Unsolicited advice

General
1

I woke this morning to the very sad news that we lost a member. She was relatively young and a mother. As I thought about this throughout the day the sadness was taken over by anger. I am angry. “It’s all in your head”, “well, you look good”, “nothing to worry about since you were probably born with it”. “No big surgery - one of the easiest ones a neurosurgeon preforms”. I have been in this whirlwind now for over three years. I have always tried to give hope and be positive. But at what point are we all avoiding what the bad result could be? If we hear cancer - even the most cure able forms - it shakes you to the core. Are we all being naive about the approach we take when dealing with this condition? I have my own theories but often I keep them to myself to allow the medical community care for us. But I am honestly losing faith in their full understanding of the condition as a whole. If you don’t care to hear my opinion or advice for getting treatment feel free to stop reading now. Know that I only wish everyone the best and want everyone to have a good outcome. Please don’t think this is a know it all approach - as I am still in the rats maze myself.

If you find you have chiari - if you were my child - this would be what I would do.

  1. Get checked for ehlers dahnlos - too many of us have it for it to be coincidental or unrelated

  2. Be tested for dysautonomia again too many to be coincidental - a result of pressure on the nerves and diminished blood flow cerebral flow exchange

  3. A flexion/ extension upright MRI

  4. Rotational ct scan

  5. A sleep study for apnea

From here I would learn all I could about all these conditions and how they are all intertwined.

If you wonder where I have come up with all this or why this would be my approach - I have had two surgeries to correct that stupid chiari and there are just days I am worse off than before. I am now facing one if not two more to correct things that are still not right. As for the chiari - mine is perfect!! Non existent. If I didn’t have the mesh showing on the scan you would never know I had a problem. The rest is fully my opinion and no one has confirmed my theory - but honestly when things make sense then it just makes sense. I have ehlers dahnlos - cervical instability - perpetuated the chiari - caused dysautonomia - surgery made my already flexible muscles over stretched making me a bobble head - again making things very uncomfortable daily as it exacerbated the instability. My skull is actually not hinged in my spine it slides around. May only be mm’s but when it ain’t supposed to move and it does… Everything in your head is only separated by mm’s

I never want to hear about any of you on Facebook as I drink my coffee. I never want to spend another morning crying over a preventable loss. Please everyone get checked for ehlers dahnlos, cervical instability, dysautonomia and sleep apnea. There are some dieeases and situations where there is just no cure - I don’t think that is the case with chiari with all the right steps and knowledge.

I hope this is received with the intention that it was written. I have had years to watch, learn and observe - what if you don’t have that luxury. Obviously I also don’t want to be an alarmist but often drs don’t have the proper numbers to correlate the conditions. If the patients are educated perhaps we really can be the ones to bring on change.

Best wishes to you all

2

I received your message with the well-intention you meant, and I agree. The:

EDS

Cranio-cervical instability

Dysautonomia

are pertinent!

The problem arising is finding a Chiari specialist who screens for these. A lot of them don’t, we have to be informed and vigilant.

3

Well said Beeba!!!! I feel the same sadness and anger that you do. When will doctors take these conditions seriously? When will they connect the dots? Chiari is a SYMPTOM of another underlying problem....usually EDS....however since chiari causes so many symptoms on its own.... many "specialists" stop at chiari being the problem when really, doing just a decompression is like putting a bandaid on and never getting to the root problem. That is why so many go on to have so many more issues...b/c essentially the decompression surgery only exascerbates the CCI etc.... when CCI is failed to be recognized we are essentially walking timebombs. I had such severe anterior and posterior brainstem compression that I was literally an accident away from becoming a quadriplegic or dead! This is not stuff to take lightly!

When will our awareness movement get the attention that it deserves? When will more research be done? How can just a couple TRUE SPECIALISTS that get the WHOLE picture teach the rest of the medical community about the complexity and the very REAL DANGER of these conditions???? They are so inundated by desperate patients needing help and they are trying to help as many as they can..... there aren't possibly enough hours in the day or days in the year for them to help everyone that needs it AND educate the medical community on what really needs to be done for patients like us. I constantly think about the Breast Cancer movement and how it must've started at such a grassroots level...and now look....everytime you turn around there is a pink ribbon somewhere. Everyone automatically knows what that pink ribbon stands for. How did that grow to the huge awareness campaign that it is today? That is what we need. Wouldn't it be nice if there were purple and zebra stripe ribbons everywhere and people knew what that meant? This is our BRAIN we are talking about...... why isn't it as easily accepted as BOOBS? It is beyond frustrating to me. Yes...for those of us who have been fortunate enough to travel to the few TRUE SPECIALISTS we are beyond lucky/blessed....but should everyone really have to spend so much $ and travel so far from home to get the help that they need? Shouldn't there be specialists at every major medical institution in the country? Something has to be done b/c there are going to be too many other senseless lost lives along the way b/c of doctors minimizing these conditions. I have tried so many times to contact top media to try to get the word out there..... so far my pleas have fallen on deaf ears/blind eyes but I will continue trying. We need someone to fight for us to get the awareness that we need so that people can walk down the right path to getting the help that they need. All of the suggestions of what needs to be done for screening are perfect, Beeba. Sadly, we are put through far too many useless tests that cost tons of $ and yield wrong answers. All it takes is the upright MRI and rotational CT and an educated Dr on the other end to look at it! Sounds simple enough...if only it was!

We, as a group, must keep fighting though. The sad stories of the lives that were lost could be me...could be you...could be someone that you love if we aren't taken seriously!

Thank you for posting what you did Beeba....we all need to get that fire within us to keep fighting for our VERY REAL cause!

4

Thank you. It may have been “unsolicited advice” but it was very much appreciated.

5

Why did they die!? I see another NS in 2 weeks! I need to know what to ask for! I am a nurse with 4 children. I can’t die, but I can’t LIVE like this anymore! Everytime I respond to this group I don’t get replies! Am I doing something wrong?

6

I am on this site because my 22 year old daughter has chiari and had decompression in Jan 2013 followed by second surgery for sf leak followed by menigitis and now 10 months later is still having neck shoulder and head pain every xxxx day. Im scared for her and I hate not knowing what to do. Going next week to new neuro doctor and going to suggest all of the test above. Thank you for the info. I think we keep trying to bring awareness in our areas we need more champaigns we matter.

7

Very well said, may God keep you in his good graces! All my Best!

Love to all…“NEVER QUIT”

Shay

8

I completely agree with you. I am tired of doctors saying you are ok and it is in your head or you have fibromyalgia. All we want is answers and to feel better. As I have said I am alive but I am not livi g. I wish that we all wake up and not only get a real answer but yet get better!!!

9

Thank you for posting this! My prayers go out to her & her family. I am so glad to read the information you shared; I’ve had four surgeries for my chiari, had multiple bouts of meningitis, seizures. I’ve seen doctors at some of the best research hospitals in the southeast , and I’ve never been tested for any of these things. I will definitely be addressing this with my doctor!

10

Thank you for posting this. I was dx with CM1 last month and today informed I have a leaky heart valve and a blockage of under 50% in my caritod arteries. I am 41 years old. I asked the cardiologist about EDS to day and he said there was no sign of it in the ultrasound. I have a follow up with my neurologist next week but going to ask her if she can try and get me a referral with Dr. Trumble in Orlando being he is the closest Chiari Specialist to me.

11

This seems disheartening coming from someone who is two days post op like myself. I am seeing one of the most respected specialist I chiari field nut was not tested fo any of these things. How and why dis this person pass away?

12

Hazel,

Yes! please see a Chiari specialist. Not sure what your doc meant by “not being able to see EDS on the ultrasound” this doesn’t sound right at all. Eds is a genetic problem with formation of collagen elastin. It can affect any joint, ligament, vessel, tissue. There is a type of EDS that includes clotting problems. Not trying to put more on your plate, just be aware and researched up so you know what is happening to you.

Jenn

13

Thanks Jenn,

I am planning on asking my doctor to refer me to Dr. Trumble and hopefully he will see me, it is my understanding that he mainly treats children but he is the only one close with out drive 4 or more hours away.


jcdemar said:

Hazel,

Yes! please see a Chiari specialist. Not sure what your doc meant by "not being able to see EDS on the ultrasound" this doesn't sound right at all. Eds is a genetic problem with formation of collagen elastin. It can affect any joint, ligament, vessel, tissue. There is a type of EDS that includes clotting problems. Not trying to put more on your plate, just be aware and researched up so you know what is happening to you.

Jenn
14

I totally agree with everyone & even wrote a long post and deleted it was because it was very anger filled. I am so disappointed in the Medical Industry for the lack of basic education & across the board consensus about Chiari Malformations and diagnosis and treatments it makes me livid. This morning I asked the Cleveland Clinic Health Chat Directors for two Health Chats on Chiari for the same reason that everyone has voiced here. I have emailed every talk show & media outlet that deals with health issues about CM & the lack of proper healthcare standards and our numerous difficulties. I have even emailed every famous person with CM asking for any assistance they could provide to put the spotlight on CM. I won't give up personally or for everyone with CM and related disorders.

I recently saw a Specialist for major Occipital Nerve Blocks that didn't do them, even though that is why I was sent there specifically , and he had the nerve to look me in the eye and told me " You know you are screwed....You have the worst possible combination of disorders to treat ever." Then he told me his nurse would show me out. I got up and left and I am pretty tough but still left in tears. Having that Specialist tell me that "you are screwed" because of your combination of illnesses was not only insulting & upsetting but it made me realize over time that he was just being totally honest. Not vaguely nice but honest.

And the sad part is until we get either someone very famous, which there is someone that will not come "out of the CM closet for fear it will hurt his career, film insurability and reputation" or someone at the NIH on our side things won't change any time soon. Even if we got media coverage without someone famous it would die down fast. In the past couple of weeks two popular talk shows did shows on Lyme Disease, which can be much more complex than cancer and the discussion stopped there. On one segment two top specialists even disagreed about treatment & possibility of a cure.

So how do we (sorry for this borrowed term) "Stop the Insanity" and help not only ourselves but future Chiarians from being "screwed"?????

1. All Chiarians need to unite for this purpose. Numbers are the only thing people care about.

2. We form a committee from all CM Groups and invite true CM Specialists and associated Disorders Specialists to be involved.

3. We blast all Media and the NIH & our elected officials with the ugly truth about CM until they can't not help us. The squeaky wheel gets the oil.

4. We have a combined conference where Chiarians are the Speakers and the Specialists are the audience. It's very possible I have been invited to two similar conferences this year, one is Nov 13th. I will let you know how it goes.

Nothing Ventured Nothing Gained.

We are Only Holding Ourselves Back.

At Some Point In Everyone's Life There Is A Defining Point.

Joan of Arc said :“Every man gives his life for what he believes ... one life is all we have to live and we live it according to what we believe.”

Do You Believe in Making the Current CM Situation with Healthcare Better? We Are Currently Giving Our Lives Away When It Doesn't Have To Be This Way !!!

This also made me think of Aaron Tippin Song "You've got to Stand for Something"

http://www.youtube.com/watch?v=Z_s-Qk07KxA

Chorus: He'd say you've got to stand for something or you'll fall for anything
You've got to be your own man not a puppet on a string
Never compromise what's right and uphold your family name
You've got to stand for something or you'll fall for anything

How can we complain or be angry if we aren't willing to make a real difference? An across the Medical Community difference so no one else has to suffer as we do.

Dr Wayne Dyer said: They say extraordinary is doing the ordinary things, well.

Do we want to be extraordinary or do we want to look at another generation of Chiarians and tell them we are sorry we never tried and mourn more friends and sit around as we become less healthy?

I can't do it alone.This has to be a group decision and will take lots of commitment and those to pick up when others may be too ill.

So ......You wanna change the Chiari World?

Tracy Z.

15

how do people die from this

16

Applause! So far, I have read found a total of two news articles about chiari- one was about a lion that had it and received brain surgery and the other was about a pro-golfer with chiari… That pretty much sums up the media coverage I’ve seen on this disorder. With that said, the sad thing is that lion was diagnosed and treated incredibly quickly compared to myself and most people I know with chiari, so, at least the veterinary world seems aware of chiari :slight_smile:

17

I had a sleep study last week and was diagnosed with central sleep apnea. My CNS stops telling my body to breath. I have chiari surgery tomorrow then I am getting a Cpap machine asap when I get home.

18

Beeba, thanks for your very well written post which started this conversation! I totally agree with everyone regarding the need for increased awareness and attention given to this condition. Ever since I was diagnosed, I have been contemplating how to go about increasing the awareness and education about Chiari. I agree that going about it as a group is the way to go. We have to fight for it! I’m on board!

Sonya

19

I have a question as a mother. My daughter was diagnosed in April 2012 and had decompression surgery in June 2013. She takes Topamax which works well for headaches. She has occasional foot numbness. She did have a syrinx before surgery. She functions well and doesn’t complain about anything. Do I pursue more testing? If so, how do I convince doctors to do these tests if she has no symptoms?

20

Foot numbness us a symptom. If you are concerned keep pushing the doctors. I had to take my daughter to 5 doctors just to get the initial CT and be told (despite the 7mm ectopia) she did not have Chiari.
I was enraged! Had I not read the ct report myself we never would have known for sure.
I pushed for the MRI… which came back 9mm Chiari.
As a parent you know better than any Dr when something is wrong.
To the moderators - I totally agree. I am scheduled for c-spine surgery for cord compression next week and am still having testing for autoimmune disorders.
I am worried about the surgery due to heart palpitations and Raynauds symptoms. EKG came back clear (the test took about 40 seconds… wth?!)
All of us have to watch out for our health as most others do see us as “fine”.
We are not fine! We cannot quit and I will not stop until I feel better.
It is our lives not theirs in the balance… we have to make ourselves heard…