NCC What MRI have y'all had?

January 10, 2011

Hi All-

I have a question that I hope gets a lot of response.

I am scheduled for another cine MRI this Friday of my head. I have

asked,begged,even growled for a MRI of the whole spine and here I am almost 8

years into this and I still have yet to have no more then head MRI's, once I did

talk my NS into ordering cervical as well but that's it.

I have a LP shunt, I have a huge hump on the lower part of my back,plus pain.

Have any of you ever have your NS tell you that you have no syrinx without

having proof via a MRI?

My old NS, who also did my decomp, says there isn't a syrinx, but this is also

the same guy who tried to tell my family that the Chiari is cured.

So recently I saw a new NS, she seems nice but clearly does not know much about

Chiari either. She has ordered this MRI, but when I asked her to please do the

spine she said that would be considered " nonessential " and that I would have to

pay the difference in cost out of pocket.

The biggest reason this is bothering me is the symptoms I am having and I wonder

how bad this my get before they check.

Thank you all for reading and responding.

Bev

January 10, 2011

HI Bev,

In my experience, having Chiari 0 and SM due to TCS and after almost 10 MRIs

of head and 7 of the spine and around 10 doctors NS and Neurologysts:

1. Syringomyelia (SM) could be asymptomatic, this means you do not feel it,

you do not have any symptoms but you can still have it right there in any

place cervical or thoracic, therefore NO ONE can tell you that you do not

need an MRI if you have Chiari as many people with Chiari has SM too, or if

you have any spine related symptoms.

2. Many times what happens is that SM is so rare that doctors or

radiologysts do not have a clue about it. In my case SM was there since the

first MRI in 2002 but they do not know how to recognize it, so they missed

it, they reported it as normal while I had a syrinx that went from the fist

thoracic vertebra to the 10th one, therefore all symptoms and disease

advanced because they could not see the white line in the middle of the

spine, they always say when I asked what is that white line: ³this is

normal². Once I went to a NL that took a photograph of the SM as he has

never seen one.

3. The other problem is that for a NL perspective a neurological problem

related to the spine has 3 main symptoms: pain, loss of sensation or loss of

movement, so if you do not have any of these 3 the MRI is not justified for

the insurance company. What they are forgetting or missing is that a the

autonomous nervous system (ANS) exists, it is part of the spine and that it

is the one that controls heart beating, blood blow or circulation,

breathing, equilibrium, your bladder, your intestines, and others, and these

are affected by Chiari but also in the case of SM many of the first symptoms

that appears at the beginning of the disease are related to your ANS:

problems with bladder, your intestines, even the reproductive system and so

on. So one strategy when you do not have the 3 main symptoms (loss of

sensation, movement or pain) is to remind your neurologyst that the

autonomous nervous system exists, it is in the spine and it should be

checked too. While many of these symptoms appeared just with Chiari too they

are also related to spine. I remember an NS that when I started saying to

him that my first symptom was that I went to the bathroom like 20 times in a

day he said to me: and what is the relationship with the bladder and your

nervous system?? I went out ASAP.

So the answer for your question is yes doctors have say to me for years that

I do not have nothing in my spine or in any place, before and after the MRI,

they say too that everything was in my head while I had the three of them:

Chiari 0, SM and TCS. In addition to this, when I did have the SM shown up

in an MRI and they also recognize I have it at last they say it was not

important, that many people had it and nothing happened as in many cases SM