Symptoms worse with no MRI change

[Guest guest]

Hello All,

             I wonder if anyone can relate to the issues/situation I am

currently facing. I was de tethered aged 48 in Dec 2007. Since then my symptoms

have been OK for a couple of weeks followed by periods of 2/3 days of bad

arachnoid, leg stiffness, and loss of feeling in feet/legs etc with the general

feeling that things were relatively stable with no worsening.

I had my second hip replaced in April 2009 and following the hip op I was almost

symptom free for about 2 months. But in May 2009 my symptoms became

significantly worse with increased stiffness in both legs and both my hips and

loss of feeling/tingling in my bottom and lower back with all other symptoms.

Since  May to date my symptoms have been ever present.and getting

worse. Needless to say this was alarming to me and went for another MRI but my

neuro has said that whilst I have evidence of scarring and I may be

re tethered my syrinx and visual cord condition remain unchanged. Neuro has said

that whilst there is no visual reason for my worsening symptoms it may be simply

down to the damage already caused and further advance of cord failure which I

can only conclude will lead ultimately to full cord failure etc etc!

Neuro has said that he would not recommend further surgical intervention as

there is no real target and risks compared with potential benefits do not add

up.

I have read many peoples experiences who have had 2,3 or more detethers but this

does not seem to be considered in the UK.

In common with others I have great difficulty describing to people/medics my

symptoms - walking on wooden legs with agonising tingling and extremely

annoying numbness is my best attempt. I have previously tried drugs Gaba etc but

they spaced me out with no real benefit. Still take baclofen for stiffness but

does not seem make a noticeable difference.

Now going to a different neuro for 2nd opinion and currently feeling completely

depressed and can only see years of agony and worse ahead - I think we all know

other personal distressing issues!

Sorry for rant but I am so frustrated with this dam condition,

 

If anyone has any advice or in similar situation I would  greatly value your

reply,

 

Barry

Notts,UK