Please Help

September 29, 2005

jenniferl@... wrote:

>I am 39 years old and have just been told that I have a tethered spinal cord.

>Can anyone please tell me what this is about? I can't seem to get any straight

answers from the doctor's.

>

Hello , welcome to our group. In a nutshell, tethered cord means

that your spinal cord is 'unnaturally' attached (tethered) to the tissue

surrounding your spinal cord. This could be for many reasons, the most

common, spina bifida.

I have many articles and links on the subject but unfortunately I can

not get at them right now. I got a new computer about a month ago and I

have not transferred all the info from my backup cd's to this machine

yet. For the time being, please check the archives on the yahoo web page

and hopefully other members will contribute links and information. I do

not even have my Bookmarks/Favorites on here yet, but I will send you

info as soon as I can get to it.

Rick

co-mod

September 29, 2005

Hi

First, do you mind telling us a little about yourself? What brought you to

a doctor for the diagnosis? I was diagnosed about seven years ago, at the

age of 36... I know what a shock this can be. I didn't have a clue.

Kathy

please help

> I am 39 years old and have just been told that I have a tethered spinal

cord.

> Can anyone please tell me what this is about? I can't seem to get any

straight answers from the doctor's.

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

kathy@...,michelle@..., rick@...

>

September 30, 2005

> Hi

>

> First, do you mind telling us a little about yourself? What

brought you to

> a doctor for the diagnosis? I was diagnosed about seven years

ago, at the

> age of 36... I know what a shock this can be. I didn't have a

clue.

>

> Kathy

> please help

>

> > I am 39 years old and have just been told that I have a tethered

spinal

> cord.

> > Can anyone please tell me what this is about? I can't seem to

get any

> straight answers from the doctor's.

> >

> > Not Medical Advice. We Are Not Doctors.

> > Need help with the list? Email

> kathy@t...,michelle@t..., rick@t...

> >

September 30, 2005

mariabojammy wrote:

>About three months after that I started having lots of pain

>in my right leg and hip with numbness and tingling. When I went

>back to the neurosurgeon he ordered another mri and myelogram. The

>technician who done the myelogram last Monday asked if anyone had

>told me I had a tethered cord but when I started asking questions no

>one wanted to talk until the radiologist sent the report. I guess I

>am just shook up not knowing what to expect. I have a 3 year old

>daughter and I am just trying to figure all of this out. I go back

>to the doctor Oct 10 and that seems so far away without any answers

>so I just got to searching for things on my own. It seems this group

>is just what I needed and I really appreciate the responses I got.

>

It is common practice that radiologists _do not talk._ Generally

doctors do not have much to say until they have seen the radiologists

reports. My opinion is that it was improper for the tech to ask you if

you knew you had a tethered cord. As you can tell, this put you under

undue stress not knowing any details and having to wait until Oct 10 to

find out :-( Here are some suggestions (as appropriate for your

situation) for when you do:

1) request a hard copy (printed paper) of the radiologist's report, for

sure, some of us can decipher the techno terms. Sometimes the neuro will

not tell you all that is on the report. It is your right to have a copy,

you will (probably) have to sign for it.

2) ask your neuro if tethering is a certainty or it just appears to be

tethered

3) ask your neuro if he/she can determine the cause of the tether

assuming he/she is reasonably certain that you are. The most common

cause is spina bifida, do you know if you have SB? Several on this list,

including myself, do not have SB but do have or had TSC.My cause is

listed as unknown but I was probably born with it even with no obvious

symptoms for 42 years.

An option that many patients do and some insurance companies

require, is to request copies of the actual radiology films and get

a second or third opinion from other radiologists. Often, a neuro

will show the films to their office colleagues and see what they

think. My neuro actually asked my permission to send my films to

Barrow Neurological Institute in Phoenix for their opinion, which I

gave, and consequently Dr Spetzler of BNI performed the surgery.

4) ask your neuro of their experience with tethered spinal cord (TSC),

seen it? performed surgery? successful? know experienced neurosurgeons

that have dealt with TSC?

I am sure other members of this list may have more suggestions and will

speak up when they have time and energy. Generally TSC is rare but we

have a concentration of people on here that are dealing with it in its

ugliest forms, both as adults and adults with children that have TSC.

Most of the people that have dealt with it, had successful outcome, and

returned to their normal life, have left this list.

I will try to find the information that I have this weekend.

Rick

September 30, 2005

Hi

Boy, you did get a shock. I was losing strength in my left leg and muscle

mass, then my bladder started to go and my uro sent me to a neuro who did an

MRI and wham, that's how I was diagnosed, as I said, almost seven years ago.

Since then I've had multiple untetherings for various reasons.

I found this diagnosis in the beginning so very scary...a spinal cord issue

for one, a birth defect that can go that long undetected...and so and so on.

Start writing down your questions now. Also, start thinking about problems

you had as a child (if any) that may have been related to this (if yours is

a birth defect.). You probably know this, but having someone else go to the

doctor with you to " hear' his/her answers will help you also. But the

biggest thing is research before your appt and writing down, with space for

answers, every question you have.

Good luck and let us know what we can do in the mean time and how things go

at the doctor's.

Kathy

please help

> >

> > > I am 39 years old and have just been told that I have a tethered

> spinal

> > cord.

> > > Can anyone please tell me what this is about? I can't seem to

> get any

> > straight answers from the doctor's.

> > >

> > > Not Medical Advice. We Are Not Doctors.

> > > Need help with the list? Email

> > kathy@t...,michelle@t..., rick@t...

> > >

October 14, 2005

hej pa dej Beate - jag bodde naagra aar i Sverige (paa

vaestkusten) och var ocksaa uppe i Norge maanga

gaanger - mycket vackert!

If you would like, I can send you the details of my

Dr. in Karlsruhe, Germany who was very competent. That

is a bit of a trip from Norway, but he is experienced

in doing TSC releases and the care I got was superb!

Regards,

--- Beate Garmannslund

wrote:

> Well Nina I guess i havent known that grown up ca

> use Pediatric nsgs...

> maybe ill ask my doctor next time ill visit him

> Beate

>

> On 11/10/05, AB Bunton, Electrical & Electronic

> Engineering <

> Nina.Bunton@...> wrote:

> >

> > In the UK, most neurosurgeon's are quite

> conservative and don't rush into

> > this surgery. However, unlike in Norway, in the UK

> there are quite a few

> > nsgs who know about TCS/SB, and most of them are

> pediatric nsgs.

> >

> > Beate, can you ask for a referral to a pediatric

> nsg?

> >

> > Best wishes

> >

> > Nina

> > Bristol, UK

> >

> > --On 11 October 2005 18:32 +0200 Beate

> Garmannslund

> > wrote:

> >

> > > Hi

> > > In norway.. most of the NS do not want to do

> this surgery... i had it

> > > done once.. but the NS find it difficult to find

> out things about

> > > TCS... I know this is a rare diagnosis... in

> norway.. we are very

> > > few... maybe i have to go abroad to get help.

> > >

> > > Beate

> > >

> > > On 10/10/05, mlwood_2

> wrote:

> > >>

> > >> Hi Stella,

> > >> I am wondering why you had NSG not wanting to

> do your surgery?

> > >> I have talked to two of them and they are sooo

> eager to do it that

> > >> it made me start to think maybe all surgereons

> were like these two.

> > >> On the other hand NSG #2 did instil confidence.

> I don't know where

> > >> you are from but this doctor does TCS surgery

> on adults! A rare

> > >> find indeed!

> > >>

> > >> >

> > >> > I'm sorry because I'm new too and not on top

> of the

> > >> > boards sometimes. , I'm 39 and just

> found out

> > >> > the same thing last July. I had no earthly

> idea what

> > >> > was happening til then. Suddenly, in one day

> every

> > >> > wierd problem added up and the neurologist

> left with

> > >> > multiple referrals and I felt lost and I

> dunno, just

> > >> > surprised and lost.

> > >> >

> > >> > Currently I'm finding surgeons, both from

> wonderful

> > >> > people here on boards and in my area of

> research and

> > >> > referrals. Bless everyone here, they're a

> rarity.

> > >> >

> > >> > I'm here if you need me and also many others

> here I'm

> > >> > sure, who've been her for me thankfully. If

> this

> > >> > helps I have cord tethered by lipomeningocele

> and

> > >> > sciatica down my right leg intermirttently,

> no

> > >> > schoilosis, no symptoms except the weird ones

> that

> > >> > started in my 30s.

> > >> >

> > >> > Bladder issues seemed unrelated, mild

> hammertoe seemed

> > >> > unrelated, just nothing too severe. I was

> aware and

> > >> > even went for tests like I thought i was

> diabetic

> > >> > because of frequent urination and thirst, and

> chiro

> > >> > for the other stuff.

> > >> >

> > >> > Both my parents are even in the medical field

> and

> > >> > never had a clue. My dad an anesthesiologist

> turned

> > >> > psychiartist and mother a nurse, and no clue

> all this

> > >> > time.

> > >> >

> > >> > Once I got an MRI (which i pushed for)

> finally it all

> > >> > was plain as day.

> > >> >

> > >> > Where are you? This is a rare syndrome

> especially

> > >> > amongst adults and we have to seek out

> pediatric

> > >> > neurosurgeons that dont sometime operate on

> adults.

> > >> >

> > >> > It took me since July to find a neurosurgeon

> who will

> > >> > operate, and I talked to 3.

> > >> >

> > >> > Luckily, you found the right spot to post and

> will

> > >> > talk to heroes far stronger than I. But I

> want to

> > >> > tell you where I'm at in all this, specially

> given the

> > >> > age match,

> > >> >

> > >> > Just all my best love and prayers,

> > >> >

> > >> > Suse

> > >> >

> > >> > --- jenniferl@b... wrote

> > >> >

> > >> > > I am 39 years old and have just been told

> that I

> > >> > > have a tethered spinal cord.

> > >> > > Can anyone please tell me what this is

> about? I

> > >> > > can't seem to get any straight answers from

> the

> > >> > > doctor's.

> > >> > >

> > >> >

> > >> > __________________________________

> > >> > Yahoo! Music Unlimited

> > >> > Access over 1 million songs. Try it free.

> > >> > http://music.yahoo.com/unlimited/

> > >> >

> > >>

> > >> Not Medical Advice. We Are Not Doctors.

> > >> Need help with the list? Email

> > >>

> kathy@...,michelle@...,

> rick@...

> > >>

October 15, 2005

Greeting Beate..

Yes, I agree with Nina that you may have better luck looking into seeing a

pediatric nsg. If you were born with TSC as a congenital condition... pediatric

nsg's do treat adults. I wish you luck on your continued search. Sometimes..

ped. nsg's are more well versed and have better bedside manner... (not always)

but sometimes. best regards.

Beate Garmannslund wrote:

Well Nina I guess i havent known that grown up ca use Pediatric nsgs...

maybe ill ask my doctor next time ill visit him

Beate

On 11/10/05, AB Bunton, Electrical & Electronic Engineering <

Nina.Bunton@...> wrote:

>

> In the UK, most neurosurgeon's are quite conservative and don't rush into

> this surgery. However, unlike in Norway, in the UK there are quite a few

> nsgs who know about TCS/SB, and most of them are pediatric nsgs.

>

> Beate, can you ask for a referral to a pediatric nsg?

>

> Best wishes

>

> Nina

> Bristol, UK

>

> --On 11 October 2005 18:32 +0200 Beate Garmannslund

> wrote:

>

> > Hi

> > In norway.. most of the NS do not want to do this surgery... i had it

> > done once.. but the NS find it difficult to find out things about

> > TCS... I know this is a rare diagnosis... in norway.. we are very

> > few... maybe i have to go abroad to get help.

> >

> > Beate

> >

> >>

> >> Hi Stella,

> >> I am wondering why you had NSG not wanting to do your surgery?

> >> I have talked to two of them and they are sooo eager to do it that

> >> it made me start to think maybe all surgereons were like these two.

> >> On the other hand NSG #2 did instil confidence. I don't know where

> >> you are from but this doctor does TCS surgery on adults! A rare

> >> find indeed!

> >>

> >> >

> >> > I'm sorry because I'm new too and not on top of the

> >> > boards sometimes. , I'm 39 and just found out

> >> > the same thing last July. I had no earthly idea what

> >> > was happening til then. Suddenly, in one day every

> >> > wierd problem added up and the neurologist left with

> >> > multiple referrals and I felt lost and I dunno, just

> >> > surprised and lost.

> >> >

> >> > Currently I'm finding surgeons, both from wonderful

> >> > people here on boards and in my area of research and

> >> > referrals. Bless everyone here, they're a rarity.

> >> >

> >> > I'm here if you need me and also many others here I'm

> >> > sure, who've been her for me thankfully. If this

> >> > helps I have cord tethered by lipomeningocele and

> >> > sciatica down my right leg intermirttently, no

> >> > schoilosis, no symptoms except the weird ones that

> >> > started in my 30s.

> >> >

> >> > Bladder issues seemed unrelated, mild hammertoe seemed

> >> > unrelated, just nothing too severe. I was aware and

> >> > even went for tests like I thought i was diabetic

> >> > because of frequent urination and thirst, and chiro

> >> > for the other stuff.

> >> >

> >> > Both my parents are even in the medical field and

> >> > never had a clue. My dad an anesthesiologist turned

> >> > psychiartist and mother a nurse, and no clue all this

> >> > time.

> >> >

> >> > Once I got an MRI (which i pushed for) finally it all

> >> > was plain as day.

> >> >

> >> > Where are you? This is a rare syndrome especially

> >> > amongst adults and we have to seek out pediatric

> >> > neurosurgeons that dont sometime operate on adults.

> >> >

> >> > It took me since July to find a neurosurgeon who will

> >> > operate, and I talked to 3.

> >> >

> >> > Luckily, you found the right spot to post and will

> >> > talk to heroes far stronger than I. But I want to

> >> > tell you where I'm at in all this, specially given the

> >> > age match,

> >> >

> >> > Just all my best love and prayers,

> >> >

> >> > Suse

> >> >

> >> > --- jenniferl@b... wrote

> >> >

> >> > > I am 39 years old and have just been told that I

> >> > > have a tethered spinal cord.

> >> > > Can anyone please tell me what this is about? I

> >> > > can't seem to get any straight answers from the

> >> > > doctor's.

> >> > >

> >> >

> >> > __________________________________

> >> > Yahoo! Music Unlimited

> >> > Access over 1 million songs. Try it free.

> >> > http://music.yahoo.com/unlimited/

> >> >

> >>

> >> Not Medical Advice. We Are Not Doctors.

> >> Need help with the list? Email

> >> kathy@...,michelle@..., rick@...

> >>

October 15, 2005

Beate---I had a friend from Norway who had a very severely damaged ankle.

He had had several surgeries, and each time it just got worse. Well, it

took a long time, but finally he got permission to have joint replacement

surgery in the USA approved.

So, although it is a very difficult road, I don't think it is impossible to

obtain permission and coverage for having untethering done in the USA if it

is impossible in your native Norway-------

I know this is a huge project---but, as I say, I wouldn't rule it out as a

possibility----

I lived in Norway for a while when I was in my early 20's. I went to

Folkhogskulle in Voss and to the University in Bergen. That was 40 years

ago, so my Norwegian is pretty much gone by now.

Re: please help

> Well Nina I guess i havent known that grown up ca use Pediatric nsgs...

> maybe ill ask my doctor next time ill visit him

> Beate

>

> On 11/10/05, AB Bunton, Electrical & Electronic Engineering <

> Nina.Bunton@...> wrote:

>>

>> In the UK, most neurosurgeon's are quite conservative and don't rush into

>> this surgery. However, unlike in Norway, in the UK there are quite a few

>> nsgs who know about TCS/SB, and most of them are pediatric nsgs.

>>

>> Beate, can you ask for a referral to a pediatric nsg?

>>

>> Best wishes

>>

>> Nina

>> Bristol, UK

>>

>> --On 11 October 2005 18:32 +0200 Beate Garmannslund

>> wrote:

>>

>> > Hi

>> > In norway.. most of the NS do not want to do this surgery... i had it

>> > done once.. but the NS find it difficult to find out things about

>> > TCS... I know this is a rare diagnosis... in norway.. we are very

>> > few... maybe i have to go abroad to get help.

>> >

>> > Beate

>> >

>> >>

>> >> Hi Stella,

>> >> I am wondering why you had NSG not wanting to do your surgery?

>> >> I have talked to two of them and they are sooo eager to do it that

>> >> it made me start to think maybe all surgereons were like these two.

>> >> On the other hand NSG #2 did instil confidence. I don't know where

>> >> you are from but this doctor does TCS surgery on adults! A rare

>> >> find indeed!

>> >>

>> >> >

>> >> > I'm sorry because I'm new too and not on top of the

>> >> > boards sometimes. , I'm 39 and just found out

>> >> > the same thing last July. I had no earthly idea what

>> >> > was happening til then. Suddenly, in one day every

>> >> > wierd problem added up and the neurologist left with

>> >> > multiple referrals and I felt lost and I dunno, just

>> >> > surprised and lost.

>> >> >

>> >> > Currently I'm finding surgeons, both from wonderful

>> >> > people here on boards and in my area of research and

>> >> > referrals. Bless everyone here, they're a rarity.

>> >> >

>> >> > I'm here if you need me and also many others here I'm

>> >> > sure, who've been her for me thankfully. If this

>> >> > helps I have cord tethered by lipomeningocele and

>> >> > sciatica down my right leg intermirttently, no

>> >> > schoilosis, no symptoms except the weird ones that

>> >> > started in my 30s.

>> >> >

>> >> > Bladder issues seemed unrelated, mild hammertoe seemed

>> >> > unrelated, just nothing too severe. I was aware and

>> >> > even went for tests like I thought i was diabetic

>> >> > because of frequent urination and thirst, and chiro

>> >> > for the other stuff.

>> >> >

>> >> > Both my parents are even in the medical field and

>> >> > never had a clue. My dad an anesthesiologist turned

>> >> > psychiartist and mother a nurse, and no clue all this

>> >> > time.

>> >> >

>> >> > Once I got an MRI (which i pushed for) finally it all

>> >> > was plain as day.

>> >> >

>> >> > Where are you? This is a rare syndrome especially

>> >> > amongst adults and we have to seek out pediatric

>> >> > neurosurgeons that dont sometime operate on adults.

>> >> >

>> >> > It took me since July to find a neurosurgeon who will

>> >> > operate, and I talked to 3.

>> >> >

>> >> > Luckily, you found the right spot to post and will

>> >> > talk to heroes far stronger than I. But I want to

>> >> > tell you where I'm at in all this, specially given the

>> >> > age match,

>> >> >

>> >> > Just all my best love and prayers,

>> >> >

>> >> > Suse

>> >> >

>> >> > --- jenniferl@b... wrote

>> >> >

>> >> > > I am 39 years old and have just been told that I

>> >> > > have a tethered spinal cord.

>> >> > > Can anyone please tell me what this is about? I

>> >> > > can't seem to get any straight answers from the

>> >> > > doctor's.

>> >> > >

>> >> >

>> >> > __________________________________

>> >> > Yahoo! Music Unlimited

>> >> > Access over 1 million songs. Try it free.

>> >> > http://music.yahoo.com/unlimited/

>> >> >

>> >>

>> >> Not Medical Advice. We Are Not Doctors.

>> >> Need help with the list? Email

>> >> kathy@...,michelle@...,

>> >> rick@...

>> >>

March 29, 2008

For the past three years we have been visualising a baby girl joining our

family. We spent a year applying for Inter-Country adoption and were finally

accepted then China changed its rules and we were ineligible. Then we looked

at doing Permanent care in our own area and now find that Permanent

Care is no longer an option. At best we can be long-term carers where the

children can still be returned to their birth families at any time even

after being with us since birth. Then we looked into IVF and were told we

had to use donor eggs. That process took another year but we never lost

faith or quit visualising. Finally,,,,,I was pregnant and we were over-joyed

The Secret worked!!

Last week I miscarried our baby and I am now totally in despair. I am torn

between believing that What Is Meant To be; Will Be and believing in the

power of The Secret. I feel such peace when I do The Work on this whole

issue but I feel bereft of the sense of power that visualising gave me and

the security that rituals etc held for me.

Please help!

Namaste

March 29, 2008

I am so sorry for your loss. I know how desperate you must feel. Things in

our arena were much easier at first then things went bad but worked out in

the end.

We found out that the only way we could have kids was donor sperm. I was

never interested in being pregnant or having a newborn baby. I just wanted

kids so since the kids would not be " conceived " by both of us we decided to

adopt. Our first two were from Russia. We adopted them two years

apart(each were four year old when we adopted them) so we went to Russia two

times. The last two we adopted together from Cambodia. They were only two

years old. When we went to the Embassy to get their visa's we were told

they were not approved and to take the children back to the orphanage and go

home. We said " like hell " . I went home after two weeks to take care of the

other two kids and pay the bills etc. My husband stayed another two weeks

and had to come home. We paid for foster care for them in Cambodia and had

to wait for the Government and the lawyers to sort it out. It took three

months. I remember how insane I was looking at their little cribs in their

rooms and not knowing if they will ever be in them. I truly know where you

are coming from.

If you don't mind me asking what laws did China change? Please email me off

list. I will provide any help I can. I have adopted internationally 4

times. I pretty good at it. Usually.

_____

From: Loving-what-is [mailto:Loving-what-is ]

On Behalf Of **

Sent: Saturday, March 29, 2008 8:43 PM

To: Loving-what-is

Subject: Please Help