Re: Ready to Scream!!!!!

[Guest guest]

Feel free to vent Barb, you are among friends and fellow sufferers here, I find

it refreshing to vent my problems, and getting feedback, advise, and comrodery

in this group, somehow it helps to know that you are not alone in this world,

that others are willing to understand, and offer opinions.

I know what you mean with the brain fog from meds, in my case the muscle

relaxers are dreadful. Kudo's to you for trying to hold down a job, I just had

to give into the fact I couldn't, still its one of the hardest things I have to

accept, sometimes I feel like I am going to go stir crazy, but talking to others

here helps me get through.

I certainly hope you see more problem free days in your life.

 

george

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

________________________________

From: ellijaygal <ellijaygal@...>

spinal problems

Sent: Saturday, November 22, 2008 7:41:24 AM

Subject: Ready to Scream!!!!!

I was born with spina bifida myelomengocele which was repaired shortly

after birth. In 2006 after years of seeking a doctor to help me with

all of the headaches/backaches /nerve spasms I finally found one to do

a MRI and ten days later I had a lamnectomy to correct a tethered cord

which was splitting. In 2007 I was losing use of my left hand/arm,

another MRI revealed that I had a herinated disc at C4 which was

corrected with a fusion/hardware. This year I have started having

vision problems in one eye, brain fog, dizziness, nausea, falling down

or falling into things. My regular neuro did a MRI and it shows my

spinal cord now ends at L5 with possible retethering. My neuro said

that she didn't think it was tethered again and unless I have more

symptoms she doesn't want to do anything but watch it for now. Then

the new symptoms started that I mentioned above. She sent me to a

neurologist who deals with brain issues. The radiologist report from

the brain MRI states that my cerebral tonsils extend 5mm into my

spinal canal and are borderline for chiari. I should also mention I

have a syrinx from C4-C7. The neuro appointment was yesterday and he

was 2 hours late so at 5:00 p.m. he flies into the room and says I

just think you are stressed and put me back on Klonopin. This was one

of the drugs I STOPPED taking because I thought it was what was

causing all of my symptoms. I am so sick and tired of being treated

like I am depressed, insane, seeking attention or drugs. Who wouldn't

be depressed after feeling like crap each and every day of their

lives?? I don't want drugs all I want is to know is what is wrong with

me!!!!!!!!! Maybe I should just give up and take the various

medications they keep throwing at me that do make me have brainfog and

continue to live in this dizzy and confused state. I am trying so hard

to hang onto a job and be a productive member of society but it gets

harder each day.

Thanks to anyone who takes the time to read this. I am just frustrated

and using this post as a means to relieve some of the frustration in a

dear diary type manner.

Barb

[Guest guest]

Well if I didn't work for friends there would be no job. Between the

brain confusion from pain, from switching of medications and from

whatever the heck is going on now, a normal business would have

terminated me long ago. Thanks for the support.

>

> Feel free to vent Barb, you are among friends and fellow sufferers

here, I find it refreshing to vent my problems, and getting feedback,

advise, and comrodery in this group, somehow it helps to know that you

are not alone in this world, that others are willing to understand,

and offer opinions.

> I know what you mean with the brain fog from meds, in my case the

muscle relaxers are dreadful. Kudo's to you for trying to hold down a

job, I just had to give into the fact I couldn't, still its one of the

hardest things I have to accept, sometimes I feel like I am going to

go stir crazy, but talking to others here helps me get through.

> I certainly hope you see more problem free days in your life.

>  

> george

>  

> The dog has seldom been successful in pulling man up to its level of

sagacity, but man has frequently dragged the dog down to his.

Thurber

>

>

>

>

>

> ________________________________

> From: ellijaygal <ellijaygal@...>

> spinal problems

> Sent: Saturday, November 22, 2008 7:41:24 AM

> Subject: Ready to Scream!!!!!

>

>

> I was born with spina bifida myelomengocele which was repaired shortly

> after birth. In 2006 after years of seeking a doctor to help me with

> all of the headaches/backaches /nerve spasms I finally found one to do

> a MRI and ten days later I had a lamnectomy to correct a tethered cord

> which was splitting. In 2007 I was losing use of my left hand/arm,

> another MRI revealed that I had a herinated disc at C4 which was

> corrected with a fusion/hardware. This year I have started having

> vision problems in one eye, brain fog, dizziness, nausea, falling down

> or falling into things. My regular neuro did a MRI and it shows my

> spinal cord now ends at L5 with possible retethering. My neuro said

> that she didn't think it was tethered again and unless I have more

> symptoms she doesn't want to do anything but watch it for now. Then

> the new symptoms started that I mentioned above. She sent me to a

> neurologist who deals with brain issues. The radiologist report from

> the brain MRI states that my cerebral tonsils extend 5mm into my

> spinal canal and are borderline for chiari. I should also mention I

> have a syrinx from C4-C7. The neuro appointment was yesterday and he

> was 2 hours late so at 5:00 p.m. he flies into the room and says I

> just think you are stressed and put me back on Klonopin. This was one

> of the drugs I STOPPED taking because I thought it was what was

> causing all of my symptoms. I am so sick and tired of being treated

> like I am depressed, insane, seeking attention or drugs. Who wouldn't

> be depressed after feeling like crap each and every day of their

> lives?? I don't want drugs all I want is to know is what is wrong with

> me!!!!!!!!! Maybe I should just give up and take the various

> medications they keep throwing at me that do make me have brainfog and

> continue to live in this dizzy and confused state. I am trying so hard

> to hang onto a job and be a productive member of society but it gets

> harder each day.

>

> Thanks to anyone who takes the time to read this. I am just frustrated

> and using this post as a means to relieve some of the frustration in a

> dear diary type manner.

>

> Barb

>

>

>

>

>

>

>

[Guest guest]

Barb,

  All I can say is God Bless you.  I have my own set of issues spine and

personal

and mine pale after reading yours.  I am a recent widower with 4 kids at home

(11-18)

with multiple spine problems but have managed to avoid surgery (lotsa needles

stuck into to my spine and head though). I'm being laid off right after

Christmas (luckily my medical benefits are permanent from a prior job).  You are

so welcome heere to vent, ask for advice,

or simply say howdee.  Again,  God Bless you.

 

ivan

From: ellijaygal <ellijaygal@...>

Subject: Ready to Scream!!!!!

spinal problems

Date: Saturday, November 22, 2008, 8:41 AM

I was born with spina bifida myelomengocele which was repaired shortly

after birth. In 2006 after years of seeking a doctor to help me with

all of the headaches/backaches /nerve spasms I finally found one to do

a MRI and ten days later I had a lamnectomy to correct a tethered cord

which was splitting. In 2007 I was losing use of my left hand/arm,

another MRI revealed that I had a herinated disc at C4 which was

corrected with a fusion/hardware. This year I have started having

vision problems in one eye, brain fog, dizziness, nausea, falling down

or falling into things. My regular neuro did a MRI and it shows my

spinal cord now ends at L5 with possible retethering. My neuro said

that she didn't think it was tethered again and unless I have more

symptoms she doesn't want to do anything but watch it for now. Then

the new symptoms started that I mentioned above. She sent me to a

neurologist who deals with brain issues. The radiologist report from

the brain MRI states that my cerebral tonsils extend 5mm into my

spinal canal and are borderline for chiari. I should also mention I

have a syrinx from C4-C7. The neuro appointment was yesterday and he

was 2 hours late so at 5:00 p.m. he flies into the room and says I

just think you are stressed and put me back on Klonopin. This was one

of the drugs I STOPPED taking because I thought it was what was

causing all of my symptoms. I am so sick and tired of being treated

like I am depressed, insane, seeking attention or drugs. Who wouldn't

be depressed after feeling like crap each and every day of their

lives?? I don't want drugs all I want is to know is what is wrong with

me!!!!!!!!! Maybe I should just give up and take the various

medications they keep throwing at me that do make me have brainfog and

continue to live in this dizzy and confused state. I am trying so hard

to hang onto a job and be a productive member of society but it gets

harder each day.

Thanks to anyone who takes the time to read this. I am just frustrated

and using this post as a means to relieve some of the frustration in a

dear diary type manner.

Barb

[Guest guest]

Thanks Ivan. I try not to complain very much because I know most

people born with spina bifida myleomengocele wind up with

Hydrocephalus or are quad or parapalegic. I have led a rather normal

life, was married for twenty years (husband got tired of all the mood

swings and illness when they were throwing me on antidepressants and

nerve pills when my cord was tethered rather than finding out what was

going on with me) and had two beautiful daughters against doctor's

advice. So my life is good compared to what it could be. I just get

frustrated when I hurt or have symptoms and doctors dismiss what I

know is truly going on in my body and not in my depressed head!

Thanks,

Barb

>

> From: ellijaygal <ellijaygal@...>

> Subject: Ready to Scream!!!!!

> spinal problems

> Date: Saturday, November 22, 2008, 8:41 AM

>

>

>

>

>

>

> I was born with spina bifida myelomengocele which was repaired shortly

> after birth. In 2006 after years of seeking a doctor to help me with

> all of the headaches/backaches /nerve spasms I finally found one to do

> a MRI and ten days later I had a lamnectomy to correct a tethered cord

> which was splitting. In 2007 I was losing use of my left hand/arm,

> another MRI revealed that I had a herinated disc at C4 which was

> corrected with a fusion/hardware. This year I have started having

> vision problems in one eye, brain fog, dizziness, nausea, falling down

> or falling into things. My regular neuro did a MRI and it shows my

> spinal cord now ends at L5 with possible retethering. My neuro said

> that she didn't think it was tethered again and unless I have more

> symptoms she doesn't want to do anything but watch it for now. Then

> the new symptoms started that I mentioned above. She sent me to a

> neurologist who deals with brain issues. The radiologist report from

> the brain MRI states that my cerebral tonsils extend 5mm into my

> spinal canal and are borderline for chiari. I should also mention I

> have a syrinx from C4-C7. The neuro appointment was yesterday and he

> was 2 hours late so at 5:00 p.m. he flies into the room and says I

> just think you are stressed and put me back on Klonopin. This was one

> of the drugs I STOPPED taking because I thought it was what was

> causing all of my symptoms. I am so sick and tired of being treated

> like I am depressed, insane, seeking attention or drugs. Who wouldn't

> be depressed after feeling like crap each and every day of their

> lives?? I don't want drugs all I want is to know is what is wrong with

> me!!!!!!!!! Maybe I should just give up and take the various

> medications they keep throwing at me that do make me have brainfog and

> continue to live in this dizzy and confused state. I am trying so hard

> to hang onto a job and be a productive member of society but it gets

> harder each day.

>

> Thanks to anyone who takes the time to read this. I am just frustrated

> and using this post as a means to relieve some of the frustration in a

> dear diary type manner.

>

> Barb

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Barb,

Would you be able to get to the Chiari Institute in New York? They might

have some answers for you. Their website was a huge help to me because they have

informative videos that helped me to understand what was going on.

Good luck and God bless,

Lexie

[Guest guest]

Hello Barb!

I am sooooo sorry to hear all you are going through. I have a very dear and

close friend who was born with Spina bifidia. She just recently found out that

she has - thanks to her most recent surgery - acquired the most virulent and

drug resistant MRSA. That being said... I can fully comprehend who fed up and

tired you get with all the hullabaloo and <bleep> you get from the doctors from

hearing and seeing what she goes through and knowing the junk I personally have

had to put up with from all-knowing (can you read the scarsam in my words?)

doctors and reading what many of the others on this board/group have and are

going through. We all have experienced in some shape form or fashion a semblance

of what you are dealing with and let me assure you... you have come to the right

place! We all understand and sympathize and know how it feels to need an ear, a

shoulder or a air-tight room to scream in. Vent all you need, IMHO, and know

there are those of us out there who understand and are praying for you.

Take care of yourself and Blessings!

Callie

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

Ready to Scream!!!!!

Posted by: " ellijaygal " ellijaygal@... ellijaygal

Sat Nov 22, 2008 5:41 am (PST)

I was born with spina bifida myelomengocele which was repaired shortly

after birth. In 2006 after years of seeking a doctor to help me with

all of the headaches/backaches/nerve spasms I finally found one to do

a MRI and ten days later I had a lamnectomy to correct a tethered cord

which was splitting. In 2007 I was losing use of my left hand/arm,

another MRI revealed that I had a herinated disc at C4 which was

corrected with a fusion/hardware. This year I have started having

vision problems in one eye, brain fog, dizziness, nausea, falling down

or falling into things. My regular neuro did a MRI and it shows my

spinal cord now ends at L5 with possible retethering. My neuro said

that she didn't think it was tethered again and unless I have more

symptoms she doesn't want to do anything but watch it for now. Then

the new symptoms started that I mentioned above. She sent me to a

neurologist who deals with brain issues. The radiologist report from

the brain MRI states that my cerebral tonsils extend 5mm into my

spinal canal and are borderline for chiari. I should also mention I

have a syrinx from C4-C7. The neuro appointment was yesterday and he

was 2 hours late so at 5:00 p.m. he flies into the room and says I

just think you are stressed and put me back on Klonopin. This was one

of the drugs I STOPPED taking because I thought it was what was

causing all of my symptoms. I am so sick and tired of being treated

like I am depressed, insane, seeking attention or drugs. Who wouldn't

be depressed after feeling like crap each and every day of their

lives?? I don't want drugs all I want is to know is what is wrong with

me!!!!!!!!! Maybe I should just give up and take the various

medications they keep throwing at me that do make me have brainfog and

continue to live in this dizzy and confused state. I am trying so hard

to hang onto a job and be a productive member of society but it gets

harder each day.

Thanks to anyone who takes the time to read this. I am just frustrated

and using this post as a means to relieve some of the frustration in a

dear diary type manner.

Barb

____________________________________________________________

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[Guest guest]

Hello Barb,

Well, I see you have already gotten some of the welcome wagon I

would like to welcome you too. There are a bunch of nice people

here, and we all have big shoulders to lean on, and big ears to

listen too.......NO, I'm not gonna finish that. lol But I am sorry

that it is pain and frustration that bring you to us. Hope you are

having an easier time by the time this reaches you. Take care & God

bless.

Sue

>

> I was born with spina bifida myelomengocele which was repaired

shortly

> after birth. In 2006 after years of seeking a doctor to help me with

> all of the headaches/backaches/nerve spasms I finally found one to

do

> a MRI and ten days later I had a lamnectomy to correct a tethered

cord

> which was splitting. In 2007 I was losing use of my left hand/arm,

> another MRI revealed that I had a herinated disc at C4 which was

> corrected with a fusion/hardware. This year I have started having

> vision problems in one eye, brain fog, dizziness, nausea, falling

down

> or falling into things. My regular neuro did a MRI and it shows my

> spinal cord now ends at L5 with possible retethering. My neuro said

> that she didn't think it was tethered again and unless I have more

> symptoms she doesn't want to do anything but watch it for now. Then

> the new symptoms started that I mentioned above. She sent me to a

> neurologist who deals with brain issues. The radiologist report from

> the brain MRI states that my cerebral tonsils extend 5mm into my

> spinal canal and are borderline for chiari. I should also mention I

> have a syrinx from C4-C7. The neuro appointment was yesterday and he

> was 2 hours late so at 5:00 p.m. he flies into the room and says I

> just think you are stressed and put me back on Klonopin. This was

one

> of the drugs I STOPPED taking because I thought it was what was

> causing all of my symptoms. I am so sick and tired of being treated

> like I am depressed, insane, seeking attention or drugs. Who

wouldn't

> be depressed after feeling like crap each and every day of their

> lives?? I don't want drugs all I want is to know is what is wrong

with

> me!!!!!!!!! Maybe I should just give up and take the various

> medications they keep throwing at me that do make me have brainfog

and

> continue to live in this dizzy and confused state. I am trying so

hard

> to hang onto a job and be a productive member of society but it gets

> harder each day.

>

> Thanks to anyone who takes the time to read this. I am just

frustrated

> and using this post as a means to relieve some of the frustration

in a

> dear diary type manner.

>

> Barb

>

[Guest guest]

Thanks Lexie and I have looked at their website and I see where

everything you do there has to be paid up front with a prayer that

insurance will repay you later, so no I can not go there. I am 43

years old, have no additional income so it's all I can do to make ends

meet with house, utilities and medicals. It's such a vicious circle

when you are basically disabled yet trying to work. No help whatsoever

exists when you are trying to work.

-- In spinal problems , " Lexie "

<lexie@...> wrote:

>

> Barb,

> Would you be able to get to the Chiari Institute in New York?

They might have some answers for you. Their website was a huge help to

me because they have informative videos that helped me to understand

what was going on.

>

> Good luck and God bless,

> Lexie

>

>

[Guest guest]

Barb,

I sure understand the money thing. I have decent insurance and it still cost

out the nose to go to TCI. I have been up there twice for surgery and had really

good experiences with the TCI staff. The hospital is a nightmare.

I have decided to stay home for care and train my own doctors. So far it is

going well. Have you looked at the EDS information to see if you match up with

any of that?

Have a great afternoon!

Lexie

[Guest guest]

No I am somewhat weary of seeing if there is anything else I match up

with! haha I can only deal with one issue at a time..first the

tethered cord, then the herinated disc, now the chiari, maybe I will

deal with that next. I have found a chiari doctor in Colorado that

will review MRI's and symptoms for no charge and then if he feels it

is necessary schedule an appointment. Since the doctor here in Georgia

didn't have time for me I will probably go that route.

>

> Barb,

> I sure understand the money thing. I have decent insurance and

it still cost out the nose to go to TCI. I have been up there twice

for surgery and had really good experiences with the TCI staff. The

hospital is a nightmare.

> I have decided to stay home for care and train my own doctors.

So far it is going well. Have you looked at the EDS information to see

if you match up with any of that?

>

> Have a great afternoon!

> Lexie

>

>