Recently Diagnosed and scared

[Guest guest]

Hi everyone,

 

 

Here is my story,

 

I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

I was worried for MS, so I found a neurologist in San , Tx who did a MRI

of the brain and spinal cord. I was told everything was normal and MS was ruled

out.

At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

 

About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be too.

But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

 

On one hand I have a diagnosis that finally accounts for all of my symptoms, but

now I am left with tons of new questions and fear. I do not know much about this

diagnosis. I do not know how or if it can progress, if my symptoms are going to

get worse, the possibility of new symptoms. I am most worried that I will

develop syrinxes as those can cause permanent damage. I am afraid for all of the

implications this might have on my life, and after days of researching on the

Internet, I still have yet to find definitive answers.

 

I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very  careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

 

I feel like my friends and family do not understand. My parents are in denial.

At this point I just feel very alone and do not know what to do. I am looking

for support and guidance from people who understand what this is like.

 

Please if anyone has any advice or information I would be so thankful.

 

 

 

[Guest guest]

Hi ,

What a wonderful synopsis of what you have been through and your thought

process.  I like that you are open to searching for explanations/options.

I could provide some info via e-mail, but it may be more helpful to have a

telephone conversation. 

I have Chiari, have been decompressed, (and have had some post-op issues that

are now resolved).  I also have some knowledge of toxins in general.

I am in Wisconsin (CST)...

Ann __

[Guest guest]

You are welcome to call me I was 33 when it happened to me I am 9 years post op

I was labeled a hypochondriac

Sent from my iPad

> Hi everyone,

>

>

> Here is my story,

>

> I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

> I was worried for MS, so I found a neurologist in San , Tx who did a

MRI of the brain and spinal cord. I was told everything was normal and MS was

ruled out.

> At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

> He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

>

> About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be too.

But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

>

> On one hand I have a diagnosis that finally accounts for all of my symptoms,

but now I am left with tons of new questions and fear. I do not know much about

this diagnosis. I do not know how or if it can progress, if my symptoms are

going to get worse, the possibility of new symptoms. I am most worried that I

will develop syrinxes as those can cause permanent damage. I am afraid for all

of the implications this might have on my life, and after days of researching on

the Internet, I still have yet to find definitive answers.

>

> I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

>

> I feel like my friends and family do not understand. My parents are in denial.

At this point I just feel very alone and do not know what to do. I am looking

for support and guidance from people who understand what this is like.

>

> Please if anyone has any advice or information I would be so thankful.

>

>

>

>

>

>

[Guest guest]

Dear ,

 

I understand your fears. I was also diagnosed with Chiari Malformation with

Syringomyelia which practically was in more than half of my

spine starting from my neck down.. I was 60 years old then. I went to the

Chiari Institute in Long Island, New York for further consultation and

evaluation. My neurologist in New Jersey wouldn't trust doctors in nearby NJ &

NY hospitals to do the surgery, except the one in Long Island. I underwent

Posterior Fossa Decompression on August 2007. I'm better now, though I still

have pains. I go for my annual MRI and the neurologists say that the syrinx is

still there but it has decreased in size, thereby allowing the neuro-spinal

fluid to circulate.

Try getting in touch with the Chiari Institute in North Shore University

Hospital in Long Island, New York. They are very helpful and they may have

answers to your questions.  

 

Hope you find answers to your concerns.

 

PAZ

Subject: Recently Diagnosed and scared

To: " "

< >

Date: Thursday, June 28, 2012, 9:58 PM

 

Hi everyone,

 

 

Here is my story,

 

I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

I was worried for MS, so I found a neurologist in San , Tx who did a MRI

of the brain and spinal cord. I was told everything was normal and MS was ruled

out.

At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

 

About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be

too. But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

 

On one hand I have a diagnosis that finally accounts for all of my symptoms, but

now I am left with tons of new questions and fear. I do not know much about this

diagnosis. I do not know how or if it can progress, if my symptoms are going to

get worse, the possibility of new symptoms. I am most worried that I will

develop syrinxes as those can cause permanent damage. I am afraid for all of the

implications this might have on my life, and after days of researching on the

Internet, I still have yet to find definitive answers.

 

I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very  careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

 

I feel like my friends and family do not understand. My parents are in denial.

At this point I just feel very alone and do not know what to do. I am looking

for support and guidance from people who understand what this is like.

 

Please if anyone has any advice or information I would be so thankful.

 

 

 

[Guest guest]

Dear ,

First of all let me tell you you are not alone, many of uf have passed

exactly for what you are passing through right now!! Same story, many MRI,

nobody did not know, we were hipocondrias, crazy head, and when he had a

diagnosed they told us the same thing: " Nothing to be done " . So do not

believe them.

Let me tell you the good things first:

1. Even though you have a long history to be diagnosed, yo are were

diagnosed when you are young, this has a better prognosis than when you are

diagnosed at 45 as me!!! Now I am 50. So this is good!!! Perfectly good.

2. You live in the US, there are more options there for you than for many of

us, I lived in Mexico, so you can imagine, but I have 3 different surgeries

now and feel better everyday, long story to be said, but the important thing

is that I am much better after a long, long time with many crazy symtpoms,

let me tell you I started with symptoms at 3 years old and nobody new what I

have until I was 45, in the meanwhile I was acussed as a hipocondriac all my

life!!!

So you have to be quite optimistic, because a postive atitude will help you

until you find a solution for your selfe.

Now I will give you some advice:

1. Study all you can about this disease, so when you go to see any doctor

you can see if he is prepare to attend you, the problem with this sickness

is that many, many doctors in do not know about Chiari, you have already

experienced this when they told you that with .5 mm of tonsil descent is not

Chiari, this is completely nonesense, I have Chiari 0, this is Chiari with

out any descent, ok. So study a lot there are many web pages in which you

can look for good scientific information:

http://www.chiariconnectioninternational.com/

http://www.chiariinstitute.com/

http://www.asap.org/

You can also read medical journals which have a lot of information about

Chiari, but those 3 are the most important ones.

2. Find a doctor WHO KNOWS about Chiari, not every doctor knows, I think

many of the US members of this group have connections or a directory of

doctors, because not every doctor which is a neurologyst knows, you must

find a Chiari expert. I highly recomend the Chiari Instiute.

3. Do not be afraid, this coudl be an awful disease but it has many

solutions, I have a friend with MS who once told me: " At least you can stop

it with surgeries " and this is truth, after all these years I am better

than her. So perhaps you will need surgery, it is scary but many of us had

it in the past and we are fine, nothing happens and we really improved our

condition.

4. Be connected with many Chiari groups there a many in the web page, many

good information comes from them.

And most of all, do not be afraid, there are many solutions for this disease

and you are young you have more chance to stop its advance on time!!

I hope this serves.

Mexico

De: Maripaz junia

Responder a: < >

Fecha: viernes 29 de junio de 2012 04:20

Para: < >

Asunto: Re: Recently Diagnosed and scared

Dear ,

I understand your fears. I was also diagnosed with Chiari Malformation with

Syringomyelia which practically was in more than half of my spine starting

from my neck down.. I was 60 years old then. I went to the Chiari Institute

in Long Island, New York for further consultation and evaluation. My

neurologist in New Jersey wouldn't trust doctors in nearby NJ & NY hospitals

to do the surgery, except the one in Long Island. I underwent Posterior

Fossa Decompression on August 2007. I'm better now, though I still have

pains. I go for my annual MRI and the neurologists say that the syrinx is

still there but it has decreased in size, thereby allowing the neuro-spinal

fluid to circulate.

Try getting in touch with the Chiari Institute in North Shore University

Hospital in Long Island, New York. They are very helpful and they may have

answers to your questions.

Hope you find answers to your concerns.

PAZ

From: Eubanks <apple1417@... <mailto:apple1417%40yahoo.com> >

Subject: Recently Diagnosed and scared

To: "

<mailto:%40yahoogroups.com> "

<

<mailto:%40yahoogroups.com> >

Date: Thursday, June 28, 2012, 9:58 PM

Hi everyone,

Here is my story,

I am 24 years old and have been having symptoms that are like MS for almost

2 years now. My first symptoms were decreased sensation to touch and

hot/cold in my fingertips and feet.

I was worried for MS, so I found a neurologist in San , Tx who did a

MRI of the brain and spinal cord. I was told everything was normal and MS

was ruled out.

At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system.

These tests cost about $1,500 as insurance does not cover anything

prescribed by naturopaths. I went through in spite of the cost because I was

still searching for answers. Once again everything was normal.

He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

About 3 weeks ago I developed a new symptom, which was vertigo. This was

very scary for me as I have never experienced this before. It was very bad

for three days, and then it went away. A few days after this I started

having tingling sensation and a tension/pressure feeling over the left side

of my face and neck. Very scared I went to a general practitioner who

decided to do another MRI. As the MRI performed just 4 months ago was normal

I was sure this one would be too. But at a complete loss for any explanation

for my symptoms, and being very scared I had the MRI. My results came back,

I have a Chiari-1 malformation with 5mm herniation of the cerebellar

tonsils. The MD told me and was very shocked when I became upset. I had tons

of questions, none of which he was able to answer. He did a search on google

which brought up even more questions and concerns for me. He told me I would

be fine and recommended nothing further.

On one hand I have a diagnosis that finally accounts for all of my symptoms,

but now I am left with tons of new questions and fear. I do not know much

about this diagnosis. I do not know how or if it can progress, if my

symptoms are going to get worse, the possibility of new symptoms. I am most

worried that I will develop syrinxes as those can cause permanent damage. I

am afraid for all of the implications this might have on my life, and after

days of researching on the Internet, I still have yet to find definitive

answers.

I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very careful with how she phrased things but

said that the MRIs showed the same things. She mocked the radiologists who

diagnosed me with Chiari-1, stating that 5mm doesn't qualify and is not the

cause of my symptoms. She said I could find a neurosurgeon, but that they

would " laugh in my face " and turn me away as I am a " healthy " 24 year old.

She seemed to have limited knowledge about Chiari.

I feel like my friends and family do not understand. My parents are in

denial. At this point I just feel very alone and do not know what to do. I

am looking for support and guidance from people who understand what this is

like.

Please if anyone has any advice or information I would be so thankful.

[Guest guest]

,

You are not alone.  The first MRI showed your Chiari, you should ask for copies

of all your films and radiology reports. Your neurologist isn't current on the

Chiari literature 5mm is considered Chiari some docs will call it border line. 

 

The next thing is to take a deep breath and relax (easier said than done). 

 

Step 2 start doing research, you are here so that is good.  Please visit the

Conquer Chiari website, the ASAP website, the Column of Hope website and the

Chiari Institute Website (you are looking for the one in Long Island New

York).  These are all reputable sites with good info.  The National Institute

of Health is also a good resource.

 

Step 3 make and appointment with a Chiari specialist, this will involve travel

but is important.

 

Step 4 find a local neurologist who is willing to work with the specialist and

do check ups every 6 months.

 

I have many of the symptoms you describe, I was diagnosed at age 28 and I am now

45.  I am not in a wheelchair and look perfectly normal.  I also have

syringomyelia in addition to the small Chiari malformation.  My symptoms are

severe enough that I cannot work but I lead a fairly normal life.  I have not

had surgery.  I can tell you that you may hire and fire several local drs.

before you find the righ ones. 

 

All of this can be very frustrating and scary but we are all here for you.

 

________________________________

 

 

 

 

 

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[Guest guest]

 

Thank you for the offer to call. Is there somewhere on yahoo where I can find

your number? Or do we need to exhange via email? I am sorry for such a silly

question...I am new to yahoo groups and do not fully know all of its features

yet...

 

How did your surgery go? Are you symptom free now? I am unaware of the success

rate for surgery...

Currently I lead a very active lifestyle. I am scared this all might be taken

away from me due to chiari

________________________________

To: " "

< >

Sent: Thursday, June 28, 2012 11:38 PM

Subject: Re: Recently Diagnosed and scared

 

You are welcome to call me I was 33 when it happened to me I am 9 years post op

I was labeled a hypochondriac

Sent from my iPad

On Jun 28, 2012, at 9:58 PM, Eubanks <mailto:apple1417%40yahoo.com>

wrote:

> Hi everyone,

>

>

> Here is my story,

>

> I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

> I was worried for MS, so I found a neurologist in San , Tx who did a

MRI of the brain and spinal cord. I was told everything was normal and MS was

ruled out.

> At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

> He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

>

> About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be too.

But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

>

> On one hand I have a diagnosis that finally accounts for all of my symptoms,

but now I am left with tons of new questions and fear. I do not know much about

this diagnosis. I do not know how or if it can progress, if my symptoms are

going to get worse, the possibility of new symptoms. I am most worried that I

will develop syrinxes as those can cause permanent damage. I am afraid for all

of the implications this might have on my life, and after days of researching on

the Internet, I still have yet to find definitive answers.

>

> I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

>

> I feel like my friends and family do not understand. My parents are in denial.

At this point I just feel very alone and do not know what to do. I am looking

for support and guidance from people who understand what this is like.

>

> Please if anyone has any advice or information I would be so thankful.

>

>

>

>

>

>

[Guest guest]

,

When you see a chiari specialist, one thing they will help you determine is how

much chiari is impacting your life, or not. It is not a pre-commitment to

surgery but a commitment to getting the best info about what you have and how to

take care of it.

You may find, over time, that certain activities will make the chiari worse and

choose not to do them like bungee jumping or anything that hits the head. You

have gotten your diagnosis early in life that is great.

Like others on this list, I had problems early in life but was diagnosed in my

40's. We did not know chiropractic was counter indicated, and I got adjustments

for years, which really aggravated my chiari and worsened it.

Getting info and maybe treatment early in life might spare you from the

downslide others of us experienced -- pain, visual problems, balance issues,

brain fog -- to name a few.

As for family not understanding, find your advocates in friends or family. The

others may or may not come around.

Chiari 5mm is not benign. Get opinions from chiari specialists, not naysayers.

BTW, doctors are not infallible, they are human. I have learned to not go back

to anyone who discounts my pain OR who does not like that I am a well informed

patient. - say/think " thanks for sharing " and move on.

I hope this listserv is helpful. It helped, and contuinues to help, me.

Hanna

Sent from my phone. Please excse typos and short messages.

Re: Recently Diagnosed and scared

 

You are welcome to call me I was 33 when it happened to me I am 9 years post op

I was labeled a hypochondriac

Sent from my iPad

On Jun 28, 2012, at 9:58 PM, Eubanks <mailto:apple1417%40yahoo.com>

wrote:

> Hi everyone,

>

>

> Here is my story,

>

> I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

> I was worried for MS, so I found a neurologist in San , Tx who did a

MRI of the brain and spinal cord. I was told everything was normal and MS was

ruled out.

> At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

> He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

>

> About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be too.

But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

>

> On one hand I have a diagnosis that finally accounts for all of my symptoms,

but now I am left with tons of new questions and fear. I do not know much about

this diagnosis. I do not know how or if it can progress, if my symptoms are

going to get worse, the possibility of new symptoms. I am most worried that I

will develop syrinxes as those can cause permanent damage. I am afraid for all

of the implications this might have on my life, and after days of researching on

the Internet, I still have yet to find definitive answers.

>

> I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

>

> I feel like my friends and family do not understand. My parents are in

denial. At this point I just feel very alone and do not know what to do. I am

looking for support and guidance from people who understand what this is like.

>

> Please if anyone has any advice or information I would be so thankful.

>

>

>

>

>

>

[Guest guest]

You can comunicate with us by email and, as far as I understood any member

can give you other directions, in my case be free to write me directly to my

email and in any case we can met by skype or other source, what ever you

want.

De: Eubanks

Responder a: < >

Fecha: viernes 29 de junio de 2012 17:23

Para: " "

< >

Asunto: Re: Recently Diagnosed and scared

Thank you for the offer to call. Is there somewhere on yahoo where I can

find your number? Or do we need to exhange via email? I am sorry for such a

silly question...I am new to yahoo groups and do not fully know all of its

features yet...

How did your surgery go? Are you symptom free now? I am unaware of the

success rate for surgery...

Currently I lead a very active lifestyle. I am scared this all might be

taken away from me due to chiari

________________________________

From: " Tuppernikki@... <mailto:Tuppernikki%40aol.com> "

<Tuppernikki@... <mailto:Tuppernikki%40aol.com> >

To: "

<mailto:%40yahoogroups.com> "

<

<mailto:%40yahoogroups.com> >

Sent: Thursday, June 28, 2012 11:38 PM

Subject: Re: Recently Diagnosed and scared

You are welcome to call me I was 33 when it happened to me I am 9 years post

op I was labeled a hypochondriac

Sent from my iPad

On Jun 28, 2012, at 9:58 PM, Eubanks <mailto:apple1417%40yahoo.com>

wrote:

> Hi everyone,

>

>

> Here is my story,

>

> I am 24 years old and have been having symptoms that are like MS for almost 2

years now. My first symptoms were decreased sensation to touch and hot/cold in

my fingertips and feet.

> I was worried for MS, so I found a neurologist in San , Tx who did a

MRI of the brain and spinal cord. I was told everything was normal and MS was

ruled out.

> At this point I turned to my naturopathic doctor who did tests screening for

toxins (plastics and heavy metals) which could be built up in my system. These

tests cost about $1,500 as insurance does not cover anything prescribed by

naturopaths. I went through in spite of the cost because I was still searching

for answers. Once again everything was normal.

> He concluded that while my symptoms are weird he could not find anything. He

recommended some supplements.

>

> About 3 weeks ago I developed a new symptom, which was vertigo. This was very

scary for me as I have never experienced this before. It was very bad for three

days, and then it went away. A few days after this I started having tingling

sensation and a tension/pressure feeling over the left side of my face and neck.

Very scared I went to a general practitioner who decided to do another MRI. As

the MRI performed just 4 months ago was normal I was sure this one would be too.

But at a complete loss for any explanation for my symptoms, and being very

scared I had the MRI. My results came back, I have a Chiari-1 malformation with

5mm herniation of the cerebellar tonsils. The MD told me and was very shocked

when I became upset. I had tons of questions, none of which he was able to

answer. He did a search on google which brought up even more questions and

concerns for me. He told me I would be fine and recommended nothing further.

>

> On one hand I have a diagnosis that finally accounts for all of my symptoms,

but now I am left with tons of new questions and fear. I do not know much about

this diagnosis. I do not know how or if it can progress, if my symptoms are

going to get worse, the possibility of new symptoms. I am most worried that I

will develop syrinxes as those can cause permanent damage. I am afraid for all

of the implications this might have on my life, and after days of researching on

the Internet, I still have yet to find definitive answers.

>

> I did contact my neurologist from San asking why this was not caught

from my first MRI. She was very careful with how she phrased things but said

that the MRIs showed the same things. She mocked the radiologists who diagnosed

me with Chiari-1, stating that 5mm doesn't qualify and is not the cause of my

symptoms. She said I could find a neurosurgeon, but that they would " laugh in my

face " and turn me away as I am a " healthy " 24 year old. She seemed to have

limited knowledge about Chiari.

>

> I feel like my friends and family do not understand. My parents are in denial.

At this point I just feel very alone and do not know what to do. I am looking

for support and guidance from people who understand what this is like.

>

> Please if anyone has any advice or information I would be so thankful.

>

>

>

>

>

>

[Guest guest]

Hi Everyone! Sorry I've been off line for a while but I had my third fusion and

we all know the need to let our bodies heal.

I've been listening to your e-mails through my I-phone and some of your comments

are wonderful.

I have two small children that add to the challenge of making sure I get plenty

of rest! I do not regret having them for one min but I do wish I had a bit more

knowledge about EDS and so on...

However, with the evolution of time I pray my children will have an easier time

than myself (child 1 is confirmed and child 2 I'm going to let the TCI team

decide when they want to test her)

But I wanted to ask our group about their personal experience with the when and

the things that cause more concern when it came to there children.

My 3 year old daughter took a good fall with just being a kid and trying to keep

up with the older kids during the play date. She passed out in my arms after, I

filially got to her, and it took a whole min of pinching the back of arm and

legs, along with me actually giving a small puff of air into her lungs that she

came around!

We went to the ER got a CT with a note of the contusion and something with her

sines. Two days later she was running a small fever, we took her to our

wonderful ENT MD, and he noticed she had fluid in one of her ears but no

infection. I'm taking her back in 4 more weeks, but now she saying the back of

her head hurts. (I'm personally keeping that on the back burner b/c she knows I

just had surgery and mine hurts). I almost want to do the MRI just to know. My

5 year old son has it and what looks like EDS, so we just keep an eye on him and

no football!

Is it wrong to want to know and put your children through what's needed to have

an MRI at such a young age?

When my son says his legs hurt we know to give ice packs and Advil, and life

goes on! This is the first time my second child has done something to make me

worried!

Bea

Sent from my iPhone

> hipocondrias