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Spine issues

5 replies

Adeleharry · 13/02/2025 11:16

Hi,

I’m new, I’m here looking for some advice as I feel I don’t have anyone I can really talk to and get things of my chest, and I just feel like I’m going to snap.

so I’ve always suffered from health problems, mainly my lungs but 3 years ago I stared on a new drug and I haven’t been in hospital with them for 2 years now.

Around the same time I woke in the middle of the night with what I can only describe as extreme pain in my shoulder radiating down to my arm and fingers. I went straight to a&e they said my shoulder dislocated and it was put back in place. I left hospital still high on the drugs but still in pain, over the course of 3 days I was given 3 different reasons for the pain. I was finally given an mri scan and turns out I had herniated 3 discs in my cervical spine. I was then sent to spinal surgeons and started on pain meds pregablin. They then said before they could operate I had to try cervical epidurals. Was sent to pain clinic had 3 lots of epidurals and none were beneficial. Was discharged back to gp who then had to refer me back to spinal team. I waited 12 months for an appointment, finally had phone consultation and was sent for ct scan mri and nerve conduction test. Waited for an appointment heard nothing for 3 months so called and was told I was missed off the list and was given an appointment for 3 months later. Went for my appointment and was told coz my results were older than 6 months I had to have then all repeated this took another 2 months. Returned to see spinal team and he tells me that there has been major changes in my spine in 6 months and he can try some more cervical injections or I can go for an acdf I said can I try the injections whilst I’m waiting for the acdf signed the paper work and had the injections 6 weeks later. No relief. I called to make an appointment as I was climbing the walls in pain and the meds I was in wasn’t helping. Had an appointment in November and said another mri scan, so had that done and went back to the surgeon and he said my neck is in a bad way my spinal cord is being flattened and I now need major surgery at a major hospital and it will involve removing vertebrae and rods and all sorts. Said that coz my high steroid use over the years my bones were very brittle and I should be aware of the risks. Also said there is no guarantee I will be pain free and I could end up paralysed. So I left and tried to cope with the pain, and went to my go who referred me to pain clinic but it was rejected. Last 3 months have been hell, I haven’t slept for more than 2 hours at a time as I am in so much pain, I called 111 and saw them and was told because of my other meds they can’t prescribe any thing stronger and I had to go back to my gp. Went gp next day and was told the same thing. I saw my surgeon and said I need to take the op as I can’t deal with the pain no more, and I was pissed that he couldn’t refer me to the pain clinic. The last 2 weeks have been horrendous, I found out again this week my pain clinic referral was rejected because I am under the surgeons.
im a graphics designer and have lost the feeling in my finger and thumb in both hands it was originally only 1 hand, I can’t sleep due to the pain. I feel like I’ve been given the run around by the hospital and gp, I had a complete break down yesterday and emailed my gp as I was so upset that my forever was rejected again as apparently you can’t be under the surgeons and pain clinic at the same time it’s one or the other. I feel like I don’t matter and I’m not worthy, I have got to a point that I don’t leave my house, I don’t even get dressed I’m so down and done with being in agony I can’t even sit in a&e and I can’t sit for to long and I know the wait times are crazy.
I emailed my gp and basically said I’m and desperate, the receptionist called offering me an appointment I said what’s the point I get told there is nothing they can do and I wanted it in my notes that I tried to get help and no one helped me and if any thing happens to me I wanted it know that I was refused, she put me through to the dr who said to come in I said what’s the point she then said abruptly well what do you expect us to do. I hung up and just feel so shit, I never had anxiety, depression or any mental health problems before this and now I lay in bed at night thinking if I just end it I will be pain free.

I am at the lowest I have ever been, I feel like I am being forced in to an operation that may leave me paralysed or with worse problems, I have lost my business. I’m moody and take it out on every body, I’m on strong meds pregablin, tramadol and cocodamol so can barley function so try not to take to much so I can function but also keep the pain under control.

im so sorry for the long post I just needed to vent as I feel like I’m not being listened to, I have a mountain of other things also going on with out all of this.

OP posts:
Isthisrealomgwow · 13/02/2025 19:25

Hi 👋
I hear you. It's an awful situation. You really sound failed by the Specialist and GP

I had the ACDF surgery in 2021, with similar symptoms you described. Three deteriorated vertebrae and 2 dehydrated discs.

The surgery isn't pleasant. They go in through the neck at the front, pushing the trachea to the side. The recovery from this took me 6 months. However, as soon as I woke up I could feel my hand, the pain was gone. They have to give you worse case outcomes, which is paralysis.

What hospital are you being seen at? Do you have confidence in your surgeon?

Mischance · 13/02/2025 19:34

I am so sorry that you are having to endure this. I have had spinal problems - lower spine surgery relieved my pain; but now I have similar problems in my neck and my hand is numb and burning, and I think it is impinging on the right vagus nerve as I am having heart rhythm problems. But - all I have been offered is physio, which I do very tentatively as I fear making it worse.

You really have been given the runaround and you must be so fed up.

When surgery is proposed they always outline the worst case scenario so that you can sign the permission with all the facts in front of you. Don't forget that when they say (for example) that 5% of patients get paralysis, this is 5% of all patients of all ages and with all pre-exiting problems - e.g. someone of 85 with diabetes and heart disease is in those figures too. You are a completely different kettle of fish.

Bigfishes · 13/02/2025 19:49

DH had spinal surgery last year. Screws, rods and fusion. He had exhausted all other options, including steroid injections. It was painful. Took a good two months to get back up and pain free, but it was the best thing and he’s great now. Which area are you and who is your surgeon?

Adeleharry · 13/02/2025 20:16

Hey

thank you for your replies.

so if I had of had surgery it would have been an acdf but because my spinal cord is being flattened and there it’s quite a large bone spur it will be a pcdf so basically back of neck fused with discs removed. I’m 43 but my bone age is 62 and due to my steroids my skin is very stretchy apparently and another reason why the surgeons are so worried.
I’m also south Essex but will be having it done at a London hospital as my hospitals don’t do this type of operation.

im just at the end of my tether with either being in pain or out my nut on pain meds there is no in between.

Im also getting married in 7 months, was booked when I was managing with the pain and now it’s the last thing I can think of, I don’t think my OH realises when I say how much pain I’m in I feel like he thinks I use it as an excuse.

OP posts:
Isthisrealomgwow · 13/02/2025 21:27

Oh yeah, no one understands nerve pain until they have had it. It is the worst pain. When mine was at its worst I was hitting my shoulder (where the pin and needles were) with a rolling pin. Hubby thought I'd gone nuts.

If I were having to decide on surgery, even with risk, or a lifetime of pain and worsening of symptoms, I would choose surgery.

I have 2 children, 5 yrs and 6 months. Prior to children I had a spinal cord tumour removed. Post children I had the ACDF. I am currently awaiting an urgent MRI scan with contrast as my lumber is causing issues. If I need surgery again I will take it. Even with the risks.

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