New Member

[Guest guest]

Hallo All

I am booked for TCS at TCI on 15 Jan and am having cold feet so want

to share and ask advice/support.

I am 49 yrs old, a doctor, live in UK. I was slow to start walking in

the first 2 years of life, but then caught up and remained well apart

from hypermobility of joints which gave problems with spontaneous

dislocations.I was diagnosed to have mitral valve incompetence which

caused no problems at all.

13 yrs ago I was diagnosed to have communicating hydrocephalus,

possibly related to a viral infection.It turned out to be difficult to

obtain good control of this and I have over the years had 11 shunt

operations; at first lumbo-peritoneal shunts which always overshunted,

later ventriculoperitoneal shunts,with one 3 years ago complicated by

a small intraventricular bleed during surgery, causing lots of

cognitive problems.

The shunt/brain pressure characteristics made a previous neurosurgeon

feel worried about it " behaving like Chiari " , but MRI did not show

this.The ventricles never reduced in size and repeated intracranial

pressure monitoring showed both overshunting in the day and not

draining enough at night. Thankfully my latest shunt a year ago (which

has a dual adjustability) finally managed to get the ventricles down

to normal size. Unfortunately it also overshunted and has in past few

months caused a small subdural effusion.

3 years ago I developed many of the new symptoms which eventually got

me to make the trek to NY for answers: Blurred vision, nausea,balance

problems,neck and headaches,electricity down my spine, weird leg and

abdominal pains,episodic worse cognitive problems, numbness arms etc etc.

A thin syrinx was found in my spine.Follow up MRI this year showed

scoliosis and multiple disc prolapses.The flow study showed reduced

posterior CSF flow.

At TCI I was told that I have occult tethered cord, functional cranial

settling, cranio-cervical instability and that I need detethering of

the cord followed by fusion at C6-7.The CCI was to be treated

conservatively with physio, traction and orthotic jacket for now.The

overshunting is being dealt with by upward adjustment of my shunt

valve.At present we've not yet achieved optimal setting.

What they told me at TCI makes a lot of sense to me and I go through

cycles of believing this surgery may be the answer to many problems.

But then I feel so anxious that I am deciding on an elective operation

(as opposed to the shunt operations which were emergency surgeries).I

also worry because the neurosurgeon looking after my hydrocephalus is

in London. They are unable at TCI to deal with this specific shunt

I've been told.I figure that if the tethered cord surgery relieves the

relative CSF blockage, I will have to get the shunt adjusted upwards

to prevent acute overdrainage and worsening of the subdural effusion.

Usually I have to lie down a lot if I have low pressure problems and

this will not be so easy in the week after surgery when I have to make

my way back to the UK!

A further big factor is that I am self-paying and as I have been

retired on health grounds on a very small pension a year ago, I will

be exhausting every last bit of my savings for this operation.

To top it all my husband may now not be able to accompany me and I do

not know how I will cope on my own.

Heavens, I just read through the above and wonder that I am not crazy

to attempt this venture. I hope you, having been through the long road

to answers will understand how one can get to the point of being

willing to go to the end of the world for the right help!

What am I asking for? Whether any of this rings bells for any of you

out there, for opinions, for advice.

Best wishes to All

Trudi