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

M0nica

But if they didn't waste £millions on all these pathways, they would have the money to treat people ho need treatment.

They wouldn’t, because the underlying issue is a serious shortfall in senior clinicians - currently the pathways protect their time so that by the time patients see them, all other potential causes of their condition have been excluded. You’d be amazed at how many people opt not to have knee replacement, for example, once they know exactly what the implications and post operative exercise regime are - for many it is not the best solution.

The NHS encourage people to go private if they can, to cut the waiting lists. If you have a long wait for anything they will contact you to see if you still ‘want’ the procedure. They’ll try anything to cut the lists.

Some of the pathways may be effective, but others are just time and money wasting efforts to discourage people and go in disregard of the opinions already expressed by clinicians about the need for specific treatment.

If people refuse knee treatments eventually, is it really because they fully understand the implications and back out, or is it that they are worn down by constant physio appointments and going to and from the hospital and seeing different people all trying to talk them out of it, that in they end they decide they can take no more and just give up. Most of these people are in constant pain and these days you have to really fit and healthy to be ill and get the proper treatment.

OMGoddess! This awful system with computers overriding trained professionals is so very wrong. I'm so glad you got the treatment you needed but what an awful long convoluted and waste of clinical time to get there. Best wishes.

maddyone, 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.

Not bored at all. Well done you explaining the problems.

I'm pleased you'll finally be treated.

Both of my TKR were done privately - and you've well expressed, helped understanding of why this was necessary.

Thank you everyone for all your comments. I have an update; my spinal block plus steroid injection date has been set, it is to be on 21st March, so another month to wait. I’m not looking forward to it but I’m pleased that the date is set. I hope it will reduce my pain for a while. I know the effects of these injections are varied with some people having reduced pain for months, some for weeks, and some for only days, and for some poor souls it doesn’t work at all. We will see, but at last I will be receiving the treatment I need.

maddyone

Thank you everyone for all your comments. I have an update; my spinal block plus steroid injection date has been set, it is to be on 21st March, so another month to wait. I’m not looking forward to it but I’m pleased that the date is set. I hope it will reduce my pain for a while. I know the effects of these injections are varied with some people having reduced pain for months, some for weeks, and some for only days, and for some poor souls it doesn’t work at all. We will see, but at last I will be receiving the treatment I need.

Maddyone, my spinal block did work! It was a bit uncomfortable, but worth it. Good luck!

That’s good news Marydoll. I hope mine does too, but I’ll come back on here to say how it’s gone. I’m rather nervous about the procedure but hopeful about the outcome.

Maddyone, the area was anaesthesised first, before the injections.

Thank you Marydoll.
At least it shouldn’t be painful.

So it’s done! I finally had my injection yesterday, just over twenty four hours ago. I went to the private hospital near Salisbury, which was over an hours drive for us, but it meant I got the treatment quicker, about two months quicker I believe. I was treated by the NHS at the private hospital. The staff were kind and lovely and were very attentive and put me at my ease. I was amazed that the actual treatment only took about fifteen minutes. The injection went into my neck as the cervical area of the spine is the area affected. I was given a local anaesthetic first and the whole process was a bit uncomfortable, as Marydoll says, but I used my breathing techniques to get through calmly and it was over quickly. I was very lightheaded when I got up and they took me back to my room in a wheelchair. I had to wait a while to be discharged, but was given a cup of tea which was very welcome. The local anaesthetic meant that my pain in my arm was reduced, but I was told the steroids will click in in ten to fourteen days. I haven’t had as much pain as usual today but that could be the local still working. I didn’t feel terribly well last night as I was very light headed and dizzy, but I relaxed watching television. This morning I woke up with a bad headache which is a common side effect apparently, resulting from some leaking of fluid from the dura, which is pierced with a tiny needle in order to inject the medicine. If the headache and therefore leaking continues you have to return to the hospital for treatment, but as the headache improved during the day, I’m hoping it will clear up on its own. So it’s fingers crossed.

maddyone finally you've had the treatment you've needed for such a long time.
Your post sounds really upbeat so 🤞 for a successful outcome over the next few days and weeks!

Wishing you well Maddyone.

After years of pain in my hip and some useless NHS physiotherapy, I went to a private physio who was recommended by a friend. She was much better and recommended a private consultant who also works for the NHS. He had my NHS X-ray up on his computer. I was with him for 10 minutes but it was £250 well spent. I do not need a hip replacement but know exactly what is wrong and therefore what exercises to do.
I can hardly walk now and if I had been diagnosed earlier, that might be different.

Thank you for good wishes ladies.
Yes Liz, the diagnosis is key to getting the treatment you need and the pain reduction you need. I’m sorry you have had to jump hoops too.
Now I’ve had my treatment I’ve been told I’ll be going directly back to them for further treatment or surgery eventually if needed. It’s the arriving at the right place for treatment that is key, it so often takes so long. I was talking about this to my daughter this morning, she’s a doctor, and she was explaining about the shortages in getting the right skills at the higher levels because so many doctors and highly skilled people are moving abroad. She mentioned, because it’s relevant to my case, that MRI scans are difficult to obtain not only due to a shortage of MRI scanners, but a shortage of radiographers, who read the scans. That’s why MRI scans are difficult to obtain, and in my case (and many others I suspect) without the scan, there will be no diagnosis, and no diagnosis means no treatment. And there’s the problem. Look after our medics better and then they won’t leave.

I'm glad you've been seen at last, maddyone and hope the injection will be successful.

A young member of our family is a radiographer and did tell me that so many in her department have left the NHS because they are so understaffed and stressed, resulting in those left behind working long and unpredictable hours and becoming even more stressed.

Yes Callistemon, too few radiographers is a problem. It’s not just doctors who are scarce.
My hand and arm were quite a bit better the first couple of days because of the local that was injected, but my hand is hurting a lot again today. The consultant did say the steroid will take 10 - 14 days to kick in, so I guess that’s to be expected. I do hope it works, I can’t wait to be pain free. Bliss.

Good morning Maddyone, for some reason, I hadn't picked up this thread when you started it, and it has been interesting (and certainly not boring) reading about your frustrations and experience in finally, thankfully, getting the correct diagnosis and the correct treatment. I hope you continue to recover and get relief from the constant, wearing pain you have been suffering. You are articulate and informed and thus were able to persist when you knew you were not being dealt with properly, I do wonder how many poor souls have just had to give up and spend the rest of their lives taking increasingly strong painkillers, getting more immobile, more isolated.
Thank you for sharing 'your journey' (as the younger generation say!), and I wish you well for your continued recovery.

Thank you HousePlantQueen. Today I’m feeling a bit less upbeat because the pain has returned with a vengeance now that the local has worn off. The doctors said it could take 10-14 days to feel the benefits, but the nurse said maybe after a couple of days I might feel the benefits. The internet says 5-7 days for relief. I know I’m worrying early but I’m so afraid that the injection might not work. I’m so fed up of living in pain.

Thank you so much for this thread. Your story could be mine. I am 74 never had anything wrong before so had no idea how all this worked. Two years ago I woke up one morning with the most terrible pain in my neck and since then my story is the same as yours. I have had all those appointments, some in 3 different hospitals in one day, had everything tested and most I knew I didn't have. Physiotherapists give you exercises i was obvious you can't do and a piece of paper. End of January I saw a consultant who told me what was wrong, for the first time, the spine thing described above. On the way to sorting it out. This thread has been an eye opener. I thought they had trouble finding out what was wrong with me and was expecting the worst and I had life changing agony for 2 years. I didn't realise it was all just a game that everyone goes through I am so cross. The money and time that has been wasted on me is appalling a disgrace. I have an appointment with my GP in a couple of weeks and I will not be leaving the surgery until I get proper answers and a plan for the future. Thank maddyone for taking the time and trouble to let us all know your story

Hello everyone, and thank you to everyone who has contributed to this thread. I really appreciate your comments, concern, and interest.
Loretta I’m so sorry your story has been similar to mine. I hope you’re getting the treatment you need now.
I just thought I’d update you all as to what has happened since my last post when I’d had the steroid spinal injection. Basically it didn’t really work very well at all and I have continued to suffer a lot of pain. I’m typing now with one thumb as using the other fingers is too painful. Needless to say it takes much longer this way.
Anyway, I had another appointment with the spinal consultant. It was last Tuesday. He said the next step is spinal surgery. He’ll replace a crumbling disc in the area where my spine is narrowed. It will be a titanium disc, he described it as being a bit like a cage. I’m guessing that means it will allow movement like a normal disc. The wait is four to five months and so hopefully will be after my husband and I have celebrated our Golden Wedding anniversary holiday at the end of August. On August 19th I’ve got to go for a pre surgery assessment.
The success rate for this surgery is good, but nothing is 100%. I really don’t want to live with this level of pain for the rest of my life despite being terrified of spinal surgery. and so I can’t see any alternative
So onwards and upwards.

I’ve just read through this thread, looking forward to hearing that your injection worked.
So sorry it wasn’t successful, but my sister had the operation you mention some years ago and it worked, so fingers crossed for you.

Oh thank you Mollygo, that’s very reassuring because I freely admit that I’m very afraid of having spinal surgery. It’s good to hear about success stories.
Can you remember how long her recovery took? My consultant says two months but my daughter, who is a doctor, but not a spinal consultant, is warning me it could take longer.

Message deleted by Gransnet. Here's a link to our Talk guidelines.

maddyone

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.

That really could have been diagnosed a long time ago maddyone 😡

Pushing you around from pillar to post is unacceptable but I'm afraid that is what happens a lot and I think it is devised to artificially shorten waiting lists.

I have had a similar experience, in total waiting five years for an operation, with GP trying everything but a referral, medical staff "forgetting" to put me on the waiting list, Consultant leaving to work wholly in the private sector etc. Many people here have had a similar experience, including DH, thinking they are a waiting list when they are not. Another GP confirmed that was her experience with patients too.

It's ludicrous that one Consultant can't refer you to one of his colleagues in the same Health Authority.
I hope you get the treatment you need at last.