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Spinal problems, update & help & advice

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Diamond14
Diamond14

Hi looking for some help plz. 

Basically im in my early 30s, I was injured & resulted in 2 slipped/bulging discs l3/4 or 4/5, right at bottom with them compressing bilaterally on the nerves. I have had many numerous facet joint blocks, sleeve root nerve blocks, epidurals, steroids, I have also had a nucleoplasty all to of which have not had any major success, I have regular root blocks every 5/6months which help give me abit more movement & a little help with pain but I still have to take a mix of meds- currently ranging from minimum 400mg -500/600mg morphine daily (mix of slow release & fast) alongside I take amytriptaline 75mg, & various others for depression/anxiety, I have built up a very high tolerance & even at these doses they only help me to function minimally, I can't bend, I can't walk distances, I struggle with everything. I have issues with severe leg pains, pins & needles resulting in numbness & no feeling for periods of time, burning sensations in the soles of my feet & bottom like I'm been prodded with a poker, also get really bad cramps & hands/feet seize up & unable to release them. Since the injury I have incontinence problems, frequent retention, both urine & faeces.

so after many years of having blocks etc, my consultant as now said he's concerned due to the fact of having issues with bladder & level of pain & non successful treatments for long periods as informed me many times I will always have long term problems & this will never go but will not continue to give blocks & says no further options available, when I've asked about surgery he says they don't like to do this as not guaranteed to work & he cannot do the surgery, I would under no terms be able to cope without regular blocks & just mess, do I push to be ref to a neuro/back consultant? Would surgery help? I'm so young & my quality of life is rubbish. 

I've since had ops since this last post & Cather myself, I'm now been ref to the back specialist neuro team & also looking at having the nerve stimulator implant as nothing works for the pain, as anybody had these & what relief did you get, have anybody had similar issue? I also feel like my age is getting by & partner keeps asking for a child of our own to complete our family, I however don't think this is possible as I could not come off my medications (listed above) & would struggle to carry, any help/advice would be great. Thanks 

 

0 likes, 9 replies

9 Replies

  • jon28989
    jon28989 Diamond14

    Posted

    Hi, I'm replying to you from a hospital bed after tearing my fusion site... I can relate to so many of your issues it's unreal! I can add that I've been through the same and I was referred to st Thomas london for stimulators.

    Since I had them fitted in may this year (2017) I've had a very different few months with very little pain. This has how ever had numerous different issues (side effects) non how ever as bad as any of the pain medications I was on. Please feel free to contact me I'll help in anyway I can. 

    Until last Tuesday I've been clean of pain killers.

    • Diamond14
      Diamond14 jon28989

      Posted

      That's great to hear that it as worked for you, I just want some relief so I can do things without the constant pain & restrictions. It's just a long waiting game now. The Drs make you feel it's all in your head as disc is in place apparently. But that doesn't explain my level of pain other than it's damage to all the nerves etc. 

      Hope you have speedy recovery. Thanks 

  • CHICO_MARX
    CHICO_MARX Diamond14

    Posted

    You need an LLIF...Lateral Lumbar Interbody Fusion.  Not the old TLIF with the rails and screws from the back (I have one of them from L3 through S1).  For this, they go in from the side...

    https://patient.info/forums/discuss/the-expandable-spacer-570509

    Severe foraminal stenosis at L2/L3; this worked GREAT for me!!!  All the pain gone instantly...just had to deal with the residual nerve pain for a few weeks since they retract the nerve roots to insert the device.  Search YouTube for "globus lateral" to see the latest animation.  Posterior and lateral post-op views attached.  Now six-months post-op; like it never happened...

  • mike92384
    mike92384 Diamond14

    Posted

    Diamond14...here in Canada usually when someone starts having problems with bladder, bowels etc, they are referred to a Neurosurgeon. In fact this is considered to be serious. 

    Your Consultant or GP is not a specialist. Frankly, I wouldn't put up with any more injections. They obviously are not helping anymore. Of course, surgeons don't like to do surgery unless it's necessary. When it becomes necessary...they do it. 

    Yes...push to be referred to a Neurologist who will give you a very good neurological examination, probably order an MRI & go from there. You can bet if he/she sees serious problems  on the MRI you likely would be referred to a Neurosurgeon.

    Let us know how you get on with this.

    • CHICO_MARX
      CHICO_MARX mike92384

      Posted

      Totally agree.  Sounds like there is severe nerve impingement going on here that needs to be addressed immediately.  Neurosurgeon plus a CT/Myelogram with contrast.  Only way to go.
    • Diamond14
      Diamond14 mike92384

      Posted

      Thanks, my consultant wouldnt believe me for months when I told him about bladder/bowel issues & took a while to be ref to gynae (then it was confirmed all related due the damage to the discs around that region innmy back) also now refuses to do more blocks & as a last resorts says may do a spinal nerve stimulation implant. He says the disc is not bulging anymore but there's a reason for the damage & said it will be nerve related - asked to kill nerves but said can't as will leave wheelchair bound then that's when he said il ref me to a back specialist & see if they can offer anything & if not then the implant will be last option. I've no quality of life & would like to extend family but can't due to my back. I think when they loook at scans & they say discs look in place then try blaming the pain for been in your head etc. Thanks 

    • mike92384
      mike92384 Diamond14

      Posted

      Diamond14...First of all, I'd be really p*ssed if my GP said such things to me (inferring it's all in your head). Also, he/she is not a specialist. I'm surprised you went as far as  you did with those 'nerve treatments'. Once damage to the discs has occurred, they don't get better on their own. Deteriorating bone is deteriorating, end of story. If it were possible to reverse the deterioration do you not think everyone else with the problem would turn to the solution??? Also, if the discs aren't bulging anymore, I'd be very interested in knowing "how come". The reason most times for disc damage, deterioration, etc.etc. is the natural aging process or as the result of trauma. 

      Quite frankly, what I think you need done is to see a Neurologist, & have that person order an MRI of the lumbar & cervical (neck) spines. That's the only way to get a true picture as to what's going on in your spine. As you know, a Neurologist is a Dr. specializing in nerves. If you do manage an appointment with a Neurologist, be sure to tell him/her about the bowel/bladder issues. In all liklihood you will be asked about this.

  • Yukonjak
    Yukonjak Diamond14

    Posted

    My problems are nowhere as severe as what you've endured for so many years, but maybe some of my experience here in the US will help you.  I was referred to a neurosurgeon by my family Doc about 3 years ago because of concurrent numbness and tingling pains down my calves and feet.  X-rays and an MRI confirmed extensive arthritis spurs all along my spine.  Prior to proposing a laminectomy in the L4-L5-S1 region, he sent me to a pain specialist (Neurologist) for epidural steroid injections.  There was some relief for abut 2-3 weeks from those injections, but after the third treatment, the Neurologist discharged me saying that the laminectomy surgery was necessary because he didn't think giving me injections at more frequent intervals was a good idea.  The numbness disappeared on the operating table, and the pains were somewhat diminished initially after the surgery.  However, after 4-6 weeks, the pains in my feet returned with greater intensity and continue today.  The pain isn't constant; it occurs at random frequencies every 2-5 minutes apart, which make falling asleep difficult.

    ?Two years ago, the same neurosurgeon installed a Medtronic spinal cord stimulator trial, intended to be tried for 3 days.  The pains from the SCS were worse than those coming from my feet, so I discontinued the trial after 2 sleepless nights.  They removed the temporary device they had inserted in my spine (done by his nurse in his office, so it was an easy procedure with no discomfort), and prescribed Gabapentin and Amitriptyline.  A few months ago, the same neurosurgeon said additional surgery was not advised ("your spine could become unstable"wink and suggested I should try a newer SCS that operates at a higher frequency, made by a different manufacturer (Nevro or St Jude?) that he "hopes" (no guarantees!) will have a better outcome than the last trial.  However,. having read numerous reports on this website of problems with any/all brands of SCS, I have decided not to go forward with another trial at this time.  I'm continuing on the above medications, which doesn't thrill me because I've heard of bad long term side effects from one or both of these meds, including memory loss.  At age 74, I don't need anymore causes of losing memory!

    Bottom line to my suggestions:

    ?-You need to be seen by a neurosurgeon who isn't "knife-happy" (ready to schedule surgery at your first visit).

    ?- You might get some temporary relief from lumbar steroid injections, but steroids aren't good for prolonged periods of time.  I'm not a Doc, so I can't tell you what happens with steroids, but my son who is a Physical Therapist has advised me against long term/repeated steroid injections.

    ?- Based on what I've read on this website, do your homework if the neurosurgeon suggests a SCS trial.  Several folks have mentioned that the permanent SCS didn't produce the same beneficial results as they had experienced with the SCS trial, so they were going to have the permanent SCS removed.

    ?Hope these experiences are of some benefit to you, and I wish you all the best in overcoming what must be exceedingly difficult living conditions.

    • Diamond14
      Diamond14 Yukonjak

      Posted

      Thanks for the replies. I have had 6/7+ nerve root blocks & steroids, help for a few weeks then that's it. I'm awaiting seeing neurosurgeon to see what he suggests but they are thinking it will be a nerve implant stimulator. The problems I have with my bladder/bowels is all through the nerve damage to the discs around the back, I had part of the buldging discs removed & pain specialist said not compressing nerves no more but there's a cause for all the pain & suffering. I'm only young scared of loosing my job & my partner wants to have a child together as we have children to separate partners but my thoughts are I wouldn't be able to come off my pain medications & cannot manage without them & don't know how I would stand on that situation? I have no quality of life I spend all my time in bed & struggle through work, currently off sick at the moment. I've asked them to just kill the nerves fully but this couldn't be done as I would end up in a wheelchair, I can't walk for long distances & cant do a lot of things which is no life. I'm mid 30's & need something done as I can't continue like this for ever. Thanks 

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