hi

[Guest guest]

Right on!Eileen-- Holt wrote:Return-Path: <sentto-4056817-13103-1150518525-ecbauer954=juno.com@...>Received: from mx03.nyc.untd.com (mx03.nyc.untd.com [10.140.24.63])by maildeliver17.nyc.untd.com with SMTP id AABCKHBH9ABLVGCJfor (sender <sentto-4056817-13103-1150518525-ecbauer954=juno.com@...>);Fri, 16 Jun 2006 21:28:47 -0700 (PDT)Received: from n12b.bullet.sc5.yahoo.com (n12b.bullet.sc5.yahoo.com [66.163.187.179])by mx03.nyc.untd.com with SMTP id AABCKHBH8ARPE4LSfor (sender <sentto-4056817-13103-1150518525-ecbauer954=juno.com@...>);Fri, 16 Jun 2006 21:28:46 -0700 (PDT)Comment: DomainKeys? See http://antispam.yahoo.com/domainkeysDomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima; d=yahoogroups.com;b=iXKogmIth/KMKwBsjxYqBQXISGRMz8kQIErQkYrjV3hKaJw4ca2Os/+cW4axT4Z4MahPkDDo/5tKj6P9XNDXzESGT8bVJo4LB4duQRk2OIG+IHBO6653zDg0534Qi5Ic;Received: from [66.163.187.120] by n12.bullet.sc5.yahoo.com with NNFMP; 17 Jun 2006 04:28:46 -0000Received: from [66.218.69.6] by t1.bullet.sc5.yahoo.com with NNFMP; 17 Jun 2006 04:28:46 -0000Received: from [66.218.66.103] by t6.bullet.scd.yahoo.com with NNFMP; 17 Jun 2006 04:28:46 -0000X-Yahoo-Newman-Property: groups-emailX-Yahoo-Newman-Id: 4056817-m13103X-Sender: maryholt12@...X-Apparently-To: bronchiectasis Received: (qmail 32263 invoked from network); 17 Jun 2006 04:22:57 -0000Received: from unknown (66.218.67.35) by m31.grp.scd.yahoo.com with QMQP; 17 Jun 2006 04:22:57 -0000Received: from unknown (HELO web30902.mail.mud.yahoo.com) (68.142.200.155) by mta9.grp.scd.yahoo.com with SMTP; 17 Jun 2006 04:22:57 -0000Received: (qmail 8793 invoked by uid 60001); 17 Jun 2006 04:22:51 -0000Message-ID: Received: from [142.177.114.104] by web30902.mail.mud.yahoo.com via HTTP; Sat, 17 Jun 2006 00:22:51 EDTTo: bronchiectasis X-Originating-IP: 68.142.200.155X-eGroups-Msg-Info: 1:0:0:0X-Yahoo-Profile: maryholt12Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Sat, 17 Jun 2006 00:22:51 -0400 (EDT)Subject: Hi Reply-To: bronchiectasis Content-Type: text/plain; charset=ISO-8859-1Content-Transfer-Encoding: 8bitX-ContentStamp: 12:6:2445150577X-MAIL-INFO:13e9e9e190c0e1ada0e500c0197109d971bd8105c171a5bd818150a595d50024943524d499a41dd4ed356df4898461a950ed20b08d216175f094381504150474117414d974719d80a935b1b454015d655489c4051d414579a5a564441064ad1090910090207041b980e011c17134d959a525010dd549d9814dc9a4a1ad9544f524d5e909ad813df9eddd54404030d1307ddd415d41ad7051c924b124151db0c965313450b4997124f4d489d18065c4dddd94f4406dd438d439458514b150404134309de9605db5c114e1858001591460c1f58d4401440929X-UNTD-Peer-Info: 66.163.187.179|n12b.bullet.sc5.yahoo.com|n12b.bullet.sc5.yahoo.com|sentto-4056817-13103-1150518525-ecbauer954=juno.com@...X-UNTD-UBE:-1Dear ,I require portable 02 (on oxygen 24/7) and take anebulizer with me if away from home for an extendedperiod. Sandy is right many people do use nebulizersor inhalers due to asthma, etc. Sometimes I see otherswearing 02. Portable 02, aerosol machine and nebs,inhalers and physio allow me to experience life. Ienjoy getting out. As my infectious disease specialistonce said, “people cannot live in a bubble.” We allneed a change of pace. I hope you will be able totravel and enjoy time away from home. Please, do notworry about the nebulizer. When asked about my lungdisease, 02, nebs, etc it allows me to educate othersabout bronchiectasis. Hugs:0) Liz e-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabeth:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~__________________________________________________Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com ------------------------ Yahoo! Groups Sponsor --------------------~--> See what's inside the new Yahoo! Groups email.http://us.click.yahoo.com/8bWpJB/bOaOAA/xGEGAA/VzSolB/TM--------------------------------------------------------------------~-> Yahoo! Groups Links<*> To visit your group on the web, go to: http://groups.yahoo.com/group/bronchiectasis/<*> To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/

[Guest guest]

Hi

Did you write that amount of morphine correctly? My brother-in-law just

recently died from cancer, was in absolute agony due to the cancer and bowel

obstruction which caused a gastro tube to be placed - and he wasn't on that much

morphine just before he passed - it just seems to be an extreme amount to be

on-add to it you state it doesn't help...wow!

Have they tried tapering you off these drugs since they aren't helping you?

Sounds like you are really getting the run-a-round; a panel of fourteen doctors?

Has the hospital you are going to ever operated or treated anyone with a

tethered cord? Even adding up all the specialists I've seen over ten years,

they don't count to fourteen specialties...trying to figure out what exactly

they think they're up against with your condition, which from what you describe

sounds like a very straight forward tethered cord we/lipoma...have you

considered going somewhere else for treatment? Many people on the list can help

w/giving you names if you tell us where you are (NY I'm assuming as you stated

" Queens " hospital - or maybe you're in the UK? If so, we have members there

also.)

So sorry to hear all you are going through, the meds and if the dosage is

correct, that amount must wipe you out. I can't even fathom a doctor putting

someone on that much when it doesn't work for them.

Let us know how we can help..

Kathy

hi

hi all just wanted to say high aND HOW NICE IT IS TO FIND THAT THERE

OTHER GOING THROUGH THE SAME AS ME. I AM A SINGLE MUM OF 4 . I AM 37. I

WAS DOAGNOSED WITH MY ILLNESS FOUR YEARS AGO BUT HAVE HAD PAIN ALL MY

LIFE BUT SINCE I HAD MY YOUNGEST SON 6 YEARS AGO MY PAIN HAS GOT WORSE

FAST I HAVE TRY THAT MANY TABLTES TO MANY TO COUNT .I AM KNOW ON 400MG

OF MORPINE SULPHATE SLOW REALEASE AND 10MG INSTANT REALEASE MORPINE

SULPHATE SIX TIMES ADAY OR WHEN NEEDED . EVEN WITH THIS MEDIcation i am

still in pain .i have got to go to queens square neuro hospital to sit

in front of a panel of 14 doc etc to talk about my illness and what op

they feel is best and if i will keep my bladder and bowel .is there

anyone going through the same as me . i have spina biffita occulta with

a limpoma at the bottom of my spina and a theathered cord . thanks for

taking the time to read this xx

[Guest guest]

Dawn,

I have a few ? about your surgery and tell you my situation if you

are interested feel free to email me playn4keeps14 at the popular aol.I'm 43

female had first detethering at age 29,no problems at all before that have 4

children including twins natural births.I look forward to hearing from you.

Marjorie

[Guest guest]

Hey Dawn...So very sorry about your cath news. I worked on a rehab unit for

many years and this was often an issue. Most people found it not as bad as

they were anticipating and I pray you will find the same. Good luck and keep

us posted on your post surgical course.

Randee

In a message dated 10/23/2006 4:00:07 P.M. Eastern Daylight Time,

dwn1501@... writes:

hi all

heard from the doc on friday . they have decided to go ahead with my op

de-teather the spinal cord and reduce the lump in size .

anyone who has gone through this could u please tell me as much as u

can about the op,the pain,the recovery etc as as much as i want it done

i cant help but be scared .

i got some bad news that i was not expecting and was wondering if

anyone else has the same problem . the doc has told me that my bladder

is to big and that caus i keep getting water infections i need to start

self catherterize for the rest of my life . if i dont i will end up

with kidney failer . but he also said that could happen still but later

rather than sooner.

if anyone could help i would be ever so grateful

dawn xxx

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email

kathy@...,michelle@..., rick@...

[Guest guest]

I wish there were some way that you were able to have your IVs at home. Is there anyway that the government will cover this for you?

Hi ,

Thanks for your mail and good wishes. Yes, I wish I could get home IV's, for many reasons. Sometimes I have to wait too long for a hospital bed and my lungs suffer as a result. I have asked my specialist many times about home IV's, but he thinks that I am better off going into hospital. Some of the hospitals in Australia, do have a "hospital in the home" program, which allows their patients to have home IV's. I would have to consider changing my specialist and hospital, which isn't always that easy. I need to look into it further.

I'm sorry to hear that you (and your Dad) haven't been too well. I hope you enjoy the rest of the festive season. I wish you good health, happiness, and better things to come in the New Year.

Take good care.

Love Bunny

[Guest guest]

hope u all dont mind but i need to have a moan .

went to my see my consultant again today to be told that for the third

time that i have feel through the next i am so angry and upset .i am

under queens sqaur hospital in london england . i last see my

consultant in october where i atended a compex spinal clinic where a

group of doctor spoke to me etc about my illness and then decided that

i should have a de-theather . i recieved a letter on the 20 october

saying i was on a 3 month waiting list and that one of his staff would

be in touch. since then after sending numerous emails letter faxs i

hadnt heard nothing, so i phone the hospital and refused to get off the

phone until i was given am appointment to see my consultant . i see my

consultant today to be told i had feel through the net . its ok for

these doctors etc they can go home and forget while we have to try and

cope with our illness and bringing up a family . has anyone on here

been under the same hospital and had the same problem or had the same

problem but under a different hospital.would love to hear from u if u

have

[Guest guest]

Hi Dawn

I am in Bristol, UK, and had my detethering at Frenchay with Ian Pople. Are

you able to get a referral down here, rather than to Queens Square? Are you

able to go private and see the consultant that way and guarantee a date?

If you want to talk privately my email is on my website at

www.btinternet.com/~tetheredcordresources

Best wishes

Nina

--

>

>

>

>

> hope u all dont mind but i need to have a moan .

> went to my see my consultant again today to be told that for the third

> time that i have feel through the next i am so angry and upset .i am

> under queens sqaur hospital in london england . i last see my

> consultant in october where i atended a compex spinal clinic where a

> group of doctor spoke to me etc about my illness and then decided that

> i should have a de-theather . i recieved a letter on the 20 october

> saying i was on a 3 month waiting list and that one of his staff would

> be in touch. since then after sending numerous emails letter faxs i

> hadnt heard nothing, so i phone the hospital and refused to get off the

> phone until i was given am appointment to see my consultant . i see my

> consultant today to be told i had feel through the net . its ok for

> these doctors etc they can go home and forget while we have to try and

> cope with our illness and bringing up a family . has anyone on here

> been under the same hospital and had the same problem or had the same

> problem but under a different hospital.would love to hear from u if u

> have

>

>

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

Ms Nina Bunton

MSc Admissions Coordinator

MSc Programme Administrator

Examinations Secretary

Department of Electrical & Electronic Engineering

Merchant Venturers Building

Woodland Road

Bristol BS8 1UB

Tel: +44

Fax: +44