Gransnet forums


I’m delighted and I’m furious: neck problem finally diagnosed and getting treatment

(70 Posts)
maddyone Thu 15-Feb-24 17:45:23

I’ve only ever mentioned this problem on one other thread, because I’ve tried to get on with my life and cope with the pain as best I could, but finally I’ve seen the Spinal Consultant and I have a treatment plan and I’m over the moon.

It’s a long story but here goes;
I developed pain in my two middle fingers on my right hand. It wasn’t very bad and so I pretty well ignored it. This was about two/three years ago. Gradually the pain became worse and I could no longer ignore it. Whilst we were in New Zealand visiting our daughter last year (December 2022 - February 2023) I went online and made an appointment to see my doctor about the pain, because I could no longer tolerate even wearing a ring on that hand, and I’d started taking regular painkillers.

Once at home I spoke to my doctor and she sent me for a conductivity test to check for carpal tunnel syndrome. A few week’s waiting saw me at the clinic where I was told I didn’t have carpal tunnel syndrome. Back to the GP (so a further wait for an appointment) and she examined my hand and decided to send me for a hand X-ray. Further waiting for a few more weeks, and by then the pain was much worse and travelling up my arm. My GP phoned me a week later to tell me the X-ray showed nothing wrong. She decided to send me to the Hand Consultant, and so then there was a couple of month’s waiting to see him, during which time my husband regularly phoned the department asking when the appointment would be, because by then I was in quite severe pain in my fingers, hand, arm, and shoulder.

I continued to take painkillers, paracetamol every four hours every day, and Pregabalin was added in by my GP. I also used copious amounts of Voltarol, rubbing it into my fingers several times a day, and also rubbing it into my arm. When I had to take steroids for an asthma flare up, my pain was considerably reduced.

The Hand Consultant could find nothing wrong, but said he’d see me again in three months time. When I returned to him, the pain was worse. He said he felt the problem wasn’t in my hand but in my neck and I needed to see the Spinal Team, because I needed an MRI neck scan, but because he worked in one of the city hospitals, he wasn’t allowed to refer me to them at the other city hospital and so I must ask my GP to refer me to them. I spoke to my GP and she said she wasn't allowed to refer me to the Spinal Consultant because I must see a physiotherapist first (even though a consultant had said I needed the Spinal Team) and so several weeks waiting to see a physiotherapist followed. He examined me and said that in two weeks he would attend the Spinal Team meeting and ask the Spinal Team to take me on for the scan.

Some three weeks later I was informed I’d been approved for the scan and several weeks later I went to have the neck scan. Then followed a further wait and then an appointment to see a different physiotherapist who explained the results of the scan to me and said I need an injection into the spine, performed by the spinal consultant. He said as I’m healthy otherwise he could ask the spinal team to see me at the private hospital some hour and a quarter away. Then I waited for my initial consultation with the spinal doctor, and the date was today.

In the meantime we went back to New Zealand to visit our daughter again and my GP gave me steroids to help with the pain before the journey out and again before the journey back.

So finally today I saw the spinal consultant and today when I came home I cried with relief and with anger. He was so lovely and so positive and said it will only be a 3/4 weeks and he’ll do the injection. If I need the surgery afterwards he’ll do that and it won’t be too long a wait. He was so positive, he said it’s a common condition and he does these procedures all the time.

I’m so happy that my pain will go. But I’m so angry that our NHS has played games with me, sending me to physiotherapists clearly to keep me off waiting lists, and deliberately elongating the process, and every single day in the last year I’ve been in considerable pain and at times distress. And yet this procedure is the bread and butter of my Spinal Consultant’s job.

If you’re still reading and haven’t died of boredom, thank you. I just felt the need to share this horrendous journey and my anger that the NHS has played with me in my opinion, clearly to keep me off a waiting list for as long as possible, and I resent that because the pain I’m suffering every single day in not inconsiderable. I’ve got on with my life as best as I could, but this pain has very much impacted on my ability to enjoy my life. But I tried to enjoy life as best as I could.
Thanks for reading.

petra Thu 15-Feb-24 17:52:06

I could cry for you, and I’m bloody lived for what you’ve gone through 😡

Sueki44 Thu 15-Feb-24 17:53:39

How great that you are finally getting to the root of the problem and hopefully getting it resolved! Good luck.

Cossy Thu 15-Feb-24 17:55:50

I’m so glad you’ve finally got this sorted. Did they ever say exactly what is was or give you a specific diagnosis?

HelterSkelter1 Thu 15-Feb-24 17:58:08

Sadly I don't think this is unusual now in the NHS.

I am glad that at long last things are happening in a good way and hope that you will get a good result and be free of pain very soon.

What is the condition?

pascal30 Thu 15-Feb-24 18:00:35

I'm absolutely horrified, and yet sadly not really surprised,that all these experts don't have a holistic overview of what might have been the cause. It seems like a huge waste of resources time and money for both you and the NHS.. Surely one of those specialists could have seen further than their own specialism.. I hope you will be pain free soon

GrannyGravy13 Thu 15-Feb-24 18:00:50

So pleased for you that after years of pain you have finally got the answers and soon to have the treatment.

maddyone Thu 15-Feb-24 18:01:02

Despite my long post, I’ve given quite a potted version. So yes, I have stenosis of the spine in the neck area. It’s age related and very common. It means that my spine has narrowed and is pressing on the nerve in my spinal cord which is causing the pain in my hand.

Doodledog Thu 15-Feb-24 18:04:22

I'm pleased you've got it sorted, Maddy. I understand your frustration that it took so long, but fingers crossed (no pun intended!) you will be better very soon.

CanadianGran Thu 15-Feb-24 18:11:49

Isn't it frustrating. I do feel bad for you, and can tell you that here is Canada there is much the same runaround.

My older sister was suffering from pain and numbness in her fingers and up her arm. It took months of to and fro to figure out that they suspected her neck instead of her arm, and more months to get on a wait list for a scan. The scan was cancelled a few times at the last minute.

The finally deduced the pain was from degenerating discs in her neck, and it was too far gone to do anything. So now she lives with the pain. Thankfully here, CBD is legal, and she gets pills that help relieve pain and allow her to sleep. Conventional pain killers really upset her stomach and bowels.

I do hope you get relief from the shot they will give. Do you know what sort of shot it is, and what it is proposed to do? I'm assuming a steroid injection to relieve inflammation?

Jaxjacky Thu 15-Feb-24 18:23:12

Spitting feathers maddyone, I hope the injection sorts it out at long last.

Casdon Thu 15-Feb-24 18:43:00

What a hard experience for you maddyone, you have my sympathy, pain is so debilitating. I looked up to see how many hospitals do spinal surgery, and apparently there are only 40 in the whole of England, which is probably why there was such reluctance to refer you, as exploring other avenues first is gatekeeping the potential demand on services. The only way access would improve is a very significant investment in expanding or opening more centres of excellence I presume. I know that’s no consolation of course, and am glad you now have a way forward.

M0nica Thu 15-Feb-24 19:11:43

I read your post maddyone and no it was not boring.

The two things that occurred to me was firstly just how much NHS money was wasted with these stupid protocols about who can speak to who and what hoops you have to jump through before what really needs to be done is done.

The second is that they then wonder why people decide, if they can possibly afford it, to go privately.

DH and I both went through similar run ins, I with casrpsl ttunnel problems, he with a trapped nerve. In his case we went privstely becuse of the psin he was in. I stuck with the NHS and it took months of tests that both GP and consultant could see no need for in my case, because my need for the op was so obvious before it was finally approved.

Sago Thu 15-Feb-24 19:16:49

I am so happy for you!
You will feel like a new woman when you receive the treatment.
It’s frightening how much pain your body learns to tolerate and the damaging effect lots of drugs can have on you.

I had a year of severe pain due to a renal problem, I was on 15 pills a day and still going to work somehow, I finally had surgery got off all the pills and felt and looked like a different person.

You must be so relieved.

Marydoll Thu 15-Feb-24 19:25:10

maddyone, I feel for you. After fracturing two vertebrae and walking about for six months, not knowing I had done this. My GP said he didn't think there was anything seriously wrong! My R.A consultant spotted them on a whole body scan I had, along with two stress fractures in my foot! Eventually I had surgery to repair the fractures.
Unfortunately a nerve was damaged during the procedure and I needed even more intervention. I have never known pain like it, it was more painful than the fractures themselves, so I can totally empathise with your pain (and frustration).

Onwards and upwards! 💐

Luckygirl3 Thu 15-Feb-24 19:37:44

Unfortunately this merry-go-round is not only distressing for the patient but wastes NHS money, as you go back and forth down one dead end after another.

It particularly irks me that your GP would not refer to spinal consultant without you first going to see a physio. This really is such nonsense, and can be dangerous - diagnosis first, physio second (if it is relevant).

Callistemon21 Thu 15-Feb-24 19:44:33

I read it and feel for you, maddyone

This kind of thing goes on all the time and that the waiting lists are in fact far worse than we are told.

I thought I was on a waiting list for a knee replacement but when I chased it up, was told I wasn't on the list because I'd seen a nurse, not a consultant (she led me to believe she was a doctor) and hadn't put me on ths list because I'd declined to have the operation. Untrue. She lied.
A friend heard nothing about the same operation, when she chased it up she was told they'd taken her off the list and sent her a letter telling her to self-refer to physiotherapy. She never received a letter.

Even the nurse practitioner at our surgery says she hears about this all the time, people finding out they have never been put on waiting lists.
In the meanwhile, they boast that the waiting lists are shorter here than in other areas.

I hope all goes well now you have managed to see the right person but it should never have taken this long!

Callistemon21 Thu 15-Feb-24 19:45:06

It particularly irks me that your GP would not refer to spinal consultant without you first going to see a physio. This really is such nonsense, and can be dangerous - diagnosis first, physio second (if it is relevant)

Yes, that is shocking!

Casdon Thu 15-Feb-24 19:45:14


Unfortunately this merry-go-round is not only distressing for the patient but wastes NHS money, as you go back and forth down one dead end after another.

It particularly irks me that your GP would not refer to spinal consultant without you first going to see a physio. This really is such nonsense, and can be dangerous - diagnosis first, physio second (if it is relevant).

It’s not that simple though Luckygirl13, is it? If a specialist service like spinal surgery was subject to all referrals GPs thought might be for them it would be completely flooded with people, many of whom would not be in need of a spinal surgeon’s help. It has always been a gate-kept service for that reason, but now the NHS is so under resourced the demand is not being met, the referral processes have slowed down, and patients who do genuinely need the specialist service, like maddyone have to wait far longer than they should.

Suki70 Thu 15-Feb-24 20:39:26

Maddyone your post was informative, not at all boring but I’m so sorry you had to go through so much and for so long to receive a diagnosis and the prospect of a cure.

Opal Thu 15-Feb-24 20:50:51

So sorry you experienced this Maddyone, but this is a prime example of everything that is wrong with the NHS. It needs investment, but it also needs a complete overhaul from the top down, for services to be streamlined and for communication between departments to be improved. There is so much time wasting and duplication. I speak as someone who has worked for the NHS.

Elusivebutterfly Thu 15-Feb-24 22:15:56

Maddyone - I am sorry you have had such a long wait in pain to get what you need.
I think the NHS is currently designed to put you off persisting in trying to resolve your health issues. I asked for an appointment in June last year for digestive issues. I got a telephone consultation with a pharmacist who prescribed blood tests and gaviscon. I was told the tests were clear so nothing wrong with me. I said my symptoms were still bad. It was another wait for a GP phone call and another prescription. After a third prescription and little improvement I was told I needed to book a routine appointment on line. I finally saw a GP in September, three months after I asked to see a doctor. He referred me to hospital.

Joseann Thu 15-Feb-24 22:18:59

I'm pleased you persevered and finally found a light at the end of the tunnel. What a frustrating experience.

Shelflife Thu 15-Feb-24 22:27:07

So pleased you finally have a diognosis! You have gone through so much and been very stoical during a very distressing few years . Pain is emotionally and physically exhausting. I wish you well with your treatment and hope you get your life back ASAP. 💐

GrannySomerset Thu 15-Feb-24 22:28:38

I slipped on stairs and suffered from a very painful back. After several weeks I saw a GP who didn’t explore the injury but referred me directly to a physio. The physio ran her fingers along my spine and suggested I needed to see an orthopaedic surgeon urgently. Fortunately we had health insurance since an x-ray showed one vertebra in two pieces. I saw an interventionist radiotherapist who injected super glue under pressure - instant relief but only because we could pay to be seen quickly. Still don’t know whether walking around for six weeks with an unstable fracture was risky but suspect it was