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Old 05-15-2015, 03:56 AM   #1
anjula
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Join Date: May 2015
Location: United Kingdom
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anjula HB User
Myelopathy for 10 years and syptoms getting worse

Hello everyone, I am new to health boards and this is my first post after being a reader for some time so finally taking the plunge to ask something! Historically I had an RTA on a motorbike in 2005 which broke my pelvis and made a protruding disc worsen. In 2007 MRI's showed large disc protrusion at c5/c6 which impinged on the left paracentral region of the cord with significant foraminal narrowing on both root nerves. I also had disc displaced above and below but no significant damage enough to cause nerve symptoms at that time and they have since settled. The large disc protrusion is intact and just huge! and over the last 10 years I have been through tests tests tests!

I have had radiculopathy for most of that time with some progressive weakness in both hands and sensory symptoms. That is until last year when I developed a resting tremor then more recently spasticity, spasms in my left leg and arm which are severe and protracted and go on for days and contractions which last about 20 to 30 minutes on average. I am now on an increasing regime of Baclofen which helps a bit. I also have facial spasms and I can no longer use my left hand due to weakness and I have fallen a couple of time due to left leg weakness and I have an ataxic gait. Unfortunately resulting in a few broken teeth one time!

2 years ago I had a neuro surgeon review and I was not bad enough to warrant surgery. In the UK we seem to operate late and I mean late, I was told recently that complete paralysis only is a medical emergency! My surgeon is saying that due to the length of time I have had the damage that the surgery may not be successful in terms of reducing my current symptoms and may only stop the progression of further worsening?

It appears that in the US you operate early for that very reason, I will require an ACDF and a posterior laminectomy both done 2 days apart and they seem SO reluctant to operate.

I would like to ask if anyone has experience of prolonged cord compression and if so what was the outcome if they went to to have surgery later rather than sooner?

Also my consultant was talking about step wise worsening and that my symptoms may now stabilise at this point ( lucky me) for some time before getting worse again and is this common for others or once downhill do people find it snowballs.

For anyone listening in the UK what help did you get at home ect. I am due to start physion at the hospital soon for spasticity but driving is sometimes difficult due the the muscle spasms and I can no longer manage many activities of daily living, I tell my GP who says there is a long waiting list for Occupational therapy, are there any other channels to try and has anyone applied for the dreaded Personal Independance Payment? I could really do with a motorised wheelchair and then would need home modifications, I am fairly housebond now and fed up as I have a 16 yr old daughter and I am a single parent, some days I can't even make a hot drink and eat finger food a I can't cook. Please don't think I am feeling sorry for myself, we get what we get I just would like to maximise my chances for independance and have the odd hot drink when I can't get up from bed as I am quite often paralysed upon wakening for an hour or so as my arms and left leg go dead when I lie prone!

Many thanks in anticipation and sorry for any spelling errors due to jerking!

 
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