Newly diagnosed

[Guest guest]

You should be feeling better soon. Don't forget to exercise.

Did your doctor advise you to sleep with the head of your

bed slightly elevated? Good plan with reflux.

Lee

[Guest guest]

the questions is why are we sick any ways....im in the

same boat as you my doc says antibiots should kill the

bacteria that is causing the flim I still have the

flim....advair should make your voice go down hill as

will as throat soar....i ahve been on

cipro,leviquin,plus others and tobi....no luck..I have

never had a cough either..........welcome to hell....

--- " TWU-Skipper, Ginger " wrote:

> Hi, my name is Ginger and I have just been diagnosed

> with mild

> bronchiectasis. I've done some research on it via

> the web, but would

> like to talk with people who already have this

> condition to find out

> what I can expect in the future. My Dr. thinks mine

> is due to acid

> reflux even though I have none of the symptoms. He

> says that 50% of

> people are " silent refluxers " and never have

> symptoms. He put me on an

> inhaler (Advair) and a medication for the acid

> reflux, which I will have

> to take from now on.

>

> Another thing I'm curious about is the fact that I

> do not have a cough

> associated with the bronchiectasis. Everything I've

> read states that a

> cough that produces large amounts of sputum is the

> #1 symptom. My Dr.

> told me not everyone has a cough. I've been sick for

> 3 mths. and am

> ready to feel better. How long does is take before

> the meds. start to

> make me feel better?

>

> Thanks for your input.

>

> Ginger

>

>

>

>

>

>

__________________________________________________

[Guest guest]

I understand. I have been there. Yoga breathing exercises will help.

You might be able to look some of these up on the Internet, or find

a good yoga person. This helped me. You don't run around, or walk,

you just breath in and out and use what lung capacity you have,

which will strengthen your lungs and help you expel the phlegm.

Stop when you are tired. Take power naps.

As to reflux. Some simple rules: Don't eat or drink anything two

hours before bedtime. Take your meds. Don't get constipated.

In two weeks you should be feeling much better.

Good luck!

Lee

[Guest guest]

Lee, no my Dr. didn’t recommend the

bed elevation, but it sounds logical to me. As for exercise, I want to start

working out again but until this inflammation in my lungs subsides, I simply

can’t because I get short of breath so easily.

Thanks for the advice.

Ginger

From:

bronchiectasis [mailto:bronchiectasis ] On Behalf Of Foebegirl@...

Sent: Monday, February 06, 2006

12:06 PM

To: bronchiectasis

Subject: Re:

newly diagnosed

You should be feeling better soon. Don't forget to

exercise.

Did your doctor advise you to sleep with the head of your

bed slightly elevated? Good plan with reflux.

Lee

[Guest guest]

Lee, thanks for the tips and encouragement.

I already have a gym membership and I’m pretty sure they offer Yoga

classes. I will definitely check into it.

Thanks again,

Ginger

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Foebegirl@...

Sent: Monday, February 06, 2006

5:25 PM

To: bronchiectasis

Subject: Re:

newly diagnosed

I understand. I have been there. Yoga breathing

exercises will help.

You might be able to look some of these up on the Internet,

or find

a good yoga person. This helped me. You don't run around, or

walk,

you just breath in and out and use what lung capacity you

have,

which will strengthen your lungs and help you expel the

phlegm.

Stop when you are tired. Take power naps.

As to reflux. Some simple rules: Don't eat or drink

anything two

hours before bedtime. Take your meds. Don't get

constipated.

In two weeks you should be feeling much better.

Good luck!

Lee

[Guest guest]

Hi! My name is Kristi, and I was diagnosed with a tethered cord a little

over a month ago at TCI. I don't know what symptoms are from the TC, and what

are from everything else that I have going on. I do need to go for

urodynamics testing, but I am scared of that! He told me that my conus is in a

normal

posisition " for now. " Everything that I have seen online says that a

tethered cord is a low-lying conus. Are there different types of TC? Thanks!

[Guest guest]

Dr. Oakes and Dr. Yamada have cases described of " normal lying conus " . Sometimes

what looks normal lying to the majority of doctors is not normal lying, it is

really a stretched out conus the if you do horizontal cuts with a higher quality

MRI it can be picked up. If clinically everything else looks like tsc, it's

reasonable not to exclude tsc based on the location of the conus. Does that make

sense?

Newly diagnosed

Hi! My name is Kristi, and I was diagnosed with a tethered cord a little

over a month ago at TCI. I don't know what symptoms are from the TC, and

what

are from everything else that I have going on. I do need to go for

urodynamics testing, but I am scared of that! He told me that my conus is in

a normal

posisition " for now. " Everything that I have seen online says that a

tethered cord is a low-lying conus. Are there different types of TC?

Thanks!

[Guest guest]

Personally, even if your Conus is in the normal position,

and they diagnosed you with Tethered Cord, I would

go with that. There are Cases, of certain types of Tethers,

where the Conus is in the normal position....or what is

lead to believe, normal. But a second Opinion never

hurts..........if you feel that would help you better make

some decisions, I wouldn't hesitate to get one, if I were

you. You could also ask the Dr. at TCI how it is that

your Conus is in the normal position, yet they still

believe you have Tethered Cord.

Me

Nebraska, USA

mymocha@...

I was diagnosed with a tethered cord a little

> over a month ago at TCI. I He told me that my conus is in a normal

> posisition " for now. " Everything that I have seen online says that a

> tethered cord is a low-lying conus. Are there different types of TC?

[Guest guest]

To bmcateer (sorry don't see your first name!)

Just curious, what type of tc did you orginally have surgery for?

Dee

To: tetheredspinalcord@...: bmcateer@...: Sun, 20 Jan

2008 01:23:05 +0000Subject: Re: Newly Diagnosed

Donna:You might have to travel to get a great TSC doctor- P. Falci M.D. is

the Chief Neurosurgical Consultant for Craig Hospital-click on the link

belowhttp://www.craighospital.org/SCI/rehabNeurosurgery.aspWith that said--I

live in NJ and my Lite speed bike has been dusty since my last and final surgery

done by Dr Barth Green in Miami. (Goggle him) I always suggest never to have

surgery-----you will see many different opinions, and everybody reacts different

but the net is that the body will always create scar tissue and after 2 years

you will be worse then before----keep biking, exercise and if need be

medication----5 surgeries over 20 years----trust me avoid at all cost>> Hi,>

> My name is Donna and I am 37 years old. I was diagnosed with a > tethered cord

this past November. I have been asymtomatic up until > this past summer. I did a

lot of bicycling and didn't think anything > was wrong with my legs except that

they were just sore from biking. > I also didn't think anything of it when

co-workers started noticing > that I was limping, because I didn't hurt and

really didn't notice > the limp myself. I thought I better look into the limping

issue > after the biking season was through and family members noticed that I >

was still limping. > > I just thought that my back was out of place causing me

to limp, so I > started with a chiropractor. The chiropractor had me see a

general > practitioner before starting treatment. The GP had me do all sorts >

of things. When he asked me to stand on my tippy toes, I was shocked > when I

couldn't even get up on my toes. The GP referred me back to > my family doctor.

My family doctor ordered a MRI. She saw evidence > of a tethered cord and " fatty

infiltration " in my lower back. She > referred me to a neurologist, who looked

at my report and immediately > sent me to a neurosergeon. The neurosergeon

wasn't confident that I > truely had a tethered cord and had me do physical

therapy after doing > an EMG on my legs (that hurt like hell). The PT helped

with the > tight muscles, but didn't help with the limp. He then ordered a >

meylogram. The meylogram, according to him, conclusively shows a > tethered

cord. He recommends surgery. > > My last appointment with the neurosergeon was

not very productive as > I was suffering with a headache from the meylogram. The

only thing I > got out of that meeting was that I had a tethered cord and need >

surgery. My next appointment is in February and I was hoping you all > could

guide me on what questions I should be asking. Also, I want to > get a second

opinion and was wondering if any of you know of a doctor > in the Omaha,

Nebraska area that specializes in this.> > Thanks in advance for any advice,> >

Donna>

_________________________________________________________________

[Guest guest]

Donna,

welcome!

Some things I wish I had known going in to my surgeries and questions to

ask. The point of untethering surgery is not to return lost function - it is

to stop any further losses. Anything functional return after surgery is just

a bonus). I would ask your neurosurgeon about retether. Many either won't

mention it or will tell you that as an adult it cannot happen. It can.

There are no surgical techniques or procedures after surgery (either rolling

you from side to side or keeping you flat or having you up walking the next

day that can prevent it. Each surgeon has their preference and they think

their method is better, but no one method or technique has been shown to

prevent retethering).

They have said that adults who have pain as their only symptom should skip

the surgery b/c its not likely to fix the pain. But when you start to have

neurological losses, then you have to consider surgery. Its a personal

decision. How are you functioning now? How quick has the progression been

(ie: are you able to notice differences every few months or sooner or have

you been stable for a long period of time). If you notice functional

decline then you can consider the surgery to stop it. You have to think

about how fast the progression is, what you are willing to lose

(permanently) and the fact that surgery may become almost inevitable if you

keep losing and you realize you could have done it sooner and tried to stop

it. Or, if you have not noticed any progression of losses, and you're not

experiencing any pain (or it is manageable), then you might consider waiting

and watching.

You mentioned that you were surprised that you couldn't stand on your tippy

toes. Have you ever been able to? Its funny what you can accept as " normal "

when you have been that way your whole life and not known any different.

I have had 2 myelograms. not fun, I know. I insist on conscious sedation.

Besides, if they try without it, I cannot physically hold still. My first

one was ordered with conscious sedation and the doc chose not to follow the

orders. then I was on the table, he was yelling at me that I had to hold

still and that " it doesn't hurt that bad. " yeah right. I was

hyperventillating and screaming. Not that bad my rump. Let me stick that

needle in his back and see what he thinks. I have known people with

" normal " backs and apparently the whole needle in the back thing is not that

painful. But what this guy just could not get through his thick skull --

was that when your anatomy is not normal and you have nerves running in

places they shouldnt be, it is painful. Sorry - off on a tangent.

After that test is completely inappropriate time for the doc to talk to you

if you have a headache from it. They should have brought you back to discuss

the results and your options. If you still have questions, you should call

your doc's office and ask to speak with him or his RN and ask your questions

until they are fully answered.

I remember someone else being treated in your area. I don't know if they

were on this list or not. But they had problems finding a doc that was

experienced in treating NTDs (particularly that was willing to treat

adults). I highly recommend getting a second opinion. Especially if you

think you are going to go forward with surgery. There a many good

docs/centers. There is a doc in Chicago (drawing a blank on his name) who

many people have been to. My neurosurgeon recommended him and he will see

adults. Duke has a great center for SB and they will see adults. The key is

making sure they are willing to see adults -- even though they are in the

pediatric center.

Unfortunately, there are never easy answers about who/when to have surgery.

it is a very personal choice. Its kind of like making a pro/con list about

having surgery or not. And then, symptoms I think are tolerable my not be to

someone else. Something I'm willing to put up with and live with, someone

may not. One person's " cut point " for the function they are willing to lose

before going ahead with surgery is different from another persons. it's

just a matter of deciding what symptoms you are willing to live with and the

risks you are willing to take.

Its a difficult decision to make. I know, I have made it 3 times. don't let

family pressure you to make a certain decision. Just surround yourself with

supportive people who are willing to help.

Jenn

> Hi,

>

> My name is Donna and I am 37 years old. I was diagnosed with a

> tethered cord this past November. I have been asymtomatic up until

> this past summer. I did a lot of bicycling and didn't think anything

> was wrong with my legs except that they were just sore from biking.

> I also didn't think anything of it when co-workers started noticing

> that I was limping, because I didn't hurt and really didn't notice

> the limp myself. I thought I better look into the limping issue

> after the biking season was through and family members noticed that I

> was still limping.

>

> I just thought that my back was out of place causing me to limp, so I

> started with a chiropractor. The chiropractor had me see a general

> practitioner before starting treatment. The GP had me do all sorts

> of things. When he asked me to stand on my tippy toes, I was shocked

> when I couldn't even get up on my toes. The GP referred me back to

> my family doctor. My family doctor ordered a MRI. She saw evidence

> of a tethered cord and " fatty infiltration " in my lower back. She

> referred me to a neurologist, who looked at my report and immediately

> sent me to a neurosergeon. The neurosergeon wasn't confident that I

> truely had a tethered cord and had me do physical therapy after doing

> an EMG on my legs (that hurt like hell). The PT helped with the

> tight muscles, but didn't help with the limp. He then ordered a

> meylogram. The meylogram, according to him, conclusively shows a

> tethered cord. He recommends surgery.

>

> My last appointment with the neurosergeon was not very productive as

> I was suffering with a headache from the meylogram. The only thing I

> got out of that meeting was that I had a tethered cord and need

> surgery. My next appointment is in February and I was hoping you all

> could guide me on what questions I should be asking. Also, I want to

> get a second opinion and was wondering if any of you know of a doctor

> in the Omaha, Nebraska area that specializes in this.

>

> Thanks in advance for any advice,

>

> Donna

>

>

>

[Guest guest]

bmcateer (I didn't see your signature at the end of your message),

I couldn't agree with you more. I have had 3 surgeries and not one of them

made me better. Scar tissue developed and required a second. A syrinx

developed and I required a third. The only bike I'm using now is a hand

cycle!

I have heard good things about Miami and have recommended it for a long time

as an option (they house the Miami Project, afterall). But I have never

known anyone who actually had their surgery there. How was the facility? I

guess you thought it was good enough to recommend. Thanks if you're willing

to share your experience.

Jenn

> Donna:

>

> You might have to travel to get a great TSC doctor- P. Falci

> M.D. is the Chief Neurosurgical Consultant for Craig Hospital-click

> on the link below

>

> http://www.craighospital.org/SCI/rehabNeurosurgery.asp

>

> With that said--

>

> I live in NJ and my Lite speed bike has been dusty since my last

> and final surgery done by Dr Barth Green in Miami. (Goggle him) I

> always suggest never to have surgery-----you will see many different

> opinions, and everybody reacts different but the net is that the

> body will always create scar tissue and after 2 years you will be

> worse then before----keep biking, exercise and if need be medication-

> ---5 surgeries over 20 years----trust me avoid at all cost

>

>

> >

> > Hi,

> >

> > My name is Donna and I am 37 years old. I was diagnosed with a

> > tethered cord this past November. I have been asymtomatic up

> until

> > this past summer. I did a lot of bicycling and didn't think

> anything

> > was wrong with my legs except that they were just sore from

> biking.

> > I also didn't think anything of it when co-workers started

> noticing

> > that I was limping, because I didn't hurt and really didn't notice

> > the limp myself. I thought I better look into the limping issue

> > after the biking season was through and family members noticed

> that I

> > was still limping.

> >

> > I just thought that my back was out of place causing me to limp,

> so I

> > started with a chiropractor. The chiropractor had me see a

> general

> > practitioner before starting treatment. The GP had me do all

> sorts

> > of things. When he asked me to stand on my tippy toes, I was

> shocked

> > when I couldn't even get up on my toes. The GP referred me back

> to

> > my family doctor. My family doctor ordered a MRI. She saw

> evidence

> > of a tethered cord and " fatty infiltration " in my lower back. She

> > referred me to a neurologist, who looked at my report and

> immediately

> > sent me to a neurosergeon. The neurosergeon wasn't confident that

> I

> > truely had a tethered cord and had me do physical therapy after

> doing

> > an EMG on my legs (that hurt like hell). The PT helped with the

> > tight muscles, but didn't help with the limp. He then ordered a

> > meylogram. The meylogram, according to him, conclusively shows a

> > tethered cord. He recommends surgery.

> >

> > My last appointment with the neurosergeon was not very productive

> as

> > I was suffering with a headache from the meylogram. The only

> thing I

> > got out of that meeting was that I had a tethered cord and need

> > surgery. My next appointment is in February and I was hoping you

> all

> > could guide me on what questions I should be asking. Also, I want

> to

> > get a second opinion and was wondering if any of you know of a

> doctor

> > in the Omaha, Nebraska area that specializes in this.

> >

> > Thanks in advance for any advice,

> >

> > Donna

> >

>

>

>