Re: Update on ph ( Retethered ??)/> mamachic9800

[Guest guest]

Hi - to answer your question about TCS being a problem

for family members I can only speak for my own of

course but yes, I have six 1st degree relatives who

all have some form of TCS with my own being the most

sever. After my surgery we had all three of our

children MRI'ed and later our grandchild - of the four

only one daughter had some minor defect in the cord.

Has anyone here had their surgery done in Utah by Dr.

M. or Dr. Rick Tippets? Thanks in advance.

Suzanne

> Hello Randee,

>

> It's here. I just had my third (and last)

> de-tethering surgery

> on May 7th at Maine Medical Center in Portland, ME.

> (BTW MMC has been

> voted the 4th best hospital in the U.S. by Consumer

> Reports and U.S.

> News and World Report)Dr. did my surgery. I

> developed symptoms

> over this past year especially but they'd been

> coming on slowly over

> the past two or so. The initial reason for the

> surgery was to relieve

> severe chronic back pain/nerve pain -- severe neck

> pain and numbness

> in my right leg and foot. Before my surgery and over

> the past year I

> had drop-foot in my right foot followed by pins and

> needles etc. I

> had an MRI done in September 2006. The first time it

> was read it was

> read incorrectly causing me to wait till April when

> I saw to

> have it properly diagnosed.. the second de-tethering

> was b/c of scar

> tissue complications as was this one. There was so

> much scar tissue

> (on the 3rd round) Dr. had to disect each

> layer and clean it

> up carefully with an electronic microscope -- doing

> this until

> everything was cleaned up as much and as well as

> possible. I woke up

> with numbness at the top of my right leg just below

> my hip, severe

> numbness and nerve damage on the bottom portion of

> my right calf and

> all of my right foot.

>

> I was forewarned about the dangers of scar tissue

> adhesion and that

> it causes more tissue to be disturbed and aggravated

> and set off the

> nerves -- because they were finally " set free " so to

> speak.

>

> Scar tissue can cause a lot of damage and potential

> damage at that. I

> would highly recommend seeking out a second opinion

> -- if your first

> nsg had his doubts and remained unsure. Trust your

> gut and

> intuition.. I'm 30 now and having been through this

> 3x every 9 years

> since I was 12 -- it's NEVER failed me. It's saved

> my life several

> times.

>

> Be well and take good care. Feel free to e-mail me

> off list too if I

> can be of any help or if you would just like to

> brainstorm or seek

> out feedback.

>

>

>

> >

> >

> > Our daughter has had three surgeries so far and

> the time between

> the second

> > and third was also only 8 months. She develops

> excessive scar

> tissue. She

> > is now 16 and when her symptoms returned our

> current NSG said he

> wouldn't do

> > another surgery without clear and tangible

> results...while that is

> scary

> > (waiting for a limp or a bowel or bladder issue),

> we were

> gratified that her

> > symptoms have subsided to occasional numbness in

> her legs. We

> were told, and

> > clearly incorrectly, by a surgeon we loved, that

> she would stop

> having problems

> > when she was fully grown. Obviously that isn't

> the case ( all one

> has to do

> > is read a few of these postings) but we are

> praying it might be

> true in her

> > case. My heart aches for you and all of us who

> are going through

> these

> > surgeries repeatedly with our children. I pray

> that if ph

> requires another one,

> > that it will be his last and that all of you will

> go on symptom

> free from

> > here on ... All we can do is find a NSG we trust,

> ask ourselves

> what decision

> > needs to made today and then pray for the strength

> to handle

> whatever the

> > future holds while savoring the moment. It is a

> mantra for me and

> while corny,

> > it seems to calm me down and get me focused. I

> try also to help

> my daughter

> > see the strengths she has that others don't and

> the challenges

> others have

> > that she doesn't i.e. for both of us to focus on

> what the good

> fortune she does

> > have...she is a natural optimist...I am learning

> from her. Many

> hugs your

> > way from one Mom to another...Randee

> >

> >

> >

> > In a message dated 6/26/2007 10:34:46 A.M. Eastern

> Daylight Time,

> > mamachic9800@... writes:

> >

> >

> >

> >

> > We took ph to the Ortho yesterday and told her

> that some

> symptoms

> > were coming back. She took an x-ray of his back to

> check on his

> > scolosis.Before TCS he was at 8 degrees and after

> TCS he went down

> to 5

> > degrees. Yesterday he was at 14 degrees which is

> only 8 months

> later.

> > I know Scolosis is only serious at 25-40 +

> degrees. She is

> ordering an

> > Mri to see if the syrinx grew or if he is

> tethered again.

> > My question is if anybody here had there scolosis

> progress and is

> this

> > a sign of anything??

> > I cant believe we are going throgh this again only

> 8 months later.

> > She also wants to check our 7 yr old with an Mri ,

> who was born

> with

> > Clubfeet, had surgery when he was 4 weeks old and

> has been doing

> fine

> > ever since now his walk has changed and has some

> bowel/bladder

> > accidents.Plus ph and I HAVE sbo/Tethered

> cord.

> > So I have both of them going. If god forbid he

> has it too, I dont

> know

> > what to do.

> > Does anybody here have multiple immediate family

> members with this?

> > I know Im just going on, but this is really

> tough!!

> > Thanks for listening

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ************************************** See what's

> free at

> http://www.aol.com.

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

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