RE: (unknown)

[Guest guest]

Welcome to our great group, ! This group was formed in, I believe,

January of 1999, by Norgaard, from Denmark. Many of us are refugees

from MHD. We like this format. It's like we're all sitting around in one

room, sharing the same conversation. There's lots of good info in here, and

people are friendly and supportive of each other. We feel like an extended

family. What more could we ask for?

Susie )

[Guest guest]

Thanks!

Re: (unknown)

Howdy, . Welcome!

Teri

(unknown)

Howdy folks! New here, but not new to the internet, mailing lists or

newsgroups. And I may even know some of ya! I've been a regular on MHD and

ASD for a couple years now... I'm also on at least 2 or 3 other diabetes

related mailing lists.

----------------------------------------------------------------------------

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Public website for Diabetes International:

http://www.msteri.com/diabetes-info/diabetes_int

[Guest guest]

Hi Wayne,

Welcome to a big loving family of sisters, brothers, and a mom and a dad.

Ask any questions .. someone will have an answer or response.

Take care..

Hugs,

[Guest guest]

Hey Wayne I am in TN and I had GBS on January 7th and am doing real well I

have lost somewhere between 35-40 pounds I am not weighing lately . I just

wanted to say this is the best group in the whole world as far as love and

support and I think you will learn that too

(unknown)

hi there i just joined the group here although i have

not had it done yet i am hoping to. i am waiting on

paperwork to fill out to see if i can have it. im 33

and about 350 lbs im a diabetic and have a

diverticular intestine and dont know if that will stop

me from doing it or not.well thank you foor the email

........wayne

__________________________________________________

[Guest guest]

Snow?? that is not fair. It is 79 degrees here and I just mowed my lawn for

the second time this month. I am jealous.

Hugs,

Hiya,

Catching up on the mail this morning (Monday). Coming through loud and

clear! And it's snowing. <G>

SuzieB :-)

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.338 / Virus Database: 189 - Release Date: 3/14/02

[Guest guest]

I am a newbie and am looking for information on this disease. My mother was diagnosed several yrs ago and has recently gotten worse.

Hello CaSak,

Welcome to the group. Sorry to hear that your Mum has bronch and is unwell right now, but she must never give up. We just have to do whatever we can to keep well. We are all individuals, with this disease, and no doctor can put a time limit on our condition. Just wondering how old your Mum is? If she still has 50% lung function, that is not so bad. It is better than me, and I'm not giving up. When you said the doctor found a large "packet" do you mean pocket of mucus? Does your Mum have regular chest physiotherapy and postural drainage? If not, that would be important to look into. If she can keep her chest clear, there will be less chance of infection. Ask your doctor to refer your Mum to a respiratory therapist who can show you how to do this. It sounds like your Mum is having a rough stretch, and we all go through this. Once her pneumonia is treated, she may feel a lot better. Meanwhile, the best you can do is to make sure your Mum gets the best treatment and lots of physio in hospital. Please ask away if you have any more questions.

Wishing your Mum well,

Love Bunny

[Guest guest]

Dear CaSak in NY--Does your Mom live in rural Kansa? Can she, once she recovers from her current bout of pnuemonia get herself to a larger city that has a good hospital with a Pulmonary Dept?? I would be very skepitcal of a Dt who thinks he/she can put a length of survival on this type of problem. Bronchiectasis needs to be treated as serious but it need not be a fatal disease. It can be dealt with if you have the right care! It sounds like your Mom and her Drs. have let some infections get very serious--but a good pulmoary Doc can help you I promise. I know everyone will say the same and it is possible she may be best put on a transplant list but....first find a Dt who is not counting the days for your Mom but counting all the ways he/she can help her live a full life!!! Let us know. Where in NY do you live? Maybe she can come see a Dr near you if you live in a metro area? XXCaSak NY wrote: hello everyoneI am a newbie and am looking for information on this disease. My mother was diagnosed several yrs ago and has recently gotten worse. She is currently in the hospital. My questions are: She has been told her lung function is at 1/3 both lungs combined. She had the bronc scope done (forgive me I cant spell to save my life ) last friday 3/30/07 and the dr found a large packet that when it becomes infected we were told she will most likely rupture. About a month ago, she had a bleeding espoide that within 20mins she was

coughing up 1/2 cup of blood. The dr told us that the disease has moved to both the upper and lower (lumb misspelled). We asked the dr about her timeline due to the fact that she has gotten worse within the last month. We were told her timeline was 1yr or less and the dr believed that her #'s from her plumnary function test would support this. The dr then told us she has 5 yrs. I have to mention that 3 weeks ago, her lung function was sitting at 50%. She does have pnemnia (again sorry I cant spell) that developed hours after her broc scope. Any information on how bad this is would be great. My sister and I are at a loss as to what to believe. We think the dr may have given our mom the 5 yrs with the hope that mom wouldnt focus on anything but that. Please understand, I live in NY and my family live in KS.Thank you__________________________________________________________Get a FREE Web

site, company branded e-mail and more from Microsoft Office Live! http://clk.atdmt.com/MRT/go/mcrssaub0050001411mrt/direct/01/

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

Actually, and unfortunately if her lung disease is advanced transplant is likely the only option. I think when people are not as sick with their bronchiectaisis they cannot understand that some os us are very ill and unable to work, constantly doing treatments, etc, etc. in some cases bronchiectaisis is indeed fatal. Well I agree doctors can not put an estimate on our lives in severe cases where bronchiectasis is not responding to treatment, antibiotics are not working, and so on transplant is an excellent option, Many people do very well with lung transplants these days, so please keep an open mind and do consider transplant as being a "positive" and life giving option. Its worth it! I'm sorry if this e-mail seems harsh and perhaps it is, but I wish everyone could understand that bronchiectasis is "not necessarily a mild" illness for everyone and sometimes in spite of the best treatments nothing works like it should . Rather

than viewing transplant is a non-solution please see it for the positive solution that it can provide for some of us. Thanks and Hugs:0) LIz wrote: Dear CaSak in NY--Does your Mom live in rural Kansa? Can she, once she recovers from her current bout of pnuemonia get herself to a larger city that has a good hospital with a Pulmonary Dept?? I would be very skepitcal of a Dt who

thinks he/she can put a length of survival on this type of problem. Bronchiectasis needs to be treated as serious but it need not be a fatal disease. It can be dealt with if you have the right care! It sounds like your Mom and her Drs. have let some infections get very serious--but a good pulmoary Doc can help you I promise. I know everyone will say the same and it is possible she may be best put on a transplant list but....first find a Dt who is not counting the days for your Mom but counting all the ways he/she can help her live a full life!!! Let us know. Where in NY do you live? Maybe she can come see a Dr near you if you live in a metro area? XXCaSak NY <casaknyhotmail> wrote: hello everyoneI am a newbie and am looking for information on this disease. My mother was diagnosed several yrs ago and has

recently gotten worse. She is currently in the hospital. My questions are: She has been told her lung function is at 1/3 both lungs combined. She had the bronc scope done (forgive me I cant spell to save my life ) last friday 3/30/07 and the dr found a large packet that when it becomes infected we were told she will most likely rupture. About a month ago, she had a bleeding espoide that within 20mins she was coughing up 1/2 cup of blood. The dr told us that the disease has moved to both the upper and lower (lumb misspelled). We asked the dr about her timeline due to the fact that she has gotten worse within the last month. We were told her timeline was 1yr or less and the dr believed that her #'s from her plumnary function test would support this. The dr then told us she has 5 yrs. I have to mention that 3 weeks ago, her lung function was sitting at 50%. She does have pnemnia (again sorry I cant spell) that developed

hours after her broc scope. Any information on how bad this is would be great. My sister and I are at a loss as to what to believe. We think the dr may have given our mom the 5 yrs with the hope that mom wouldnt focus on anything but that. Please understand, I live in NY and my family live in KS.Thank you__________________________________________________________Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! http://clk.atdmt.com/MRT/go/mcrssaub0050001411mrt/direct/01/ Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here."

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

[Guest guest]

Hi Deborah, So sorry to learn of what your dear Mom is going through. I have had the night-time hot flushes and find that a cool cloth on my forehead helps. Also, I have a fan in my bedroom to turn on when needed. I don't know about the nausea, you might want to ask her doctor about that. Does she have any other health issues that might cause this?

May you find answers to your questions and may God give strength to care for the one who gave you life.

Louise

(unknown)

Hi

I am caring full time for my 90 year old mother with bronchiectasis and would appreciate any help I can get. My mother suffers from what she calls hot flushes and wakes up in the middle of the night with nausea. If any one has any suggestions as to how to help her please let me know.

Thank YOu

Send instant messages to your online friends http://au.messenger.yahoo.com

[Guest guest]

I am caring full time for my 90 year old mother with bronchiectasis and would appreciate any help I can get. My mother suffers from what she calls hot flushes and wakes up in the middle of the night with nausea.

Hi Deborah,

Welcome to the group. Let us know what we can do to help. Has your mother had bronch for very long, or recently diagnosed? Is she being looked after by a a pulmonologist or respiratory physician? The night sweats and quite common with bronch, but just make sure that she doesn't have a temperature. I wonder if the nausea is connected to the bronch, or if she is having some gastro problems? If your Mum is feeling unwell, it would be best to have her checked out by a doctor, as she may have a chest infection. We are all individual with our bronchiectasis, and treatment can vary. Tell us more about what treatment your Mum is having, if she has a productive cough, is taking antibiotics. If she coughs up mucus, have they done a culture on this? I am on maintenance antibiotics, ciproxin and inhaled tobramycin at home, and do daily chest physiotherapy to clear my lungs.

Hope this helps.

Love Bunny

[Guest guest]

I agree way to soon! I'm 24 y/o had my surgury a year ago and maybe

just maybe I think I am finally feeling where I thought I would be. I

was weak for months 3-4 after mine. And the docs thought I'd recover

faster cause of my age but took just as long as most other adults.

This message was sent from an iphone and may not display correctly.

>

> -

>

> In my opinion 11 days post op is way TOO SOON to even think about

> trying to work!!! I could not have worked for at least three months

> after surgery. Everyone is different but I think the speediest

> recovery I've heard of on this group was 3 weeks back to a

> sendentary position, while some have taken 6 months to a year to get

> back. It can take weeks, months just to recover from the anesthetic,

> let alone the surgery. It can also take up to a year for all your

> nerves to settle and see the full benefits of surgery. Your nerves

> need time to heal and adjust to their " new location " , so 11 days is

> way too soon to make any conclusion (all your nerves are likely

> pretty " freaked out " right now). I suffered very weak and aching

> legs, along with increased back pain after my surgery, and very

> slowly they got better, however, unfortunately I can't say I am any

> better than before my surgery, but I have other disk and spinal

> issues as well so that implicates things.

>

> Dee

>

> To: tetheredspinalcord

> From: susancarr8285@...

> Date: Thu, 26 Feb 2009 17:04:36 -0800

> Subject: Re: (unknown)

>

> ,

>

> I am 11 days post-op, but I have no relief from the burning and

> numbness, yet. Prior to surgery, I had this terrible sensation of my

> entire legs and feet " falling to sleep " each time I lay down. That

> has improved, but I'm a little worried about the numbness.

>

> I wasn't given much instruction about post-op care. Basically, I was

> told not to bend, twist, or lift anything over 5 pounds. I wasn't

> told when I might feel like returning to work. I am an elementary

> school principal and have gone to work twice for about two hours. By

> the end of those two hours, I have been weak, weary, and ready to go

> home. Is this typical?

>

> I would appreciate any info you can give me about your experience. I

> truly hope your next surgery go well.

>

>

>

> ________________________________

>

>

>

> To: tetheredspinalcord

>

> Sent: Thursday, February 26, 2009 7:29:27 PM

>

> Subject: Re: (unknown)

>

> The first one was very successful. I noticed improvement in the pain

> immediately after surgery. Took a couple of weeks before I was

> getting around well but after recovering from surgery I was able to

> return to work full-time as a nurse. The neuropathy went away as

> well. Unfortunately, I fell in 2005 (surgery in 2000) and broke some

> bones back there. Haven't recovered from that really, lots of nerve

> damage evidently (or I am retethered). Kids recover much quicker

> though and I'm sure all will go well Make sure that the nurses

> are very familiar with taking care of a post surgical TC pt

> though....mine weren't and complicated things for me by mishandling

> me. Blessings,

>

>

>

> From: Carr <susancarr8285@ yahoo.com>

>

> Subject: (unknown)

>

> To: tetheredspinalcord@ yahoogroups. com

>

> Date: Wednesday, February 25, 2009, 3:07 PM

>

> Dear TCS friends,

>

> After a three-year search, I was diagnosed with TCS on February 4,

> 2009 and underwent surgery February 16, 2009.

>

> My search began with an appt. at the urologist where I was diagnosed

> as having interstitial cystitis - even though my problem was

> retention. I was given a variety of meds, instillations, bladder

> stretching surgery, physical therapy, etc., but the problem remained

> and worsened.

>

> In addition, I have seen an internist, neurologist, rheumatologist,

> chiropractor, accupuncturist, etc. I have had blood drawn, taken

> many vitamins, minerals, and herbs, and been detoxified. I have been

> prescribed neurotin and cymbalta.

>

> I told each doctor that there was a connection between my bladder

> problems and my burning, aching, increasingly numbing feet and legs.

> Each time I was politely dismissed. My internist thought the

> numbness and burning might be due to hypothyroidism, as I was

> somewhat low. After 5 months of thyroid meds, my internist decided

> that hypothyroidism was not responsible for the burning and

> numbness. That same day, I had an appt. with the urologist (same

> group I started out with) for a urodynamics test.

>

> I went through my story one more time. Suddenly, as the doctor was

> conducting the test, it was like a lightbulb came on. She told me

> she thought she knew what the problem might be. She made a call to a

> neurosurgeon, helped me get an appt. and the rest is history.

>

> It has just been 9 days since surgery, but I'm feeling confident.

> The burning and numbness are still present, but I had this awful

> sensation of my entire legs falling to sleep every time I lay down

> at night. That has gone away, and I honestly feel as though my

> bladder has already improved.

>

> I would very much like to converse with another adult who has had

> the surgery.

>

> I truly wish everyone well. This has been a most difficult journey

> for me, and I would love to be able to help someone else along the

> way.

>

>

>

>

[Guest guest]

Thanks It is very hard to say what is " normal " for anyone post-surgery

but it sounds as if your symptoms are in the range of what we hear from others.

As Dee said, you are early in yet so give yourself some time...not sure if even

every other day at work is a good idea but you have to decide for yourself. Many

of us had spinal fluid leaks after surgery, usually from too much activity...you

definately dont want one, the headaches are excrutiating and they sometimes take

a long time to heal. Also if you aggravate the nerves with more inflammation it

will result in more neuro symptoms. Hope you start to feel stronger soon

   

>

> From: Carr <susancarr8285@ yahoo.com>

>

> Subject: (unknown)

>

> To: tetheredspinalcord@ yahoogroups. com

>

> Date: Wednesday, February 25, 2009, 3:07 PM

>

> Dear TCS friends,

>

> After a three-year search, I was diagnosed with TCS on February 4,

> 2009 and underwent surgery February 16, 2009.

>

> My search began with an appt. at the urologist where I was diagnosed

> as having interstitial cystitis - even though my problem was

> retention. I was given a variety of meds, instillations, bladder

> stretching surgery, physical therapy, etc., but the problem remained

> and worsened.

>

> In addition, I have seen an internist, neurologist, rheumatologist,

> chiropractor, accupuncturist, etc. I have had blood drawn, taken

> many vitamins, minerals, and herbs, and been detoxified. I have been

> prescribed neurotin and cymbalta.

>

> I told each doctor that there was a connection between my bladder

> problems and my burning, aching, increasingly numbing feet and legs.

> Each time I was politely dismissed. My internist thought the

> numbness and burning might be due to hypothyroidism, as I was

> somewhat low. After 5 months of thyroid meds, my internist decided

> that hypothyroidism was not responsible for the burning and

> numbness. That same day, I had an appt. with the urologist (same

> group I started out with) for a urodynamics test.

>

> I went through my story one more time. Suddenly, as the doctor was

> conducting the test, it was like a lightbulb came on. She told me

> she thought she knew what the problem might be. She made a call to a

> neurosurgeon, helped me get an appt. and the rest is history.

>

> It has just been 9 days since surgery, but I'm feeling confident.

> The burning and numbness are still present, but I had this awful

> sensation of my entire legs falling to sleep every time I lay down

> at night. That has gone away, and I honestly feel as though my

> bladder has already improved.

>

> I would very much like to converse with another adult who has had

> the surgery.

>

> I truly wish everyone well. This has been a most difficult journey

> for me, and I would love to be able to help someone else along the

> way.

>

>

>

>

[Guest guest]

Hi Florence,

Welcome to this group. I hope you find some helpful information and support from this group. I am 74 years old and was diagnosed with bronchiectasis at age 61.

What is your diagnosis? Did your doctor mention anything about ways to clear the mucus

from your lungs? That is important to prevent infection and allow you to rest well at night I would be hesitant to stop any medication that your doctor prescribed without first discussing the reason you want to stop the medication. I also have a problem gaining weight and do not have a good appetite. I eat small healthy meals frequently and use a nutritional supplement drink to try to maintain my weight.

I hope this helps.

Norma

Subject: (unknown)To: bronchiectasis Date: Sunday, April 5, 2009, 12:00 AM

Hi, Everyone:I have had this bronchial disease for several years now. (I'm a 63 year old female). The cough was initially the problem for which my pulmonary doctor prescribed prednisone. Last September, mucous became a major issue. I could not go to sleep at night because I had to keep clearing my throat. That's when I began taking sleeping pills. My doctor did a broncosopy (spelling). They found that I had an asperigillus fungus which they treated me with an antifungal medication. This medication caused me to have a lack of appetite. I have lost 14 lbs. since last September. I took the medication for two months and stopped. Then, the cough became worse. I now on a third dose of this medicine and have been on it for 11 days but am going to stop because I'm not hungry. I can't afford to lose any more weight. In desperation, I thought I would

contact a group to see if anyone has had similar problems and wondering if you are taking any type of herbal medications or other prescription medications that help you significantly with mucous and cough?Hope to hear from anyone soon. Thank You!

[Guest guest]

Hi Karuna,

Nina, a member of this group has a great description of the different types of

tethered cord on her website so am going to give you the link --

http://www.btinternet.com/~tetheredcordresources

I myself had surgery for a tight filum but there are many in this group who have

had tc with a lipoma. It is imperative you do see an NS especially as it sounds

like you have neurological symptoms (leg weakeness, bladder retention). Please

make sure you are seeing a NS who is experienced with TC -- this is very

important!!! I would also recommend you get more than one opinion on your

condition. If you post your location there may be someone in the group who

knows of a good NS experienced in tc in your area.

It is not uncommon to start experiencing symptoms after child birth, an injury

or just plain getting older.

Dee

To: tetheredspinalcord

From: johnkaruna@...

Date: Sat, 3 Oct 2009 14:24:10 +0000

Subject: (unknown)

Hello, I'm Karuna, I have SBO, but recently found i have a

tethered cord at S2 attached to a lipoma, symptoms are urinary retention, pain

on left hips and knee, after i had my 2nd baby(long 10hrs) normal birth, i had

urine retention and weekness in my left leg. that was 6 yrs ago. but the leg

came around , but would give me pain after a tiring day. Could anyone tell me

the difference of my condition and filum terminale? anyone going through , or

gone the same path? i'm yet to see a NS, i don't know if the surgery would

benefit? thanks for the support,

karuna

[Guest guest]

Thankyou Dee, I am in touch with Nina, i'm from Leicester , uk

Subject: RE: (unknown)

To: tetheredspinalcord

Date: Saturday, 3 October, 2009, 5:12 PM

 

Hi Karuna,

Nina, a member of this group has a great description of the different types of

tethered cord on her website so am going to give you the link --

http://www.btintern et.com/~tethered cordresources

I myself had surgery for a tight filum but there are many in this group who have

had tc with a lipoma. It is imperative you do see an NS especially as it sounds

like you have neurological symptoms (leg weakeness, bladder retention). Please

make sure you are seeing a NS who is experienced with TC -- this is very

important!!! I would also recommend you get more than one opinion on your

condition. If you post your location there may be someone in the group who knows

of a good NS experienced in tc in your area.

It is not uncommon to start experiencing symptoms after child birth, an injury

or just plain getting older.

Dee

To: tetheredspinalcord@ yahoogroups. com

From: johnkarunayahoo (DOT) co.uk

Date: Sat, 3 Oct 2009 14:24:10 +0000

Subject: (unknown)

Hello, I'm Karuna, I have SBO, but recently found i have a tethered cord at S2

attached to a lipoma, symptoms are urinary retention, pain on left hips and

knee, after i had my 2nd baby(long 10hrs) normal birth, i had urine retention

and weekness in my left leg. that was 6 yrs ago. but the leg came around , but

would give me pain after a tiring day. Could anyone tell me the difference of my

condition and filum terminale? anyone going through , or gone the same path? i'm

yet to see a NS, i don't know if the surgery would benefit? thanks for the

support,

karuna

[Guest guest]

Karuna,

The birthing position (lithotomy) is known for making TC symptomatic. So,

it is not surprising that you developed symptoms after giving birth to your

daughter.

When TC is caused by a spinal lipoma, there is a fatty deposit in and around

the spinal cord that keeps the cord from moving freely. When TC is caused

by a fatty or tight filum, the filament of tissue that extends from the

lower end of the spinal cord keeps the cord from moving freely. The surgery

to untether a filum is the more simple/less risky of the surgeries because

(I think) they just snip the filum to release the cord. There aren't nerves

in the filum. Thus, the risk of damage is less than when working on the

cord itself. When a lipoma is involved, it has to be resected from the

cord. There is always a chance of damaging the cord when removing the

lipoma. Lipomas typically occur at some point on the cord (yours at S2)

where there is a risk of damaging the cord during removal.

One thing to know about untethering surgery is that the point of surgery is

to stop any further neurological deterioration - NOT to get back what you

have lost. While some people will get functional return after an

untethering, that is not the norm, and you can't go into surgery with that

purpose in mind. If you get functional return after surgery, its just like a

bonus.

What made them look for TC now? Did you develop some new problems that they

were looking for a cause? As opposed to 6 years ago when you developed the

weakness in your leg after giving birth to your daughter? I'm guessing you

have had a urodynamic study done that diagnosed the urinary retention. (If

not, you should have one done before making any decisions regarding

surgery. Are you self-cathing to deal with the urinary retention? If not,

how are you dealing with it? Urinary retention can be very dangerous. It

can lead to hydronephrosis, reflux (even to the point of requiring ureter

reattachment), and bladder distention (which is particularly bad if you have

a neurogenic bladder).

The decision to have surgery is a very personal one. Unfortunately, there is

no right answer. Keeping in mind that the point of untethering is not to

reverse neurological deficits, but to prevent further deterioration... If

you have not had any neurological deterioration (instead, it sounds like you

have had neurological improvement over the past 6 years), then you may want

to have your MD monitor your neurological status regularly to catch any

changes early (physical exam, urodynamic studies, EMG, etc). If you have

been experiencing progressive neurological deficits, then you may want to do

the surgery to stop the progression. Performing untethering in adults purely

for pain control is contraversial. While some MDs will do it, and some

adults have gotten relief of their pain, some MDs say that by the time you

are an adult, the body has kind of grown into its stretched cord. The body

managed to grow to full height without any major neurological deficts, and

to release the cord at this point will screw up the way the body has adapted

to the stretched cord. Releasing the cord may (or may not) move the end of

the cord up to a normal (or more normal) position, but it cannot change

where all the nerves have grown when the cord was stretched. And changing

the endpoint of the cord could put stress on nerves that are not in a normal

position, which can cause pain of its own.

Another consideration is retethering. If you are not experiencing

neurological decline, then the risk of retethering may be a concern for you.

Too many MDs will tell you that adults cannot retether because they are at

their adult height and that children cannot retether once they reach their

adult height. This is NOT true. And just because a MD has never seen it is

no reflection on the possibility. They may not have performed enough

untetherings to have had a large enough population to experience a retether.

If their patient did retether, they may have thought it a bad reflection on

their surgeon's skill and chosen to go to a different surgeon for future

treatment. Some MDs have poor follow up. Meaning, have they never seen their

patients retether because they are not looking for it? Do they follow up

with their patients (and not just post-op follow up, but follow up over time

to see the outcome of their surgery). People move and a retether may be

seen my a surgeon in their new local area.

That's my basic primer. Sorry there is no easy " yes, do it " or " no, don't

do it " answers. I also have SBO at L2 and have been untethered twice (my

initial tether was caused by diastematomyelia). I retethered 4 months after

my initial surgery. I developed hydrosyringomyelia after my second

untethering and had surgery to correct that 6 months after the second

untethering. I also developed arachnoiditis after my initial untethering

(another possible complication, I forgot to mention, for which there really

is no cure and is very painful).

The final thing to keep in mind is that people that typically remain on

support lists like this one have had complications. There are many people

that have joined the list, had a successful untethering, and then left to

enjoy their life. Many of the successful outcomes typically leave the list

once thier recovery from surgery is complete.

Regardless of you decision, I would definitely get more than one opinion.

And make sure the surgeon has a lot of experience dealing with TC - and TC

with lipoma in particular.

Jenn

On Sat, Oct 3, 2009 at 10:24 AM, karuna ajish wrote:

>

>

> Hello, I'm Karuna, I have SBO, but recently found i have a tethered cord at

> S2 attached to a lipoma, symptoms are urinary retention, pain on left hips

> and knee, after i had my 2nd baby(long 10hrs) normal birth, i had urine

> retention and weekness in my left leg. that was 6 yrs ago. but the leg came

> around , but would give me pain after a tiring day. Could anyone tell me the

> difference of my condition and filum terminale? anyone going through , or

> gone the same path? i'm yet to see a NS, i don't know if the surgery would

> benefit? thanks for the support,

> karuna

>

>

[Guest guest]

Thankyou so much for all the information and support. I had recurrent uti and

went for urodynamics which showed up the retention and a slight neurogenic

bladder, they quickly put me to self cath,   I still haven't seen the NS,  as u

said since there is a lipoma involved i don't know how it is going to be, will

the laser surgery be more effective interms of not damaging the cord?

>

>

> Hello, I'm Karuna, I have SBO, but recently found i have a tethered cord at

> S2 attached to a lipoma, symptoms are urinary retention, pain on left hips

> and knee, after i had my 2nd baby(long 10hrs) normal birth, i had urine

> retention and weekness in my left leg. that was 6 yrs ago. but the leg came

> around , but would give me pain after a tiring day. Could anyone tell me the

> difference of my condition and filum terminale? anyone going through , or

> gone the same path? i'm yet to see a NS, i don't know if the surgery would

> benefit? thanks for the support,

> karuna

>

>

[Guest guest]

I'm not familiar with laser surgery for TC.

Jenn

On Sun, Oct 4, 2009 at 11:25 AM, karuna ajish wrote:

>

>

> Thankyou so much for all the information and support. I had recurrent uti

> and went for urodynamics which showed up the retention and a slight

> neurogenic bladder, they quickly put me to self cath, I still haven't seen

> the NS, as u said since there is a lipoma involved i don't know how it is

> going to be, will the laser surgery be more effective interms of not

> damaging the cord?

>

>

>

> >

> >

> > Hello, I'm Karuna, I have SBO, but recently found i have a tethered cord

> at

> > S2 attached to a lipoma, symptoms are urinary retention, pain on left

> hips

> > and knee, after i had my 2nd baby(long 10hrs) normal birth, i had urine

> > retention and weekness in my left leg. that was 6 yrs ago. but the leg

> came

> > around , but would give me pain after a tiring day. Could anyone tell me

> the

> > difference of my condition and filum terminale? anyone going through , or

> > gone the same path? i'm yet to see a NS, i don't know if the surgery

> would

> > benefit? thanks for the support,

> > karuna

> >

> >