Re: re: Nsg Consult News

[Guest guest]

...I am praying for you that it becomes clear to you what you want to

do. I so wish there were answers to such huge decisions that we could all

quickly look up and know that they were right! It seems the " operative words "

here are " can't take it anymore. " You are the only one who can measure that

and

yet that also isn't as black and white as one would think, is it? many,

many hugs your way...randee

In a message dated 11/20/2008 11:16:04 P.M. Eastern Standard Time,

emaher1916@... writes:

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.being 'experimental.<WBR>' It was developed by Dr. Ste

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.b

-- 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

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[Guest guest]

, I wish I had some wonderful words of wisdom for you...but I don't. I am so

sorry that you are having to make such a decision. Only 10? Wow! Are you able to

get any information on their outcomes? I would be more than happy to help you

research....although I know that you are as much of an expert as I am at such a

thing, we must be with this condition. So exactly what is it called...when your

spinal cord is too long? How much too long is it? Maybe they can make your butt

longer....lol....sorry, but you still have to laugh sometimes, in spite of it

all...if I didn't I would be certifiable by now for sure But seriously, the

cord is too long...how are the nerves .......damn brainfog.....ummm situated? In

other words, is the top, middle and lower fairly " normal " and then the too long

part is not innervated or are things spread out to the bottom? God, does that

make any sense?? What I am trying to figure out is if they go removing part of

it, how much

function will you lose? I realize that anytime we have our cords operated on we

take the chance of losing our legs and BB functions...even with a " simple "

detether. So what has he told you about the risks? Or does he just want to refer

you to the other doc for " disclosure " ? I know that I have been putting off

surgery for a long time...not much choice with no health insurance...but I guess

my " choice " has been to hang in there. I have had many of those " jump off the

bridge " days, and truth be told, if it weren't for the new love in my life, when

my disability dropped me leaving me with no income and no way to work, I

probably would have made a different choice. That I guess is one of the

" lessons "  of this condition, to find a way to push through, even when we are

sure we can't..., my thoughts and prayers are with you. If there is anything

I can do, please let me know. If you just need to talk, email me privately and I

will give you my phone

number.                           Love & Light,

Subject: re: Nsg Consult News

To: tetheredspinalcord

Date: Friday, November 21, 2008, 4:15 AM

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

[Guest guest]

What will you lose in function w/the shortening of the cord and once shortened,

it leaves scar tissue behind again right? Giving rise to the risk of a retether

correct? Or would that have to do with where they go in to operate? (ie: They

open at the bottom of the spine, but clip the cord at a much higher spot - does

this avoid retether?)

I'll tell ya - I'm experiencing some very scary symptoms myself. For the

first time in eleven years I'm petrified that I'm starting to lose the use of my

legs, especially my left. I think if this was offered to me especially as a

last resort and the risks/losses outweighed the slow progression of loss that is

in concert with pain, I think I would consider it, but that's me with my

situation and problems.

Would you mind sending me this doctor's information privately? I'm coming up in

Dec. to see family and I may try to get an appt. for while I'll be in Mass.

I've seen one nsg here and he said exactly what I expected (and actually hoped)

to hear - operating on my retether given the five previous (failed as far as

neuro help) untetherings, another one is not an option unless I start to lose

the use of my legs. Well, that's what's started as far I can tell - but I have

to see a neuro to make sure of course, but I do need another opinion and a

different option would be helpful.

It's got to be a tough decision given how few people have had this surgery and

how few people he's operated on with this surgery. It doesn't sound like it's a

do now or don't do at all decision though (with the exception of the pain in

your back). As he said, it's a jump off the bridge or do the surgery decision

which says volumes about the surgery and the decision ... give it time, think

about it when you can and take your time with this and look at every option

there is to help control the pain (like the study I'm in for the pain pump with

Gabapentin).

Kathy

re: Nsg Consult News

To: tetheredspinalcord

Date: Friday, November 21, 2008, 4:15 AM

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