs filling in, but thats a painful fusion. Maybe you can post several different questions & get the breakdown that way.
GB.

[Tuckamore]

Andy,

I had to try three different muscle relaxants before I found one that worked to ease my spasms. I find that if I take my narcotic pain med WITH the muscle relaxer before bed time that I have less spasms. So you may just not be on the right one. Please talk to your prescribing physican.

Best of Luck,
~Tuck

[Chambo5169]

Thanks for your insight and comments to my post...I was just 42 last week so really been told I'm too young for surgery as you pointed out..it's so frustrating having young kids and not able to pick them up or even have a kick a bout with them as they love football as do I, The hospital has all but let me go saying they've done what they can because my prodominent pain is the back.. I have a numb right leg but can deal with the sciatic pain...the only surgery that I have been offered they say would cure the numbness.(.of which I deal with)..I saw a specialist last year and he told me that over time my spine would fuse itself but it could be 5yrs/10yrs/20/yrs I was not offered a surgical fusion 1.because of my age and 2. they could only offer a 30% chance of succsess...I get terrible spasms and have practically begged them to watch me sleep because I wake most nights with my legs drawn up to my chest ( due to spasms ) it feels like I have woken up in a car crash and my hips have been dislocated I cannot move my legs at all,my poor wife gets woken by my screams and has to lower my legs ( sorry about the likeness to a car crash ) but thats the only way I can describe the feeling....Everyone I have spoke to just shrugs their shoulders as if I make it up....I take the medication of which some are muscle relaxations but my body just wont give in to them....I visit a pain team in the UK so I will mention the above medication but not sure if they are avaliable in the UK..I do think after all this time suffering I have become used to the meds Im on......Thanks again for your comments and Im sorry for what guy's are going through if it's anything like me.....Life goes on..

All The Best
Andy,,

[Tuckamore]

Hi Andy,

Welcome to the Pain Management Forum. Please forgive my tardy response. I am glad that you found us but so sorry to hear about your pain and the problems it has brought into you life. Many of us can relate.

Your MRI explains the many reasons you have for pain. The impingement (nerve) alone is more than enough to interfere with your sleep. I don't understand why they are not doing more treatments or surgical correction. Although I do know that the very last resort is surgery. Certainly your physicians should be able to explain your MRI better than I. Be assertive and insist that they respond to your questions. I wish I had better answers for you.


Are you able to get another opinion? If you are I encourage you to do so.

It's obvious by your reports of pain that you are not receiving adequate pain management. I respectfully suggest that you discuss more or different medications. None of us are happy with the fact that we require narcotics to function through our pain. When there is nothing else that is effective with have no choice but to take medications.


We can offer you support. We are her to listen and can understand your frustration with your pain and it's management. Please keep in touch and let us know how you are doing. I hope you'll find a solution.

Take Care,
~Tuck

[Haven62]

Hi. Some of your MRI sounds like mine. I had vertebrae replacements and fusions in my neck, fusion at lower spine and 3 rods and pins in mostly thoracic region. I also have degenerative disc disease but alot of people my age I know (62) have it as well. I have neck pain, some back but Darvocet and muscle relaxers (Skelaxin) helps quite a bit. But, so I could get around & do things, I found a couple of wheelchairs. One I usually take with me. Walking, like you, is a problem so I sit in a chair and scoot or wheel around so I get exercise and feel like a human being rather than having to lay flat for hrs on end. I used to take oxycodone but haven't for a while. That's morphine I'm sure you know and addictive but with pain, anything works!! What is your neurologist suggesting? I was rear ended last yr which aggravated neck again and neurologist suggested another rod; this one in neck. Back doctor said NO more surgery. Lungs can't take it (anesthesia). So, sounds funny but I had a moist heat pack in therapy once and it was wonderful so that's what I do when I'm in alot of pain I can't get away from. I take a thick towel, fold in square, soak in sick, then roll it in sick and press down so most of water comes out. I then put it in the microwave and cook it sev. minutes til its steamy and as hot as I can handle it. I put in in a plastic bag, cover with a thinner towel and lay it on the place that hurts (don't lay on the towel--burns). Sometimes, I have to do this a couple times or more if its really bad until it lets up, but it does work. Not a heating pad, a moist thick towel. The moist heat is the key. I don't know why. Alot of the other stuff on your MRI, I looked up one word at a time on webmd but I imagine this site can do the same thing. Type in a word like stenosis & now I can't remember what this is, but I can't do anything about it but try to relieve the pain and be happy. Yes, I'm federal disability in U.S. and I don't like it, would rather work but besides the pain, I have numbness, tremors in both hands and when I had the frontal neck surgery, they nicked my laryngeal nerve so one set of vocal chords is paralyzed so I can't talk loudly. (Its really just wind--like talking with laryngitis so it gets tiring). But I can whistle--go figure. I don't know the other meds you take and I never had those shots. My friend did. Didn't help long but now she has a machine at her back, I can't remember what she called it, it sends pulses to her back. It sounds more like getting zapped. I'll have to see what that is, but that machine has relieved her of all her meds and she was on oxycontin and everything else. Her morphine was in a pump inserted in her back. She says she has never felt so good. Sorry I went on about me. I just remembered her situation. I don't often see her anymore, she moved. Maybe you know what that is. If not, I will call her and find out about it. She got electrocuted by touching a lightswitch at work which threw her against a block wall. So it was a major thing. Its late now but I'll try to check tomorrow unless of course you already know about that device she was talking about. ?? Let me know. God bless.