Any advice greatly appreciated🙏

[RHYN]

Apologies for the long post. Hope everyone had a good Christmas and best wishes for a happy & healthy New Year head. Has anyone undertaken a three week residential pain management course in Bath? Am I right in thinking that it is primarily physio and psychology based and is there any medication input? Very interested to know about thoughts and experiences and are there any private clinics/hospitals who offer this on a residential or out-patient basis? Our daughter had a spinal fusion for scoliosis in March (she is 15) - she is still in horrendous pain and it will soon be ten months since her operation. They had her on gabapentin for over five months, then amitriptyline and now she is on pregabalin but the pain isn’t easing at all. She has a constant ache across her mid to upper back, a periodic stinging burning pain in her left shoulder and her back is hyper sensitive touch. She had low back pain before the surgery but it was mild in comparison to what it is now and it is an entirely different pain as the pain she has now (no lower back pain now). I asked the surgeon back in August if she is in a minority and he said no, she is totally unique. He told us that he has never seen this happen before (he had done over 4000 ops prior to our daughter’s one). He said they are normally off the meds within a month and pain free and back to normal 6-8 months after the surgery. He has repeatedly said there is no nerve damage - he said if there had been she would have been paralysed but we know there are lots more little nerves over and above the main ones. The surgeon said that he is happy with how it went and it has straightened her spine. He basically said that his job is done and the pain team are far more experienced with regards to pain. No explanation has been offered as to why she is still in so much pain. The pain team nurse told us recently that is the increased pregabalin does not help, they “don’t have anything left in their toolbox”. When she said this, my phone was on loudspeaker in the car and our daughter heard it (the nurse knew I was on loudspeaker and she was with me in the car). She mentioned the possibility of a residential three week course at Bath. Any advice greatLy appreciated.

[RHYN]

Praying that someone will reply to my post - any advice greatly appreciated.

[jointpain]

Hi Rhyn, I really feel for you in your quest to find some sort of pain relief for your daughter. My own experience with amitriptyline was horrific, I was given a low dose for back pain just over three years ago, not knowing about a spinal stenosis in my neck at the time. The drug would knock me out for the night but the morning would bring untold pain in my upper back and ribcage. Even after ceasing the same pain carried on for over a week, when I tried again the same thing happened again (just to prove it was the amitriptyline) I was then put on co- codamol which spaced me out, then naproxen which works well, I now take 250mg once a day. I also inject vitamin B12 every four days, this seems to help in so many respects, gut problems, headaches, joint pain, inflammation in my back, tiredness, fatigue. I now cycle at any opportunity to rebuild lost muscle.

If your daughter's consultant is adamant that the surgery is not to blame for the pain, it maybe the drugs she is on doing more harm than good. Even after stopping them the side effects carry on for quite some time. Inflammation is often the real problem, even if you can't physically see it.

I wish you and your daughter all the best and hope you get to resolve this pain.

[RHYN in reply to jointpain]

Thank you so much for your kind words of support. So sorry to hear what you have been through yourself, it must have been awful. We are fortunate that our daughter has not had any side effects of the meds but we are conscious that she has been on various meds since March, none of which are helping to ease her pain. Her whole life has been turned upsides down and she is only 15. The surgeon said the op went fine and her spine is straight but the pain she has had since surgery is horrific and it isn’t easing any, it will soon be ten months since she had the op.

[Emma2017]

Hi Rhyn, so sorry for your daughter. Back pain is just so all consuming. I had several spinal surgeries, the last one a fusion. Your daughter had it for different reasons, being scoliosis. I cannot speak for that. However after my lower back fusion I got a lot of upper back pain going into my neck. My fusion was nearly 2 years ago now. I looked into lots of different options. I felt it was all muscular related. I was on the highest dose of pregabalin plus I took dihydrocodeine. Last year I started to reduce the pregabalin and am now down from 600mg to 50mg. I felt in the end that the pregabalin made it worse not better hence me reducing it slowly. At the same time I started Alexander Technique (1 to 1) which is all about the right posture and sitting and walking etc. I also got deep tissue massage but not sure if your daughter could tolerate that yet. Slowly it started to improve and I could ditch the crutch and now walk quite long distances. We are all different but hopefully this has helped somewhat?

[RHYN in reply to Emma2017]

Hi Emma, thanks so much for taking the time to respond and for your kind words of support. Glad to hear your situation has improved - I agree about meds, we are really concerned that she has been on various meds since March and they are not helping. I have never heard of the Alexander technique but I will research it now, her back is so hypersensitive - putting on clothes, drying her back or trying to desensitise it - she feels like we are pressing hard into her back when we are not. Absolutely devastating to see her like this, we can’t even give her a proper hug as she is in so much pain. Tried the TENS machine and lidocaine patches as well.

[Emma2017 in reply to RHYN]

It’s very hard to come of pregabalin. I lowered the dose very slowly, like 50mg or only 25mg per day less and then stay on that for several weeks. Alexander Technique helped me but you have to find a really good teacher as that makes a lot of difference. At first I felt it did nothing but persevered, my teacher was very interested in my case and tried all sorts of different things and when things became a bit easier she made the exercises more challenging but nothing was forced. Her hypersensitive issue sounds like neuropathy which must be so hard for her to bear. Hopefully AT helps. My pain specialist believed a lot in doing everything on all levels. He recommended mindfulness and a look at my diet by a dietician along with AT and physiotherapy and pain meds. I felt the physio did not help so replaced that with AT but mindfulness is useful and a psychologist too. He stressed to me meds alone won’t help, you have to try the whole package. He was good and definitely unusual in his approach. Hope your daughter improves soon, she is too young for all these issues.

[Heloise]

Hi RHYN, I was middle aged when I became hypothyroid and soon after my GP said I looked like I had the beginnings of scoliosis. I had never had back problems before. I haven't looked at any previous posts so you may have ruled out hypothyroidism but I think there is a definite connection even if her tsh seems normal. It may not be directly involved; it may be that whatever caused the hypothyroidism may also cause the nerve issues. I also had some low back pain which caused nerves to flare when stressed. That's why Gaba may have helped in the beginning.

You might look at ncbi.nlm.nih.gov/labs/pmc/a...

Palmitoylethanolamide (shortened to PEA) “has anti-inflammatory and anti-hyperalgesic effects, due to the down-regulation of activation of mast cells”.