Hello From New Member

[Guest guest]

hi im connie from Pa i have Familial Spatic Pararesis, cancer, and a

spine surg that left me not able to walk,i have a lote of trouble with my

bowl wich i now have under control, and i am also 44 and not a very good

typer so sorry about all the mistakes,and im a mother of a 15yr old son who

is the sunshine of my life.

Hello from new member

> Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself

> together for my family, but feel very lonely and depressed due to

> chronic illness. I have MS and had a stroke this summer, followed by

> gastroparesis, which continues to be very difficult to get under

> control. I felt I had to start reaching out for some support, or go

> crazy....I would love to meet any/all of you and would appreciate any

> support you can give. Thanks.

> in PA

>

>

>

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[Guest guest]

I just e-mailed and i want her to know, i will be leaving in a couple

hours for delaware and wont be back till sunday.

Hello from new member

> Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself

> together for my family, but feel very lonely and depressed due to

> chronic illness. I have MS and had a stroke this summer, followed by

> gastroparesis, which continues to be very difficult to get under

> control. I felt I had to start reaching out for some support, or go

> crazy....I would love to meet any/all of you and would appreciate any

> support you can give. Thanks.

> in PA

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

> Message Archives-/messages

>

> Chat:- Scheduled Chats at

> /chat

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

>

> Personal Complaints or problems:-

> Please contact a moderator

> email: -owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into groups at your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

>

> To subscribe or unsubscribe please email:-

> -subscribe

> -unsubscribe

>

> This group is not intended to diagnose or treat illnesses. No one on this

> group is qualified to diagnose medical conditions. If you feel you need

> medical attention, seek the advice of a qualified physician.

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> When nothing is sure, everything is possible.

>

> --- Margaret Drabble

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hi connie thanks I'll catch up with after the weekend. thanks for the welcome. connie <dencon2001@...> wrote: I just e-mailed and i want her to know, i will be leaving in a couple hours for delaware and wont be back till sunday. Hello from new member> Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself> together for my family, but feel very lonely and depressed due to> chronic illness. I have MS and had a stroke this summer, followed by> gastroparesis, which continues to be very difficult to get under> control. I felt I had to start reaching out for some support, or go> crazy....I would love to meet any/all of you and would appreciate any> support you can give. Thanks.> in PA>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Being Sick Community>>> Message Archives-/messages>> Chat:- Scheduled Chats at> /chat>> Bookmarks:-> Add a website URL you have found useful.> /links>> Personal Complaints or problems:-> Please contact a moderator> email: -owner >> Subscription Details:-> 1) Individual email - means that every email sent to the list you receive.> 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email.> 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email.>> To modify your subscription settings please

visit:-> /join>> To subscribe or unsubscribe please email:-> -subscribe > -unsubscribe >> This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician.> ~~~~ *** ~~~ *** ~~~ *** ~~~~> When nothing is sure, everything is possible.>> --- Margaret Drabble>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>

[Guest guest]

this is a great group and i am sure you will make many friends. sorry you are having a rough time. we are all here to listen. evelynwahuber2003 <wahuber2003@...> wrote: Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself together for my family, but feel very lonely and depressed due to chronic illness. I have MS and had a stroke this summer, followed by gastroparesis, which continues to be very difficult to get under control. I felt I had to start

reaching out for some support, or go crazy....I would love to meet any/all of you and would appreciate any support you can give. Thanks. in PAcure cystic fibrosis

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

WENDY;; WELCOME TO THE GROUP;; IM VERY SORRY FOR ALL YOU HAVE & ARE GOING THROUGH;; THERE ARE SO MANY GREAT FOLKS HERE TO LISTEN & TO HELP WHERE THEY CAN;; YOU TAKE CARE; & KEEP YOUR CHIN UP HUGS DORT FROM MICHwahuber2003 <wahuber2003@...> wrote: Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself together for my family, but feel very lonely and depressed due to chronic illness. I have MS and had a stroke this summer, followed by gastroparesis, which continues to be very

difficult to get under control. I felt I had to start reaching out for some support, or go crazy....I would love to meet any/all of you and would appreciate any support you can give. Thanks. in PA

[Guest guest]

Thanks Dort, I appreciate the welcome. I've been feeling down and was really fatigued this week, but I saw my Psychiatrist on Tuesday and he started tapering me up onto a new med so I hope it will help. Feels great to be part of a supportive group too. Thanks. DOROTHY PETERSON <peterson.dorothy@...> wrote: WENDY;; WELCOME TO THE GROUP;; IM VERY SORRY FOR ALL YOU HAVE & ARE GOING THROUGH;; THERE ARE SO MANY GREAT FOLKS HERE TO LISTEN & TO HELP WHERE THEY CAN;; YOU TAKE CARE; &

KEEP YOUR CHIN UP HUGS DORT FROM MICHwahuber2003 <wahuber2003 > wrote: Hi I'm a 44 yr old married Mom of a 12 yr old, trying to hold myself together for my family, but feel very lonely and depressed due to chronic illness. I have MS and had a stroke this summer, followed by gastroparesis, which continues to be very difficult to get under control. I felt I had to start reaching out for some support, or go crazy....I would love to meet any/all of you and would appreciate any support you can give. Thanks. in PA

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

[Guest guest]

, sorry you are having problems again. I think I would seek out a lawyer

about that door falling on you. That is unreal that a public bathroom would be

in that bad of shape to cause injury to a person. Did your doctor that did the

surgery not talk to you about the advantages of using your own bone for the

fusion. . It has a better chance of fusing. At least that is what my neuro

doctor told me when i had my fusion. He recommended that I use my own bone.. I

had three levels of repair. On one level during my second surgery they did have

to go to bone bank. Only reason I had to use bone bank was they had already took

bone from both my hips. The level that bone for bone bank was used has failed

fusion. But I have trouble still in my cervical area. But it is due to

spondylosis, stenosis and thinning of my spinal cord. They are fixing to do an

new Mri on my cervical area. They have to keep an eye on the area where my

spinal cord is thinning.. Cant wait to see what the report says.

Hugs, Babs

[Guest guest]

Just in reference to the bone donor part. My doc used bone morphogenic

proteins, which is a substance that, according to what I read, does

just as well as the persons own bone, and saves you from having a donor

site. Now, I just had my fusion and I get my first post op x-ray on

the 21st, so I will let you guys know how it's working. But I sure was

glad to not have to deal with either a donor site or cadaver bone.

Strum

[Guest guest]

BabsWC-

Thank you for the advice. I have an attorney and he is working on

some stuff. The door was rigged, I had a camera phone with me (thank

goodness) and I got pictures that show how dangerous it was. It had

multiple drill holes and 2 separate locks (it had fallen before and

they just moved it up a couple of inches and redrilled). I was told

the my recovery would be easier if I used cadaver bone, because I

wouldn't have the incision and such on my hip. The bone was fusing

nicely before the fall. I had JUST been released from my collar and

had great X-rays 3 days before the door incident.

I am sorry that you have been through so much with your neck too!! 3

levels is alot! I am waiting to find out if my C7-T1 and C4 root is

bad. My neuro mentioned an artificial disc for my neck...that is

scary. My husband has one in his L4-L5 and now his facet joints are

messed up. It is so frustrating that me and my husband are both 31

with 3 young children!!

I hope everything comes out good with your tests...how long have you

had cervical issues??

Hugs-

>

> , sorry you are having problems again. I think I would seek

out a lawyer about that door falling on you. That is unreal that a

public bathroom would be in that bad of shape to cause injury to a

person. Did your doctor that did the surgery not talk to you about

the advantages of using your own bone for the fusion. . It has a

better chance of fusing. At least that is what my neuro doctor told

me when i had my fusion. He recommended that I use my own bone.. I

had three levels of repair. On one level during my second surgery

they did have to go to bone bank. Only reason I had to use bone bank

was they had already took bone from both my hips. The level that

bone for bone bank was used has failed fusion. But I have trouble

still in my cervical area. But it is due to spondylosis, stenosis and

thinning of my spinal cord. They are fixing to do an new Mri on my

cervical area. They have to keep an eye on the area where my spinal

cord is thinning.. Cant wait to see what the report says.

> Hugs, Babs

>

>

>

[Guest guest]

At 04:06 PM 12/6/07, you wrote:

>Hello,

>

>I am new to this group and I wanted to introduce myself.

>My name is

Welcome to the group . My name is Dave. I have had an

unsuccessful neck surgery with fusion, and 3 lumbar surgery /

fusions. For brevity my story can be found in the files section of

our group home page, under files, member storys, Dave's story. Here

is a link:

neck pain/files/Neck%20%26%20Back%\

20Pain%20Stories/

I wish you all the best in finding the root cause and cure for your

situation. You have found a great group where many understand, ,any

of us all too much. I do agree, unless too much time has past, or

you didn't report it to the food franchise, I would be filing a pain

and suffering suit, you have a very legit case. Many of us survive

without compensation because there is

no one to blame, but your situation is different. Glad you could

join us. Dave, Reading, PA

[Guest guest]

, The first time I did the surgery I had to wear a collaar too. But when I

had my second cervical fusion the doctor put in plates and I didnt have to wear

one. I was sure glad of that..

That is good that you have a lawyer..

Hugs, Babs

[Guest guest]

Osteofil is what they used for my fusion. Then collected the " local bone

fragments " and apparently ground them up, mixed them with the Osteofil, and made

a sponge out of the materials. This was placed - in two parts - in the fusion

area between the two verts.

Debbie Dahl

Oklahoma

[Guest guest]

At 01:32 AM 4/24/2008, you wrote:

>My name is Michele. I'm 37 and have been married for almost 14 years.

Hi, Michele, welcome to the group. It's 4:30am and I haven't slept a

wink so I'll write some now, and hopefully more later.

>I've been being very careful and have allowed myself to ask for help

>and demand more from the kids. I'm finding, though, that I'm still

>having so much pain. I'm second guessing having surgery in the first

>place. I had my first recheck on Monday (Tuesday was two weeks). He

>took out the sutures and said that although it's not completely

>uncommon to still have this much pain,

I've had 4 surgeries since 1983. 2 alone in the year 2000. In 2000

I had discs removed, 4 levels fused in my lower back, and a few

months later 2 fused in my neck. I also had my Dura torn and

repaired so I can relate. It is not uncommon to still have pain only

2 weeks later. What you had is very serious surgeries. It takes time

to heal. And in some cases such as my neck surgery, it never

stops. I ended up on disability due to five more years of chronic

pain. Now it's up to 8 years.

>Another thing I've had issues with is going to the bathroom. I take a

>diuretic for my blood pressure so I've never had issues urinating.

>Now, I'm having to push so hard just to urinate that my head and back

>hurt. Not to mention that it's the same with my bowels. It's not due

>to constipation from the pain meds because this started the evening

>of my surgery so it was immediately after my surgery.

The immediate post surgery issues with bodily functions are due to

anesthesia. After that it's from pain meds. Since I am on 24 x 7

pain and other medications I need to take medication to allow me to

urinate, and lots of fiber and supplements for bowel movements. If

you read the side effects of your medicines many do cause

constipation. Hopefully you will find a little less pain, but it

will be quite some time until it goes away. The fact they gave you

something for nerves is great. Often you'll get nerve pain that is

different from the original pain but still very painful. One thing

that really works for me is a ice pack, wrapped in a towel on the

area of the pain. I still use several a night. They can be found in

a drugstore, usually a blue gell type pack. Buy 2-3 so you'll always

have a cold one. Hope this helps for now. If you go to the main

page of our group, then do to documents I think, then members

stories, then Dave you can find my whole back / neck surgery. Take

care. Dave Reading, PA

[Guest guest]

At 01:32 AM 4/24/2008, you wrote:

>My name is Michele. I'm 37 and have been married for almost 14 years.

Hi, Michele, welcome to the group. It's 4:30am and I haven't slept a

wink so I'll write some now, and hopefully more later.

>I've been being very careful and have allowed myself to ask for help

>and demand more from the kids. I'm finding, though, that I'm still

>having so much pain. I'm second guessing having surgery in the first

>place. I had my first recheck on Monday (Tuesday was two weeks). He

>took out the sutures and said that although it's not completely

>uncommon to still have this much pain,

I've had 4 surgeries since 1983. 2 alone in the year 2000. In 2000

I had discs removed, 4 levels fused in my lower back, and a few

months later 2 fused in my neck. I also had my Dura torn and

repaired so I can relate. It is not uncommon to still have pain only

2 weeks later. What you had is very serious surgeries. It takes time

to heal. And in some cases such as my neck surgery, it never

stops. I ended up on disability due to five more years of chronic

pain. Now it's up to 8 years.

>Another thing I've had issues with is going to the bathroom. I take a

>diuretic for my blood pressure so I've never had issues urinating.

>Now, I'm having to push so hard just to urinate that my head and back

>hurt. Not to mention that it's the same with my bowels. It's not due

>to constipation from the pain meds because this started the evening

>of my surgery so it was immediately after my surgery.

The immediate post surgery issues with bodily functions are due to

anesthesia. After that it's from pain meds. Since I am on 24 x 7

pain and other medications I need to take medication to allow me to

urinate, and lots of fiber and supplements for bowel movements. If

you read the side effects of your medicines many do cause

constipation. Hopefully you will find a little less pain, but it

will be quite some time until it goes away. The fact they gave you

something for nerves is great. Often you'll get nerve pain that is

different from the original pain but still very painful. One thing

that really works for me is a ice pack, wrapped in a towel on the

area of the pain. I still use several a night. They can be found in

a drugstore, usually a blue gell type pack. Buy 2-3 so you'll always

have a cold one. Hope this helps for now. If you go to the main

page of our group, then do to documents I think, then members

stories, then Dave you can find my whole back / neck surgery. Take

care. Dave Reading, PA

[Guest guest]

Michele,

Just wanted to say hello and welcome. I'm sorry to hear about all the

problems you've had. You've been through so much, and quiet serious

surgeries. I think that two weeks (although I'm sure it feels like

forever) is still early to expect to be out of pain and get a clear

picture yet. Don't push your recovery, I know it's hard to stay put

when you're used to doing so much, but you've got a lot of healing to

do and I'm sure a lot of swelling inside that is making things

difficult for you. Drink a lot of water, eat lots of fruit and fiber.

Something else that is good and is now sold over the counter is called

Myralax, it's a powder that you mix into a drink and it helps to add

more water into your digestive tract/BM's to make it easier to go.

It's not a stimulant that will give you cramps, but also it isn't

something that works overnight but it is gentle so shouldn't increase

your pain any.

Good luck with your recovery!

Debbie

>

> My name is Michele. I'm 37 and have been married for almost 14

years.

> We have two kids who are 13 and 7 and live in Washington state.

About

> 6 or 7 years ago I had some back pain and after 6 months or or of

> doing PT, seeing the chiropractor, etc., my doctor finally called

for

> an MRI. I had a 'severely herniated disk' at L5-S1. I got a

cortisone

> shot and it worked miracles.

>

> Fast forward to last October. I was doing a load of laundry and

when

> I turned I got such incredible pain that I barely made it to the

> stairs and went down on my butt to the kitchen where I just sobbed

as

> my husband held me. I saw my doctor (different one than I had 6

years

> ago) who referred me for another MRI and to see a neurosurgeon.

When

> I got in to see the neuro, he said that he absolutely didn't

> understand how I had walked in there and said that I should have

been

> brought in on a stretcher. He said that my disk was enormous and

> couldn't believe I was still walking; that he has patients who have

> 1/4 of the disk protrusion that I was showing begging him to do

> surgery on them. I couldn't face the fact that I needed to have the

> disk taken care of and it took me two months to make the

appointment.

>

> I went in February 19th and had the disk shaved off. Four days

later

> I was in excruciating pain...way worse than I'd had before the

> surgery. Went back in for another MRI with contrast this time and

> found out that my disk had reherniated. I went back down on April

8th

> to have it redone. They got in there and found out that a large

chunk

> of the disk (over 1/2 sized piece) had broken off and wedge into my

> dura sac, cutting it open. I'd been losing CSF for a while, which

> explained why I had been having some crazy headaches since my last

> surgery. So they stitched up the tear but were unable to get a

drain

> into the sac. I was on my back for 3 days and finally got out of

the

> hospital on the 4th day.

>

> I've been being very careful and have allowed myself to ask for

help

> and demand more from the kids. I'm finding, though, that I'm still

> having so much pain. I'm second guessing having surgery in the

first

> place. I had my first recheck on Monday (Tuesday was two weeks). He

> took out the sutures and said that although it's not completely

> uncommon to still have this much pain, he was really hoping I would

> be feeling better by now. He gave me a script for something that is

> supposed to help calm my nerves to see if that helps the pain but

> said that my nerves were 'very angry looking' when they were in

there

> so it might just take some time. He also gave me a referral for PT

> that I need to look into starting next week.

>

> Another thing I've had issues with is going to the bathroom. I take

a

> diuretic for my blood pressure so I've never had issues urinating.

> Now, I'm having to push so hard just to urinate that my head and

back

> hurt. Not to mention that it's the same with my bowels. It's not

due

> to constipation from the pain meds because this started the evening

> of my surgery so it was immediately after my surgery.

>

> Anyway, I'm really sorry this is so long and I hope some of you

have

> at least made it through. Just was hoping that someone else

might

> have gone through this and might have some insight to offer.

>

> Michele

>

[Guest guest]

Michele,

Just wanted to say hello and welcome. I'm sorry to hear about all the

problems you've had. You've been through so much, and quiet serious

surgeries. I think that two weeks (although I'm sure it feels like

forever) is still early to expect to be out of pain and get a clear

picture yet. Don't push your recovery, I know it's hard to stay put

when you're used to doing so much, but you've got a lot of healing to

do and I'm sure a lot of swelling inside that is making things

difficult for you. Drink a lot of water, eat lots of fruit and fiber.

Something else that is good and is now sold over the counter is called

Myralax, it's a powder that you mix into a drink and it helps to add

more water into your digestive tract/BM's to make it easier to go.

It's not a stimulant that will give you cramps, but also it isn't

something that works overnight but it is gentle so shouldn't increase

your pain any.

Good luck with your recovery!

Debbie

>

> My name is Michele. I'm 37 and have been married for almost 14

years.

> We have two kids who are 13 and 7 and live in Washington state.

About

> 6 or 7 years ago I had some back pain and after 6 months or or of

> doing PT, seeing the chiropractor, etc., my doctor finally called

for

> an MRI. I had a 'severely herniated disk' at L5-S1. I got a

cortisone

> shot and it worked miracles.

>

> Fast forward to last October. I was doing a load of laundry and

when

> I turned I got such incredible pain that I barely made it to the

> stairs and went down on my butt to the kitchen where I just sobbed

as

> my husband held me. I saw my doctor (different one than I had 6

years

> ago) who referred me for another MRI and to see a neurosurgeon.

When

> I got in to see the neuro, he said that he absolutely didn't

> understand how I had walked in there and said that I should have

been

> brought in on a stretcher. He said that my disk was enormous and

> couldn't believe I was still walking; that he has patients who have

> 1/4 of the disk protrusion that I was showing begging him to do

> surgery on them. I couldn't face the fact that I needed to have the

> disk taken care of and it took me two months to make the

appointment.

>

> I went in February 19th and had the disk shaved off. Four days

later

> I was in excruciating pain...way worse than I'd had before the

> surgery. Went back in for another MRI with contrast this time and

> found out that my disk had reherniated. I went back down on April

8th

> to have it redone. They got in there and found out that a large

chunk

> of the disk (over 1/2 sized piece) had broken off and wedge into my

> dura sac, cutting it open. I'd been losing CSF for a while, which

> explained why I had been having some crazy headaches since my last

> surgery. So they stitched up the tear but were unable to get a

drain

> into the sac. I was on my back for 3 days and finally got out of

the

> hospital on the 4th day.

>

> I've been being very careful and have allowed myself to ask for

help

> and demand more from the kids. I'm finding, though, that I'm still

> having so much pain. I'm second guessing having surgery in the

first

> place. I had my first recheck on Monday (Tuesday was two weeks). He

> took out the sutures and said that although it's not completely

> uncommon to still have this much pain, he was really hoping I would

> be feeling better by now. He gave me a script for something that is

> supposed to help calm my nerves to see if that helps the pain but

> said that my nerves were 'very angry looking' when they were in

there

> so it might just take some time. He also gave me a referral for PT

> that I need to look into starting next week.

>

> Another thing I've had issues with is going to the bathroom. I take

a

> diuretic for my blood pressure so I've never had issues urinating.

> Now, I'm having to push so hard just to urinate that my head and

back

> hurt. Not to mention that it's the same with my bowels. It's not

due

> to constipation from the pain meds because this started the evening

> of my surgery so it was immediately after my surgery.

>

> Anyway, I'm really sorry this is so long and I hope some of you

have

> at least made it through. Just was hoping that someone else

might

> have gone through this and might have some insight to offer.

>

> Michele

>

[Guest guest]

At 01:32 AM 4/24/2008, you wrote:

>My name is Michele. I'm 37

>

>

>

>They got in there and found out that a large chunk

>of the disk (over 1/2 sized piece) had broken off and wedge into my

>dura sac, cutting it open. I'd been losing CSF for a while, which

>explained why I had been having some crazy headaches since my last

>surgery. So they stitched up the tear but were unable to get a drain

>into the sac. I was on my back for 3 days and finally got out of the

>hospital on the 4th day.

>

>

>Michele

>

>

Hi Michele Dave again. I have some questions about your

headaches. I've been having nasty headaches plus dizzy and nausea

all migraine like. When I had my lumbar area fixed and fused S1

through L4 or 5 I forget, they found a big tear in my dura. They

said I was lucky I didn't end up paralyzed because of exposed nerves

rubbing up against vertebrae. Anyway I was wondering if your

headaches came and went or were all the time. Is there a way to find

spinal fluid leaks without exploratory surgery? Maybe through

contrast dye scan?

My doctor has said my vertigo bouts are coming from an inner problem,

but it has persisted since about last November. Your posting has me

thinking about the dura possibility. Thanks for your input. Dave

[Guest guest]

At 01:32 AM 4/24/2008, you wrote:

>My name is Michele. I'm 37

>

>

>

>They got in there and found out that a large chunk

>of the disk (over 1/2 sized piece) had broken off and wedge into my

>dura sac, cutting it open. I'd been losing CSF for a while, which

>explained why I had been having some crazy headaches since my last

>surgery. So they stitched up the tear but were unable to get a drain

>into the sac. I was on my back for 3 days and finally got out of the

>hospital on the 4th day.

>

>

>Michele

>

>

Hi Michele Dave again. I have some questions about your

headaches. I've been having nasty headaches plus dizzy and nausea

all migraine like. When I had my lumbar area fixed and fused S1

through L4 or 5 I forget, they found a big tear in my dura. They

said I was lucky I didn't end up paralyzed because of exposed nerves

rubbing up against vertebrae. Anyway I was wondering if your

headaches came and went or were all the time. Is there a way to find

spinal fluid leaks without exploratory surgery? Maybe through

contrast dye scan?

My doctor has said my vertigo bouts are coming from an inner problem,

but it has persisted since about last November. Your posting has me

thinking about the dura possibility. Thanks for your input. Dave

[Guest guest]

Hi Dave,

They said I had to watch for pooling in the area of my incision that

would likely be the CSF leaking. They said that the headaches are

pretty bad but usually go away when you lie down. So, you might want to

try lying down the next time you get one. If it goes away, then it

might be fluid leaking. I'm not sure if it's something that could be

seen in a contrast MRI. You'd have to ask your neuro about that.

Michele

> >

> >

>

> Hi Michele Dave again. I have some questions about your

> headaches. I've been having nasty headaches plus dizzy and nausea

> all migraine like. When I had my lumbar area fixed and fused S1

> through L4 or 5 I forget, they found a big tear in my dura. They

> said I was lucky I didn't end up paralyzed because of exposed nerves

> rubbing up against vertebrae. Anyway I was wondering if your

> headaches came and went or were all the time. Is there a way to find

> spinal fluid leaks without exploratory surgery? Maybe through

> contrast dye scan?

> My doctor has said my vertigo bouts are coming from an inner problem,

> but it has persisted since about last November. Your posting has me

> thinking about the dura possibility. Thanks for your input. Dave

>

[Guest guest]

Hi Dave,

They said I had to watch for pooling in the area of my incision that

would likely be the CSF leaking. They said that the headaches are

pretty bad but usually go away when you lie down. So, you might want to

try lying down the next time you get one. If it goes away, then it

might be fluid leaking. I'm not sure if it's something that could be

seen in a contrast MRI. You'd have to ask your neuro about that.

Michele

> >

> >

>

> Hi Michele Dave again. I have some questions about your

> headaches. I've been having nasty headaches plus dizzy and nausea

> all migraine like. When I had my lumbar area fixed and fused S1

> through L4 or 5 I forget, they found a big tear in my dura. They

> said I was lucky I didn't end up paralyzed because of exposed nerves

> rubbing up against vertebrae. Anyway I was wondering if your

> headaches came and went or were all the time. Is there a way to find

> spinal fluid leaks without exploratory surgery? Maybe through

> contrast dye scan?

> My doctor has said my vertigo bouts are coming from an inner problem,

> but it has persisted since about last November. Your posting has me

> thinking about the dura possibility. Thanks for your input. Dave

>

[Guest guest]

At 01:10 AM 4/26/2008, you wrote:

>Hi Dave,

>They said I had to watch for pooling in the area of my incision that

>would likely be the CSF leaking. They said that the headaches are

>pretty bad but usually go away when you lie down. So, you might want to

>try lying down the next time you get one. If it goes away, then it

>might be fluid leaking. I'm not sure if it's something that could be

>seen in a contrast MRI. You'd have to ask your neuro about that.

Thanks, laying down ,plus migraine meds, Dramamine are the only ways

to get relief. Feels like a migraine but also nausea, and dizziness

or vertigo. It usually comes on when I'm looking down, even as

simple as washing the dishes. Thanks, Dave

[Guest guest]

At 01:10 AM 4/26/2008, you wrote:

>Hi Dave,

>They said I had to watch for pooling in the area of my incision that

>would likely be the CSF leaking. They said that the headaches are

>pretty bad but usually go away when you lie down. So, you might want to

>try lying down the next time you get one. If it goes away, then it

>might be fluid leaking. I'm not sure if it's something that could be

>seen in a contrast MRI. You'd have to ask your neuro about that.

Thanks, laying down ,plus migraine meds, Dramamine are the only ways

to get relief. Feels like a migraine but also nausea, and dizziness

or vertigo. It usually comes on when I'm looking down, even as

simple as washing the dishes. Thanks, Dave

[Guest guest]

Ah - now this makes sense Del. I just saw your first

'accidental' email and asked you for more details. You certainly have been

through the mill and I am sorry that you have experienced so much death with

close members of your family - and yes, it does sound like your adrenals are

not up to scratch. It also sounds as your stupid doctor is not up to scratch

either, and the first think I would recommend is that you don['t go to this

doctor anymore and find one who actually cares about his patients. He sounds

quite frightful. There ARE good doctors out there, but finding one's who know

more about hypothyroidism than the majority is pretty hard to find. Anyway,

before you get rid of him, I would have great pleasure in sending him a letter.

OK, pen to paper. Sit down and write " Dear Doctor…. "

and give him a complete list of your symptoms and your signs (you can check

yours against those in our web site www.tpa-uk.org.uk

under 'Hypothyroidism'. Make sure you list the 'signs' because these are things

that your GP should have noted all by himself. LOL!

Next list your basal temperature before getting out of bed and

before having a drink. Normal temperature is 98.6 degrees F and if yours is

97.8 (and it could be less) this is an indication your metabolism is running

too low and could be because of hypothyroidism. List any members of your family

who have an autoimmune or a thyroid problem.

Ask your GP to test to see if any of the following are low in

the reference range: Ferritin B12, Vitamin D3, magnesium, zinc and copper. If

any of these are low, your thyroid hormone will likely not be getting absorbed

properly in the cells. Any that are low needs supplementing. Tell him that you

do research on the Internet because you are aware that all the latest research

and publications about thyroid disease are published in the large, important medical

journals so it is available to all doctors to keep their knowledge updated, so

you know you are looking at 'good' information - if not the best available.

That should make him squirm!

Tell him that you have learned from these medical journals that

both your Free T3 and Free T4 should be above the half way mark in the

reference range for those not on any thyroid hormone supplement and for those

that do take thyroid supplementation, they should be in the upper third of the

reference range. Because of this, put in your letter that as your FT4 and FT3

are low, and because of your symptoms, signs (family history if this applies)

you would now like him to refer you to a thyroid specialist, as opposed to an

endocrinologist who's speciality is in diabetes.

Last, ask that your letter of requests be placed inside your

medical notes and make sure that a copy of your letter is CCd to the Head of

Practice. Such a\ letter usually make a GP start to sit up and take notice of

the fact that you DO mean business.

Where about in the UK do you live - I am interested because I

like to know which areas of the UK are still testing for Free T3 as there are

not many laboratories left that will do this.

Read on our web site (under Hypothyroidism) about the Associated

Conditions to go along with being hypothyroid.

Luv - Sheila

Up until fairly recently I didn't know enough to challenge the medical

profession regarding my symptoms and would, once again, like to thank

everybody on this forum for the vast amount of shared knowledge. Since

October I have lost 3 close family members and 3 friends so I am pretty up to

speed on the bereavement process plus I am currently out of work so I more

than understand that my adrenals are taking a beating. After I lost my

father in law in November I seized the bull by the horns and vowed to do

something about my symptoms. Unfortunately, this was somewhat waylaid

by a number of other deaths along the way and it is only now that I have a

fairly good idea of what my next steps are going to be.

..

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.364 / Virus Database: 270.12.90/2200 - Release Date: 06/26/09

05:53:00

[Guest guest]

Hi Del,

Welcome to the wacky world of thyroid. Tests are a good

servant but a bad master. Did he actually take any note of the symptoms

and signs of hypo that you are suffering- he should have! See lists in

the files area of the site. Those tests aren't THAT bad, but aren't

optimum either- most of us feel well with the Free T's in the top

quarter of the range, but I expect that these were ignored as TSH is

pretty good, but it is perfectly possible to have a thyroid problem with

a 'normal' TSH. Dr. P is magic!

Subject: Hello From New Member

Hello All,

I was attempting to compose an email to thank you all for the vast

amount of kindness and knowledge on this forum which has been so very

helpful over the last month or so and it all went a bit wrong and got

sent before I finished it so I shall have another attempt!

TSH - 0.87 (Range : 0.1 - 5.0)

FT3 - 4.5 (Range : 3.5 - 6.5)

FT4 - 12.4 Range : 9.0 - 20.0)

The GP was not interested in my symptoms Incidentally, I was wearing my

" Eat Less, Move More, Buy Another Jumper " fleece in readiness for the

usual comment on being a fat woman!

Anyway, I have decided on a course of treatment which will involve the

usual suspects : private tests, vitamin & mineral supplements,

glandulars, Dr P - I'm sure you all have a fairly good idea! 

Any feedback on the bloodwork would be helpful and if anybody could

point me in the direction of the adrenal sister group I would be most

grateful.  Again, many thanks for the knowledge and support shared and

given by this group.

Del.

[Guest guest]

Hello All,Further to my recent "Hello From New Member" message, which I eventually managed to post, I have been back to a different doctor to ask for a blood test for the specific Ferritin, Vitamin B12, etc..., etc... as suggested by Sheila.Dr I. was slightly different in her approach and suggested a couple of others to lob in as well, she took my blood pressure and, having already read my notes which included the words "has been doing research on the internet" from my previous visit, just said to me "You look like an intelligent person, I'm sure you're aware that there may be some rather strange suggestions out there." I explained my strategy about starting at the bottom and working my way up. She said it appeared to be a very reasonable way of going about it and told me to come back if there was anything else she could do for me. A complete shock compared to the other doctor!Anyway, the results are back and as follows. I have included the original Thyroid Results just to give a more complete picture.TSH - 0.87 (Range : 0.1 - 5.0)FT3 - 4.5 (Range : 3.5 - 6.5)FT4 - 12.4 (Range : 9.0 - 20.0)No Thyroid AntibodiesSerum Ferritin 67 ug/L (Range : 11 - 305)Serum Vitamin B12 133 pg/ml (Range : 140 - 900) This is notated as "Slightly Low".Serum Magnesium 1.01 mmol/L (Range 0.7 - 1.00) This is notated as "HI".Serum Copper 22.8 umol/L (Range 13.0 - 23.0)Serum Zinc 11.1 umol/L (Range 11.0 - 23.0)And then the extra ones...Serum Folate 3.5 ug/L (Range : 2.0 - 20.00)Calcium Profile Serum Albumin 39 g/L (Range : 35 - 50) Corrected Serum Calcium Level 2.28 mmol/L (Range : 2.10 - 2.60) Serum Calcium 2.26 mmol/L (Range : 2.10 - 2.60)Unfortunately the Vitamin D3 seems to have been missed somewhere along the way. - Sheila, you're going to tell me to go back and get it aren't you? These people have more of my blood than I do!I thought I was probably low in some of them as they wouldn't give me the specifics over the telephone when I rang for the results. They would only tell me that most of them were "Normal" but that the doctor wanted to talk to me, albeit we could talk on the phone. Unfortunately, it was the original doctor that I went to see and he wanted me to take another blood test to check my Auto Immune Profile. He sighed somewhat when I mentioned Pernicious Anaemia before he did and it was VERY tempting to ask him exactly how the anti-depressants he was keen on giving me at my last consultation would have helped increase my B12 levels!It would explain why I have been feeling monumentally tired with very little energy, although interestingly enough, I have been sweating during the recent hot weather. This is an exceedingly recent event and I am pleasantly surprised about it. Mind you, I have been drinking vast quantities of a re-hydration drink called Nuun - http://www.nuun.com/nuunis/ - because I didn't feel like eating very much. My partner in crime is a cyclist who sweats for Britain and I find Nuun considerably more palatable than drinking neat water. Mind you, he considers beer to be an acceptable "re-carbing" drink...Dr P's book arrived today and I have already read Dr S's so I may absorb it all in the bath later on.Any thoughts and comments on the results would be deeply appreciated and many thanks for the help and support provided here. Cheers!Del.>> Hi Del,> Welcome to the wacky world of thyroid. Tests are a good> servant but a bad master. Did he actually take any note of the symptoms> and signs of hypo that you are suffering- he should have! See lists in> the files area of the site. Those tests aren't THAT bad, but aren't> optimum either- most of us feel well with the Free T's in the top> quarter of the range, but I expect that these were ignored as TSH is> pretty good, but it is perfectly possible to have a thyroid problem with> a 'normal' TSH. Dr. P is magic!>