Re: spinal cord damage?

[Guest guest]

Yes, , I have spinal cord damage due to the back problems. It went on for some time and I went through all those tests at several different hospital. The outcome, eventually, is that my bladder had to be removed and I have a urostomy. In other words, I wear a pouch at all times. It's not bad once one gets used to it, either. I never, never have to get up during the night to go to the bathroom, as, during the night I hook up to a larger jug! Although I hope that you will not have to have one, I do say that there are advantages!

Carole

[Guest guest]

Hi ...

I believe what you're talking about is stenosis, which is relatively

common in scoliosis. I think it could be even more common in people

with long fusions.

Regards,

> Hi All, yesterday I had a video urodynamic study done due to some

> bladder control issues I have been experiencing.

> According to the doctor, my problems are being caused by spinal cord

> damage. I expected it to be nerve damage, but not spinal cord.

> I am making an appointment with a nuerosurgeon do rule out MS on his

> advise. (I believe he said it was about a 10% chance of MS.)

> Just curious if anyone else has been told they have spinal cord damage

> due to Harrington rods/Flatback.

>

[Guest guest]

,

Are you talking about stenosis above the fusion? How could the cord

be

damaged below a long fusion from stenosis? I thought the actual cord

only went down to L1 or so....?

Ever struggling to understand anatomy,

loriann

> Hi ...

>

> I believe what you're talking about is stenosis, which is relatively

> common in scoliosis. I think it could be even more common in people

> with long fusions.

>

> Regards,

>

[Guest guest]

,

Please remember, now, that this is my history, and not yours. Yes I took Ditropan and many other things like it. I also did self-cathing. I finally ended up with an indwelling catheter. Then I had a ten hour surgery to build an Indiana Pouch. This puts a little pouch under the abdominal area and it has a small stoma. It is supposed to work by being catheterized every four or so hours. Well, mine was just as incontinent and was my bladder. This was a tough period. I had a wonderful urologist at Beth Israel who has gone to CA. In fact, he left before I could get my problems solved.

Then, I attended (in Boston) a meeting of the United Ostomy Association, and Dr. Scot MacDougal spoke. What a nice man. He offered a question and answer period after his talk and I asked some questions. By the end of the meeting I knew what I had to do.

I scheduled an appointment with him. He put me through all of the electrourostomic (?sp) testing possible. They stopped the testing part way through because it was obvious what I needed. Oh, also, I was having one UTD after another.

He later did a "take down" of my Indiana Pouch and gave me a urostomy. I now have a little larger stoma. This was done at Massachusetts General Hospital. It was the best thing I have ever done! God love this man. For one thing, I had so many adhesions that the surgery was nearly impossisble. He and his team worked very hard for ten hours to free them. I was in the hospital for quite a long period of time, but the care and the nursing would be very hard to surpass. He is still a very special man to me, and I now see him once a year -- faithfully.

I have never posted this part of my history before. But this man is one of my heros! And, when I see him, he always shakes my hand, smiles and says, "So, you're still here! That's wonderful!"

This is not an easy story to write. I may have frightened you, but I sincerely hope not. I have a met another real friend since I joined the Ostomy Society and guess what! She had her surgery at Mass. General, also! She had a different doctor, and likes him just as much as I like mine.

Well, that is pretty much my story. I took me a while to learn how to handle this part of my anatomy, but I am now perfectly happy with it. And, unlike other women my age, I never have to get up to go to the bathroom at night. (I hook a tube to a jug, roll over, and go to sleep!)

I hope this doesn't sound ugly to you. We all have put up with so much. Do not think of this as awful. It turns out to be a blessing.

Also, no more UTI's!

For now,

Carole M.

[Guest guest]

Hi , I don't understand it either. The Dr. didn't call it

stenosis. Before the test, I told him I had stenosis above the fusion

plus the various other issues due to flatback.

When I had seen my orotho, he doubted the bladder control problems

were related to my back. The urologist didn't think so either and at

first wasn't going to test me. Both originally thought it was an

overactive bladder.

Basically, I'm not sure if they are the same or not. I didn't know

stenosis could cause this. But what's new? Seems like I keep having

problems that I never dreamed this crap (flatback)would cause.

Thanks for responding. I greatly appreciate it.

> > Hi ...

> >

> > I believe what you're talking about is stenosis, which is

relatively

> > common in scoliosis. I think it could be even more common in

people

> > with long fusions.

> >

> > Regards,

> >

[Guest guest]

Hi Carole, Thanks for the insight. If you don't mind, I have a couple

of questions.

Were you put on medication during the testing? I was given Ditropan

to help with the control problems but I assume it won't do anything

to stop any progression.

How long did you have problems before you and your dr decided to

remove your bladder?

Thanks again for your help -

> Yes, , I have spinal cord damage due to the back problems. It

went on

> for some time and I went through all those tests at several

different

> hospital. The outcome, eventually, is that my bladder had to be

removed and I have a

> urostomy. In other words, I wear a pouch at all times. It's not

bad once

> one gets used to it, either. I never, never have to get up during

the night

> to go to the bathroom, as, during the night I hook up to a larger

jug!

> Although I hope that you will not have to have one, I do say that

there are

> advantages!

>

> Carole

[Guest guest]

,

You didn't say if any of you were having any of your bladder symptoms

when you consulted with any of the flatback " specialists " ? If not,

perhaps one of them would be able to tell you if your " structural "

problems could be the source. They might have a better perspective.

Or you might be able to use it to schedule to visit Bridwell sooner

rather than later. Maybe your local ortho would even call him?

I don't recall if you are having other flatback symptoms...but I am

guessing " not " since you are contemplating 5-7 years for surgery. I

remember quite a bit of converstation on this site this winter about

pelvic floor dysfunction....it seemed like lots of women had it. But

then again, I think having babies can do it to you also. So, not

everything is flatback related. Good luck in your search. Cam

[Guest guest]

Carole,

I envy you! I can't have that extra cup of coffee on the road 'cause I might have to stop and pee and that is an ordeal for me. I have to think ahead before I drink anything.

Don't be discouraged that you were turned down on the Bichon. Small Paws works very hard to get the right dog with the right parent. That special match will happen one day soon.

Joyce E

Re: spinal cord damage?

,

Please remember, now, that this is my history, and not yours. Yes I took Ditropan and many other things like it. I also did self-cathing. I finally ended up with an indwelling catheter. Then I had a ten hour surgery to build an Indiana Pouch. This puts a little pouch under the abdominal area and it has a small stoma. It is supposed to work by being catheterized every four or so hours. Well, mine was just as incontinent and was my bladder. This was a tough period. I had a wonderful urologist at Beth Israel who has gone to CA. In fact, he left before I could get my problems solved.

Then, I attended (in Boston) a meeting of the United Ostomy Association, and Dr. Scot MacDougal spoke. What a nice man. He offered a question and answer period after his talk and I asked some questions. By the end of the meeting I knew what I had to do.

I scheduled an appointment with him. He put me through all of the electrourostomic (?sp) testing possible. They stopped the testing part way through because it was obvious what I needed. Oh, also, I was having one UTD after another.

He later did a "take down" of my Indiana Pouch and gave me a urostomy. I now have a little larger stoma. This was done at Massachusetts General Hospital. It was the best thing I have ever done! God love this man. For one thing, I had so many adhesions that the surgery was nearly impossisble. He and his team worked very hard for ten hours to free them. I was in the hospital for quite a long period of time, but the care and the nursing would be very hard to surpass. He is still a very special man to me, and I now see him once a year -- faithfully.

I have never posted this part of my history before. But this man is one of my heros! And, when I see him, he always shakes my hand, smiles and says, "So, you're still here! That's wonderful!"

This is not an easy story to write. I may have frightened you, but I sincerely hope not. I have a met another real friend since I joined the Ostomy Society and guess what! She had her surgery at Mass. General, also! She had a different doctor, and likes him just as much as I like mine.

Well, that is pretty much my story. I took me a while to learn how to handle this part of my anatomy, but I am now perfectly happy with it. And, unlike other women my age, I never have to get up to go to the bathroom at night. (I hook a tube to a jug, roll over, and go to sleep!)

I hope this doesn't sound ugly to you. We all have put up with so much. Do not think of this as awful. It turns out to be a blessing.

Also, no more UTI's!

For now,

Carole M.Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Good point Loriann. The spinal cord becomes nerve roots in the lumbar

spine. I could be wrong, however, but I think that the nerve(s) that

controls the bladder is actually right above the sacrum.

--

-- In , " loriann262000 "

<lcmelko@f...> wrote:

> ,

>

> Are you talking about stenosis above the fusion? How could the cord

> be

> damaged below a long fusion from stenosis? I thought the actual cord

> only went down to L1 or so....?

>

> Ever struggling to understand anatomy,

>

> loriann

>

>

> > Hi ...

> >

> > I believe what you're talking about is stenosis, which is relatively

> > common in scoliosis. I think it could be even more common in people

> > with long fusions.

> >

> > Regards,

> >

[Guest guest]

I don't have full details of what they did to me in my revision - I

know that they chopped a massive osteotomy out of L2, and used the

posterior incision to reach around and smash up my anterior fusion,

with the anterior rod left in situ (comparing old to new xrays, all

the orientations of the screws, and the rod in relation to them have

changed quite a bit!), and they extended of course from the original

T10-L2 to the current T3-L4. Beyond that, I don't actually know if

they addressed the apparently mammoth osteophytes in the L2-3 region,

or decompressed anything.

What I can say, which probably isn't too useful other than the fact

it's a bit of hope, is that before the revision, I was bordering on

incontinent, or the total reverse, a lot of the time. Depending on

which kind of backpain was dominant, I either couldn't hold a thing,

and was trotting off every few minutes, or I was continually feeling

the need, but just couldn't seem to pass anything and when I did pass

a bit actually felt worse than when I hadn't because it heightened it

all. I also had persistent irritation that required a lot of

cranberry juice. However, surgery effected an immediate improvement

of matters, for which I was extremely grateful.

One of these days I'll find the necessary money (you have to pay the

NHS for your records) and order my notes. I do know that it took 3

hours longer than they expected, despite the fact that the removal of

the Hartshill wires turned out to be extremely easy and took about 30

mins, half the expected time. What they spent the excess time doing,

I don't actually know, so perhaps some decompression was involved.

Either way, it fixed it, despite my problems apparently being far too

high to cause bladder issues.

titch

--

Something unknown is doing we don't know what

[Guest guest]

Carole - I can't thank you enough. I guess like everone else here, I

am frustrated at the mounting problems flatback has caused. When I

saw my ortho and during my first visit with the urologist, both

believed my problem was an over active bladder so that's what I

believed too. I'm not sure why, but I figured that the worse case

scenario was a nerve problem and that seemed almost OK.

When I saw the picture of my bladder on the screen and the dr

explained what a healthy bladder should look like, it kinda freaked

me out. Now I just wish I had been more prepared to ask more

questions. I had seen the posts here on Pelvic Floor Dysfunction and

Cuida Equina Syndrom and looked into both. Actually, if it had not

been for those posts, I never would have put the two together.

Carole, if this is caused by spinal cord damage, is there anything I

can do, or not do to slow the progression of damage to my bladder?

Will revision surgery help this?

I know you're not a doctor and can't give me any absolutes. Just

trying to understand it all.

I'm making an appt to see my ortho and have gotten numbers for Dr.

Bridwell and Dr. Horton. Not sure about Horton yet but that would be

easiest for my family since my sister lives in Atlanta. When it comes

down to it, I an lucky enough have the means to see the best Dr. I

can find. Now I just have to find him... Thanks to this group and

people like you I have a good start.

God bless -

-- In , scolioly2@a... wrote:

> ,

> Please remember, now, that this is my history, and not yours. Yes

I took

> Ditropan and many other things like it. I also did self-cathing.

I finally

> ended up with an indwelling catheter. Then I had a ten hour

surgery to build

> an Indiana Pouch. This puts a little pouch under the abdominal

area and it

> has a small stoma. It is supposed to work by being catheterized

every four or

> so hours. Well, mine was just as incontinent and was my

bladder. This was

> a tough period. I had a wonderful urologist at Beth Israel who

has gone to

> CA. In fact, he left before I could get my problems solved.

>

> Then, I attended (in Boston) a meeting of the United Ostomy

Association, and

> Dr. Scot MacDougal spoke. What a nice man. He offered a question

and

> answer period after his talk and I asked some questions. By the

end of the

> meeting I knew what I had to do.

>

> I scheduled an appointment with him. He put me through all of the

> electrourostomic (?sp) testing possible. They stopped the testing

part way through

> because it was obvious what I needed. Oh, also, I was having one

UTD after

> another.

>

> He later did a " take down " of my Indiana Pouch and gave me a

urostomy. I

> now have a little larger stoma. This was done at Massachusetts

General

> Hospital. It was the best thing I have ever done! God love this

man. For one

> thing, I had so many adhesions that the surgery was nearly

impossisble. He and

> his team worked very hard for ten hours to free them. I was in

the hospital

> for quite a long period of time, but the care and the nursing

would be very

> hard to surpass. He is still a very special man to me, and I now

see him once

> a year -- faithfully.

>

> I have never posted this part of my history before. But this man

is one of

> my heros! And, when I see him, he always shakes my hand, smiles

and says,

> " So, you're still here! That's wonderful! "

>

> This is not an easy story to write. I may have frightened you,

but I

> sincerely hope not. I have a met another real friend since I

joined the Ostomy

> Society and guess what! She had her surgery at Mass. General,

also! She had a

> different doctor, and likes him just as much as I like mine.

>

> Well, that is pretty much my story. I took me a while to learn

how to

> handle this part of my anatomy, but I am now perfectly happy with

it. And, unlike

> other women my age, I never have to get up to go to the bathroom

at night.

> (I hook a tube to a jug, roll over, and go to sleep!)

>

> I hope this doesn't sound ugly to you. We all have put up with so

much. Do

> not think of this as awful. It turns out to be a blessing.

> Also, no more UTI's!

>

> For now,

>

> Carole M.

[Guest guest]

Joyce, thank you for the encouragement! I've been feeling sad that I haven't gotten one yet. Did you get yours through Small Paws?

Carole