You have Chiari...what about syringomyelia?

[Guest guest]

Hi all,

I want to mention this about Syringomyelia. When I was diagnosed with Chiari,

my GP didn't mention anything at all to me about the Syrinx I had developed.

I just want to let the newer members know that there is a chance they could

already have Syringomyelia as well as Chiari.

Because my doctor knew so little about every aspect of these illnesses, he had

no idea of the importance of my knowing how seriously ill I was. 2 years after

the original diagnosis, I found out that I had syringomyelia and I had a syrinx

going from C-1 to T-5. This is something I had to find out about on my own by

reading my written radiology report and, when I would come across words I

couldn't understand, I put them in a search on the web.

This is what led me to the support group I joined first and in turn was then

led to the Brilliant neurosurgeon, Dr Oro. He was involved in a study on Chiari

along with Duke University.

Even though I have damage that can not be repaired because the syrinx had

become so huge, I am so thankful I had the surgery done and, I feel it was a

huge success mainly because it stopped the progression of both Chiari and

Syringomyelia.

Please keep in mind the fact that both of these disorders are progressive and,

one of the most important facts about the size of both of either of them and how

the size affects our bodies, etc. can be very confusing.

The Chiari herniation I had was 10mm, however, it could have been much

shorter and still, it could have caused the same problems. The most important

thing as far as the size is....How much fluid is blocked. A person may have a

Chiari herniation that is considered, by a doctor who doesn't have current info

about the illness, to be so small they may think it won't be causing symptoms

when, in fact, it can be almost blocking all normal spinal fluid flow. This is

what will cause the body to create a syrinx.

Our head, if the blockage is severe, will fill with the fluid and, continue to

fill until we make a move ( maybe just a simple turn of our head) that will let

the fluid formally trapped in our head, come out of that area and gush down

rapidly.

The amount of fluid that gushes out finally, over time) becomes a huge problem

because the body must somehow compensate for all of this extra spinal fluid.

This is when a place is created inside the spinal cord called a syrinx

(syringomyelia).....Once again size becomes so very important.

A syrinx can become quite long, yet, not cause damage to the spine. The

important factor about the size of one is " How large around it becomes " If it

continues to fill and the breadth of it becomes so large it begins to cause the

bones to be damaged. Once the damage is done to the spinal column, in most

instances, can't be repaired.

If you have a syrinx, but, it hasn't progressed to the point of damage,

please...consider getting the surgery ( decompression)

Because this illness is a syndrome and more is being found out about it all the

time, many of us are seeing a doctor who knows very little about it, and for

certain there have been many, many patients, like myself, who have been

ill-advised as far as the size of the herniation of the brain and when surgery

should be done, etc.

The same can be said about a syrinx. Several people have a very long syrinx or

even more than one, yet, may still have the time to get surgery and have their

lives back, without all of the pain, etc. caused if the spine becomes damaged.

When I first became a member of a support group, I was very ill. I would read

the posts and, pretty much scan through many of them, feeling that they had

nothing at all to do with my situation. If I didn't see the word Chiari, I felt

it wasn't anything I needed to read. Imagine my shock after realizing a " Syrinx "

and ( a word I saw in my med report) " Syringomtelia " were the same thing.

When I was told I had Chiari, my GP didn't seem at all concerned about it.

I had seen him many times because of the headaches, numbness, arm and hand pain,

tingles, and so on until he finally ordered an MRI, but, when telling me what

the problem was, he patted my shoulder and said, " Looks as if you have a little

birth defect in your neck. " He didn't even put a name to it, for me. He was so

nonchalant. I didn't even worry about it until the pain began affecting my life

two years later. As I was reading my original MRI report, I found out that I had

Syringomyelia as well as Chiari. It had NEVER been mentioned at all.

This was the point in my life when I realized a doctor is only as good as he

wants to be and, after going to so many other doctors looking for someone to

help me, I learned just how unethical many can be. I wonder why I was so shocked

and depressed about this, after all, how can we expect a human to have all of

the knowledge we might expect them to have.

This is a rare condition ( not as rare now as before the MRI machine was

invented) I can understand why most doctors know little about it. What I will

never understand and what continues to haunt me is How can a doctor put our

lives in such danger when they lie and claim to know all about these

illnesses.....claim to be experts, and, all the while they are wasting our

precious time, time we could be using to find a Chiari surgeon.

So far, the only treatment for Chiari is brain surgery. Most people who have

developed a syrinx can still be helped so much by a decompression. For some

reason, if there is a syrinx present, it will become empty once the Chiari

decompression surgery is done. They usually do not become empty immediately but,

over a period of time and when the 3 mo post-op check up is done, the syrinx is

usually empty.

I'm posting this today to persuade any newly diagnosed members to get out their

radiology report, and, word for word, do what it's possible your GP didn't

do....know what it says, and, know what those words mean. If you can't find out

on your own, ask a support group for help. Most members are more than happy to

help you understand what it all means.

I hope I have helped someone.

My prayers are always with you each.

Warm Regards,

Judy Marie

____________________________________________________________

Zappos Shoes

Shop Zappos with a FREE $100 Gift Card from us! Click Here.

http://thirdpartyoffers.netzero.net/TGL2241/fc/JKFkuJkEL5P5EfXPToDEutLl5SZEaagIv\

0mMG3W0oMsF1qFgHv75j7/

[Guest guest]

i had a syrinx. the reason it becomes smaller after decompression surgery

is because the surgery corrects the situation that causes the syrinx; think of

it this way (this is how i have always explained the chiari condition to

friends); chiari is a congenital malformation in which the brain stem is

improperly situated on the spinal cord; it creates a cork in a bottle effect,

more

or less. the fluid that is circulated around the brain cannot dissipate

properly and is forced down inside the spine. when our wonderful doctors

successfully decompress us, this eliminates the cork in the bottle and with any

luck,

nature takes its course and allows the body to eventually aborb the fluid

inside our spines.

i was decompressed four years ago at robert wood johnson medical center, new

brunswick, nj, by a top notch young neurosurgeon named mike nosko; he was

amazing and was in my medical plan, surprisingly. my surgery went so well and

was very successful. the damage that was already done prior to surgery does

not go away; i have weird symptoms still, such as burning in my right bicep

and an itchy outer ear, along with that capelike numbness over the shoulder and

neck. when i consider what i could be dealing with today had i not had the

surgery, this is minor stuff.

i wish you all well- debbie

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

I totally agree with you on this one. The first neuro I saw said to me " you have

Chiari and it will cause headaches, we will keep an eye on it " never said when

where or anything else, and when I did go back in with worsening symptoms she

just said, " it can't be causing my pain in the back of my skull, thats

" occipital neuralgia " fast forward to one year later and several different

symptoms I go and see a teaching college neurologist, who does several other

tests and notes I have strange both absent and hyper relfexes, sensory

neuropathy symptoms, pressure headaches, etc. etc.

He ordered a cervical/thoracic mri and there it is, a syrinx. This one mind you

is very small only 1.3 cm in size, but he isn't hesitating!! He set me up an

appointment with a neurosurgeon to discuss possible surgery. I was very very

thankful for a neurologist who listens, looks at the MRI iteself and doesn't

just " read the report " . I asked the first neuro how long the herniation was and

she said she didn't know, she just read the report.

Please always take this condition seriously, I'm not sure if the neurosurgeon

will suggest the operation or not, but am very happy to be discussing this with

someone that understands and listens and takes both you and the condition

seriously. Both myself and my daughter who is now 12 have this, both have about

a 10 mm herniation. Thankfully for us she doesn't have a syrinx in her spine

and we are watching her very very closely. They told me that they will do

repeat MRI's on her every 6 months to a year or sooner if she develops any

symptoms, right now she is symptom free except for a small bit of orthostatic

hypotension that comes and goes. We are both being treated by a teaching

college that is outstanding!!! I see their adult neuro and she is scheduled to

see a peds neuro at the same center. I feel God has put us in the place he wants

us to be to get the care we need and I thank Him everyday for that. It was a

long journey for us to get here. Too

many " quacks " to mention.

I have had chronic headaches for at least 20 years, of course got every kind of

diangosis under the sun for those. It wasn't until a major autoimmune flare in

which I was hospitalized for, that the bloodwork and MRI's that they discovered

the chiari and syrinx for me. Fortunatley the autoimmune side is very mild for

me, as the flare was over a year and a half ago and was due to my thyroid

autoimmune disease, which is extremely common. But you need to take all this

seriously and find a good doctor that will listen, and I know that is so hard

sometimes. But in time I believe this condition will get the recognition it

needs and so many of us are fighting that fight for those yet to come up with

this, especially our own families and children as in my case. I have a son too

who is 14, and so far he doesn't have any symptoms, but we are watching him

closely and will have him checked for this too if the time comes where we

suspect it could be, but

fortunatly it's just myself and my daughter right now.

God be with you all,

Blessings, BJ