Scoliosos and Spinal Fusion Surgery Help

older01

Hi!

Does anyone know anything about scoliosis and spinal fusion surgery please? I have had scoliosis for most of my life. It’s a condition that can affect areas of the spine usually during the formative years. I was diagnosed in my early teens and regularly monitored. Years later, having grown up without it affected me greatly, it now affects all of my daily life. I am in constant pain and I have limited movement due to the degeneration of the facet joints especially in my neck. I am on the maximum pain relieving medication, and have been told that I am a candidate for spinal fusion surgery.

A panel of surgeons agreed this. However I have been rejected without consultation by two hospital orthopaedic specialists in South Devon. This has never happened to me before and I don’t know if I should ask for an advocate. Is there anyone who could help me with suggestions please 🙏

chiarieds

If you haven't already come across the Scoliosis Support & Research website, they may be able to help you find an appropriate specialist: https://ssr.org.uk/support/

Cantilip

I know huge amounts about these things, but unfortunately I was 13 at the time of surgery so my history is probably not very relevant to you, a propos of which, you don't say how old you are and of course I don't have a clue why they won't operate, but what does occur to me is older bones are more fragile and they might not think your bones up to it. Fusion is what it says it is, bone is fused together and I can see that if the bones are bit crumbly that might not work.. It does seem to me your first port of call should be to get a coherent answer as to why you have been rejected - not clear about the pathways here; you say 'a panel of surgeons', could they or one of them take up your case?

Or ask to be referred to a specialist centre?

Have you been in touch with Scoliosis Support and Research

Scoliosis Support & Research (ssr.org.uk)

I'm talking more than 50 years ago and the operation was much more complex then but what happened to me goes like this.I grew rapidly, towering over my class-mates when I was 9/10/11 My spine began to curve rapidly into a S-bend. Sundry consultants later, I was admitted to the Royal National Orthopaedic Hospital, encased in plaster and stretched to the max extent possible, after which I spent 7 hours on the operating-table having the spine fixed by an alloy rod, such that it looked like this:

After that I was flat in plaster for another 6 months - we had trolleys to zoom about the wards on - then out in the world in an orthopaedic brace for 6 months, then FREE! And upright, more to the point, and fit, went hiking in the Highlands. There has been deterioration but not grossly so - it's other things perplexing my mobility

older01

Hi @chiarieds, can I please thank you for taking the time to answer my question 🙋‍♀️

You have been more helpful than you know in posting the link that I was seeking. I have emailed them tonight, and will probably contact them via phone tomorrow. I was aware of ssr.org.uk and have spoken to them before. They signposted me to the associate of surgeons and I was hopeful of my progress. Unfortunately I don’t hold out much hope living in South Devon. It’s almost like stepping back in time for medical conditions that aren’t the usual thing that they deal with. It’s like an ostrich syndrome 🥹

older01

Hi @Cantilip!

It sounds like we’re not of a dissimilar age or experience of scoliosis.

I also was diagnosed in the early 80’s when things were a lot less advanced than they are today medically. I was under a great professor of the day at Manchester Children’s Hospital. Back bracing was considered, but I opted for the physiotherapy and x-ray route. I remember the weekly intensive physio on roll mats with two physiotherapists like yesterday. Unfortunately for me, although I was told that it could affect my breathing etc in later years I don’t think that I was mature enough to understand the long term implications for my later health. I moved away from the area and tried to put it all behind me. By my 30’s I was on strong pain killers that my body seemed to become addicted to. I have had to gradually increase my level of painkillers and unfortunately I now live in South Devon where scoliosis is unheard of. In November 2023 I had an MRI which showed much nerve impingement due to the degeneration of the facet joints from C4 down to T4. The report said that this would account for my severe pain felt today. A panel of surgeons have agreed that my case should be considered for surgery. That was in March this year. Since then I have been rejected by The RD+E spinal team without consultation. Age does not affect someone’s right to surgery. I do not have osteoporosis or rheumatic disease which is in my favour. My only stumbling block seems to be where I live.

Would you consider an advocate in my instance? I am at a loss as to what to do when patients are unheard and living in constant pain…😬😬❤️

chiarieds

Thank you for your kind comment @older01 - it's really difficult when you need a specialist for your condition but they're nowhere near you; been there in trying to get help for myself & family, but didn't get a tee shirt!

Do hope you get somewhere with this, & kindly let us all know how you get on, thank you.

I know a fair bit about scoliosis, but unlike Cantilip who was able to tell you about his personal experience, mine is from being a long-retired physio….but that's going back a bit too! My best wishes.

older01

@chiarieds you have been a real support!

We would definitely be lost without the physiotherapist! Their role is a vital one in assessing what is deemed as treatable by whatever means, and giving people physical exercises to strengthen the muscles supporting the skeletal structure.

Hopefully one day I will have something positive to tell everyone about this personal experience.

Cantilip

Poor old Devon and Exeter. Trying to think of places slightly near you. I know Bristol is a major centre for Rheumatology, don't know if Orthopaedics any good there.

@chiarieds "unlike Cantilip who was able to tell you about his personal experience"

I'm female. It's a different experience for boys and girls. That experience included standing in front of a full length mirror in my undies pushing my wayward body back into alignment. One breast was and remains for the rest of my life smaller than the other. Because of that, because neither is large, and because part of my 'bust measurement' is my unnatural scapula, I have not worn a bra.

chiarieds

Apologies @Cantilip - I normally say 'their' rather than his/her; unfortunately I slipped up & am sorry.

Cantilip

In real life it might be different, depends on context, but in an internet forum, where revealing any information that might identify you as someone in the real world is forbidden, quite honestly I don't give a monkey's.

Cantilip

@older01 Advocacy. Been wondering how much an advocate needs to understand and where you'd find one. I know perfectly well you live in South Devon not Harrow, but this is the possibly interesting results from the London Borough of Harrow saying what's available there, maybe giving you an idea of where best to go re your local council and charities.

Speaking up for adults with care needs or disabilities – London Borough of Harrow

older01

@Cantilip I have been scouring the NHS and internet ever since I saw your advice. I’m at a loss as to where to start now. The GP surgery has only just made my medical records available to me on the NHS app after I complained to the Devon ICB and NHS England that my records were being withheld without due reason. They have miraculously appeared! I joined the practice in late November last year, and am both shocked and saddened to see that they have recorded my condition and told me that they weren’t aware of my condition or any secondary treatments after my GP had referred me. There is no dialogue recorded, because I took their word that they weren’t aware of anything..??
What would you do in my position?

Cantilip

Have you tried

Service user organisations | Patients4NHS

The Patients Association (patients-association.org.uk)

Scope?

Background stuff

'There's many a slip 'twixt cup and lip' or in other words medical data on computer generally relies on some admin person who might not exist having uploaded it and medical records from elsewhere are dependent on someone having communicated them.

How recent is all this? I am a former medical secretary. Every time a patient is seen a letter is sent to the GP. Which someone has typed and backlogs can be extreme for anything deemed non-urgent, i.e. not matter of life and death.

I appreciate the D+E decision was without consultation. That is potentially a weak spot, though they might have spotted something in the info they had they thought was a definite no.

But somewhere there are records. How did you learn of the decision? From whom?

If not yet a letter then an entry in your hospital notes, if not that, then emails. The decision should have been communicated to your GP. It's worth simply writing to the surgeon and asking for his/her correspondence 'which doesn't seem to have reached my GP', a simple snail-mail letter, Dear Mr X, regarding…. Please would you send me a copy of your letter. What you need to move ahead is the reports from both sets of surgeons, and particularly you need to know the rationale for the rejection of surgery. Once you have these you can show it all to your GP and hopefully he/she will act on it.

older01

@Cantilip I have lived in trust of the National Health system until recent times when they decided (NHS England) that they were so overstretched and at breaking point that patients with chronic illnesses could be downgraded and social prescribers should be employed to dispatch patients elsewhere. I have lived with my pain without much complaint for most of my life, and when I need help I am denied because my life is not in danger. This isn’t the Health Service that I have known all my life, and I don’t think that we should all be accepting of this. My appointments were clearly visible for consultation with surgeons at The RD+E and a privately funded hospital outside of Devon on the NHS app. The initial appointment was cancelled by the surgeon without any reason given, and his medical secretary told me that he could do so without reason and that she was not medically trained to speak on the matter. There was no letter. I spoke to someone from the Devon ICB, and they referred me to the RD+E probably online? It’s very confusing, but I could see the second appointment also scheduled for earlier this month, and I was hopeful.

I checked every day as the appointment was drawing closer, and suddenly it stated that my upcoming appointment was Cancelled. No other appointments have been scheduled. I am absolutely gutted for want of a better word.

You’re right - there must have been some communication somewhere as to why. Someone somewhere knows something about what’s going on, and nobody is being accountable. I just need advice on what to do in order to at least be seen in person. I am writing to The Parliamentary Ombudsman Service after receiving a letter from my GP service. It’s just shocking that people are forced to either roll over or do so.

This is part of the letter from my GP practice letter. Don’t move to Devon!

Cantilip

Go for it! So terribly horrifyingly true what you said. I was born in 1955, so that's 17 governments. Sure, the NHS was not perfect, but something was settled, universally known. If you were ill, you went to your GP. If you were very ill, either the GP did a home-visit or you went to A+E. If the GP was in any way out of his/her depth, s/he referred you to a specialist who saw you within a reasonable time, requested any investigations required and mostly reached a diagnosis. By and large, you got seen and treated and if possible made better. It wasn't an issue.

chiarieds

I'm so sorry for what you're going through @older01 - particularly as the Royal Devon University Healthcare NHS trust on their website says,

'As an NHS England-commissioned Specialised Service we perform paediatric and adolescent scoliosis correction surgery for patients living in Devon and Cornwall while we also operate an adult deformity service.'

https://www.royaldevon.nhs.uk/services/orthopaedics/orthopaedics-eastern-services/spinal/

I had initially thought that perhaps you'd been referred to consultants who unfortunately didn't specialise in scoliosis surgery, but that seems very unlikely. I wouldn't categorically say that you have been rejected by a specialist at the Royal Devon & Exeter (from what you've said) but your appointments have been cancelled, & you don't know why.

Can you ring the Appointment Dept at these hospitals explaining your appointments have been cancelled, & you're wondering when you might be seen?

Appreciating you have already been in communication with one, if not both, of the consultant's secretaries (& agreeing that they couldn't say why the appointments had been cancelled unless it was something such as a clinic had had to be re-arranged) you might ask them to ask their respective consultants to let you know approximately when they anticipate seeing you, & for the secretary to let you know by email if possible.

Without exception over the past 20+ years I've found consultant's secretaries very empathetic, & all have helped me enormously, my most recent example being at the beginning of last year. I'd had a suspected mini-stroke/TIA & was transferred from my local hospital to another. A Dr at the 2nd hospital ordered a MRI & MRA, which were later done at my local hospital.

Not being unduly concerned that I'd actually had a TIA, I waited a few months before ringing my GP's surgery wondering about the results of my MRI & MRA. They had heard nothing, but advised me to ring the hospital that had ordered these. I rang this hospital's switchboard who put me through to the appropriate secretary; she emailed me the results in less than 24 hours! I'd said that I felt my GP's surgery should also know the results of my MRI & MRA, & I could see that she'd copied the same email to them.

This was an instance of 2 hospitals in the same trust not communicating with each other even tho my son & I are under a cardiologist (due to a genetic disorder) at our local hospital, & my GP's surgery only initially having a copy of the 2nd hospital's discharge letter…..lack of communication happens.

I think it's important to stay positive & explore such avenues first, if you don't mind me saying. Also if you communicate with these secretaries, let them know that if there's an appointment cancellation, you'd be willing to be seen at short notice (if this is a possibility). Sort of play it that you anticipate being seen, & see what unfolds first.

older01

@Cantilip I have lived in trust of the National Health system until recent times when they decided (NHS England) that they were so overstretched and at breaking point that patients with chronic illnesses could be downgraded and social prescribers should be employed to dispatch patients elsewhere. I have lived with my pain without much complaint for most of my life, and when I need help I am denied because my life is not in danger. This isn’t the Health Service that I have known all my life, and I don’t think that we should all be accepting of this. My appointments were clearly visible for consultation with surgeons at The RD+E and a privately funded hospital outside of Devon on the NHS app. The initial appointment was cancelled by the surgeon without any reason given, and his medical secretary told me that he could do so without reason and that she was not medically trained to speak on the matter. There was no letter. I spoke to someone from the Devon ICB, and they referred me to the RD+E probably online? It’s very confusing, but I could see the second appointment also scheduled for earlier this month, and I was hopeful.

I checked every day as the appointment was drawing closer, and suddenly it stated that my upcoming appointment was Cancelled. No other appointments have been scheduled. I am absolutely gutted for want of a better word

older01

@Cantilip I have lived in trust of the National Health system until recent times when they decided (NHS England) that they were so overstretched and at breaking point that patients with chronic illnesses could be downgraded and social prescribers should be employed to dispatch patients elsewhere. I have lived with my pain without much complaint for most of my life, and when I need help I am denied because my life is not in danger. This isn’t the Health Service that I have known all my life, and I don’t think that we should all be accepting of this. My appointments were clearly visible for consultation with surgeons at The RD+E and a privately funded hospital outside of Devon on the NHS app. The initial appointment was cancelled by the surgeon without any reason given, and his medical secretary told me that he could do so without reason and that she was not medically trained to speak on the matter. There was no letter. I spoke to someone from the Devon ICB, and they referred me to the RD+E probably online? It’s very confusing, but I could see the second appointment also scheduled for earlier this month, and I was hopeful.

I checked every day as the appointment was drawing closer, and suddenly it stated that my upcoming appointment was Cancelled