3 weeks ago told I have Chiari

[tattie29]

Hi everyone, I am so disappointed, I feel that I am in this alone and not one doctor understands my pain. First of all I was diagnosed with Chiari about three weeks ago and the only thing that the nurse said to me was, " You have a condition called Chiari Malformation and several people has this it's nothing serious". But my body is telling me that it is serious because I have breathing problems, severe fatigue, muscle weakness, nausea, dizziness, headaches, at one point lost strength in my arms, sounds of ocean in my ears, joint pain, and the list can go on. I was seeing my family doc so often she started to think I was a hypocondriac (sorry if spelled wrong) know the back of my neck hurts and straight down my spine, so I go to get an MRI of my back today. I seen a NS that told me that most of my symptoms are not caused by the Chiari and beg to differ, I cried when he said that because he must not know what Chiari is all about, he said that many people live with this and lead normal lives. I told him I'm not those other people and it's affecting my life. I have been a Bus Driver for almost 8 years and could not drive and handle all those kids in the pain that I was in so my job gave me time off. Has anyone ever got short term disability for this because now I can't pay my bills and have three children to take care of WHAT DO I DO ANY SUGGESTIONS ANYBODY? I made an appointment at the CLEVELAND CLINIC hope that appt. goes well.

[Shane99]

I feel better than I did before the surgery, but it looks like some permanant damage was already in place. I have some paralysis and dizziness still.

I also have some lower back and leg problems that may or may not be related to the Chiari or Syrinogomyelia. My Primary Care Doctor say's it could be related or just a "double whammy".

I've seen my Neurosurgeon and Neurologist about it as well and I'm undergoing testing to see where to go withy this next.

Yeah, the waiting is annoying, but then after the surgery - the appointments between various doctors and physical therapist, etc. are so many that you never seem to get any rest. I was just looking a few minutes ago at my schedule and was excited that I don't have any appointments until December 1st. Assuming of course, that I don't get any worse. :)

[Hursty48]

Not too much different to here then is it. Its the waiting for the appointments etc..
Then someone tells you that you need surgery straight away yet no-one see's the urgency before you get to the end guy!!! - until him its a ho hum process isnt it. No-one seems to take much notice - except you
So how are yo now post op?
I know Lovemygirls2  is very happy with the surgery- good news!

[Shane99]

Our basic process over here is; we see a  Pimary Care Physician, who sends us to a specialist. The specialist can order the MRI, then sends us to a surgeon. Pretty straight forward as long as they'll actually do the sending. It often become a problem in getting one doctor to admit they don't understand something and agree that you need a referal.

I started seeing my Primary Care Physician last September, complaining of headaches, dizziness/balance, and a general malaise. It took until the end of March to finally agree to send me to a neurologist. He runs saome tests on me, then orders an MRI and this past April 1st he calls me and tells me to come in and see him. I do and he informs me that I have Chiari Malformation and sends me over the same day to see my neurosurgeon. My NS tells me that I have a 20mm herniation and need to be operated on immediatly. His first opening was for April 23rd - so that's when I had my surgery.

As a basic rule, the recovery time is 6 weeks to light-duty. Assuming no problems and a surgery date near the beginning of January, you might feel well enough to go to the wedding, but you'd need to take it easy.

Talk to Lovemygirls2, she had the surgery about 3 weeks ago and is doing wonderful.

[Hursty48]

Thanks for your input. Yes I think I will ask for my results to be sent to Dr Marcus Stoodley and go for it with him as he knows what he is doing and lets face it - with my personality I am just not going to trust anyone's opinion unless they either a) are an expert in the area of Chiari or b) know all about it from experience ie, you guys.
And if I choose the long road I'll still be here in 6 months wondering what to do. I dont know what its like in America but over here we go to general practitioner who orders the CT Scan and we get the results. He cant order a MRI - only a general medical specialist so the gp refers us onto the specialist (where I am at now) for the MRI and decisions on what we are going to do. Then if action is "thought to be required" by a general specialist (who really doesnt specialise in anything in particular) then he will refer us onto the required specialist ie, NS or whatever. So with waiting times etc.. it can be  a very long drawn out process...............and here i am with an offer from a proffessor in Chiari in NSW offering to see me after my MRI...........think I should book my flight. (I dont know why we arent automatically referred to a NS as it would cut out the middle man)
If surgery is required how long is the healing time? I have a 6 yr old son who I want xmas with and a 23 yr old son getting married on 14th feb next year and dont want to miss that!
Have you had surgery?

[Hursty48]

Hey tattie29 - I found the same thing here. We all sound the same. Its great to have so much support and understanding isnt it - especially when something like this comes into the open and we are left thinking WTF was that???? Did a train just run over me?
Then to find this community is so encourageing.
Even way over here in Australia I feel like a part of this special group of support.
Love to you all
Sue

[tattie29]

Thank You from the bottom of my heart with all your encouraging words, I am so thankful for coming across this site and being able to express myself, this has been really hard on me since finding out. I have always been a go get it type of person and to have a disorder that slows you down well it takes some adjustments. But the feeling to know that your not alone and there are people that do understand is rewarding to me in itself. I posted my message the other morning and I was hoping that I would get a response and I did from a wonderful community. Take care and may God Bless All of You for the courage that You have!

[selmaS]

All of us here have had the same experience...and u r not alone! The best of it is there r drs out there that know and understand too! Research the drs suggested and find one that is right for u.....and making sure he/she is deff a chiari specialist.Also , if u r willing to travel...Dr Oro is very well known.....and does understand.

I know most of us with chiari feel drs just don't understand chiari, but I also found thyroid patients have the same issues....I believe it is the drs don't know or listen well enuff to the patient to assist in getting them well.

Push to get what u need!!

Good luck
Godspeed
"selma"

[Shane99]

Hursty, Chiari generally grows slow, but that's not always the case!! One of the women ion these forums had a 5mm growth (she went from a herniation of 5mm to 10mm) in less than 3 months!

I'd say definitely go to see the expert. He may be able to find one closer to you for the actual surgery, but at least get his input.

[Hursty48]

Sorry to hear you are feeling just like me! Its not a nice place to be. I too am feeling the effects. Everyone says oh it takes years to get worse. Yeah right..........well I've done my years and now it is getting worse quickly and it is so obvious to me.
I have finally got a date for my MRI - 26th Nov but cant get to see specialist doctor (general specialist I might add) until 15th Dec. In the meantime I have been looking around the internet in Australia for Chiari specialists and found Dr Marcus Stoodley who is a NS Proffesor at the McQuarie University in Sydney and a specialist in Chiari. I emailed him and I was surprised and genuinely grateful to get a reply back from him saying that he would be happy to see me after my MRI. He is on the other side of Australia to me - a four hour flight but I am thinking it would be worth my while to travel to see him. What do you think? By the sounds of conversation here - I am thinking nothing but a Chiari specialist is worth seeing.
Tattie - thinking of you way over here and sending warm thoughts your way.
x Sue

[Stargazey]

Hi,
Ditto, to what Shane and the others have said. I am new too.  Thank goodness for everyone here.  Keep searching and read what everyone says. There are alot of people who can help you understand and who listen.  I am so thankful for each and every one.
I went through the exact thing on Monday from the NS I went to. I was so depressed. Everyone had been saying try to get to Dr. Oro, in Colorado. So I called and they were so encouraging. So get to a Chiari Specialist. Don't give up. YOU, know what your body is saying to you. Make them listen or find someone who will. We are all here for you.
God bless,

[Shane99]

Hello and welcome to the boards.

We try to help out around here with advise, comfort, and information - to the best of our abilities anyway. I'm sorry to hear that you're having so much pain and so many problems. I definitely understand the money issues - I sent you a message, hopefully it will help.

It does sound like you have Chiari and Syringomyelia. The first thing you need to do is make sure you have a Chioari Specialist! That's, hands-down, the most important thing right now.

Good luck and keep us in the loop.

[youngwife]

Hi!

You are exactly right.  Chiari *IS* the cause of your symptoms.  And your getting a second opinion...great!.  This, along with prayer and research, are the best steps to take.

I pray that your visit at the Cleveland Clinic is much better!

Take good care of yourself,

Rebecca

[rozia]

either Dr. Tew or Dr. Benzel at Cleveland clinic are both excellant with Chiari