Re: Need help on where to go

[Guest guest]

Hello,

I had scoli surgery for 76/65 scoli curves with a twist.  My surgery was 13

hours, T2 to L5, front and back.  I have no pain and my correction was

wonderful, down to about 33/25.  Dr. Monsey was my doctor, located at

the Spine Institute in Williston, VT.  I believe you could trust him to help

you.

 

Lj

From: M <n.mizenko@...>

Subject: Need help on where to go

Scoliosis Treatment

Date: Tuesday, March 15, 2011, 4:34 PM

 

I have been in pain for many years, I got something called TRANSVERSE MYELITIS,

which only 1400 of a million people get; it paralyzed from T12 down and left me

in burning feet pain 24 hrs. a day, with deep spasms; then 3 years later, I

suddenly got scoliosis & debated 9 mths. to do it; I was hospitalized 4 mths.

many complications followed within 24 hrs. or less of surgery. Even on a

respirator, kidneys failed, neph. tubes put in & 80,000 white ct.; finally found

out they didn't take care of my urostomy bag during the 10 1/2 surgery and urine

backed up to my abdomen, formed an abscess, which required my urologist to have

to go in surgery redo my urostomy drained 2 liters of infection and fluid from

my abdm., but after the scol. surgery, I have been bedridden for 17 mths.

because of I think the scol. surgeon cut a nerve or severely damaged one which

goes into my bottom; now I can't even get out of bed only when forced to see one

oe two drs. who are

dragging their feet. I was fused from T10 down and I have lost 100 lbs. in 11

mths. & no one in this backward state even seems concerned about that. We have

had to wait way too long and my 33 yr. retired military husband & I deserve more

of a life than this. My bottom burns like it is in an oven now and if I had

known I wud never let that dr. touch me for that surgery. I am asking alot, but

where would you go if you were reduced to 1 1/2 yrs. bedridden cause you can't

even sit due to the immense pain. I went to Baylor Rehab. when I was 1st

paralyzed from TM. I can accept paralyzation BUT NOT THE PAIN and condition of

being reduced to bed!!!

I hate how it has affected my family and friends don't even come but maybe one a

year. HELP???? and THANKS in advance.

[Guest guest]

Hello ....

You have discussed your situation a number of times on this forum over the past

four to eight months. You have asked for help, information, and leads to better

your situation over the past four to eight months. Many people have provided you

with information and leads over these months. YOU asked ME for information about

the Cleveland Clinic, one of the top hospitals/medical centers in the United

States, if not the world!!! I provided you with DETAILED information on a number

of departments at the Clinic that may be able to help you. Have you followed

through on ANY of those leads provided by me or others???? Yes, you are in a

very difficult situation!!! Yes, you may have to travel some to get the best

care possible!!! I am sorry to be so brash; however, until you " grab the bull by

the horns " , and get off your a@@, NOTHING WILL CHANGE!!! I am seeing someone who

complains, complains, complains; but, is not willing to take the initiative to

better them self, even when it is given to them on a silver platter!!

PLEASE FOLLOW THROUGH ON LEADS THAT YOU HAVE BEEN GIVEN!!! BEST OF LUCK!!!

S.

Need help on where to go

I have been in pain for many years, I got something called TRANSVERSE MYELITIS,

which only 1400 of a million people get; it paralyzed from T12 down and left me

in burning feet pain 24 hrs. a day, with deep spasms; then 3 years later, I

suddenly got scoliosis & debated 9 mths. to do it; I was hospitalized 4 mths.

many complications followed within 24 hrs. or less of surgery. Even on a

respirator, kidneys failed, neph. tubes put in & 80,000 white ct.; finally found

out they didn't take care of my urostomy bag during the 10 1/2 surgery and urine

backed up to my abdomen, formed an abscess, which required my urologist to have

to go in surgery redo my urostomy drained 2 liters of infection and fluid from

my abdm., but after the scol. surgery, I have been bedridden for 17 mths.

because of I think the scol. surgeon cut a nerve or severely damaged one which

goes into my bottom; now I can't even get out of bed only when forced to see one

oe two drs. who are dragging t heir feet. I was fused from T10 down and I have

lost 100 lbs. in 11 mths. & no one in this backward state even seems concerned

about that. We have had to wait way too long and my 33 yr. retired military

husband & I deserve more of a life than this. My bottom burns like it is in an

oven now and if I had known I wud never let that dr. touch me for that surgery.

I am asking alot, but where would you go if you were reduced to 1 1/2 yrs.

bedridden cause you can't even sit due to the immense pain. I went to Baylor

Rehab. when I was 1st paralyzed from TM. I can accept paralyzation BUT NOT THE

PAIN and condition of being reduced to bed!!!

I hate how it has affected my family and friends don't even come but maybe one a

year. HELP???? and THANKS in advance.

[Guest guest]

S. is it?

Hope I got the right salutation after your bashing on me.  You have no idea

unless you have been thru severe TM, because it is millions worse than

scoliosis.  #1 no to your answer on Cleveland Clinic or anywhere but our

largest city in our state, 1 hr. from here.  #2 Sorry, I never read ALL your

messages because I belong to several groups online, some kinder in nature than

others and more understanding the severity of TM.  I would get my a@@ on a

plane if I had the money---unfortunately don't-as my 33 years retired military

husband has had to wait til next mth. to FINALLLY get his full retirement &

since I became disabled in the early part of my life, I get very minimal ss and

civil service retirement.  This is why I said I want off this site because I

have met several others even call me for info. AND I have never answered them as

cold hearted as you.  Look up TM and you might be glad you only have

scoliosis.  I actually have it now in the upper

thoracic area but it's nothing compared to what I go thru w/ TM. 

 

So, dear S. don't bother to answer me again, because I knew of Cleveland

Clinic by a phone call from someone before you ever apparently replied to me. 

I missed your reply.  OOPS!!!  I wish I would have not bothered to open this

one.  You have no idea of one's life, and I will be the 1st to say no one knows

the severity of one's life if they have not been a mile in their shoes.  If you

were in places I've been, which was one of the largest Rehabs. in the U.S. , I

was told by a dr. I was a go-getter no matter if my feet burned from TM not

allowing me to even sleep 5 minutes once for 2 nights.  So, don't once put a

" pity me " label on me for myself; I have one for people like you S. -

whereever I go YOU WILL NEVER KNOW!!!!

 

Don't slam me again; I've might have physical situations but having them go back

to 1987, they have only made me stronger to waste my time to be stronger and

tell people like you - DON''T SEND ME ANOTHER EMAIL; IT WILL GO UNREAD.

 

I have tried to get out of this group and it didn't work - since you Mr.

S. seem to be so devoted to it, tell them to unsubscribe me!  GOODBYE FOR LAST

-  your heart is not in it -   p.s.  If your a@@ burned 24 hrs. a

day and feet, would you think it is possible to get on an airplane for hours and

we wonder, my husband and I, how does one transfer into an airplane chair from a

wheelchair since I'm also paralyzed, oh yes, and yes, there's the money

issue...I WILL BLOCK YOU FROM SENDING ME ANY REPLY - DON'T BOTHER AS YOU ARE NOT

NICE IN YOUR MANNERISMS ON HELPING  " SOME FOLKS " .  Goodbye

Forever!!!!!!!!!!!!!!!!!!! 

 

From: RSSSCOLIOSIS@... <RSSSCOLIOSIS@...>

Subject: Re: Need help on where to go

Scoliosis Treatment

Date: Wednesday, March 16, 2011, 9:15 PM

 

Hello ....

You have discussed your situation a number of times on this forum over the past

four to eight months. You have asked for help, information, and leads to better

your situation over the past four to eight months. Many people have provided you

with information and leads over these months. YOU asked ME for information about

the Cleveland Clinic, one of the top hospitals/medical centers in the United

States, if not the world!!! I provided you with DETAILED information on a number

of departments at the Clinic that may be able to help you. Have you followed

through on ANY of those leads provided by me or others???? Yes, you are in a

very difficult situation!!! Yes, you may have to travel some to get the best

care possible!!! I am sorry to be so brash; however, until you " grab the bull by

the horns " , and get off your a@@, NOTHING WILL CHANGE!!! I am seeing someone who

complains, complains, complains; but, is not willing to take the initiative to

better them

self, even when it is given to them on a silver platter!!

PLEASE FOLLOW THROUGH ON LEADS THAT YOU HAVE BEEN GIVEN!!! BEST OF LUCK!!!

S.

Need help on where to go

I have been in pain for many years, I got something called TRANSVERSE MYELITIS,

which only 1400 of a million people get; it paralyzed from T12 down and left me

in burning feet pain 24 hrs. a day, with deep spasms; then 3 years later, I

suddenly got scoliosis & debated 9 mths. to do it; I was hospitalized 4 mths.

many complications followed within 24 hrs. or less of surgery. Even on a

respirator, kidneys failed, neph. tubes put in & 80,000 white ct.; finally found

out they didn't take care of my urostomy bag during the 10 1/2 surgery and urine

backed up to my abdomen, formed an abscess, which required my urologist to have

to go in surgery redo my urostomy drained 2 liters of infection and fluid from

my abdm., but after the scol. surgery, I have been bedridden for 17 mths.

because of I think the scol. surgeon cut a nerve or severely damaged one which

goes into my bottom; now I can't even get out of bed only when forced to see one

oe two drs. who are

dragging t heir feet. I was fused from T10 down and I have lost 100 lbs. in 11

mths. & no one in this backward state even seems concerned about that. We have

had to wait way too long and my 33 yr. retired military husband & I deserve more

of a life than this. My bottom burns like it is in an oven now and if I had

known I wud never let that dr. touch me for that surgery. I am asking alot, but

where would you go if you were reduced to 1 1/2 yrs. bedridden cause you can't

even sit due to the immense pain. I went to Baylor Rehab. when I was 1st

paralyzed from TM. I can accept paralyzation BUT NOT THE PAIN and condition of

being reduced to bed!!!

I hate how it has affected my family and friends don't even come but maybe one a

year. HELP???? and THANKS in advance.

[Guest guest]

Wow...Regardless whether has asked for help 100 times, she should never

be treated with such hatred.  This group is supposed to be a place to support

others and give them advice no matter the circumstance.  I have offered my

opionions and experiences when I thought it might help another member even

though I myself have not received much support from this group, because that is

what it is supposed to be about.  By the way, I did go back and read the posts

and she just may have been asking for more advice or direction, because the

suggestions offered in the past may have been unhelpful to her.   I understand

not being able to sit long enough to make a 2-3 hour flight for what might be

" better care, " and if you were going through similar issues you too might

understand.  

 

, if you have such rude and unhelpful comments for another member looking

for help, maybe you should keep them to yourself.  There was no excuse for such

cold-heartedness and I myself and appauled at such nonsense.  Since your

comments were allowed by moderators to be posted, I believe I will no longer be

participating in the group.  It is so upsetting to see that such a frigid,

uncaring, disrespectful, person is allowed to post comments and responses on a

sight that is supposed to be a " support group. "   , look deep within

yourself and figure out why you would want to be so hateful to another human

being that is in so much pain and at such a loss.  I have been there myself and

just because you are offered " tons " of advice and options, that does not mean

they will help you or lead you anywhere...Good luck in the future as

it appears you are going to need it greatly.

 

, feel free to email me at ecstaticmommy2009@ .com if there is

anything I can do or if you just need someone to talk to... I am in a similar

situation and at a dead end for the moment, but keeping my head up. 

 

Best Wishes,

Paige

 

  

From: RSSSCOLIOSIS@... <RSSSCOLIOSIS@...>

Subject: Re: Need help on where to go

Scoliosis Treatment

Date: Wednesday, March 16, 2011, 9:15 PM

 

Hello ....

You have discussed your situation a number of times on this forum over the past

four to eight months. You have asked for help, information, and leads to better

your situation over the past four to eight months. Many people have provided you

with information and leads over these months. YOU asked ME for information about

the Cleveland Clinic, one of the top hospitals/medical centers in the United

States, if not the world!!! I provided you with DETAILED information on a number

of departments at the Clinic that may be able to help you. Have you followed

through on ANY of those leads provided by me or others???? Yes, you are in a

very difficult situation!!! Yes, you may have to travel some to get the best

care possible!!! I am sorry to be so brash; however, until you " grab the bull by

the horns " , and get off your a@@, NOTHING WILL CHANGE!!! I am seeing someone who

complains, complains, complains; but, is not willing to take the initiative to

better them

self, even when it is given to them on a silver platter!!

PLEASE FOLLOW THROUGH ON LEADS THAT YOU HAVE BEEN GIVEN!!! BEST OF LUCK!!!

S.

Need help on where to go

I have been in pain for many years, I got something called TRANSVERSE MYELITIS,

which only 1400 of a million people get; it paralyzed from T12 down and left me

in burning feet pain 24 hrs. a day, with deep spasms; then 3 years later, I

suddenly got scoliosis & debated 9 mths. to do it; I was hospitalized 4 mths.

many complications followed within 24 hrs. or less of surgery. Even on a

respirator, kidneys failed, neph. tubes put in & 80,000 white ct.; finally found

out they didn't take care of my urostomy bag during the 10 1/2 surgery and urine

backed up to my abdomen, formed an abscess, which required my urologist to have

to go in surgery redo my urostomy drained 2 liters of infection and fluid from

my abdm., but after the scol. surgery, I have been bedridden for 17 mths.

because of I think the scol. surgeon cut a nerve or severely damaged one which

goes into my bottom; now I can't even get out of bed only when forced to see one

oe two drs. who are

dragging t heir feet. I was fused from T10 down and I have lost 100 lbs. in 11

mths. & no one in this backward state even seems concerned about that. We have

had to wait way too long and my 33 yr. retired military husband & I deserve more

of a life than this. My bottom burns like it is in an oven now and if I had

known I wud never let that dr. touch me for that surgery. I am asking alot, but

where would you go if you were reduced to 1 1/2 yrs. bedridden cause you can't

even sit due to the immense pain. I went to Baylor Rehab. when I was 1st

paralyzed from TM. I can accept paralyzation BUT NOT THE PAIN and condition of

being reduced to bed!!!

I hate how it has affected my family and friends don't even come but maybe one a

year. HELP???? and THANKS in advance.

[Guest guest]

Dear ,

 

Regarding your 'burning feet,' PLEASE go to a neurologist and talk to the doctor

about your feet and Charcot-Marie-Tooth disease.  I have CMT and one of the

symptoms I've had is 'burning feet', which I have and I call it 'deep

itch.'   If you are curious about CMT now, I recommend that you go to the

Muscular Distrophy Association site online and yoiu will find more information

there.  CMT is not a form of Muscular Dystrophy, but the MDA includes  people

with CMT under their 'umbrella.'  Also, there is the Charcot Marie Tooth

Association, very rich in information.  The CMTA is totally revamping their

site right now, so don't be discouraged if it seems as though something is wrong

with it.

Lana

CMT with scoli  (27% of CMTers have scoli)

From: RSSSCOLIOSIS@... <RSSSCOLIOSIS@...>

Subject: Re: Need help on where to go

Scoliosis Treatment

Date: Wednesday, March 16, 2011, 9:15 PM

 

Hello ....

You have discussed your situation a number of times on this forum over the past

four to eight months. You have asked for help, information, and leads to better

your situation over the past four to eight months. Many people have provided you

with information and leads over these months. YOU asked ME for information about

the Cleveland Clinic, one of the top hospitals/medical centers in the United

States, if not the world!!! I provided you with DETAILED information on a number

of departments at the Clinic that may be able to help you. Have you followed

through on ANY of those leads provided by me or others???? Yes, you are in a

very difficult situation!!! Yes, you may have to travel some to get the best

care possible!!! I am sorry to be so brash; however, until you " grab the bull by

the horns " , and get off your a@@, NOTHING WILL CHANGE!!! I am seeing someone who

complains, complains, complains; but, is not willing to take the initiative to

better them

self, even when it is given to them on a silver platter!!

PLEASE FOLLOW THROUGH ON LEADS THAT YOU HAVE BEEN GIVEN!!! BEST OF LUCK!!!

S.

Need help on where to go

I have been in pain for many years, I got something called TRANSVERSE MYELITIS,

which only 1400 of a million people get; it paralyzed from T12 down and left me

in burning feet pain 24 hrs. a day, with deep spasms; then 3 years later, I

suddenly got scoliosis & debated 9 mths. to do it; I was hospitalized 4 mths.

many complications followed within 24 hrs. or less of surgery. Even on a

respirator, kidneys failed, neph. tubes put in & 80,000 white ct.; finally found

out they didn't take care of my urostomy bag during the 10 1/2 surgery and urine

backed up to my abdomen, formed an abscess, which required my urologist to have

to go in surgery redo my urostomy drained 2 liters of infection and fluid from

my abdm., but after the scol. surgery, I have been bedridden for 17 mths.

because of I think the scol. surgeon cut a nerve or severely damaged one which

goes into my bottom; now I can't even get out of bed only when forced to see one

oe two drs. who are

dragging t heir feet. I was fused from T10 down and I have lost 100 lbs. in 11

mths. & no one in this backward state even seems concerned about that. We have

had to wait way too long and my 33 yr. retired military husband & I deserve more

of a life than this. My bottom burns like it is in an oven now and if I had

known I wud never let that dr. touch me for that surgery. I am asking alot, but

where would you go if you were reduced to 1 1/2 yrs. bedridden cause you can't

even sit due to the immense pain. I went to Baylor Rehab. when I was 1st

paralyzed from TM. I can accept paralyzation BUT NOT THE PAIN and condition of

being reduced to bed!!!

I hate how it has affected my family and friends don't even come but maybe one a

year. HELP???? and THANKS in advance.