7 replies to this topic

[Melissa M]

Hi all,

I have had 2 ADR operations and a fusion in C5-6.
I'm still having lots of pain.

I have tried almost everything:
1. surgical decompression.
2. opiates and anti depressant medications.
3. Cannabis.

Do not intend to have any stimulator or any other invasive operation.
I also lost my belief in any medications which most of them destroyed my stomach.

Anyone can offer any other treatment ?

Melissa

[davjed]

Melissa, I can offer you little except understanding and empathy. Many of us on here have the same problem. I can't take NSAIDs because of gastric bleeds and am now going through withdrawal from hydrocodone addiction. Have you tried Lyrica and Cymbalta. Maybe tramadol, although it doesn't do much for me. Massage, heat, accupuncture are other alternative you can try. Don't let it get the best of you. There are still times when life is good. Best wishes in finding your solution........

[pinkcloud]

Hi there Melissa,

First I say well done to you for trying all this stuff, your brave especially the surgery. Davjeds a true hero of sci,by what I know of his posts I read.... in MY eyes, hes probably had it for longer than i been alive and still hes understanding and patient to all new sci - a true wise honest gentleman and one I admire and life experience I follow to the T.

Thing is, with surgery its rare anyone can fix the damage thats already been done. They can only try to remove a problem to stop stuff gettng worse, ever heard of failed back surgery syndrome? I worked with hundreds of people over the years telling me what you do....I never thought it would happen to me.

Meds hardly ever take much pain away - and many will cause damage like what you have got to your body in the end.

I repeat meself on forum, pain is felt in the brain, medications work on the brain to distract the nerves from thinking about pain in a negative way - or help to take the mind of stuff just a little. A lot like have a laugh with your friends helps when we have been dumped by a partner, your still dumped..the emotional pains still there...just your minds not thinking about it to such a high degree - words I repeat from consultants to you.

There IS a new treatment out there, discovered by looking at mri's of people who never feel any physical pain in life..and stimulating the same brain responses by attached electric wires to you, its new and looks promising. I can find out the name if you wish. Like viagra wasnt invented for impotence - neither was this technique invented for pain relief....both found by accident, so I have been told by medics.

If it was possible you were to cut your back off - you would still feel the pain. Your not 'imagining the pain', yet is it real or phantom pain? only you or the doctor can guess.

Your nerves, muscles etc were damage before surgery...then after the surgeons knives and forks went in you, they had to try and repair AGAIN....with no instruction booklets to help them.

Its hard, its disappointing, its cruel....but let sci hit and control your emotional responses to ppain in a negative way and it WILL get unbearable. I know, I lived for 2 long years with me t-spine being crushed by a disc...just on paracetamol...undiagnosed and just on paracetamol - living a life doing stuff most ab's cant manage physically - me mind the only thing that kept me from surviving the dangers of it. Now...well the body just does not work in a mechanical way so activities limited even on loads of meds and I'm much worse than even when the cord did have a disc squashing the life out of it - and no disc is now. Its do-able to cope as you are - not easy. And support, support and more support - helps

Edited by pinkcloud, 18 June 2011 - 08:43 AM.

[Melissa M]

pinkcloud, on 18 June 2011 - 08:36 AM, said:

There IS a new treatment out there, discovered by looking at mri's of people who never feel any physical pain in life..and stimulating the same brain responses by attached electric wires to you, its new and looks promising. I can find out the name if you wish. Like viagra wasnt invented for impotence - neither was this technique invented for pain relief....both found by accident, so I have been told by medics.

Pinkcloud - what is the treatment that you mentioned ? I hope it's not another stimulator intending to be sticked in my back.

Melissa

[pinkcloud]

I go into detail for you...as am unsure of detailed problems, and you may relate to this, I do hope.

Ever heard of emu oil or topical capsaicin cream? - both raved about to me by the founder of a pain management charity - with emu me physio (not nhs) used on massage(top grade nhs/private healthcare/experience of neuro rehab and got me learning to walk again)

Capsaicin cream I am wary to use as I have no feeling in me back - yet at the same time, hypersensitivity in areas too, so if i did get burnt i wouldnt feel it -I get nasty autonomic problems instead (for example if me back is wet I cant feel it - yet put a towel on there its unbearable - and spasms are felt horrendously) check with your doctors

Electrical muscle stimulation (EMS) - neuromuscular electrical stimulation (NMES) or electromyostimulation - on a respected bbc horizon programme, it showed it working on a stroke patient who had nerve damage and some paralysis, she cried with relief, very touching to watch

Sorry I dont quote off the net and rarely suggest websitesI wont give you a link to a website, the internet I dont really trust, I was in talks with Consultants about it in person. The conversation I wont repeat as it would take up 40 pages - and also I would miss important medical parts out because I'm in no way medically trained to do so. I would not recommend this to you if I thought it was poppy trot in me opinion. Offering false hope is never a trait of me personality.I hope to try it if available to me - the worst is - it wont work, worth a day of me life trying I reckon.

How i feel this site will help you, when no one else has the ability
I do look on here for loads of stuff after the doctors cant explain things or - if I get a new symptom I wonder if is important to ask a doctor - and ways to cope mostly. Apart from only a few way out talk, which Simon or other members remark as being suspect - i have only ever got excellent help here. Other than that I trust no other forums, or forums lack much information. I truly recommend this site to you, not perfect in everyway, yet as close as can be I found - and proves as an aid to quality of life improvement due to the members that are attracted. I explain this as in the world of sci - it can be a lonely place alone in this sci body. You may never get relief, answers, improvement in your condition, yet you can adapt to make life just as enjoyable as before sci - in a different kind of way.

I hope this helps, if not keep looking, a tine bit of relief makes a huge improvement in living

Edited by pinkcloud, 21 June 2011 - 07:20 AM.

[wheeliebear75]

Melissa M, on 17 June 2011 - 07:48 AM, said:

Hi all,

I have had 2 ADR operations and a fusion in C5-6.
I'm still having lots of pain.

I have tried almost everything:
1. surgical decompression.
2. opiates and anti depressant medications.
3. Cannabis.

Do not intend to have any stimulator or any other invasive operation.
I also lost my belief in any medications which most of them destroyed my stomach.

Anyone can offer any other treatment ?

Melissa

Have you tried a TENS unit (Trans-durmal {through the skin)Electrical Neuro {nerves} Stimulus)? It works with pads much like what are used for ekg & eeg tests aka it does NOT need surgery you simply attach the sticky electrodes to the area you need & use the electrical current to overwhelm/disrupt the "Ouch!" memos going back & forth from the nerves to brain which nerves communicate by a bio-electrical system which is HOW the TENS unit works thereby making a "static" that the brain finds harder to single out & read the "ouch" memos that are normally going on.

As others have said....many of us have to deal with this burning nerve pain as a daily struggle....I know it in no way makes the pain less....but I do hope it makes it somewhat more bearable.

[lavenderthistle]

Probably not very helpful, but....

I try to focus on something outside myself. I take herbals to relax, tension makes the sensations worse. I also try not to think about how I feel. Out of the list cannabis would be my top choice. Pills don't ever seem to take anything away they just make you not really care. I try to find the not caring phase on my own. There are times when the pain is extreme and beyond a simple "think of the pretty butterfly" intervention. When that happens I take a warm bath and focus on the best day of my life, I try for full mental immersion. On those days I'm pretty much mentally unreachable with friends and family. You aren't alone and sometimes for me, just knowing that there are others out there in the same boat helps.

I'm also a fusion, and some of the odd sensations are due to the hardware

[Tetracyclone]

Melissa

Welcome to the forum and the club no one joins willingly! i appreciate the description you posted on the web, as misery loves company.

It is possible to focus the mind away from pain, theoretically, and golly! but there is a lot of time to practice that.

On the other hand, there is an instinctive pull to escape pain at any cost. I can only wish you well in your struggle.