Neck /shoulder pain, tingling fingers,... - Cervical Myelopathy

Cervical Myelopathy

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Neck /shoulder pain, tingling fingers, strange headache!

hollyrain profile image
17 Replies

Hope this is the right place to post, I was looking for cervical radiculopathy as that is what my GP loosely suggested I may have.

Sept 2019 I woke suddenly one night with severe burning pain across chest and back and shoulders, tingling to fingers both hands, it was intense. Saw GP - probably pinched nerve, drugs and physio.

Have had the tingling fingers both hands ever since - some days good, some bad where they feel like dead sausages, thick and clumsy and heavy! about 6 weeks ago developed pain across top of shoulders, left side particularly, into left side of neck, top of shoulders, and front of chest. The tingling got worse, the sensation changes was quite significant.

Also developed a strange sensation to back of head, left side, over and above from ear level, feels like a bruise, or when you have a pimple, or if your hair is pinched in a band.....not a headache but a strangeness, and it covers perhaps the size of a £2 coin. There constantly. I have had this before but it disappeared and it wasn't related to any issues with my neck. Had a telephone consultation with GP, his plan was bloods and xray and then he would see with results and examine it then. That will be next week, but I am getting more and more worried about this head sensation. It just doesn't feel like it fits in, but it also appeared the same time so I have no choice to believe it is related. Of course, now I am worrying that it is something really sinister, it remains present when I go to bed, which is actually one time when my neck / shoulders / fingers are at their best.

Has anybody had similar who can reassure me, or have any idea what it is? Thank you

17 Replies
Helen0304 profile image

Hi. Have you had an mri? If not then I would recommend that you contact the gp and ask for one. This will be much more advantage than just an xray to see what is going on. My issue with my arm and hand came on very suddenly although other issues were more gradual. I have got cervical myelopathy.

I would ask your GP to send you for MRI brain and spine scan , GP are not qualified in my view to say it is this or that I had that with my GP who was completely wrong and I told him to send me to s neurologist and he examined me and also did a MRI scan and found I had Cervical myelopathy unfortunately there's no cure after a operation . You sometimes have to stand up for yourself and not be told it could be this or that. Clive X 🤗

Musicmaker65 profile image
Musicmaker65 in reply to

No cure for Cervival Myelopathy after surgery?

hollyrain profile image

Thank you both. I have a terrible fear of MRI since I had one in 2001 on my lower back, I had a huge panic attack, fainted, vomited, was on sedatives for days later. I cannot even think of having one without beginning to panic.

I have drawn pictures from front and back showing the areas affected. Predominantly left side although there are symptoms on the right. I am very serious about getting this looked at properly, I acknowledge my fear of MRI will cause some obstacles, but I won't just let this be chalked off as degenerative or as the last GP said when I mentioned my fingers last year - probably permanent, shrug shoulders.

I hope you are both doing as well as you possibly can.

Helen0304 profile image
Helen0304 in reply to hollyrain

I don't want to scare you but if it is myelopathy you need to get it diagnosed sooner rather than later. I understand the mri worries. It was the first time I had one a couple of months ago to get this diagnosis and I closed my eyes and sang to myself. I told myself that I wouldn't look at the machine before I went in it so that it didn't put me off and then when it was finished I had a look because I knew it was over. Little did I know that I would be diagnosed with this so I will be having to have more at some point in the future! My brother had to have quite a few mri's recently and he can't go in them even with valium but he went into the open one, maybe you have got one of those in your area.

hollyrain profile image

Thank you for your reply Helen, you have both been really helpful. Can I ask how your symptoms started, and how you are now? I have read about myelopathy but I don't know how it progresses. I am going to try to get an appointment with GP next week and push for some pro-active management, I may try to see a different GP though. My pain / discomfort is worse today than it was yesterday, but better than it was 2 days ago. Does it continue to fluctuate?

I looked into open MRIs after I posted and there is one about 25miles away but it is private. Not sure if there are any NHS ones.

Helen0304 profile image
Helen0304 in reply to hollyrain

My brother definitely didn't pay for his mri but I suppose it does depend on the area, we are in Gloucestershire. My initial symptoms were slight pain in my neck and just random episodes of tripping which started about a year ago. I never thought anything of it and put it down to age etc but I'm only 53! Then one day I was washing up and and I suddenly got this intense pain in my little and ring finger of my left hand. My fingers felt like they were on fire. I tried to ignore it thinking that it would go away but it just spread into my hand and up my arm. It was like really bad pins and needles. I then noticed that when I bent forward I had excruciating feeling like an electric shock which went down my arm.

I went to the gp in December and had a nerve conduction study done which came back normal so I just carried on. In March my husband told me to go to the gp again as the pins and needles were getting worse., the gp wanted me to get an mri. I did pay for my normal mri only because I wanted it doing quickly, it was £259 if that helps.

It was only when the mri was done and my gp called me in that he explained that the balance issues and neck pain were all related. I saw a consultant 9 days later via NHS and I couldn't believe it when he said that my spine was compressed and that I need urgent surgery. I am due surgery in 2 weeks time.

In the time that I have waited for my surgery my neck pain has got worse and I get strange feelings going up in my head like tingling. If you ask most surgeons they will say that you don't get symptoms in the head from myelopathy but most of the people on my Facebook groups would disagree with him.

I apologise for the long post but I wanted to explain properly and I don't want to scare you with my post as hopefully you won't need surgery but I just wanted to make sure that you get it checked thoroughly. Please message back if you have any other questions.

hollyrain profile image
hollyrain in reply to Helen0304

Thank you for your reply. I hope your surgery goes well.

I am going to try to get into see a GP this week so I can discuss this further. My symptoms aren't improving nor are they worsening, I've drawn a body map to try to explain it all to him more clearly, as it sounds a bit scratchy otherwise jumping from one sensation / area to another. This morning I have a banging headache but I am thinking it because I didn't drink enough water yesterday.

I will post back when I have seen GP, good luck!

Helen0304 profile image
Helen0304 in reply to hollyrain

Yes that's a good idea. I have found that it is a very difficult thing to explain to somebody else because of so many different things involved so you are better to be armed with as much information as possible. Do let me know what the gp says, good luck. And thank you for your wishes for my op.

hollyrain profile image

Sorry, me again - when I had this (not as severe) earlier in the year, the head was the thing that bugged me most - and I thought it could be occipital neuralgia as it was very much in that spot, and even now it is causing me some issues with the discomfort - it feels like a huge bruise or a big nasty spot to the scalp. Did either of you ever have that mentioned to you? Thank you

Have a pleasant evening!

fp082136 profile image

As others have said, get an MRI. You need an image otherwise everyone is just guessing. This could get really bad really quickly, so you're right to self advocate. Pay the money for an MRI if you need to do it privately, just get the MRI quickly. It's the rest of your life you are talking about. Speaking from experience.

hollyrain profile image
hollyrain in reply to fp082136

Thank you - I am sorry to hear you are speaking from personal experience. I will be trying to get in to my GP this week to get things moving.

Markzga profile image

Look around a see if you can get and open MRI machine... they are not as confining

hollyrain profile image
hollyrain in reply to Markzga

Hello, yes I have found one within reasonable distance and another not so far away it is a no go. I will speak to my GP about this. Thank you

Hi Holly.

Although head & scalp sensations are not associated with radiculopathy as that is usually due to trapped spinal nerve roots supplying your arms, many of our members in the Myelopathy Support group on Facebook report odd sensations from the neck up, me included. Such sensations are not known with Myelopathy either, but if there is compression of the blood & nerve supply to your head, for example when you have your head in certain positions, it is not beyond the realm of possibility - it's just that the researchers haven't yet researched such symptoms sufficiently. Many of our members also report occipital headaches, tinnitus & disturbed vision.

An MRI scan of your head & neck, plus nerve conduction studies & electromyography testing are the only way to know for sure. If you are in the UK, your GP needs to refer you to a neurologist who can request one - and if you have to have a conventional one, you can request a prescription of Lorazepam to take prior to the procedure but you will need someone available to take you home.

As other folk have mentioned - upright open MRI scanners are available, but not all hospital trusts have access to them - I know of 3 - in Manchester, London & Birmingham that some of our members have used via their NHS Trusts. I also know that some folk have paid privately & then taken their results to a private consultant, but I realise not everyone is in a position to afford that.

As other folk have mentioned - MRI is really the only solution as it can show up any disc prolapse that might be causing symptoms. And unfortunately if there is any moderate t severe compression - time is of the essence because you risk losing full function if it's not resolved quickly enough. Ideally 4 - 6 months within start of symptoms is best but because of the pandemic & delays from it can take longer. Too many of the folk in our support group have been left with problems because they weren't diagnosed correctly or quickly enough. Not meaning to scare you but you need to advocate for yourself & ask "Could this be Myelopathy?"

Good luck

Shirley (mod)

hollyrain profile image
hollyrain in reply to

Thank you for that. If I pay privately for an open MRI can the report not then be used by an NHS Neurologist? My anxiety about it is such that not even having a GA on the day would help, I would end up in a terrible state in the run up to it.

I don't get visual disturbances but my eyes sting a little - however I am a hayfever sufferer and wonder if it is that beginning to kick off, and I wear glasses and have started to knit so wonder if it is that? No disturbances.

I will be very clear with GP about my concerns, I have drawn a head, shoulders and back to show the pain sites, and also sensations. They WILL listen to me! Thank you again x

Helen0304 profile image
Helen0304 in reply to hollyrain

Hi. Just to say that when I paid for my mri it was available for the NHS to see it. The report got sent to my gp who requested the mri.

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