new member

Report post · January 11, 2003

Hi Louis..My goodness. Your family has unfortunately seen more than its

share of Nf2. God Bless you.

Do ask questions and post your concerns. Everyone is very helpful here.

Carol

land

Report post · January 13, 2003

Thank you Carol, the idea is that I know that I'll learn lots of things by

sharing experiences with you all

Re: New Member

> Hi Louis..My goodness. Your family has unfortunately seen more than its

> share of Nf2. God Bless you.

> Do ask questions and post your concerns. Everyone is very helpful here.

> Carol

> land

>

Report post · January 13, 2003

Thank you Carol

Re: New Member

> Hi Louis..My goodness. Your family has unfortunately seen more than its

> share of Nf2. God Bless you.

> Do ask questions and post your concerns. Everyone is very helpful here.

> Carol

> land

>

Report post · April 27, 2003

Welcome . We are 50 miles west of Houston in Waller. Our son, ,

almost 16 now, has bilateral ANs and 100s of spinal cord tumors. I know you

will find lots of information here. We can totally relate to your statement

about not really having anyone to talk to about NF2. We would be lost if it

were not for the knowledge and experiences that the NF2 Crew share with one

another.

Rhonda Becvar

Waller, TX

Report post · February 5, 2004

Hi!

I am new to the group and have so many questions--don't want to overwhelm but

here goes... I want to say I am so glad I have found this group!

I am the one who started the poll about birth control pills for blood

control.

I'm 35, I have had 2 hysteroscopic resections (2000, 2003) and I still suffer

from heavy, long periods. My fibroids are a tennis ball (intramural), a

raquetball, and a few golf balls too. I look thin but my uterus is 10 weeks and

I

also feel pressure on my bladder and sometimes bowel, and sometimes pain during

sex. I would like to have a baby...I have a serious boyfriend but I am not

married.

Anyway I guess I am leaning towards an eventual myo but would like to put it

off or avoid altogether if possible. I also would like to get a new doctor or

2nd opinion -- any suggestions in the Chicago area?

My main question is whether I should keep taking the pill. I started on Jan 9

(the first day of my period as my Doc said) and I have been bleeding since

then (very slight right now, but it was heavier than without the pill around day

20--almost hospital-worthy).

I am supposed to start back up tomorrow. It's Ortho TriCyclen Lo. I just

don't understand why I am supposed to start on what should be the 1st day of my

next cycle (any doctors want to answer this?) rather than day 7 of my 'cycle.'

Also it seems counter-intuitive to take hormones when they help fibroids grow.

During these 7 days off the pill (sugar pills), the bleeding lessened and I

feel better emotionally/physically too.

I am supposed to try this for 3 months before giving up, but if it was worse

on the pill than off the pill for the first month, that seems to me like

chances are it won't work in 3.

Any thoughts?

Also wonder if any of you have been able to lessen bleeding with diet

(lowfat), exercise etc? I like to exercise but it has been worsening the

bleeding, so

I guess I need to switch to something less vigorous.

I think that's it for now. I am so glad to be part of this support

group...any thoughts would be welcome.

Cyndi in Chicago

Report post · February 27, 2004

Hi Becky,

I did NOT stop BC before my surgery...I have never heard of Drs.

telling you to do that. In fact, my Dr. insisted I stay on them

(before, during & after surgery) as I am not supposed to try to get

pregnant for at least 6-9 months following my surgery.

Good luck with everything!

Cindy

> One more quick

> question...is it typical for the doctor to tell you to

> stop taking BC a week before surgery? I am worried

> about heavy bleeding pre-op and my iron levels

> dropping.

>

> Thanks and have a good weekend,

> Becky

Report post · August 30, 2004

What would be making her case so much more complicated than any of the rest?

s.

Re: New member

I really hope we don't have to go the surgery route, we have an apt

today at 2:40 to go back in and put casts back on. Dr Schwend did

say he had another little boy that was as bad as Addisyn if not

worse and he kept him from having surgery. He is pretty

conservative when it comes to surgery so I know he will do whatever

he can to keep that from happening. I am the one who thinks she is

going to have surgery. I guess I just want her feet to change

within the normal perameters of treatment and that just isn't

possible. She'll have to do much more casting than the 6-8 wks.

Her feet look great from what they were when she was born, it's just

the creases she has on the base of her foot are still really bad.

We live in New Mexico and we are going to the best doctor in town.

He has gone to Dr Ponseti's seminars and is certified so I do trust

him. In fact if he questions any part of treatment for a child he

has contacted Ponseti in the past to get his opinion. I just think

he doesn't want to give us false hope that surgery is totally out of

the question. Anyway, we will let you all know how it goes and

thanks for the support, it is much needed!!

Mia

> > > > Hi everyone, I am a new member the the group and just wanted

to

> > > give

> > > > some background. My daughter Addisyn is just over 2 mos old

> and

> > > was

> > > > born w/ bilateral club feet. She has been in casts since

she

> > was 2

> > > > wks. We had the tenotomy done 3 wks ago this Monday and we

> just

> > > got

> > > > into the DBB today. If anyone has some tips about the DBB

or

> > > things

> > > > to look for it would be greatly appreciated. This is

> definately

> > a

> > > > huge adjustment from the freedom she had in the casts!!

Report post · September 8, 2005

ine

So sorry for your situation. How old is your son and how long has he been

havig problems? I am sure it is devasting for you having to feel your life

ins in danger from your BP

Jean

Report post · September 8, 2005

Hi, ine

Welcome to the group. I know you will find many caring and supportive

folks here. Although I'm sure others will say the same thing, let me be the

first to suggest you read two books: Stop Walking on Eggshells and

Co-Dependent No More. Both books are real gems and of great help to many of

us in understanding some of the dynamics involved with our bp kids.

I can tell from your post that you love your son very much and that it must

be extremely distressing to hear from another that your life is in danger

and not to allow him in your home.

Although things have been hellish, let me give you some hope: as you learn

and grow and learn to deal with your emotions and set boundaries, you will

find that you are able to separate yourself, both emotionally and physically

from your son and that you can obtain a measure of peace and a life for

yourself separate from your son.

Best to you,

Dot

Report post · September 8, 2005

my son is 30 and has just been diagnosed for about two weeks...we all

thought it was his bi polar....i am just adjusting to everything...he has lived

with me for 8 years and now has gone to his dad " cause they understand him

better " ... " they do not ignore him " and he can become independent...etc...the VA

hospital just gave up on him and discharged him...he does not want to go into

therapy...and they won't do anything else...

pauline

Report post · September 8, 2005

thanks dot, i am trying, can you tell how much the books are and where i can

get them??? he just about emptied all my funds...i have to stay alive and

pay bills....to include huge phones he has incurred! thanks for the kind

thoughts and words of encouragement...

pauline

Report post · September 8, 2005

Hi ine, welcome to the group. I don't post often

but read everyday. It has been very helpful and

reassuring that I am not alone.

I'm so sorry to hear about your troubles. Those are

pretty big diagnoses. How old is he and has he been

put on medication since hospitalization? I'm guessing

he is a young adult since schizophrenia generally

manifests itself in late teens, early twenties. Have

you heard of NAMI? I have not attended meetings with

this organization but plan to in the near future.

Memb ers of this group that attend seem to become more

empowered after attending meetings. Hopefully more

members can share info on it with you. Glad you

joined us.

--- asahanna@... wrote:

>

> just wanting to introduce myself, i am pauline...i

> have a grown son with

> bpd, who currently has been hospitalized five time

> in four months at the VA

> hospitals...he was just diagnosed with this as he

> also is bi polar,

> schizophrenic, ptss...he currently is some where

> (hopefully) in another state after i was

> told my life was in danger and not to let him come

> home again...this has

> been like a living h___ and i am so confused and

> worried...i just want to hear

> more and learn more.....

> pauline

> a mom that wants help too

>

> [Non-text portions of this message have been

> removed]

>

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store.yahoo.com/redcross-donate3/

Report post · September 10, 2005

Hi ine,

Sorry for what you are going through. Think most of us have lived in the web

before and on " eggshells. " Not the happiest of times.

Hope you can relax, put things in perspective and detach while your bp son lives

out of state.

How old is he? Does he call, or are you on a hiatus? I assume from your

message he abused you.

Wishing you peace and calm,

Carol

-------------- Original message --------------

>

> just wanting to introduce myself, i am pauline...i have a grown son with

> bpd, who currently has been hospitalized five time in four months at the VA

> hospitals...he was just diagnosed with this as he also is bi polar,

> schizophrenic, ptss...he currently is some where (hopefully) in another state

> after i was

> told my life was in danger and not to let him come home again...this has

> been like a living h___ and i am so confused and worried...i just want to hear

> more and learn more.....

> pauline

> a mom that wants help too

>

Report post · November 3, 2005

Hi Jackie,

I can relate to your situation. I started my period at 12 and had cycles that

sound just like yours for a couple of years until my gyn put my on birth control

pills. Which I stayed on until I was 26 and was ready to start planning a

family. Of course, as soon as I was off the pills the crazy cycles started

again, only this time I was skipping months at a time instead of bleeding for

months.

After 2 yrs of dealing w/ this, DH and I pursued infertility testing. I was

just dx w/ PCOS and a T-shape uterus in July, and I just had the lap/hyst w/

metroplasty 4wks ago. While we have diff MAs, the surgery is basically the

same. I would be glad to share more specific details if you'd like.

T-shape remodeled 10/06/05

goldengirl1128 goldengirl1128@...> wrote:

Hi!

My name is Jackie, I'm 21 and I was recently diagnosed with having

a bicornuate uterus and polycystic ovarian syndrome. I got my period

when I was 15 and from that age on, I have had an extremely irregular

cycle, sometimes lasting up to 9 months or more. This coming

Christmas season I am due to have surgery removing some of the tissue

in my uterus that is cuasing some of the problem, I believe I'll be

having a Metroplasty so if anyone here has advice or a similar

condition just let me know.

thank you!

Share bookmarks: http://groups.yahoo.com/group/MullerianAnomalies/links/

Share files:

http://groups.yahoo.com/group/MullerianAnomalies/files/

The Congenital Uterine Anomalies Home Page:

http://www.wegrokit.com/uterineanomalies/

es/

The Congenital Uterine Anomalies Home Page:

http://www.wegrokit.com/uterineanomalies/

Report post · November 3, 2005

-

I really can't tell you how happy I was to read your reply to my

post. To know that someone has, and has gone through what I have to

go through really makes me feel a lot better because I've been really

nervous about the whole situation lately (it keeps me up at night).

Before I have the surgery, my gyno is putting me on Biest and

Progesterone to regulate my ovaries, and next week I'm actually

meeting with a surgeon for a consultation. I'm basically scared

about the sugery itself, and the recovery. I was wondering if you

went on either of those pills to regulate your period. I too was on

birth control for about 3 months, but I took myself off of it becuase

it made me depressed and I'm not too willing to go back on it, which

is why I will be taking Biest and Progesterone. I was wondering what

you are doing now to regulate your cycle and how the surgery went.

THANK YOU again, it feels great to have someone to talk to

-Jackie

Report post · November 15, 2005

Hello Laptwo,

Welcome to the board. This is a very safe place to share your day and

the experiences your daughter has. You are not alone and you will find

we all have similar fustrations.

My dau, age 17, also felt she was stupid and ugly at 15. Just keep

complimenting your daughter, find one thing you think is beautiful and

let her know. I tell my dau she has a perfect nose. Give her something

to latch on to. I hope you are able to join in your daughter's

counseling and that her counselor is familiar with BPD. If you can

not, I liked the idea, write a letter to counselor. I wish I had never

let my dau see one on her own... giving her privacy. My dau fooled

them all and I am sure she made me look like a bad guy.

>

> Hello. I have a 15 year-old daughter who is currently in counseling.

> She has displaying most of the signs of BPD. I have been trying to

> educate myself on the disorder. It is like living with two different

> people. One minute she is my little girl and the next, she can be

> totally out of control. At first, I didn't want to face reality with

> the cutting and her mood swings, but my goal now is to do what I have

> to do to save her before it is too late. I think (not only because

> she is my daughter) she is very intelligent and beautiful. She is

> always downgrading herself as stupid, fat and ugly.

>

> I am hoping with some support, I can help her.

>

> Thanks for listening.

>

Report post · November 15, 2005

Laptwo,

It is up to your daughter to help herself. You can lead her to water

(therapist) but you can't make her drink.

Good luck to you,

Many of us have been there.