Well I never

[Angelicscripts6]

Discs gone in neck from C2 3 4 5 6 and 7 with bilateral stenosis at c3 4 ŕight side foramen and bilateral stenosis at C4 5 left side foramen....symptoms have been going on for years!

Have been over the years diagnosed with Raynards ME urge/stress incontinence carpal tunnel syndrome (operation to release didn't work in right wrist so didn't have the other done)

Flip flop right foot walk as if on clouds numb feet legs heavy....

Osteoarthritis plus osteoporosis left hip needs replacing but over last couple years I have had 2 episodes of paralysis right side went 1st then this time last year left side but thought I was having heart attack ....doctor sent for CT scan and low and behold this is how it was discovered!

Having read some of your journeys to get a diagnosis plus we all seem to have similarities in symptoms.....

Bladder went about 10 years ago but due to having a subarachnoid cyst on brain Urologist put it down to

One of the 1st things that go when problems stem from brain is signals ( messages sent to bladder)

However this doesnt explain the rest of what's been going on...

Swallowing difficulties clumsy hands pain is a nightmare

Blurred vision headaches to a point feels like brain is been shrink wrapped

Taking deep breaths difficult

Walk has if drunk been counting in head for years 1 2 1 2 make sure I pick my feet up literally wading through treacle comes to mind 😉

I can feel my neck slowly disappearing into shoulders hmmm

No neck Julie comes to mind 😯

Plus lots of other symptoms along the way it's a good job I have a bizarre sense of humor ! It's taken away my former life and left me with this which I am still coming to terms with.....

See spinal surgeon on 14th this month so will know what the next steps are

Just thought I'd share my journey with you all

[Emma2017]

Wow, that sounds quite a lot to cope with. I hope your spinal surgeon is able to help you in some way.

All my problems are in my lumbar region so the other side of the spine so cannot really comment on all your problems although can relate to some. Hopefully somebody with cervical spine problems will notice your post. Take care.

[Angelicscripts6 in reply to Emma2017]

To be honest I have been a bit Skeptical about my health ....

Diagnosed with varies conditions that overlapp each other.

They really have No idea what has caused this...

Like yourself I also have lumbar displacement which is a right pain in the butt so to speak....

However I get on and struggle with my wayward body until I literally drop 🤪.....

Thank you for your reply and hope your doing ok

[Emma2017 in reply to Angelicscripts6]

Well our bodies are a puzzle at times. Going for a fusion shortly which will be my 4th op so hopefully that’ll be the last. Keep up the spirit is all I can say.

[Angelicscripts6 in reply to Emma2017]

May I ask how long after 1st fusion

Did you feel a difference if any with your symptoms?......

I wish you all the best and Yes I do keep my Spirits up .....

[Emma2017 in reply to Angelicscripts6]

3 microdiscectomies before, once to stop slow onset CE but the same disc keeps on going so now a fusion.

[Angelicscripts6 in reply to Emma2017]

Hope all goes well with surgery ....I see surgeon on 14th this month ....God knows how they will fix this

Blooming nightmare .....has pig headed and stubborn as I am with myself this has taken its toll now......

Somethings in life we cannot control.....

Brain and body no longer work in sync together 😯

[Emma2017 in reply to Angelicscripts6]

Ah good I see Clive has been in touch. He will be better placed to talk to you and help you.

I am in surgery day before you see your surgeon. Good luck.

[Hidden]

Hi there, I can relate to your symptoms as I have them it's cervical myelopathy I had C4 C5 fused in 2013 and believe it or not I'm in tomorrow to c3 C4 Fusion on Thursday I have bladder and bowel problems if you want any advice I will send you a private message. Clive

[Angelicscripts6 in reply to Hidden]

Good morning Clive thank you for reply......good luck with fusion and yes like yourself been along Road to get some answers 😯.....

[Hidden in reply to Angelicscripts6]

If I can help you post me when I get back , up early have to travel . Clive x .

[Angelicscripts6 in reply to Hidden]

Will do ...when I've seen surgeon next week ....

All the best

[SheilaDugan Administrator]

This seems like quite the journey, I have had similar issue but more deals with my walking and I have had 2 fusions in the neck, going in on 1/15/2020 for 2 level decompression on the lumbar which has left my lower torso numb causing bladder and bowel issues. I get botox injections in my arms due to stabbing pains and have a baclofen pump in my stomach to help with spasticity. Pretty soon I will just become bionic.

I trust my doctors full I go to John Hopkins however my first surgeon and Healthcare provider took too long to diagnose my symptoms which did the most damage.

Not sure how to PM on here but feel free to if you need to talk or want some advice. We have somewhat similar symptoms.

[Hidden]

Hi there

Sadly your story is all too common for folks in the myelopathy community. Myelopathy is the most common neurological illness that no-one has ever heard of. Up to 1 in 3 people have it & many folk have no idea or put vague symptoms down to ageing.

Like you, my GP thought that I had carpal tunnel syndrome. The nerve conduction study was negative for that. In 5 months I went from pain in my hand to full blown myelopathy - with many of the symptoms you describe, especially the walking like treacle part, fall 7 balance issues.

And anything below the level of damage can be affected, but also because of compressive symptoms in the neck on nerves & blood flow, anecdotal evidence from members on the myelopathy support website suggests headaches, tinnitus vision issues are a problem for many folks too, which are often dismissed by the medics, mainly because the issue isn't fully researched or understood which is why the charity was set up in the first place.

I'm 7 years post op C6/C7 ACDF now - and even though full function could not be restored, I don't regret having surgery for one moment as it could have been so much more worse if I hadn't.

Best wishes

Shirley x

[Angelicscripts6 in reply to Hidden]

It's a long road I agree....for myself it's a wait & see game...

Deal with the symptoms till my neck actual falls in on itself 😉....got to have a sense of humour though😯

Symptoms are a nightmare....used to be so out going full of life...

Adapting has taken its toll but still keep going....

[Noneck]

Om I hope they can help you since they know whats wrong now. Doctors always trying to dismiss patients symptoms and say its from something else is a problem with many people besides just me. I hope you get relief from the symptoms now.

[AncientWarrior]

I was just reading that the symptoms you describe are a severe myelopathy. Glad you're seeing a surgeon.