Help and advice please
Posted , 6 users are following.
Hi all
I am hoping someone can give me some advice, I've been on this site for a long time and find it helpful and hopefully helped others along the way.
Back in 2010 ( 31 ) I injured my back, was doing light gardening work. At first I thought I had torn a muscle, over a few weeks the pain got worse for me, eventually I could hardly get up and when I was up I couldn't stand straight. I eventually went of to see my GP, who sent me to A&E as I also had leg pain and loss of sensation around my bum, I had an MRI and I was told this was all clear, however they kept me In for just over 3 weeks just upping my morphine levels and adding drugs, I did some physio. The pain never went but the drugs did help take the edge of it.
My surgeon I was under decided I had a conversion disorder, where the mind plays tricks on you for some reason or the other, and sent me to see the psychiatry team, I thought ok well if it is and it helps then I have nothing to loose. The psychiatric team sore me and said I was mentally stable and on there eyes the problem isn't in my mind and I needed further investigation.
My Surgeon made me feel totally like I was wasting time and resources and eventually I got to a point where I discharged my self. They sent me on my way with the pain meds and I kept these up and tried to manage as best I could.
In 2012-early 2013, I went to see a extended physio privatly, my GP referred me for a private MRI so I could go in with new imaging, they also managed to get hold of my original MRI from 2010. Before he even examined me he brought up my images from 2010, and said he was shocked I had been brushed aside as it was obvious to him that I had bulges in l3/4/5 and S1 and a anular tare, he asked one of his colleges to come in who was a surgeon and they compared the 2 scans, over the years the bulges had got bigger as had the tare.
He referred me back on to the NHS and I was seen by a different surgeon, this was done within 2 days. The surgeon agreed with there findings and he was concerned I had developed Caudia equina, he operated and did a multi level discectomy. Sadly this failed and I ended up having a spinal fusion over those levels. At first I was amazed by how much my pain had gone, apart from the back being sore and being tired from a 11hr operation, I was up and walking 2 days after.
About 6 months on I started to get pain in my back again and this time I had horrible pain on both legs and feet and my toes had gone numb, the surgeon scanned me and he advised that sadly the fusion had moved slightly and in his eyes they couldn't do anything as to remove it could make me paralysed. He referred me on to guys hoapital and suggested a spinal cord stimulator might work.
I waited a year to eventually get the operation but sadly this failed and the specialist said my pain was to far spread and that I have large amounts of scar tissue causing some of the pain, they decided that pain medication is the only way forward.
Now I am taking 300mg of pregablin 2 x a day, 60mg of codine 2 x. A day, amertryptilin 100mg 2 x a day, diazapam 10mg 3 x a day. Duloxatine 60mg 1 x a day.
Oxcodine quick release 20mg every 4-6 hrs. He has recently changed me from targinact to something called topentidol 200mg 2 x a day, he said the reason for change is that targinact is very expensive in the U.K.
Now all I get is dry mouth, dizziness, sleepy but can't sleep , but again I am only getting some help from the pain meds.
I will be totally honest I am now 38, I have 2 young kids 3 and 7, the last 2 weeks since the spinal cord stimulator failed I have become so down, depressed, I have dark thought and just want it all to end. I barely get 3 hrs a night which is disturbed sleep.
How can I get through this, I am seeing my GP to tell her my feelings and the thoughts I am having. But I have made plans on ways to end it, but luckily I go to photos of my kids and this stops me from doing anything silly.
Just to add, I have had a kidney removed due to a congenital problem, I have had 2 knee operations due to falls and I damaged both knees, I had my prostate removed last year as I had prostititus and multiple try's to get it to reduce failed so they removed it, I also had to have a circumcision last year as when I had the prostate operation my for skin didn't return and they said I needed a circumcision, the surgeon made a right hash of it, and I become septic, they did a second one and cleaned the infection, for me to have my 1 yr follow up a few weeks ago to be told I need further surgery as it still doesn't retract, sadly my wife and I are not intermate anymore as my pain makes it to hard.
Sorry for the long post but I am reaching out hoping someone can help and give advice.
I am trying to keep it together but am struggling with everything that's gone on over the last 6 + yrs.
1 like, 22 replies
buggsy1000
Posted
2 is there anything else I might or ask to try, and 3 has anyone else felt like ending it all and if so what did you do / try to stop yourself from wanting to end your life.
Thanks again.
melissa91009 buggsy1000
Posted
Hi
When my hip was at it worse I was begging someone it cut it off or sedate me. They wouldn't help or couldn't help and it was bad I was bed bound. I was very close as I couldn't stand it anymore. It had been four years and so many over doses, seizures from medication reactions, my hip was going into excruciating dystonic spasms that were so intense they broke my ankle. I felt it pop but couldn't stop it. (Still have ankle issues but that's another story). I was by myself for a lot of this and they were giving me 9 pain killers every morning the year before my ankle. At one point, after a sciatic nerve surgery in my hip in 2014, I was on 240mgs of morphine a day because the idiots didn't bloke my nerve so I was nearly demented. They worst part was being told it was all my head when I was in agony. I started having panic attacks (still do on occasion).
I don't how I coped. My family can't understand it. They saw me suffer and I just kept going. I didn't have a choice. I got angry instead of sad and my anger pushed me to not give up. I refuse to not get sad because if I got sad I would have hit rick bottom and may not have recovered. I pushed myself, every day, I still do. That's why I think you won't be able to recover or improve if the fusion is causing issues. I know it's easier said than done and clearly it is very risky but how do you get better if that's causing issues?
melissa91009
Posted
I should clarify. I cry like a baby about all this but then I get up and go for a little walk in my frame. I lost my working visa in London, my new life (I'm from Australia), my career as a paediatric ICU nurse and I'm not married etc so the chances of meeting someone is pretty slim. I have advanced osteoporosis because I was bed bound for so long. They say carrying a baby will fracture my spine. 😣
I am reliant in my mum and I'm 34. I write my feelings down. It helps it get them onto paper. Especially given this was caused by someone, it didn't just happen.
I think as far as medication goes, the very strong stuff could try to be weaned IF you can, as opioids can then cause opioid induced pain. I have weaned off everything except 30mgs of codiene 3 times a day. Having said that, as I said I'd get a few more opinions re the fusion moving. Someone with guts must be able to help you.
I hope this helps. I know it's relative and right now you've had an absolute gut full but don't give up. Keep pushing. I've had that said to me though and I wanted to punch the person 😉 because I didn't know how to push. All I can advise is to see a psychiatrist only to help day to day and get more opinions re the fusion.
Melissa
lilian05079 buggsy1000
Posted
Hi buggsy1000
I do feel for you buggsy but you are one of hundreds of people on this forum experiencing high pain levels 24/7...me being one of them.
Some of these people live alone and have to go through it with no support from family or friends.
All they can rely on is their meds and their GP's.
I am sure some of your pain meds can be eliminated. It is no wonder you feel dizzy and sleepy and at the same time can't sleep. If I were you I would take the neurological meds Amytriptyline which helps with depression as well and Pregablin(im not sure if that is the correct spelling)...and Codeine for pain..All the meds you are taking interact with each other giving side effects. If you check online you can see how they may interact in an adverse way.
I very often become down and depressed with pain and unable to sleep with my autoimmune condition, but like you I have my family around me and count myself blessed for that. Also when I look at the news and see how dear little children are suffering in wartorn countries and are left injured and orphans....I consider myself truly blessed that I am not going through their pain....best wishes......
buggsy1000 lilian05079
Posted
Hi Lillian
Thanks for taking the time to reply, and I am sorry to hear about your problems too.
I am seeing my GP on Tuesday to discuss meds, hopefully she might have suggestions but they are very much led by the pain specialists.
I have such negative thoughts about ways to end the pain, I just hope I don't let them get the better of me.
Sorry gonna get and get some zzzzz while I am tired.
Thanks again for your advice :-) x
melissa91009 buggsy1000
Posted
Hi
You poor thing. I've had similar experiences in the NHS with horrendous hip pain and was bed bound for 8 months. They said it was in my head.
Turns out both my hips were partially dislocating! I now use a wheelchair because the delay of my surgeries caused so much damage! I have constant pain now.
As a prior spinal nurse, the thing that jumped out at me was 'up two days later and walking' after your spinal fusion. That concerned me. Too much too soon, typical NHS! Did you have a back brace on post op?
To be honest, if I were you, I'd see another spinal surgeon and have it removed/replaced. I know it very risky. That's a huge about of medication and you only have one kidney! Are they monitoring it?
I have been very down etc too. They throw pain pills at you and expect you to cope. It's ridiculous!!
Are you seeing a psychologist or someone?
buggsy1000 melissa91009
Posted
Hi Melissa
Thanks for your reply, it sounds like your life has been a roller coaster as well.
I remember the first day after the fusion the physio team came along and was like George, we want to see you up and about and we will catch you if you fall, firstly I'm 6ft 4 and weight is 110kg, if I go then someone other than me will get injured, I also told them I was way to tired and to leave me alone, next day they came back with 2 big guys and 2 female physio. They basically told me I had no choice to get up and move as they needed the beds, so I gave it a go with crutches and a chair behind me, I managed about 50 Mtr before the pain started so refused to walk further, after a few more days of this they discharged me home, I was missing my wife and kids so was happy to leave.
When I had the spinal cord stimulator they got me down to 5 mg of diazapam 2 x a day and amertriptilin x 100 mg, they made me stop for the trial as trial, but as soon as it failed they put me back on to the dosages that help just that little bit.
My surgeon did also refer me to a Mr Lucas who's one of the leading orthopaedic surgeons In the EU, he said the same. They then put me back on al the pain meds as before, except for the new one.
I for the first time in yrs have spent a lot of time crying, not just because of the pain I am in, but seeming to have no other options than popping pills for the next however many yrs. my daughter had her school sports day recently, they did a dads race but i was the only one not to join in, my daughter asked why am I different to all the other dads, and she cried. I Found that totally heart breaking foot her.
I struggling to see a way forward, but hope o can get some help sooner rather than later.
Sounds like you are an amazing woman and had it tough to, I hope some of your words can rub off onto me.
.keep safe
George xx
melissa91009 buggsy1000
Posted
Hi George
As far as the pushy physio's I can completely relate. I think they got you up far too soon and the fusion didn't have time to fuse to the bones and hence moved.
Have you ordered your hospital notes? I think you should. You are entitled to a copy. I don't understand why they say you'll end up paralyzed if they redo the fusion? They don't operate on your spinal cord, just the bones.
I know Mr Lucas confirmed what your surgeon said but I think you need get other opinions. If they think it's risky they won't operate to protect themselves. However, as you say, you can't live the way you are. It's ruining your life. I'd be pushing and being a right pain in arse until someone gives you a complete, no bollocks reason to why you may end up paralyzed. I know it's scary and exhausting but to be honest, I was told they could do nothing for me and to suck it up by supposedly the best until a young 40 something surgeon came along and looked at me differently and realized I was dislocating. He has performed three surgeries in me last year and while I still have issues, I am no longer bed bound and only on one pain killer.
Don't take any crap, be firm but nice.
Let me know 😀
buggsy1000 melissa91009
Posted
Thanks Melissa
I have indeed this morning looked at getting a private opinion from a top surgeon called Mr Andrew Quaile, he had no links with any of the local hospitals and I have emailed his secutary and hopefully get an appointment for his views next week, it will cost me £400 to see him but he doesn't work in the NHS but he can refer and advice what should be done.
Hopefully he finds something, I think the surgeons are reluctant to take out the fusion because of other risks and covering there back as you say.
Regards
George x
amkoffee buggsy1000
Posted
Buggsy1000 I had my suicide all planned out. I was going to use a combination of pills and exhaust from my car to kill myself. That was about 8 years ago. I too have back pain. At first it wasn't bad and I was able to control it with Aleve. But one year of Aleve and all I got from that was a bad stomach.
Then as the pain increased I had to start on Percocet. My GP gave them to me. By that was short lived because he wanted me to go to a pain management doctor so I ended up basically at a pill mill. I was so naive at the time. This doctor used to compound pharmacy and had his narcotics compounded just for his customers. That way he could have me on three times a day oxycotton instead of the two times a day that is the FDA recommendation
In addition I also took Percocet. Then on my third visit to see him I told him I I missed one pill and he fired me. He said that he could not have his patients miss a pill and so therefore he fired me. Here I was dependent on my pain pills because of him and unable to get the type of prescription that he was giving me. So I went back to my GP and he continued legitimate opiate regimen until I get with a real pain management doctor.
But it was when I was with the pill mill Dr that I was suicidal. I had been seeing a therapist but not for very long and one day I got angry with her and I stormed out of her office and into my car. I broke down crying in my car and I could not stop. She came out to my car and told me that she felt I needed to stay in a hospital for a while. At first I said no but then I realized that she was probably right. So I get back in the building and call my husband
I ended up staying a week and it did me a world of good. It was very hard for me to admit to my husband and my adult children that I was thinking of killing myself but it was step that I had to take. In any event after leaving there I continued with my individual therapy for quite a while and of course I've got on with my new pain management doctor and my new pain meds
bronwyn97278 buggsy1000
Posted
Morning Buggsy; I have read the other replies, and yes they have re-inforced what is needed to let you know how much we feel, and care about, what you are going through. I may not be able to add much, but do want you to understand one important thing. When you say your daughter was upset that you couldn't "run the dad's race", imagine how she would feel if she did not have you in her life at all?.......Your life is a very hard one to bear, and I think we will all admit that when we get to "a bad stage" we all think we just can't go on; but there is always the family that stops us, as I know that they just couldn't cope if I was to succumb to my own feelings. Please always remember that your family loves you (otherwise they would have moved on to someone/somewhere else).
?As to your question re too many pain meds, I am wondering if you have tried Gabapentin, over Pregabalin/the large dose of Amitriptylline.? Many of us find more relief from this "nerve Blocker", than the Pregabalin (I trialled Pregabalin, and it did nothing for me, ) whereas the Neurotin/Gabapentin, gives me much more relief for nerves in my back. I also had to change from Duloxitine to Zoloft for more benefit (and find I only take this every 2nd - 3rd day after getting it into my system), and the valium that you take should counteract any adverse effects of the mixture.??
?I think, also, that 1stly, having a good Psychiatrist is something that you need.....one that you can relate to and who really understands you as a person............don't accept any who make you feel less of a person, as I know there are some who try to tell you/make you feel, that "You just have to Get over it all"....this is not want you need.....you need someone to Guide and Listen to you.....and being a trained doctor, can prescribe you with the meds that are more likely to help with your Severe Depression (and this depression is very normal for a man of your age, who has many issues to deal with.....and another little thing to think about....women can learn to live without intercourse....they just need a cuddle and emotional love, so you should not be feeling that you are letting your wife down there)
?2ndly; keep blogging onto this forum, as we all are here for you, and Don't want to find a day, when you have Not come on here, to tell us how you are feeling each day..........I guess it will be a celebration when you can tell us that you have seen/found a good therapist who you feel is going to get you past your present state (both mentally and physical pain).......and I do also feel that "involving you wife and children in your sessions is important, as they can't possibly really understand your pain, emotions/thoughts if they are not involved".......
?Do please keep in touch.............and I will be waiting for your daily reports. Bron
buggsy1000 bronwyn97278
Posted
Thanks for your kind words, the only thing that stops me taking my life is my wife and kids, but I am getting more and more upset everyday, this has also changed my temper.
I am seeing my GP to get something to help my mood and dark thoughts and hopefully get that rjisk factor away.
george
jessica27672 buggsy1000
Posted
Please go to a good chiropractor, I believe it's a nerve issue
buggsy1000 jessica27672
Posted
Thanks Jessica, I did see a chiropractor and a osteopath, both took history, and both gave me similar stretches to help, but they both read the surgeons discharge letter about how it failed and the movement and they basically said they couldn't do anything further due to the nature of problem.
I have found in the early hours when I wake up, I go to bed most night 21-22:00 but my pain wakes me, the one thing I did find help a little was laying on the floor with my bum against the chair and legs on the sofa. Seems to open the spaces up a Little.
Regards
George
buggsy1000
Posted
Just wanted to say thank you to everyone that's offered advice so far.
lilian05079 buggsy1000
Posted
Hi buggsy1000
Happy to help Buggsy!...it's good for us to know that there are people who want to help and care about our situation. Just to mention have you tried the TENS unit for the pain....sincere best wishes to you and your family...
lilian05079 buggsy1000
Posted
I forgot to mention has your medical professionals suggested steroid injections into the area where your pain is..I can recall having steroid injections into my knee before knee replacement and it really did stop the pain....pethaps you could mention this to your GP or consultant......my very bedt wishes to you Buggsy....
buggsy1000 lilian05079
Posted
Hi Lilian
Thanks for your reply.
Sorry lots of details missed in my first post as so much has gone on. I have had multiple facet joint injections, caudal epidural, I even had a chetermine infusion which was horrible, horse tranquilliser and it gave me night mares for 10 days.
I also got something called prostititus, and they did a number of prostate massages, and I ended up having my prostate at the age of ( 36), while they did this I had a catheter in situ, sadly they retracted my foreskin to much and I got a pariphmosis, they did the first circumcision and it got badly infected, I ended up with septic shock, they took me back In cleaned it and re did it again, only a few weeks ago I had my follow up, and they now said I have to have a 3rd one as the scar tissue is to bad and it still doesn't retract.
I just feel with everything else and nearly 25 operations in 6 yrs, I am at breaking point, seeing my GP on Tuesday to go over my meds, and my mood, I am sure many of us on here have felt the same.
Just at the moment only thing that stops me kids and wife, but if they don't get my pain under control I don't know what I will do.
Thanks again for support and advice.
George