Re: New here - more questions

[Guest guest]

To anyone that mentioned having a urodynamic study - what doctor told you to

have it? Your neurosurgeon or a urologist? I'm not sure how to address the

urologist, my doctor or the anesthesiologist with information from this group

without basically inferring that they are incompetent -- and as I think I said

before, it took a while to find a doctor that took enough action to have MRIs

ordered and get this far ... and I really need to find a way to communicate with

him about all of this that does not insinuate that he is

incompetent/unintelligent, which will likely anger him and diminish my

relationship with him.

I'm not sure why the wait is so long for a NSG. Maybe the urologist was

incorrect when he said that, but I don't know. I do not live in the U.S. The

thing is, even if I go see a NSG, I don't know if I want the surgery. That is

all a NSG would offer me, correct? I have read that some people end up in worse

pain afterwards. Is that true? This is all worrying me to the point that I am

having a nervous tic in my eye and heart palpitations... !

Margaret

>

> >

> > First of all, thank you everyone for your replies.

> >

> > I haven't seen a NSG but I have had an MRI, my cord ends between L2-L3,

> > that is where the conus is lying.

> >

> > So my strategy is going to be to see what the anesthesiologist says at the

> > consultation and if he still thinks it is ok to do the injections, I am

> > going to ask him why. I am going to ask how many other TCS patients he has

> > given injections and what were the short term and long term results. I am

> > going to bring copies of the information I've read here and on other web

> > sites and explain that I really cannot risk adding more damage/more health

> > problems to my life and if it means waiting a year to see a neurosurgeon to

> > clear me to get the injections then that is what I will do.

> >

> > I said waiting a year because my urologist told me that is how long it

> > would take, unless I was experiencing bowel incontinence in which case that

> > would indicate the cord was too strained and it would force them to consider

> > me an urgent case and operate.

> >

> I haven't had urodynamic study, I don't really know that I need one yet, I

> > am just prescribed medication intended for incontinence to prevent some of

> > the frequency/urgency. Frequency/urgency is my main issue, my incontinence

> > has mostly involved two incidents in bed in the a.m. and then a longer 2

> > week period that occurred a six years ago.

> > any comments or advice is welcome,

> > thank you

> > Margaret

> >

> >

>

>

>

[Guest guest]

I can't remember exactly. I think my neuro ordered the MRI and sent me to

the neurosurgeon. I think the neurosurgeon then sent me to a urologist, but

can't be sure. Then, the uro ordered the urodynamic study. But this was

over 10 years ago now.

I'm not sure how to address the issue. As someone mentioned before, I would

be careful about printing info from the list, as many docs do consider lists

such as ours to be just a bunch of whiners and misinformed people that think

they know better than the medical community. They put as much stock in what

we post as something in Wikipedia. Heck, they might even respect info in

Wikipedia more. However, this information is basic NTD 101 stuff. If you are

not seeing docs that specialize in NTDs, then that is probably why they

don't know this stuff. I would go to reputable NTD sites and get information

from there (like SBAA, or a hospital that treats a lot of TC and has info on

their site). When I Googled TC, one of the first pages to come up was for

Children's Hospital Boston

http://www.childrenshospital.org/az/Site1705/mainpageS1705P0.html

It has a whole section on the value of urological testing

*

**My doctor has recommended urological testing of my child as part of

his/her evaluation - is this necessary? * ** * The bladder nerve supply

comes from the very bottom of the spinal cord and is often one of the

earliest affected when tethering occurs. In young children, it is very

difficult to determine whether these nerves are working normally,

particularly in a child who is too young to talk and not yet toilet-trained.

We therefore will frequently ask our urologists to obtain a series of

urodynamic studies on our patients. These tests are designed to determine

how effectively the nerve supply from the spinal cord to the bladder is

working. In the hands of experienced urologists, patterns of abnormal nerve

impulses to the bladder can be detected and signs of spinal cord tethering

diagnosed. Having these studies is particularly helpful in planning surgery,

in anticipating future problems, and in counseling families about potential

long-term follow-up issues. *

Since you are not in the US, it might take a year to get to see a

neurosurgeon, I don't really know. Where are you located? Perhaps we have

members on here in your country that can better speak to how to navigate the

health system where you live and can give you some tips and tricks. Perhaps

where you are, you can't pick your MDs and maybe they won't let adults see

pediatric docs, I don't really know. Hopefully we'll have at least one

member where you live that can help you navigate your health system better.

I know there have been people from other countries that ultimately ended up

coming to the US for treatment because they couldn't get the care they

needed, or couldn't get the care in a timely fashion at home.TC can be

difficult to Dx even with imaging - and can take a MD that is very

experienced in dealing with it to Dx correctly and is often based on

symptoms and presentation alone.

I think even before seeing a neurosurgeon, you should see a urologist and

get the urodynamic study to determine if your urinary symptoms are

neurogenic bladder or not. If they are and are getting progressively worse,

then surgery might be needed to intervene to stop the progressive losses.

Another reason the urodynamic study is needed is to, at the very least, get

a baseline. That way, you have something to compare future studies to, so

they can tell if you are having neuro decline. The thing with urodynamic

testing is that it can pick up changes before you may even notice them.

Unless the neuro decline is rapid and major, it can be hard for the person

to notice it. Its kind of like the frog in a pot. The water heats up slowly

and those incremental changes are so minimal that he doesn't notice its

boiling until its too late.

The neurosurgeon will only offer surgery as treatment, but its important to

at least get their opinion. Some will say that they don't recommend surgery

at that particular point. But if you are Dx with neurogenic b & b, then

getting that surgical opinion is more important. Especially with how long

it can take to see one where you live.

The thing about surgery as an adult is to remember that the point of surgery

is to stop further decline - not to regain lost function. Surgery for pain

is debated. Most say that for an adult - if pain is the only symptom,

surgery isn't necessarily a good idea, as surgery will not always fix the

pain (since the nerves have already been damaged); however, sometimes it

will reduce the pain. And, yes, there is always the risk, as with any CNS

surgery, that damage can be done, even when the surgery is done correctly.

That is just a risk of CNS surgery.

Try not to stress. Its not going to help anything, and may make your pain

worse. This isn't a life threatening condition. Its not like you have cancer

and are talking about waiting 1 year to see an oncologist, where you can

lose your life in 1 year waiting to see the MD. Generally a symptomatic

retether progresses slowly. As I mentioned before, the incremental changes

with TC are generally so slow, the person doesn't even notice them. For

example, if the urodynamic study showed that you have neurogenic bladder,

you probably developed it before you even noticed the symptoms that sent you

to the MD. My urologist (as well as the urologists at Shepherd Center)

recommend that people with neurogenic b & b have an annual renal u/s and

annual or bi-annual urodynamic studies to monitor for changes to problems

can be caught early.

You asked who to ask about the urodynamic study. Didn't you say that you

already have a urologist that prescribed the meds for overactive bladder?

Did (s)he know that you have TC? I would schedule an appointment with

him/her and tell the MD that you are worried these symptoms are related to a

symptomatic retether and that it is not just simply overactive bladder and

may be neurogenic bladder instead and want a urodynamic study to be sure.

Hopefully we will have another member from your country that can help you

navigate your healthcare system. Just try to relax.

Jenn

On Mon, Mar 21, 2011 at 4:58 PM, weathering_the_tethering <

patientperspective@...> wrote:

>

>

> To anyone that mentioned having a urodynamic study - what doctor told you

> to have it? Your neurosurgeon or a urologist? I'm not sure how to address

> the urologist, my doctor or the anesthesiologist with information from this

> group without basically inferring that they are incompetent -- and as I

> think I said before, it took a while to find a doctor that took enough

> action to have MRIs ordered and get this far ... and I really need to find a

> way to communicate with him about all of this that does not insinuate that

> he is incompetent/unintelligent, which will likely anger him and diminish my

> relationship with him.

>

> I'm not sure why the wait is so long for a NSG. Maybe the urologist was

> incorrect when he said that, but I don't know. I do not live in the U.S. The

> thing is, even if I go see a NSG, I don't know if I want the surgery. That

> is all a NSG would offer me, correct? I have read that some people end up in

> worse pain afterwards. Is that true? This is all worrying me to the point

> that I am having a nervous tic in my eye and heart palpitations... !

>

> Margaret

>

>

> >

> > >

> > > First of all, thank you everyone for your replies.

> > >

> > > I haven't seen a NSG but I have had an MRI, my cord ends between L2-L3,

> > > that is where the conus is lying.

> > >

> > > So my strategy is going to be to see what the anesthesiologist says at

> the

> > > consultation and if he still thinks it is ok to do the injections, I am

> > > going to ask him why. I am going to ask how many other TCS patients he

> has

> > > given injections and what were the short term and long term results. I

> am

> > > going to bring copies of the information I've read here and on other

> web

> > > sites and explain that I really cannot risk adding more damage/more

> health

> > > problems to my life and if it means waiting a year to see a

> neurosurgeon to

> > > clear me to get the injections then that is what I will do.

> > >

> > > I said waiting a year because my urologist told me that is how long it

> > > would take, unless I was experiencing bowel incontinence in which case

> that

> > > would indicate the cord was too strained and it would force them to

> consider

> > > me an urgent case and operate.

> > >

> > I haven't had urodynamic study, I don't really know that I need one yet,

> I

> > > am just prescribed medication intended for incontinence to prevent some

> of

> > > the frequency/urgency. Frequency/urgency is my main issue, my

> incontinence

> > > has mostly involved two incidents in bed in the a.m. and then a longer

> 2

> > > week period that occurred a six years ago.

> > > any comments or advice is welcome,

> > > thank you

> > > Margaret

> > >

> > >

> >

> >

> >