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

That sounds like such a rough experience. I went through something kind of similar a few years ago with my shoulder pain—lots of waiting and bouncing around between specialists. It was really frustrating to deal with all the delays and keep hoping for answers. I’m really glad to hear you finally have a treatment plan and that you’re feeling hopeful about it. I hope the injection does the trick and you get back to enjoying life pain-free!

So pleased for you, and angry you’ve been sent from pillar to post. Being in constant pain is so debilitating.

I’m going through a similar experience with a pain in my left thigh. Soon as I mentioned it to dr it’s bursitis. I know it isn’t. Put up with it for several months and rang dr again and as soon as I mentioned thigh/hip I didn’t get any further. I had to see the physio even though I explained there was nothing wrong with my hip. Physio useless and once she was satisfied my hips were excellent diagnosed bursitis.

A few months later I ring dr again and insist on seeing GP who then examines me and agrees it’s not bursitis. Told I would be referred to a ‘bone specialist’ but it could be months before an appointment.

Finally used the health insurance I took out last year and 2 MRI’s later and 4 consultations with specialist we know it’s definitely not bursitis but maybe something to do with my spine/discs. Seeing private physio for 6 appointments (included with insurance) and he thinks it’s my gluteus medius that’s causing the problem and I’m doing exercises to strengthen it but I’m not convinced.

I hope you get sorted and I thank the Lord I went ahead and took out the health insurance last year otherwise I’d still be waiting to see a consultant on the NHS.

My best wishes, everything crossed here for a successful intervention maddy. A young friend (well 40’s, seems young to me) has reported huge benefit from the same surgery.

I do understand how debilitating chronic pain is, and how unnecessarily tortuous the process is to get help. I’m currently waiting for an appointment at the pain clinic as relief from steroid injections and rhizolysis proved to be short lived. The spinal ‘experts’ have suggested this rather than surgical intervention at the moment. To be truthful I’d accept anything that might help. Pain is adversely impacting my mobility and also mental well-being. I’ve withdrawn from my usual presence on two GN threads because it’s impossible to sound cheerful and I don’t want to spread gloom. Just pottering around this morning I’m exhausted and currently lying down trying to ease spinal pain. If anyone else says to me ‘oh have you got a back ache, that’s not too bad’ I’ll not be responsible for my actions.

Thinking MRI scans. In this area many are are outsourced due to a local staff shortage. My latest MRI was assessed in South Africa, very quickly turnaround. A knee x-ray last year went to Germany for interpretation, turnaround time was in my view an unacceptable 6 weeks.

I’ll be thinking of you as you wait, hopefully not too long maddy.

maddyone

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.

She was told 2-3 months, before she could do everything, but can’t remember exactly how long. She said life was better within a month and she could do lots more, particularly driving.
Hope all goes well for you.

Oh maddyone what a shocking indictment of ‘our’ NHS system! A complete travesty with tick boxes and collusion on a grand scale. Sheer frustration at this Kafkaesque situation would have had me howling - never mind the pain aspect.

I’d set out a letter giving full details and address is to Amanda Pritchard, she who is responsible on a fat cat salary for running NHS England. I’d ask her whether she would find this run around acceptable if it were one of her family? Send it recorded delivery. Address it to her PERSONALLY or strictly FAO.

Also, copy in another person. Don’t just keep it between you and her. Let her know you’ve copied in A.N. OTHER. I’ll focus her mind and subsequent reply. Perhaps the new Minister for Health? Wes Streeting?

Go to the very top. The chiefs need to be told how the indians manipulate waiting lists and massage the figures.

‘Our’ NHS the envy of the world? What rot.

P.s. I’m delighted for you!

So good to hear that treatment is in sight. How you coped I don't know. Sending you very best wishes for early resolution.

So sorry to read of all you’ve been through maddy.
Yes the system is well and truly broken but not just from the outside through lack of funding (good riddance Tories) but also from inside - too many ‘couldn’t care less’ doctors & nurses.

You could argue that they have been beaten down by over-work, under-appreciation, Covid, stress, etc. and that is true to a large extent. But there are still some who just don’t do their job properly. So I’m thrilled that you found a consultant who has the skills to help you and reassure you. A little of the latter goes a long way,

Sorry, missed the update (Duh)

My cousin had this done and it was successful, maddyone.

I hope you don't have to wait too long now.

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.

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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.

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.

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.

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

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.

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.

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.

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.

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.

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.

Wishing you well Maddyone.

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!

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.

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

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