re: Nsg Consult News

[Guest guest]

I traveled to Boston yesterday to see a new Neurosurgeon that Dr.

(Neuro-in-Chief) at Children's referred me to, Dr. Chi at Brigham

& Women's. I was hopeful there would be " no emergencies " to delay my

appointment but half way through the intake exam, Dr. Chi was called into

consult on an emergency surgery. I have to say for the first time in a long

time I very much liked his PA a friendly compassionate " transplant " from

Tuscon, Az by the name of Gregg. He came in, introduced himself, and took as

much time as we needed, I needed to explain my " patient history " " symptoms "

" level of pain " " quality of life " " what am I most concerned about " " is there

anything else I've been meaning to ask or mention that will come to me after

I've left... " We went through just about the most through neuro eval I've

had in all my 31 years. He was open & honest and acknowledged how trying &

difficult it must be to " keep re-hashing my life story .. " But, I told him

this is something I've lived with all my life -- just as so many of us have

and I've gotten used to it.

I said I have excruciating stabbing neck pain and experience chronic

headaches as well as debilitating neuropathy in my lumbar spine, down into

my sciatica. I also mentioned how many times I've fallen in the past two

months and that the numbness in my right foot is only getting progresively

worse as now I cannot feel pain. So, after waiting (not as long as I thought

really) I met with Dr. Chi .. he said I have good news and some bad news

paired with the good -- and that is -- I'm a " rare " case a " tricky " TSC case

where-in another de-tethering is not going to solve the problem -- as my

spinal cord is too long. The answer I got was somewhat shocking as it's

drastic and somewhat of a " last resort " -- when as Dr. Chi said I can no

longer take it and feel like 'jumping off a bridge.' The answer here-in lies

in having my spinal cord shortened so as to give my nerves a place to flow

-- as now they're 'stuck' and 'adhering to scar tissue. There have only been

12 people in the country who have gone through this procedure and thus it

being 'experimental.' It was developed by Dr. Ondra and Dr

Hsieh at Northwestern in Chicago. Good news, there are options, bad news,

Dr. Ondra the Nsg who has performed this surgery is retiring and while

he has trained Dr. Hsieh well -- they're currently the only Nsg's in the

country who are experienced. So, for now he's ordered an MRI series of my

neck & lumbar spine w/w/out contrast. I'm scheduled to see my Pain doctor on

Monday afternoon and plan on discussing everything with him.

Is it what I was expecting to here? I knew going into this -- de-tethering

surgery in my " sensitive " case was not recommended and up till now pain

management and PT are all that's been recommended.

How do I feel? Nervous, upset, confused and unsure. Has anyone else heard of

this type of procedure? or familiar with the Nsg's mentioned? I wish the

neck pain would subside. The surgery mentioned above is very involved and

the operation alone takes approximately 10-12 hours with 2-3 weeks in the

hospital and 2-4 months recovery time -- as he said " not something to take

lightly. "

Thoughts?

--

Dileas, Dochas, Agus Gra,

~ With Faith, Hope & Love ~

_________________________________

" Stability and peace in our land will not come from the barrel of a gun,

because peace without justice is an impossibility. "

-- Bishop Desmond Tutu

(1931- ) Nobel Prize for Peace 1984

" Ask questions from your heart and you will be answered from the heart. "

-- Omaha Nation Proverb