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

I am so pleased for you Maddyone.
I sort of share your feelings. Yesterday, for the very first time in spite of all my efforts, my doctor has finally agreed that I can have my spine X-rayed.
It's hard to put into words how angry, frustrated, furious I feel, yet now relieved. All these years of pain, trying to be stoical and just trying to get on with things.
I await an appointment. Good luck Maddy.

When I finally saw the consultant he refused to give injections because "You'll be having the operations soon and injections might cause an infection" 🤔
Thst was over a year ago.

Meanwhile, it is nearly 5 years since I had the X-rays.

I hope now that you will find relief from your pain, Maddy One.Thank you for telling everyone of your difficult journey.
It really is a dreadful state of affairs that it has taken so long for the problem to be identified.
Perhaps we should now speak out more and loudly.

maddyone's referral to a physio was pointless - it is just a stage in the delaying algorithm, and potentially dangerous. I am glad to hear that one poster above had a physio who refused to treat, but referred to where they should have been sent in the first place. As travelsafar points out ..."Then physio which is nearly impossible to do due to the pain and stiffness I have!!!"

The physio game is a delaying tactic to avoid facing up to the fact that there are insufficient doctors available for the first step - a proper diagnosis, which is how it should be done. People should be referred to the right specialist (or diagnostic scan/tests) for a proper diagnosis rather than massaging the waiting list figures by delaying people actually landing on it.

It is so wrong. I am convinced that the physio I was given to do ref my hip pain resulted in my prolapsed disc which needed surgery - which I had to pay for in order to be able to walk at all.

And a week ago I went into hospital for injection into my hip and was given the wrong consent form to sign which said I was having one injection when in fact I was having another - the one on the form is absolutely contraindicated and the consultant acknowledged this when I challenged this. What if I had not been on the ball?

It is all a sorry mess - my GP late OH would be turning in his grave ......

Sadly this run around is not unusal now. As you said it's done to keep names off the waiting lists. I need another hip replacement but am going through the same kind of thing, medication....which doesn't help just causes more issues. Then physio which is nearly impossible to do due to the pain and stiffness I have!!! I walk every day all be it slowly and do seated exercises twice a week. I am pro active in trying to help myself but I know I need HR as it's the same pain I experienced in my other hip.🙈

So pleased for you Maddy I do understand your frustration I do think we put up with an awful lot before we get the help we need and deserve. You haven’t had an easy time of it these last few years, and i’m so pleased you can see an end to your pain.
Thank you for posting too as this might help someone else looking for answers. Good luck.

Rubysong, so sorry to hear this. It is good to finally get a diagnosis though, so some treatment or drugs can be started.

DH went to the doctor with a hand tremor. He was sent to the hospital where they did tests and told him it was carpal tunnel. Eventually, after other tests they came to the same conclusion I did at the start and, of course, he has Parkinsons Disease.

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

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. 💐

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

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.

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.

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.

Luckygirl3

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.

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!

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!

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).

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! 💐

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.

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.

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.

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

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?

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.