Long wait for spinal surgery NHS

Thanks Joyce. Are you in the UK? I'm under the Orthopaedic Team at Salisbury hospital in Wiltshire, and would imagine there are quite a lot affected at my location. I put in a complaint as I was told the same, I have managed now to be moved to another consultant, but will have to go through seeing the new one and seeing if they agree with the decision. Fingers crossed you get your operation soon. 

Angie x

Yes Angie I am in the UK I am up north at Gatesheaf NHS .My gp said it wasnt any good seeing another surgeon and just to wait till mine comes back Good luck to you Angie xx

Thanks Ady, are you in the UK? And have you tried putting in a complaint?  Hope you here some positive news soon x

You got me thinking, i have rang my neurosurgeon's sec and it gonna be at least May for my operation we will get through this together all of us x

Hi Ady, glad you have an estimate. Mine was Juky/August at the earliest. However have just spent the day in A&E after my pain decided to kick up s notch, had to have an urgent MRI and am now hoping this might push me to being an urgent patient not a routine. x 

Its a shame that you have to go through that but if it speeds things up its a postive.Its always good to be part of a group who understand about chronic pain.Sometimes i feel trapped in a cycle of painkillers and hospital appointments and nothing else.x

Hi Ady, how are you getting on? I'm trapped in a cycle of pain killers and having no life. Despite ending up in the emergency department and now needing a two level fusion, I'm still on a waiting list for potentially another 5 months unless another consultant takes over my case or my GP transfers me. Sometimes I think we just pawns, pushed from doctor to doctor with no one considering the human element. x 

Hi Sarah, here in the UK Neurosurgeons only do operations that involve the brain. Orthopaedic surgeons deal with spines, upper and lower limbs. My problem is actually two disc bulges at L4/L5 and L5/S1 which are impinging on the L5 nerve roots and the S1 roots. My MRI results and CT scan results have showed the clear problems so I'm cleared for a Posterior Lumbar Interbody Fusion. I've had acupuncture, steroid injections and the epidurals to help manage pain but exhausted non invasive techniques now. 

Hope your recovery goes well, and you are starting to feel a little benefit. Here there is an 80 % success rate of fusion surgery so I'm really looking forward to having my life back, I'm only 47 and have another 20 years of working as a nurse, and want to get back into the level of fitness I had a couple of years ago. 

 

Hi Angie 

i live in Surrey in uk and had my 3 level spinal fusion on l4 l5 s1 by a spinal neuro surgeon. He was definitely neuro as my pain consultant suggested I transfer to him rather than the orthopedic surgeon I was under. It was a 2 level fusion with screws and rods and bone graft then the third level the disc was stabilised with a flexi rod and screws. They went through the back so posterior lumbar fusion like you. I also tried all the non evasive treatments with no success and he also did All of those for me. I am only 41 so know how you feel about getting my life back. I have been a fitness fanatic all my life and up until 3 months before my surgery I was still going to the gym and classes but taking morphine to get me through it as was determined to carry on with my life but after I had the discogram on three levels iss left me 

sorry pressed wrong button.....it left me in so much pain I could do nothing even on morphine. 8 weeks post surgery and feeling much better and just had my first dose of morphine reduced and see how I am on that. Now managing 10 mins on a static bike and a 15 min walk on treadmill each day but on days that I have physio I don't do anything. Just looking forward to recovery moving forward so I can get back to the gym and be able to go out and socialise etc. haven't been out with friends in so long as sitting was just so painful.i sincerely hope you get sorted soon, I know how awful the pain is and how much it affects your life. I have 3 boys (4 including husband) and an active job. Luckily my work have told me to take as long as I need to recover as I work in the private sector so not likely to return to work until after the summer. Good luck with everything 😀😀

Hi Sarah, I took your advice and spoke to my GP about seeing a Neurosurgeon. My GP has now written to the orthopaedic team asking them to make a referral onto the team at Southampton. Not sure how long this will take, and I'm aware of my rights to not wait longer than 18 weeks for treatment, so will continue to chase this up. 

So glad that you are making steps forward. I too am a fitness fanatic but can only manage swimming now. I'm single and my children are grown up, so they are a great help. I'm in the NHS but worked for over 10 years so should be fine having the time I need to recover. 

I'm off work at the moment having a week of taking tramadol, my pain decided to up last weekend and the pain literally took my breath away. 

Hope each day brings a little more mobility for you. Good luck too x

Hi Angie

glad you requested a referral. I was also initially under a orthopedic surgeon like yourself but my pain consultant had suggested that being that the pain was caused by compression on nerves, bone to bone etc with no disc left to speak of then spinal neurosurgeons are basically more qualified and may be a better way forward for me without putting words Into my mouth. I was aware that there are less spinal neurosurgeons than orthopedic surgeons but I also researched my neurosurgeon and he specialised in spinal problems with athletes etc so I felt that speaking to him and explaining what i hope to achieve etc was a better way forward. I knew that it would mean starting again but I felt it was worth it. Also my ortho surgeon nearly always meant me seeing a registrar, someone different on every apt but the neuro surgeon saw me himself at each stage and did my injections epidural and steroid on both my discs and facet joints and also did my discogram. I fell into the seen within. 18 weeks at all stages so was lucky and my op,was actually a month early as he had a cancellation so his secretly offered it to me which meant I was four weeks ahead and also meant I had less time to worry going in four weeks early. I am glad I went through neuro I had quite a lot of nerve damage which is still present but hoping physio will help with strengthening my weak leg and foot. I sincerely hope things work out for you and you get sorted soon. 😃

Hi Sarah, I've hit a stumbling block in being referred to a neurologist as there is a 10 week wait for an out patient appointment. Everything seems to be back logged here in the south west/ mid South. I got told today that an urgent case will be having their operation after waiting 32 weeks. I now need a two level fusion, have two disc bulges irritating nerves and touching the covering of the spinal cord. I've had caudal and foraminal epidurals every 6 months for 4 years, before that was steroid injections for two years, and I started with physio and acupuncture. I'm on a cocktail of gabapentin 900mg, naproxen, co codamol or tramadol, but it's not still not completely taking away the pain. I'm seeing my occupational health department in 2 weeks, and really hoping they can push for something to be done, plus my GP is really angry. Hope your recovery is still moving forward and physio helping x

Hi Angie. How frustrating for you. I know how tough it is being on so many meds and still not hitting the pain. I was on gabapentin, naproxen, 8 tramadol a day, diazepam and sleeping tablets and still suffering. When the tramadol (8 a day) were not working my pain management consultant suggested I try a new drug that is on the market. It really helped me and was far more effective than the tramadol. It is an expensive drug but I would advise you make another GP apt and ask If they can prescribe it. It needs special order on prescription as not very abailable yet but my pharmacy manage to get the next working day of my prescription gojng in. I have been on it about a year and almost makes you feel more alert than tramadol. It comes in 100,150,200 dose. I started on 100 and progressed to 200 twice daily. It is also a slow release drug so take one in morning and one in evening. It is called Tapentadol. I am still on it and i have just reduced from 200 to 150 and then hope to move down again in the not too distant future. Ask your doc about it and see if you can get it prescribed, I found it a lot better than tramadol and I was on maximum dosage with tramadol. I hope this helps you at least get some temporary relief. Again called Tapentadol. Worth a try. Good luck and let me know how you get on. Sarah x

Thanks for the advice, sarah. However, it's unlikely that the drug you name would ever be available on NHS prescription. What IS available under the NHS prescription system is becoming more and more narrow. My GP has a list of approved pain meds. Unfortunately, I can't take Tramadol; I react very badly to it. Back, then, to Co-Codamol and Gabapentin.  Don't really help, but I'm dependant on both after so many years. And, short of the surgery I declined, the drugs are my only option.

Hi Maggie 

tapentadol ol that I have is on nhs so is available to anyone in the uk. You have to insist if your doc says it's not on his list as they don't like giving it as expensive but my pain consultant at hospital prescribed it so my doctors have to prescribe it every month. All of my treatment has been on nhs. I hated tramadol and in fact it made me sick at first but got used to it. Tapentadol is stronger but none of the side effects of other opoid drugs. I would speak to your gp as if it's available on nhs it should legally be made available to everyone. It's a much better drug. Let me know how you get on.

Sarah 😃