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Pain Concern
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Two failed back surgeries

Where do I start? I already have had depression and anxiety before my surgeries and now that the second back surgery (fusion) has failed I am no longer able to think that this will ever get better and I will be in this pain for the rest of my life (I’m 36) so now my depression and anxiety has gone way out of control and I don’t know what to do. I’ve had to quit my job and I cannot do anything I used to be able to do. I find myself posting on social medina because I have no friends and really no one to talk to so this is why I am here

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Hi there, believe me I understand. I decided against surgery after a consultation with 8 orthopedic neurosurgeons. My issue was that I broke my sacrum and S1 and L5 won't heal. The surgeons said that inserting a long rod maynot help. They couldn't guarantee it would relieve the pain and couldn't guarantee more than a 50 percent improvement. In addition out of 200 fusion surgeries they do only one is a sacral fusion. So I continue to suffer in pain. Like you I am lonely. My only friends are on social media. I have 2 sisters that I speak to on the phone each week. However we live some distance from each other and never see each other.

I often think of suicide but I'm too scared to try in case I muck it up and end up in a worse situation.

Please contact me anytime and let me know where you're failed fusions were. Lola x

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Thank you I’m just so lost I also think about suicide but snap myself back out because I realized that sure I would be taking my pain away but at the same time the pain will go to my family. So for the past 4 years I’ve been trying to get by but now I feel so hopeless

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I know how lonely pain can make. You have said t roughly where you live?

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I’m in the states

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Oh I'm sorry - that means we can only be media friends. I also have severe pain in S1 and S2. I've had a decompression surgery and a fusion for pain in L3 and l4. I also have a lot of pain in my thoracic spine. I've had a neuro modulator put in which does help a bit but otherwise it's medication. Good luck xx

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Hello, I’m in pain management and have been for years. I’ve had all of the injections they have to offer and nothing helped. The tranforminal epidural (TFESI) actually made me worse by giving me right foot drop and more scar tissue. I also had the Radio-frequency ablation (RFA) and it literally shocked me to where My reflexes made me jump off of the table. The only thing he said he can do is put a Stimulator up my spine and I’m definitely not going to do that just based on my previous encounters with pain management injections. I’m on medicine (opioids) for this and my anxiety and depression but I keep getting put on more and more meds and the side effects are horrible. I weaned myself down from 3-5/325 Percocet a day to 1/2-1 a day. And that’s when I started to feel the pain again.

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Hi jl

I am a fellow long-term sufferer (4 years+ now). I have had all kinds of medication, injections and de-compression operation, none of which have helped. I have also had nerve conduction tests and examinations by Neurologists. Being a long term chronic pain sufferer I was eventually seen (after waiting 60 weeks) by our local Pain Management department and I have now been assessed and approved for spinal chord stimulation (the stimulator you referred to). Like you I was very sceptical about another operation in my back but I have been to meetings where people who have had the stimulator fitted have shared their experiences. They have all said it has been life-changing for them.

For the past 6 months or so I have been rigorously focussing on increasing my strength, fitness and well-being and I appear to be improving my debilitating chronic pain symptoms. It still varies in intensity day to day and also during the day but I am finding that I can manage to do most activities and manage the pain with a regime of exercising, walking, cycling, relaxation and mindfulness techniques combined with lying down for an hour or so (usually once a day around dinner time) if, and when, the pain increases to fairly high levels.

I have told the Pain Management department about my progress and that I may not accept the spinal chord stimulator if I continue to improve.

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The neuro modular is the same as the spinal stimulator - I have one and it relieves the pain. Why don't you just go and discuss it and find out more information? Had one for 4 years and haven't had any problems. Or you can look at web sites and see what people say or do about it. Really - I strongly advise it. You also do A3 week course with Physios,OT. nurses and a psychologist who refer to suicide, mental health etc

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Hello, I work for a pain management doctor that does these procedures. I’m going to consider it but not looking forward to it. I know there is a week trial period before they do the actual implant so maybe I will just see what that feels like and make a decision based on that

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That's what I did. The week trial was a good idea but I got a massive infection in my wound, which delayed the permanent implant.

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Hi Thompson, sorry for your pain, have you tried medical marijuana infusion as your tea? It has less narcotic effect but will greatly help in your chronic pain and anxiety.

It was really helpful in times of pain

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I disagree re taking pot for pain. I understand it helps relieve nausau for chemo patients. It does nothing for back pain. Except buzz u up n make new of addicts of dope. Taking oxy for pain helps with pain. I hate the awful stigma attached to Oxy. It’s a lie n a new way to make money and promote a new addiction. I am a person in pain looking for pain relief, not looking for a buzz.

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Well it helps Gubbie and it helps my husband so that is your opinion only.

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hi sorry to hear about your problems I have a slip disc at l 4 &l5 I know the pain your in it does make you deppressed take care of yourself

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hello i am so sorry. i had 2 failed fusion surgeries also. i live with constant sciatic pain. i hope we can help each other. may god help us learn to live like this. please tell me more to help me understand more fully.

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Hi there, like you I suffer from my back due to an accident whilst in the army that was back in 1976 at the time I was told I had strained my back and to take it easy for a couple of weeks and it would be back to where I was before but as time has passed it has only got worse a few years after the accident they offered to fuse the damaged joints but added that there was a 10% chance of me never walking again and they added that they would have to fuse the joint above and the one below so with the 3 damaged ones it would be a 50/50 chance of never walking and being in a wheelchair for the rest of my life so I refused to have it done and said I will wait until I get to the point that I can no longer walk/stand as then the op would have a 50/50% chance of me walking again I know the numbers were the same but one sounds a lot better than the other in the end I had to stop work at 48 after my doctor had been telling me that I should not be working for just over 7 years so I decided to pack it in and now at 65 I am still the same but now I can take my time doing anything which eases the paid quite a lot and if I dont feel like doing something then I just leave it until I feel like doing it.

I now live on my own so I have no one to be bothered when I only half do the hovering and it has to wait for a couple of days until I feel good enough to continue, now I have several hobbies which I try to spend some time doing as it is when you are not doing anything that the pain is worse if you can keep your mind of the pain then it doesn't control you but you can almost control it.

good luck finding something that helps you control the pain.

regards Poppy Ann

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I am not surprised that social media doesn't help, we only make very superficial friends on social media.

I won't go on about the different types of pain management, I am sure you have done that already, or at least found the websites like paintoolkit.org.

I wonder though if your GP surgery has a social prescriber or a care navigator or care coordinator? They call them different things in different places. They can sometimes refer people to local services that help with the psychosocial side of things, whereas GPs just deal with the medical.

For instance at our surgery they can refer people to an art class which isn't based on what is wrong with you, it is just for enjoyment. People say had great it is to go somewhere where no one talks about their pain, and for a while their pain goes away. it can also be a way of making new friends.

I joined the Patient Participation Group at our surgery and made some good friends that I still see even though I have left that surgery. We were always on the look out for people like you that have chronic conditions and experience in using NHS services. Assuming you are in the UK, maybe you could try something like that.

Good luck!

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Hi thanks for the reply. I had scans last week which were just as bad as the scans I had 6 months ago. I see my neurosurgeon tomorrow for a check up. I am in pain most of the time. A lot of it is nerve pain. I feel like I have a big bowling ball in my vagina, I have verin y painful muscles in my lower butt and thighs, my left leg is numb and my feet tingle. It seems to be getting worse. My only prescribed painkiller is a 20 mcg Bupranorphine patch which does little and Lyrica which I have pretty much become immune to. I am so sick of my life, down and depressed. Like you when I think about suicide I also end up thinking of the people I would hurt. Sorry for the long depressing rave. I'm not always this depressed. Hope to hear from you soon and I wish you and your family all the best. Lola

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Welcome..sorry to hear of ur suffering.Have u thought about alternative medicine like medical marijuana /acupuncture or chiropractic.I wish u nothing but the best in finding what will help u.

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Hi there,

Speaking as someone in a similar position, I have also had two failed surgical ops on my spine.

Resulting in losing my job of 25 yrs..so much time off recuperating.

Last year I paid privately, approx £200 to see a specialist at Guys and St Thomas hospital. A Mr Adnan al Kaisy. Following this appt, he advised that if I went back to my GP and got him to consent to Guys having clinical responsibility for me ,an operation to fit a spinal cord stimulator could be carried out on the NHS.

I will say it is not a perfect and pain free solution,but it does give a great deal of relief from chronic pain.

It's a long road you're on I am afraid and the misery and depression pain causes is at times despairing.

Maybe you would be a suitable candidate for a similar procedure, worth at least exploring?

In short, don't give up,I know how tough it is.

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Hi painbymotorbike

Difficult to see from your post if you have had the scs neuromodulator fitted or if you are waiting for one to be fitted on NHS. I am on the waiting list for one to be fitted by NHS in Aberdeen but I have been told that the waiting time will be at least one year.

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Hi I’m in the same boat as you two failed back surgeries and now I’m left in more pain than I was when I first injured myself. I have had all manner of thoughts going through my mind one day I’m happy and than bang I’m so depressed. So you’re not alone on this I hope you have more good days mentally and wish you all the very best, Prayers and thoughts.

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In some ways I have been lucky. I have had problems with my neck and spine since I was about thirty three. My problem I was medical retired when I was thirty eight and now at sixty eight my working life was stopped dead when I was 38 years old.

I was referred to Pain Clinic and I have have had chiro on many occasions also pysio.

I would advise you talk to your GP and ask to be seen by a Pain Clinic, they will send you on courses with relevant departments and explain how you can treat your problems

Whatever you decide try and remain active you are still young and have a great deal to learn. You may also be offered a course of CBT to assist in dealing with your disability.

Until you can return to work, possibly, try doing voluntary work within areas o the NHS I did this for many years and it did help me move on through the life choices I had to make.

The main problem you will have may be boredom and you need something to do. You can also try attending Day Centres associated with Mental Health especially if you are depressed or feeling low, people will be there for you and everyone will help each other.

The most important thing you can do is remain as active as possible, disability does not mean a wheelchair. If you need to work contact the Jobcentre the can arrange appointments with a Welfare Officer they will help you achieve what you wish to do

Good Luck and keep a hold

BOB

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Oh boy it keeps getting better. I had my Primary care draw blood and it came back that I have a very high level that double the max range amount for C Reactive protein levels. Depression anxiety levels are now sky rocketed.

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"Depression and anxiety" are movement and posture issues. This runs against the something in the mind meme. Find happy movements you can do. Copy the movements of a happy person. You will find some interesting experience.

William James has some nice quotes see

brainyquote.com/authors/wil...

Local churches are very good on support. Find one that can meet your needs. Join a bible study group. I am a buddhist and I go to a bible study group. Trying to understand parables and the like gets you to know other people in a shared undertaking. Which in turn enables you to make friends.

Prayer done well changes mind states. Investigate and see if this holds true or not.

Pain experience can be modified by the skills of meditation and mindfulness. Note: meditation and mindfulness is a skill which takes a little while to learn. There should be Buddhist groups near where you are who can teach you the relevant skills.

Google "thomas Myers" he has interesting things to say.

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