Anybody suffering from cervical myelopathy
Cervical myelopathy: Anybody suffering... - Cervical Myelopathy
Cervical myelopathy
330 Replies
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Yes there are lots of us at myelopathy support with information at myelopathy.org I blog at My Hell Opathy and vlog at MYeloPATHy. All the best
• in reply togertrudetkitty
Hi this problem affects your life in every way, from being a very active person in the past from long cycling rides and walking for miles to doing really nothing, I feel for everybody who has this, I been feeling very depressed crying shouting and really don’t know what to do if someone can advise me, I’m feeling very lonely to
Hi have you had surgery
This is what they told me if I didn’t have my op it would 100 % get worse which would put me in a wheelchair so I did have and now I have to wait for 12-18 mths for the recovery now to see what I’m left with, they said it’s a 50/50 chance I could stay the same, but the aim of surgery is to stop the progression but it didn’t stop it in 2016 so I’m not to sure even after this
It is so wrong I tryed to have a little walk the other day well the next day I had to have help to get out of bed, so you are right in what you say, I do try and move but it’s no good with the suffering after, and I have a 10 yr old so who is into football who ask me to play with him which is heartbreaking when I cannot do this
• in reply to
I was also told by the Walton centre to try and pace my activities slightly, what does this mean
That’s what everybody says to me, are you not as bad if you don’t do as much, I’m a cleaner but currently still on the sick, does it effect your brain didn’t know this, so in away do you think it’s abit like ms
So really there is no cure, why do they operate I have read on here where people have had a few operations due to cord compression when operating is suppose to halt compression
I asked my consultant has Warrington done something and all I get from my consultant is sorry we cannot comment, so don’t know what that means, and not telling me a lot really, what symptoms are you having if you don’t mind me asking
• in reply to
And yes there is someone always worst of than me
You do have a lot of symptoms, is everyday the same or is everyday different
Mine can be different can have really bad days then bit better
Hi Thankyou so much for offering to give me your contact, but for now are we ok just to speak through here if that’s ok, that would help me alot
Thankyou so much
• in reply to
Sorry I don’t know if I’m speaking to a female or male
Haha I know now thanks
Thaks
• in reply to
Hi Clive could you tell me if you understand this pls, secondary progressive myelopathy I really don’t understand the secondary part
• in reply to
Secondary to progressive myelopathy it is
C4-T2 laminectomy with C4-C7 instrumented fusion it was a letter that the Walton centre wrote to my dr saying as you are aware this lady underwent this surgery July 2018 secondary to progressive myelopathy, Thanks Tracey
That does make sense but I don’t understand the part where it says secondary to progressive myelopathy would you know what that means, my surgeon was mr Wilby I had the acdf surgery in the front of my neck in 2016 and I had this posterior laminectomy July this year, they mentioned physio which Iam no keen because it had never helped me at all, I’ve not noticed any improvement
• in reply to
Hi there
The "secondary to progressive myelopathy " part just means that you had surgery because of progressive myelopathy. It's just the way that neurodocs tend to word things. If you had a cancer diagnosis it would meant the cancer had spread but in this situation it is nothing to be alarmed about, it's just a phrase they use.
Hope this helps
Shirley (mod)
Think it was late 2014 or early 2015, they thought it was carpal tunnel syndrome so I had both my hands operated on and yes I did have symptoms before 2016
• in reply to
On my ct myelogram report it said I had continuing right sided hemi cord compression that scan was done in June this year at the c5/c6 level where I had disc replacement surgery in 2016 I’m assuming, I know I’m making you work 🤣
• in reply to
Tracey did they not remove the discs and put cage in or just fused them mine was talking out and cage put in as well as having cord compression
• in reply to
Hold let me look in my notes 🤣 be back soon
First op was disc replacement and plate and fused
• in reply to
They do know how to cover themselves
I had 3 disc removed and 2 artificial disc in and the 3rd one was plated and fuse these was done at Warrington, I been of work this time since May this year but over the couple of years I have had loads of time of due to this, so you have got problems with your lumber to or is it coming from your neck
Yes my legs do feel like that I have pain tingling in legs pain and tingling in hands and I do have twitching sometimes and muscle cramp pain not all the time, hopefully I want to get back how I was but I was told I will never get back to how I was
• in reply to
Ave you spoken to anyone else on here
You been through it haven’t you, I have had a couple of replies, you may get some on here
Hi Clive it’s something I wouldn’t like, forgot to mention I have a lot of saddle pin and needles and this has not changed either since my op, it’s been really bad today
Today has been a bit of a freightening day for me today with the pins and needles and the electric shocks going down into my fingers plus feeling light headed, can it affect your chest
It’s not nice is it, when you say your legs get restless do you mean like restless leg syndrome
Yes there is a thing called restless leg syndrome, pregablin they have only just started me on this, does this work
Brilliant thankyou
Thanks for the number, speak soon
Hi Clive think I meant pls as in please
Yes I go back in January to see them at the Walton centre
Know they didn’t say, so I will see how I go on my go did get me an earlier appointment with them last month, I don’t think there is a lot they can do until they wait for the recovery of this op which is 12-18 mths,surely by now if it was going to get better I would of seen some signs by now being it’s nearly 4 mths post op
They said I did have carpal tunnel but still had problems with my neck so must of been both
• in reply to
Do you reckon this problem still could get worse even with having surgery
Yes that’s what they told me at Warrington I was young to have this, they did say I had a narrowing spinal canal which could of been from birth
• in reply to
Clive if you don’t mind me asking your age
Yep done, yes that’s what they told me at Warrington
Yes I will do I am 48
And that is very true
My fingers felt ok, what do you mean retention
Mine was fine they were scanning me all through the night with bladder
Yes I do
They haven’t put me on anything else yet
My fault not drs I was trying to manage without being hooked on tablets
Yes it does affect the whole family, it’s not a fault of yours your on benefit it’s a health problem
Hi 2 carpal tunnel surgery’s and 2 neck surgerys
Depending the out come of recovery from my neck, still may need an operation on my lumber yet, no I don’t wear of splints my hands and arms are always hurting and pins and needles, I work part time
I have yes, but he has said he won’t look into doing anything with my lumber until I have recovered from my neck,I have cyst at the T12/L1 level in the nerve root foramina billiterally, and at the L5/s1 combination of disc bulge and degenerative changes in the facet joints causing moderate narrowing of the nerve root for mania billiterally, the degenerative changes in the facet joints are more marked on the right side and the existing nerve root is probably being impinged, mild disc buldges at multiple levels in thoriac causing minor indentation of my cord, and that’s my lumber report
• in reply to
Not sure about work yet, and yes they do help me
It’s like you say really in a way you have to cope, he won’t discuss what’s going to happen so god knows what it means, I haven’t yet know
He won’t discuss it with me, which in away I understand and another way they shouldn’t do that
I have tried asking they won’t discuss the results with me, the reason I know that on my report is because I took a picture of my report when I was in hospital and showed it to my gp I cannot understand why they haven’t told me about my report, all they keep saying is they need to concentrate for now on my cervical spine, very strange I’m finding all this, my gp is very good and she cannot understand why they haven’t discussed my lumber with me, went to see her the other day and she is phoning them
I was transferred to the Walton centre from Warrington because they cancelled all spinal procedures at Warrington, feels like there not telling me something and when I do go back it will be the specialist nurse I’m seeing again
Well she said when I went the specialist nurse could not acsess my scan report which I thought was strange, it doesn’t say on the report if there outside or not, she can’t and didn’t answer anything
Do you get a lot of support from your family
That’s good
I don’t get any feeling like that, in winter pain gets worse, I cannot keep my legs still
If my arms are above my head that makes my pins and needles a lot worse raising my arms
Probably slot of people don’t know that this site is here, think in time you will, I not heard from many
Not to bad, Warrington cancelled all operation with everyone and they are still cancelled there not allowed to see any patients at all
I really don’t know Clive but today had a very painful muscle spasm in left arm
Mine started with my walking then neck pain crunching etc
My left arm as always been the worst than right but never had muscle cramp in arm always been in legs and I’m right handed
When I’m lying down I get the calf spasms, few times a week but that was the first in my arm
The first op on my neck was meant to be a success then I had to have this one done again
C4/5 c5/6 c6/7
I did and yes that was at Warrington
Still compression o my spinal cord
In the same place as previous but I had bone spurs to which I think should of been removed in the first place that seems to be that they wasn’t
Right sided hemi cord compression is what the Walton centre told me
He said he has taken the pressure of but this is what I mean Warrington said this and still the same well I fact worse, mr Wilby did say it’s 50/50 so I really don’t know, and I don’t know when I’m seeing him again when I go back it’s with the specialist nurse
• in reply to
From the beginning at Warrington hospital my husband said to the specialist could it be ms but they were having really none of it just really ignoring what I was saying, because ms and cervical myelopathy are pretty much similar symptoms
Nope not had a brain scan
Oh I am doing this as been going on far to long now
The weather does make things worse
Yes I do more the twitching
Oh and pressure in my head upon standing which it’s not to do with getting up quickly because I cannot, the dr said that be coming from my neck
It would be nice if there was a consultant on here that mayb could give advice
Yep they do, yes not long now, I must start buying presents
🤣just wanted a change
• in reply to
It was babylo not Babylon 😄
Yes the pubs and needles in my head so I don’t know, I have read up on it been doing a little research
No, sometimes there not to good
I agree with you we no our limits our body’s let’s us know, climbing stairs is horrific for me it’s like having weights on my legs when lifting them up stairs
Hi, oh dear that is not good, what’s going to happen because it’s been hacked
Nope everything is the same before the operation so nothing has changed, I was meant to stay in a few days but they let me go home day after the operation, I was I horrific pain with muscle spasms could not put my arms down by my side I was walking around like I was a boxer because it was to painful to put my arms down
They said they wait 12/18 mths for recovery, yes I’m under mr Wilby at the Walton centre he is my specialist
🤣🤣Thankyou, and vise Versa
Woke up with electric shocks in my fingers this morning
I will give that a go anyone who comes near me gets electric shock 🤣
My legs and feet can go freezing then they can feel like there boiling, weird sensation
Yep very true
Hi Clive I went for a little walk yday, wasn’t to bad, I was very stiff this morning because they have only started me on the pregablin maybe that’s helping a bit but all the tingling is still there with the electric shocks, I will let you know what she says tomorrow, how have you been
Hi yes that’s what I must of done today, I’m on pregablin, fluoxetine and ramapril, does the pregablin lift your mood to
Thank you, I have told her how I feel and she has put me on 40mg fluoxetine and 75 mg for pregablin twice a day to start me off to see how I get on then she wants me to go and speak to someone which I will be doing
See how it goes, just want to get my activities back
It’s because I am very impatient I think
That is very true😂
😂mine starts with pain in arms and neck, weakness in left arm, tingling, electric shocks, bladder and bowel urgency on and off, gait problems to, that’s the end of my shopping list 😂
• in reply to
Twitching and muscle cramps
Oh dear, not good
Hi she said she has been phoning the specialist but not been able to get through, she said she is phoning again before I go to see her in 2 weeks, she is not upping the pregablin until another 2 weeks and she has put me on morphine now to which that does help, it is a lot of money can you not get your prescriptions free with being on benefit, I pay 10.40 a month
Oh that’s not to bad, oral morphine she has given me
Yep I know it is, but it helps
Oh that’s interesting, don’t really understand it
Do in the end it would cause more problems with pressure
• in reply to
I have just been reading up on that, what is the point in having fusion when in the long run it will cause more problems
Yep 😂the Frankenstein look might end up being in fashion
Moving ??
• in reply to
I need to speak to this woman can you add me to your chats at all
How do I message her
• in reply to
Hi Traypod nice to meet you, I am Donna7 Longsiders friend, can I help you in anyway? I have been reading your suffering & questionings. I may not have any answers for you. Though I do care so much, & I will support you how ever I can!
Love & Hugs!
Donna7 xo 
I always have the crunch in my neck before surgery and after, do you know why it does this
Oh I see well don’t know why my are like that still they been removed in my neck so I have a lot of metal work instead of vertebrates
There is people on benefits that don’t need it and you do so your not a scrounger, what benefit would I be entitled to if I couldn’t go back work if you know
Oh what’s the esa
Even though my husband works
Hi Clive no I don’t suffer with that
• in reply to
I have a thread if you would like to come across Traypod ,or we can talk here, what ever suits you ok
Love & Hugs!
Donna7 xo
• in reply to
Hi Donna it’s nice to speak to you, I’m not on Facebook,don’t know what the thread is 😂
Hi Clive she did thank you, think I have got the flu or something
Here is a web site that I found to be very helpful, I hope you find some answers & help there!
Love & Hugs!
Donna7 xo
webmd.com/pain-management/g...
• in reply to
Thank you, do you suffer from cervical myelopathy to Donna
No no I didn’t you have to pay don’t you
I did & I had a Miracle & was healed after I had the obstruction lifted off my spinal Cord. In an 8 hour Emergency Operation, which I had in the recent past.
I had both my hands go frozen, just like I had them in the freezer, and also like I were touching broken glass, on a 24 hrs basis, for about 8-10 months. I had to wear 2 pair of warm gloves on each hand to be able to use them, & handle the pain. I had tests done to see if I had Carpel Tunnel. It was found by the Neurologist that I had something wrong in my neck, & advised that I have an MRI immediately.
My GP ordered the MRI, when results were found, I was rushed to the Neurosurgeon. He gave me the shocking frightening news that sent me into a spin, that if I did not have surgery immediately, that I would be Paralysed from the neck down. I was still given no hope of success even if I had the surgery, yet my Neurosurgeon was willing to operate for me. Once I agreed I was operated on within 2 months from first seeing the Surgeon. On the operating table the surgical staff were stunned, as they watched as my damaged spinal cord went back to normal colour, & pulsated normally in front of their eyes. Once the obstruction was removed from my spine. I had bone & muscle grafts , rods & screws inserted, I do not have any pain, & can move my head normally without stiffness, or restriction. I have no nerve damage, & I am strong & have energy. I do have Osteoarthritis, in the parts of my body that were damaged, due to the fall I had over 20 yrs ago. This is why I have chronic pain, now. My hands went back to normal, & I do not have Carpel Tunnel, it was the Myelopathy that I had, which was cutting off my circulation at that time, which caused the agony I suffered.
Miracles do happen, so don't give up! xo
I am not going to read it back as it's 2:24 AM here. I came back on line to talk to you & give you that link which I found tonite.
I will go for now & respond to your messages in the day time.
Love & Hugs!
Donna7 xo
• in reply to
Awwww so you have been through it to, it’s nice to speak to other people who knows what you are going through, did your pain stop after having the symptoms x
Oh I will ask them for that,oh right I will remember that
My legs last night they felt as though they were like ice and the pain in them was bad x
I have tingling in my head and face cheeks, that is terrible poor man is he paralysed from waist down or neck
Yes I was very active cycling and walking, I haven’t got an exercise bike but was thinking of getting one I have also started a diet I put on the weight
I am doing 😂
I Clive yes I did have twitching in my eyes I mentioned this to the consultant and don’t think he was convinced it was to do with myelopathy, yes I think I have done now, feel a lot better today
• in reply to
Mayb it was the flu just been reading because I have gone on this low carb diet it could of been to do with that
Isn’t it strange all these symptoms we get but they cannot understand
Mayb not the age I’m like that I could be on about something or wanting to say something then I go completely blank
Bet the Xmas market is good I have never been, oh 4 pound weight loss this week
Nope I haven’t, have you tried it
I think that would helped, those pregablin seem to be helping the sciatica type pain but still have weakness when lifting my left arm up and tingling
😂😂I struggle pegging washing out
😂😂very true, he does help
Oh really why would someone do that, but you are right you have to be on your guard , the reason why I came on here because it’s helps to speak to other people in the same situation, still have a bad cough think it mayb chest infection but not sure
I don’t think there is a cure for myelopathy, so just be on your guard when speaking to anyone because I am, yes first one, I have never suffered from chest infection, oh I mentioned do I get the flu jab because I have myelopathy they said know
• in reply to
Who was the lady who accused you
Oh dear I don’t know what the hell im doing on here, but I am not stalking you so don’t think that ha
What’s happened is didn’t have my glasses on
I need glasses for reading and writing aand suppose to wear a pair all day everyday,I got a message of Donna I’m not sure if she was from America
Yes I have both after eating why
Yes I agree I think it’s down to the nerves because it affects the bowls and bladder so I do know how they can say it’s not
My bladder was ok I was peeing ok
I go see her next week
Hi Clive I’m not to bad thanks, tomorrow I go drs, how you
Hi sorry yes I did forgot to message you back, thanks I went to drs and she up my tablets
Pregablin she has put up
I cannot swim, and she has offered physio but I refused because I been a few Times and I don’t it helpful at all
Yes they did X-ray in October, I think they will just leave it now, don’t think there is much more they can do he has not said that but that’s what I just think
Do you use a walking stick or can you manage without
Sorry Clive didn’t quiet understand your message
No I’m ok at the moment but I have used a Zimmer frame when it gets bad, oh I don’t know about that disease is that what you can get
Oh that doesn’t sound good, yes I have used one honestly
Before the op, but my pain can stop me from walking x
Yes very the dr has signed me off to February
Oh gosh never heard of that at all
• in reply to
Try not to worry
Hi I’m struggling today with walking had to have the morphine, I’m not sure I been ok I think
Yes over done things, couldn’t get out of bed it was that bad
Yes I did but they did tell me not to over do it than I thought oh I’m having a good day so you push yourself and this is what happens, my own fault
Thankyou, and if you need to talk, get intouch
Hi Clive had a bad night last night waking up with pins and needles in arm and pain again with stuffiness and I haven’t over done anything so morphine again, how are you doing
Hopefully your results come back ok, might come out of this bag like new people 😂
I hope my name is at the top of this queue well after yourself of course, cannot wait until I go in January to see them
It is, how would I send you a pic of my neck on here when I had it done Clive do you know
It is how do I send you a pic of my neck after my op on here
Looks ok but sore
Oh why is that, that’s strange isn’t it 😂
Electric shocks I’m getting into my fingers do not know why this is happening
No the first op was front of neck and the last op was from back off neck, my hair covers the back of my knock because it’s long 😂
• in reply to
Back of my neck I mean
Yes it feels like from elbow to ends of fingers electric shocks tingly
My left arm has always been the worst one
But I thought they release pressure on the nerves, when I wake up with the pain and tingling I always wake up on my back do not leaning on side, oh that’s bad sometimes my legs and feet feel really cold then I have to sit with covers on them and then still cold
How does your wife cope to, do you have any children
Oh dear, my daughter still lives at home at 21 but saying that I don’t want her to move out😂, I’ve tryed putting a different picture on there but I don’t know what to do on here😂, have you been speaker to anyone new on here, yes prob be bull crap of them but there not fobbing me off at the end of the day we are the ones who are suffering not them
I have a 2 daughters one is 21 and one is 26 and my son is 10 who can be a pain 😂
• in reply to
He needs to have that wisdom tooth out
Awwww I will leave it then 😂😂only joking I will change it x
It was a blue planet aquarium
Yes I got my tree up a real one this year but I got loads of wrapping to do x
I know ha, as and when for the morphine she said x
View on what sorry
If used the right way it seems to help people in pain
Not don’t think I did get it, I been trying to fit in but it’s being a pain, and yes all wrapped now
It’s very strange your messages are getting deleted I think
I do but I think they are migraines I get, but my bladder not good though, constantly weeing
So your bladder and bowel are to do with myelopathy
My bladder has gone worse, not making it to the toilet sometimes, I still need answers of them to whether I will recover or not but they say 12-18 mths before they no and I was spascity below elbow down they said
• in reply to
Yes we do
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Yes mine to are like that, not much sleep again with pain
Before July last year
My bladder seemed to be ok in 2016 but it was when I needed to be seen again at Warrington which I didn’t get the appointment so go transferred over to the Walton centre end of last year but had to wait for appointment which was January this year, and they asked me about bladder and bowel and I said I have this urgency and sometimes can’t wait to get to the toilet
Oh it’s messed up again ha
We will see proffessor Clive 😂 I could go empty bladder then need to go again feeling like my bladder is full again at night 2 or 3 times sometimes
Nope it can be anytime I could do some times 4 or 5 times a day
And you do help Thankyou
Am I I didn’t no I was popular on here
• in reply to
I have weakness in my left arm and if I hold something to long then my finger locks up my little finger
That pic on here is my neck but you can’t see it all
Struggling with what
Oh yes, they don’t know how to do it either
😂
Arrrr what a shame
Have you got morphine to take it helps me
Oh right, that can cause many things can’t it
Yes I only do the myelopathy may try the pain post, I don’t do Facebook ether
I will do but it depends if they listen
I’m always tired fall a sleep all the time god knows why, no I didn’t get intouch with them do you have to be referred to them from drs
I will can you give the number again please, what are the there for
Thanks I will have a look now
Hi its a pain isn’t it pain in neck😂, what I would say is lying down helps me because there’s no weight on your neck then or a warm padded thing that you can put around your neck, hope that helps
How are you now
This is how I go I feel like I’m getting better than bang hits me again all pain, best just resting really for it to pass
I have to go food shopping yet all presents wrapped and delivered, I know what you mean I was told I will never be like I used to be
I think I breath through stomach to, not thought about before
Just comes and goes, but those spasms are very painful does that happen to you, I do a bit but more with opening jars and small wrappers
I do get spasms in calf’s to when I’m in bed, I just don’t ask for anything clive
• in reply to
My muscles in my arms hurt a lot as though I have done some sort of exercise or something, does that happen to you
Hi Clive I’m not sure think I saw something but didn’t read it now it’s gone
It’s horrible when you cannot get sleep, I was waken up by could not feel my finger it’s a horrible feeling, poor man does he have help, well I’m assuming he does, and football bores me ha
And I got to go yet to to food shop, my husband is taking to Chester Xmas tomorrow want to see it all lit up ha
Yeh I just wanted to see those lights really, yes I will be ok we’re going later on so I won’t be on my feet to long and I know when I’ve had enough
Not yet I’ve had a look on website I will give them a phone after Xmas, I haven’t thought about applying because everyday can be different for me sometimes I can have bad and good days so how do I get passed that with them when they are very strict
I just got back from doing my food shop and was not packed at all,that’s why I left it to late ha
I know it is a horrible situation to be in I have all my medical notes here anyway to back me up and I’m sure gp will as well, Marks & Spencer no queue at all
Yes you need to be a member don’t you, I’m looking forward for Chester market tomorrow
Yes Speke I think, it’s meant to be really good
Yes my daughters works for Chester hospital so I will look into that thanks, and I will mention to the dr for underwear thanks for that to, least it’s not raining today
• in reply to
You still need to rest if your having pain it’s your body telling you your doing to much
Hi Clive felt it this morning but it was worth it thanks, and I wish you and all your family merry Xmas and happy new year to x🎅🏻
Well since I had my surgery in July nothing has changed at all, weakness in arms
Hi Traypod
I understand your sense of frustrations, but it's still early days recovery wise for you - in can take up to 18 months to 2 years to see any improvements, if there are any to be made. You asked earlier what's the point in having surgery if it can get worse further down the line. It's a good question. The thing with myelopathy is that if it's not treated & left to progress, you will potentially end up quadriplegic i.e. paralysed from the neck down. And that is why they tend to operate. But as you will have read, there are no guarantees about the recovery from surgery as it depends on so many things, such as how long you have had spinal cord compression for - the ideal is to be operated on between 4 7 6 months of symptoms developing. But because myelopathy is not well know & often misdiagnosed - although myelopathy.org are working on that, no one can be sure of when their symptoms first started at times & the NHS waiting lists are long, the time the neurosurgeons get to see us, quite often it's too late to save the spine, especially as we already have a shortage of neurosurgeons in the UK already.
As regarding bowels & bladder issues. myelopathy can cause problems with that too - I used to have urge incontinence re bladder & occasionally bowels. Now I take duloxetine - the urge incontinence has subsided but I end up with really bad constipation. Swings & roundabouts with this condition, unfortunately.
KInd regards
Shirley (mod)
• in reply to
Hi Shirley, thanks for your reply, so even after surgery is there a chance it could still progress or not
• in reply to
Hi Traypod. For some people, yes it can, for others - no it doesn't. The problem is not knowing if it will. I myself had surgery over 6 years ago after a rapid deterioration for 5 months starting with carpal tunnel syndrome type pain in my left hand to loss of balance falls & difficulty climbing hills & stairs. Whilst my op C6/C7 ACDF didn't reverse my symptoms apart from the left sided radiculopathy which improved immediately, about 2 years ago I started with increasing radiculopathy pain down my right arm. Turns out on mri scan that it's getting a bit tight inside & I have osteophytes developing at C5/C6 level. At the mo I take duloxetine to manage the pain which works for me. But if it increases if my walking & balance go off from my "new normal" I will be going back for a neurobod opinion. In the meantime, I carry on with life as best I can. I don't take unnecessary risks, but I don't wrap myself in cotton wool either. I reckon that if I can slip a disc & develop myelopathy as a consequence of stretching whilst sat on the loo, a place you would think is safe, then it can happen anywhere. So I keep as active as I can & don't let it get me down. I've even crashed my car in the meantime (not deliberately!) & shut the car boot on my head too many times to count & I'm still ok. That said I have had to have meds & counselling initially to accept my lot, so I'm in a good place these days. So it may but it may not. Not the ideal answer, I realise, but it is what it is as we are all so similar but yet so different.😊
Shirley
• in reply to
Thanks for replying back Shirley I go see the specialist nurse in a couple of weeks I prefer to see the consultant himself but that probably not going to happen my arms hurt feel week to I have a list of symptoms for them
Overdone the eating 😂how was your Xmas
My neck and back is killing me, she messaged me the other day, what is she on here because she seems to know her stuff
It sounds like it but I’m not sure, you may need to go to your dr for advice
It is not being paranoid we know our bodies and what’s not right let them put up with this then they would know our everyday problems,14th January let’s see what they have to say because I have my list
I want to know there honest answer surely if I was going to improve I would of started showin signs which I not
I know it’s early days but no benefit at all and he did say 50/50
I think mine is to late to bring it has been going on for about 3 yrs
• in reply to
Have they said to you it’s to late and that you will get worse even after having surgery
It’s freightening isn’t it what could happen, have they told you you will need further surgery
Oh I see, I keep changing it
If anything my arms are worst which I need to speak to them about it and everything else is the sane
• in reply to
I have good and bad days with mobility, if I was you see your gp about that it’s not good
Go are not the ones really who no about this condition really I remember when I had my surgery they said any problems when you go home do not go back to see the gp come straight back to the Walton centre because they won’t know, had to have morphine again to help me this morning pain was really bad, I really don’t understand why it’s getting bad
• in reply to
If my message doesn’t make sense I do apologise it’s the morphine it makes me dopey
Ha the morphine is good for me
I take pregablin but reluctant to take anything else, yes twitching in legs and back and tingling everywhere
I’m not sure if I did, it’s always getting messed up on here
I’m following someone else it’s called severe pain in my lower spine why don’t you go on that you may beable to help them to
That wasn’t nice what you went through
Hi Clive even in so much pain, we not doing anything we been invited out but don’t think I be going, are you doing anything x
How have you been
Awwww that’s sad isn’t, yes my legs get very week to, pain clinic nah don’t fancy that either I really don’t think they know what to do with us really because we have so many symptoms, this morning again my husband at to get me out of bad the pain was that bad tears was streaming down my face it was that bad and I will be telling them this, when do you go see your specialist again
Yes it’s so painful lying on side can still be the same really
Morphine is good but don’t want to rely on it
Happy new year Clive to you and all your family, let’s hope x
Oh dear I’m not to bad today but it’s a vicious circle isn’t it
Yes Shirley Did get intouch, my left arm is going into painful muscle spasms where my wrist bends and cannot straighten it does this happen to you clive
Hi Clive yes my left side is worse and I have wrote this down on my list, why does this happen ive noticed it is getting worse my left arm is weaker than right but my right leg is weaker than left mayb because I have different issues going on
My thighs twitch more than my calf’s, I only have a shower
Yes and my hands shake to my memory can just freeze if you not what I mean like brain fog I think
Yes my eye twitches to,and yes conversation or when I was going to text something then gone couldn’t think, over 10 yrs ago I had bells palsy which affected my left side face drooped I was luck because I had my face back to normal and now all this affecting my nerves now
How I see it Clive there is a lot of people worse of that me really even though i find it hard, your wife and you have been through a lot to
That’s terrible isn’t it your wife must be a strong woman
Struggle this morning, they put me on steroids for that then I had my face against a warm oven that’s what people was saying to get heat on it, it seem to work because I know that some people can be left permanent with it
I go to see them a week on Monday so I will mention it to them, I’ve not notice anything
Yes I will, what that phone number again pkease
Yes that one Thankyou
• in reply to
Can anyone phone up
I did speak with them they said I need to be telling the consultant what is going on
Nope I havent
I spoke to them and she said to make a list and let them see it, no I haven’t I go see his specialist nurse week on monday
She said to write everything down and show them when I go, nope not seen him at all since my op
I didn’t see him but the recovery nurse said he came to see me I must of been out of it
They must of made sure I was well out of it, when I got on the ward I did throw up with the ketamine they give me
😂yes I had to drink plenty to but I had no problem weeing
It’s bone
Yes I can drive
Yep I have just got a blue badge and I got pip but standard rate
• in reply to
I don’t know what else I am entitled to I have just sent of my award letter to get half my car tax back
Because when I went I was lipping but wasn’t as bad as my worst day they watched me and that’s what they said, saying the lady who interviewed me said your medical notes alone entitles you to pip but we have to call you in, how can you get ESA if my husband works
Oh right I didn’t know this, thanks Clive
I don’t walk with a stick so how can I take a stick I’m always limping though
• in reply to
The thing is we are genuine people who have a serious problem and you still feel as though they are judging you
I had to use next door neighbours Zimmer frame when I couldn’t walk and told them at the Walton centre to, it is a joke they only see you once and they don’t know nothing about you
Yes and your right it is wrong think my gp thinks I should of got the higher rate but I get it TIL 2020 for now
Yes that’s me to and I will
I hope you do though
Why do I feel I’m getting worse if I might get better and have shown know sign of recovering
Do you think I will get better honest opinion
• in reply to
The muscles In my left arm hurt it’s like I have lifted weights and I haven’t
Not at all I prefer to know what the future holds for me and I want them to be honest with me, I was moved from Warrington to the Walton because Warrington was stopped from doing spine surgery and seeing any patient think it’s still the same and the Walton picked this up
Do you get a vibration feeling in the legs
Tremors in your hands do you mean I do and jerkin, does the tablets not help your tingling
What happens when you put your arms above your head
What’s child tax credit does that go by earnings
• in reply to
My arms feel very heavy and bad tingling when I lift them up
Ok tell her I said Thankyou
Hi Clive would you like my mobile number because we been in touch for a while now
I did thankyou
Hi Clive the one on my front of my neck is not as big as the scar on the back, yes my hair does cover it thankfully
😂😂I just think they got carried away only joking, yes it has healed fine
Yes and still don’t think they can still see any spinal patients, I would like to know why I ended up having to op on my neck I kept telling Warrington I was in pain which I was told by the dr there he said he couldn’t understand why I was in pain for what was showing on scan, when you tell them they don’t listen we know our own bodies than them, had to crawl up stairs on hands and knees today could not stand all electric shock cross my back
Yes the Walton centre did another scan and showed us the scan and said he was not happy to leave me because his words was it will 100% get worse so I knew what he meant
Yes it did get worse and I was telling Warrington this, when I was moved over to the Walton centre the first person I saw was the physiotherapist practitioner there who did the scan then I had to see mr Wilby for results that’s when he said I needed another op
Yes I think they messed up to which I asked Walton centre and they said sorry we cannot comment on that and yes Walton centre did X-ray day after surgery
Oh don’t understand that
Hi Tracey, is it next Monday you go to Walton , hope you have a long list and hope you get some answers I can't work out why you have a scar so big at back , did they cut your hair . I deleted messages thinking my tablet would speed up 😁 takes ages bloody slow like me 🙃
• in reply to
Yes I do and yes I have my list they operated from c4-T2 laminectomy and yes they had to shave my hair
Hi t how's things it's been 5 months since I was on here my condition as got slot worse had mri scan going back to Walton to discuss
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