Scared

[Rewe]

Hi there, I'm 38 year old active, fit woman. I've been diagnosed with severe cervical stenosis at c6-7 with radiculopathy. Have had symptoms for 20+ years not realising what it was. Then last summer after having an appendectomy and 3 weeks rest, the pain behind left shoulder blade and in neck flared up so bad, along with pain in arm and pins&needles in left hand i ended up seeing gp in Jan this year. I'm 38, was very fit and active, work as a gardener. Had to take 5 weeks off in summer and then it got v bad again Nov-Jan v bad pain etc. Had MRI Feb which showed severe stenosis due to diffuse disc osteophyte. Had consultation end May and this was awful. It was with a fellow, not a consultant, very over confident and dominating, and he basically spent the whole time trying to scare me off surgery and then told me no surgeon would perform surgery on me. Rather than actually discussing symptoms or giving any advice. I'm frightened because have had neurological symptoms since my teens and am realising is probably caused by this but I haven't been diagnosed with myelopathy - it wasn't even discussed. I didn't even know it was a thing until I Googled my symptoms. I have left sided weakness, left sided headaches, cognitive decline and brain fog (was very noticeable 2017 on) and fine motor skill difficulty with left side but to an observer I look and seem healthy. I've fallen when running lots over the years and always put it down to myweak left side. This is something I've lived with for years and it is only now dawning on me since seeing my mri and realising my symptoms are consistent with pressure on spinal cord... I used to put it down to stress and hoped I would feel better if I ever got on top of stress levels. I'm terrified because I have read that without surgery these neurological symptoms will just keep getting worse.. and I've already felt them worsen especially in the last 10, 5 and 1 year . They haven't asked me about them and it seems to be just the radiculopathy they are bothered about. I asked for a second opinion and the consultant overseeing the fellow agreed to see me but he hasn't got availability until 20 Sept. I don't know if I should carry on gardening (my job) as everything i do at the moment makes my left side feel worse. I used to be able to run 20+ miles but now a gentle jog makes me have to lie down and sleep all afternoon.I have a heavy, tickly feeling all over and by end of day face feels prickly/numb on left side and I feel like mouth isn't working properly when I talk. Also, I have breathing issues in sleep sometimes, notably after appendix surgery last year it was like my body was forgetting to breathe in and I would wake gasping. I've asked GP about this and after questioning she said sounds like a neurological thing rather than obstruction. Has anyone else with stenosis experienced this? I'm paying to see a private neurosurgeon/spinal surgeon next week just for a chat and some advice as I feel so scared and uncertain what to do. (Even though am struggling financially due to being self employed in a manual job and having had several weeks off and unable to work FT). Have been referred for a spinal steroid injection by the fellow for example but have read this isn't always good option for myelopathy. So I hope the private consultant can advise. Any advice or support much appreciated. Thank you xxx

[twice]

Hi, firstly you need to stop gardening and lifting of any kind, i understand the financial impact for you, but you could end up paralysed. The fact that nobody in the medical profession has told you this is disgraceful, but it also doesn't surprise me because so many medical professionals have know knowledge of myelopathy, shocking but true. Please join the myelopathy. Org Facebook group if you can, it's far more active than this page, I can associate with all of your symptoms because I also have myelopathy. The Facebook support group is incredibly helpful and there are so many members pre and post surgery and you will learn so much from there. You have done the right thing going to see a private neurosurgeon, hope you're appointment goes well for you and please join the Facebook group if that's possible.

[Rewe in reply to twice]

Hi there, thank you so much for your reply, and i hope you are doing okay. Thanks for the validation about seeing the private neurosurgeon. It is too expensive really but ... my hunch was to get a second opinion after I had a panic response to the person i saw in consultation, who turned out to be a fellow and not the consultant, which accounts for his over confidence which i recognised as a sign of under-confidence. His agenda the whole meeting was to deter me from surgery - and then he told me no surgeon would operate on me anyway as it is too risky. I am not on FB as have reasons not to be on social media, but will take into consideration what you say. Nobody in the medical profession has even mentioned myelopathy. I only know about it from Googling my symptoms etc and putting two and two together having had an MRI and seen the image and having radiculopathy diagnosed. The radiculopathy is the least of my problems tbh and isnt that bad at the mo. I'm used to being fobbed off by medical professionals after living with endometriosis for many years and only getting a diagnosis last year, so it doesnt surprise me that this is another area where there is systemic incompetence. Thanks again for your advice and i hope you're managing okay at the moment. Best wishes, Ruby

[twice in reply to Rewe]

Hi, ask all the questions you can think of at your appointment, i think you will find that they give you far more information than the hospital will and they will explain in terms you understand. I also went to a private neurosurgeon because I also was only told I had radiculopathy, it wasn't until I ordered a copy of my images that I realised what was actually happening with my neck, its good you done your own research because that's the only way you will find out about this condition and the neurosurgeon will probably tell you the same. I can't have surgery because I have lots of spinal degeneration and surgery will not be of benefit to me and will probably make me worse, i fell down the stairs a few years ago and had a brain injury and it also caused the problems with my spine, I know your appointment is very expensive but it's worth it in the long run. Maybe you could use a different name to join fb , that's what I did because I also hate social media. Lastly don't do any neck exercises if a physiotherapist gives them to you at anytime, not unless they have knowledge of myelopathy. You really have to be your own advocate with this and it's worrying how many people have this condition and don't know it. I will be thinking of you next week .

Take care

Kev

[Rewe in reply to twice]

Hi Kev, thanks for your support, I really appreciate it. And so sorry to hear of what an awful and seemingly traumatic experience you've had in the medical system following your fall. How are you doing these days? Good idea about FB I will consider it. I have experienced medical gaslighting with my endometriosis so am used to it, and have an underlying fear of medical authority after witnessing horrific stuff done to my mum in the mental health system. I will write a list of questions for the neurosurgeon. I've already sent an email overview and asked the private hospital to obtain my mri images from the NHS. I've got the files but I don't know how to share them. Anyway, thanks again for reaching out. I think my spine problem started in childhood, but I have had many sporting accidents involving heavy impact in adult life. Anyway, you take care Kev and thanks again for your kindness and time in writing to me. Ruby x

[Rewe in reply to twice]

Hi Kev, thought i'd let you know how it went today but don't worry about replying. The neurosurgeon said my symptoms cannot be caused by myelopathy. He had my MRI images and said the spinal cord signalling is fine. He said my symptoms sound like a brain problem as they have been going on so long, affect only left side and include headaches which he said can't be caused by myelopathy, so he is getting me referred to his NHS list and sending me for a brain scan. I'm a bit confused and dazed. Relieved he is so sure it isnt myelopathy, though i realise this is always a possibility in the future as stenosis is progressive. Unsure how to proceed work-wise as he said don't restrict any activities and my neck will be fine. I joined the Facebook group, cheers for that. Hope you're doing okay today.. Ruby x