Nerve pain/damage

[RHYN]

Any advice greatly appreciated, so glad to have found this forum. Hoping someone can point me in the right direction. Post spinal surgery for scoliosis, is it possible to diagnose nerve damage? Our 15yr old is in horrendous pain. Stinging and burning pain, now almost eight months post op but they keep saying there is no nerve damage and they said if there had been, there would have been paralysis. Left shoulder blade stings and burns which resembles neuropathic nerve pain, back is so hyper sensitive to touch and a constant ache across back.

[etheral]

An EMG may be helpful in diagnosing this. Meanwhile, an effective drug for neuropathic pain such as pregabalin (Lyrica) could be tried

[RHYN in reply to etheral]

Hi Etheral, thanks for responding. I have sent you a PM👍.

[Scotsman53]

Still in pain after eight months: needs to see a pain specialist, if that's not already happened (it really should have).

[RHYN in reply to Scotsman53]

Sent you a PM Scotsman53

[BadHare]

Rather than trying toxic drugs with nasty side effects, see if injecting vitamin B12, the natural form methylcobalamin will help repair the nerve damage. I regained a lot of sensation in areas that had been dead for over 15 years, or had painful paresthesis. It also helps with ongoing pain relief.

I find injecting every four to five days best, for me, which costs less than £1 each time if I buy a box of 100 vials from pharmacies in Germany. My local needle exchange provides the hardware though needles, syringes, alcohol wipes, & sharps boxes are available online & can be bought in bulk. There are videos online on how to do this, & lots of useful information on here on the PA (pernicious anaemia) forum.

Make sure you eat plenty of fruit & veg or take a good supplement for folate as this is essential for B12 to work effectively.

[madge1979]

I’m so sorry your child has this nerve pain , as it can be extremely difficult to live with. I have very bad nerve pain from an operation wound about 9 years ago .

Nothing really helps and I cannot take Anti Inflammatories .

However, the Doctor prescribed RALVO LIDOCAINE PLASTERS , which changed to whole situation for me .

They contain Lidocaine which has a numbing effect on the area applied to , and so stops the pain .

They’ve been a Godsend to me and I’m surprised no one has recommended them from your GP’s Surgery .

Best of Luck to your child 😘

Mx🌹

[RHYN in reply to madge1979]

Hi Madge, thanks so much for taking time to reply to my post. It will soon be eight months post op and our daughter is 15yrs old. They had her on gabapentin for over five months post op (12ml three times a day), paracetamol and ibuprofen. They also had her on the lidocaine patches which they told us to apply at night. We used them for almost three months but it didn’t make a difference although we did find they were not good at staying on. During mid August, they changed the gabapentin to amitriptyline but it was only 10mg at night. Our own GP then upped it to 20mg but it hasn’t made a difference. She is in horrendous pain, a constant ache across her back and a periodic stinging burning like pain in her left shoulder blade. Her back is so hyper sensitive to touch and it has been like this since her operation in March. She also gets out of breath easily and it can happen even when she’s not moving but it’s not panic attacks. After the surgery, she had fluid on the left lung so they had to keep her in longer than they thought. Had an appointment with the pain consultant this week and they are changing her from the amitriptyline onto pregabalin - it’s only going to be 50mg at night. The pain consultant said she hardly ever gives medicine as she prefers to use other methods, she said she is a non prescriber and prefers to use other methods such as TENS, Lidocaine, both of which we have tried. We are going to start her back on the Lidocaine tonight. The surgeon has said it’s muscular, our GP and the pain team have said it’s neuropathic nerve pain - the surgeon and the pain team also keep saying there is no nerve damage. He said if there had been nerve damage she would have been paralysed. Thanks so much for replying, any advice greatly appreciated.

[Catr12 in reply to RHYN]

Hi There,

I suffer from the same. Ive tried every painkiller going, gabap,amitrip,pregab you name it ive tried them. All they do was cause me more side affects. My own doctor told me a few years ago that it was muscular. MRI scans all showed clear. No nerve damage so what is it then. Tingling and numbness and my ankles feel like they are getting strangled. Think i will try vitamin B.

[madge1979]

Oh , how awful for your girl 😘. If you are able to gently wash the affected area with warm water with some liquid soap , then clean water , then dab dry , the Lidocaine Patch will stay on Well.

It won’t attach if the area is damp or oily in any way , but it will make very good contact if the skin is very dry first .

If that doesn’t work , a piece of tape or sticking plaster on each side will hold it !

Slightly stretch the plaster gently, before placing against affected area . And ever so gently hold down a second or two with palm of your hand, to make good contact , assuring that no bubbles are between skin and plaster .

They’ve been a wonderful help to me , and I couldn’t live without them , as even a bedsheet touching my skin there is like a razor cutting my skin the pain is so bad . Give them another shot tonight 🙏

They’re a great alternative to drugs for me , as I seem to have bad reactions to anything I’ve ever tried .

Best of Luck to you both , finding what’s best for your Girl😘

Luv Mx🌹

[thecurecomesfromyou]

I am so sorry to hear of your 15 year old daughter and forgive me for going here so quickly, but from personal experience, they have caused the damage and the pain is definitely due to nerve damage.

I feel so much for her and people who suffer this.

I know it sounds a bit way out, but Badhare is someone who knows their stuff as well and the advice is sound and i know works Vitamin B12 helps to heal nerves and an anti inflammatory diet, with lots of fruit and veg and no sugary drinks.

The modern diet is so toxic that it by nature destroys nerve tissue. i am 53, if i have too much sugar my knees suffer and i get terrible pain, If i cut the sugar back, they heal. The modern diet works against the body and stops the body from healing itself.

Change the diet to less sugar, salt and fat, the body get a chance to heal. Taking drugs for the rest of your days isnt a cure, its mute switch for the fire alarm.

The pharmaceutical industry does not want cures, for anything, they just want a coping mechanism that makes money. And so alternatives will never be made public by Doctors who earn so much by being sponsored by drug companies.

Don't think this as quackery but acupuncture would help in the process and also reflexology.

Give your daughter a chance to actually heal rather than keep taking different drugs that just mask the pain, the damage is still there and it can be helped to heal. The body is a self healing organism that if given the chance and the right fuel and the right help, can reverse and heal anything.

Bless your daughter and i wish you and yours the very best

[RHYN in reply to thecurecomesfromyou]

Thanks so much for taking the time to respond. They keep saying that there is no nerve damage but a number of them have said she has neuropathic nerve pain, the surgeon however keeps saying it is muscular pain. We have repeatedly asked if there is nerve damage and they are all saying no, surgeon said she would be paralysed if there was nerve damage. I will def look at B12 vitamin and read up today about it.

[thecurecomesfromyou in reply to RHYN]

Your very welcome. Sadly more often than not Doctors do not want to admit mistakes as it means they could be culpable for suing if the condition led to something more serious and they were held responsible. Its partly the libel culture we live in and the increased pressure by Doctors to not get lawsuits for their mistakes. I must admit, i dont buy that she would be paralysed if there was never damage, as nerves have a vast range of hot and cold range, pressure , touch, and a massive array of sensations.

I had an accidental overdose in 2003, for painkillers for toothache. Very silly move, It injured my vagal nerve and cause heart arrhythmias, and also stabbing pains (was taken into A&E with suspected heart attack) , with very strange facial pressures, tingling, vibrating, burning sensations, my eyes at times would feel as though they were being sucked back into my skull. Although eventually after 2 years of irregular AFib, and Tachycardia, i got my heart fixed, i was left with all the symptoms above still. I was treated for Fibro, CFS and ME.

I realise that , in whatever way you put it, all these conditions are simply nerve damage, my doctor even could see that this could be true. The sensations i got were what happens when pain gets amplified, pressure and heat. The Nerves in a body that is in inflammation, pushing the muscle and nerves against bone, in this state cause pain, so the more you aleviate the inflammation, the less you suffer as there is less constriction.

So i wish you well with your endeavours and hope some of this may help your daughter as well as you and your family. As soon as i suffer any pain , i know its time to eat better fuel. The body is always wanting to heal, and in time, if done sooner and not stuffed with too many drugs the body given chance will heal up to a massive extent considering her age. With us older ones, not so much, but still a lot better than before.

[RHYN in reply to thecurecomesfromyou]

Sending you a PM

[RHYN in reply to thecurecomesfromyou]

Thanks so much for taking the time to respond. I have put another post on this thread so hoping someone can point me in the right direction.

[MaureenMK Researcher]

Hi, Im so sorry to hear this - it's hard for adults but harder I think for young people as it takes so much of their identity. I have lived with chronic pain for over 40 years and have been studying it and working with people with chronic pain/life limiting conditions for 20 years. My humble suggestion is that you should approach this as chronic pain in other words get your daughter to understand. I would usually do an education piece, hands on therapy and coaching. Have a look at something like the curable app. there are some good videos on YouTube and I am aware of some successes, essentially anyone I know that used it found it improved them. It might seem like the emperors new clothes but honestly I was an arch skeptic but if you engage and try the exercises, deepen understanding etc, it does help.

[RHYN]

Thanks so much everyone for taking the time to respond, really appreciate advice and opinions. So glad I found this forum. We are not convinced there isn’t nerve damage, they have repeatedly said there is not - even when we haven’t asked they have said this, it’s almost as if they are trying too hard to convince us. Is there a way to find out if there is nerve damage? If we wanted to see a specialist (privately) to do this, which type of consultant/specialist would we need to see and where is the best place to go? Our daughter is only 15 and the thought of her being left like this is absolutely heartbreaking. Hope someone can point me in the right direction.