Chiari Malformation

[navydad]

In may I had a brain MRI done and it was noted that I had a Chiari Malformation type 1,, no one did anything about it so I decided to pursue this on my own,, I made appoitments with the neurosurgeons in Pittsburgh,, i saw them last month and they said it wasent that bad but wanted to do more testing to make sure
I spent 10 hours in Pittsburgh yesterday getting two CINE Mris,, there special test that are only done rarely,, when all was said and done,, it appears i have a 8mm herniation of my brain,, basically my brain has sunk down into my spinal cord,, they showed me where the blockage of the spinal fluid is happening,, little is getting through
  When I mentioned all the weird symptoms they said it was consistant with Chiari,, 3 other neuros looked at the films,, radiology looked at them over and over and also came to the conclusion that little spinal fluid is getting through the blockage
I am scheduled for surgery on Aug 12, they make a incision in the back o fhte head,, open up the skull some, and widen the opening of the part where the brain stem and brain sit to aloow the spinal fluid to flow,, wheni told them I have been told theres nothing wrong with me,, and was accused of being nuts,, they just shook there heads and said heres the proof,, they said they believe they can help me to get rid of some of the symptoms that i;m having,
I pray this works,, they said you need to get it done,, its not going to get better and it will only get worse,,

[Shell]

Navydad,
I have been following your posts for some time and have felt bad for the struggles and pain you have gone through.  Your encounters with health care practitioners who have dismissed your symptoms are inexcusable at best.  It sounds like you have found some gems in these new docs who went the extra mile to help you.
I wish you the very best,
Shell

[missyb]

Navydad     
First of all, you are a prime example of why we must be our own advocates, second I am SO glad you have some relief coming your way, and third I hope you take that report and rub it those mean Dr's noses!
This is a huge turning point for you. Things are going no where but up for you from now on! 

[dbab]

Navydad,

All I can say is WOW!  Your persistance on these doctors has been so important.  I'm so sorry that a lot of those doctors have dismissed you.  I can never understand how a person who chooses a profession to help people that some are the least humane people in society.  I know its harsh to say but they really have a great responsibility.

I'm so happy to hear that you are going to get the relief that you need.  No more uphill battle for you anymore.  Good for you for standing up for yourself (and in case you didn't know... every one of us also   Thanks for that!

[jaygee]

I am so sorry you are so ill, but so very pleased you now have answers.  Best wishes for your surgery.  Take care.  xx

[JenJen]

Navydad,

I too have been following your posts, and although I know the thought of brain surgury can be scary, the upside is you have validation now that you aren't crazy and some of these awful symptoms you have been struggling with may finally be cured.  So happy for you!

I have a very mild Chiari I, something like 2 mm.  Not enough to worry about, they say, but I do get frequent headaches and am prone to motion sickness, which I have read are symptoms.  Also symptoms of Sjogren's, (six of one, half-dozen of the other!!)

Keep us updated on your progress!! 

[Katybarstool]

Navydad

I bet you are shell-shocked with the news. I'm so thankful that you have found some people who actually know their stuff and may be able to help you.

I will be keeping you in my prayers.

God bless.
Kathyx

[lesmom]

It pays to be proactive even in our lowest points. Best of luck with your surgery and I will say many prayers for you that THIS IS the answer.
Hang in there and tanks for letting us know what you're going through.
Take care,
Leslie

[Dolly Dimples]

  Hi Navy Dad, I am so glad that you now have found some reason for the mess you have been in for so long time.

           You have always had my deep sympathy for the fight you have had to battle.

  You now have my sincere prayers that you will soon get back to better health and happiness. Roll on August 12th!

  Good Luck and God Bless, Dolly

[yodeb]

navyday,

I am so happy for you that they have made this diagnosis finally.  I am marking my calendar for August 12th and will be thinking about you and sending prayers and good wishes your way that day.
All the best to you,

deb

[Crabcakes]

Good for you NavyDad. I also feel your frustration with docs. I will think of and pray for you!

[Patze]

Wow Navydad, but I'm sure glad to see that you have an answer of sorts.  That is so amazing, a Chiari Malformation type 1, that is a bit different.  I know that it should relief some of your symptoms, but how are you feeling about it?

Hang in there and I wish you the best my friend upon your upcoming surgery, and please keep us updated, okay?


Patze

[irish]

navydad, There, you see, you were not nuts no matter what they told you. Good for you for pursuing this. It took you so darn long to get this mystery solved. I would ask the neuros to send reports to those docs that told you it was all in your head.

We all knew that you were really sick and suffering and I think we were all so darn frustrated about the run around you were getting.Good for you and good for those docs. It was well worth it. I will pray for you, your surgery and the docs who do it. Let us know how it all goes. We will be anxiously awaiting. Darn, this really does make a person mad when we have to advocate and work so hard to find good medical care. Yeaaaaa! Good for you. Hope your family will be able to help out with things after your surgery. Irish

[kindandcaring]

It's really good news..a diagnosis..it's gold dust when you have been struggling so...good stuff !

Your self belief got you through !

All my bestest for the op and wishing you get much better post op

[lynnmarie219]

Navydad,


Thank goodness for those wonderful doctors! I'm so glad that you have some answers and I hope and pray that the surgery on August 12th is a huge success for you!

Thank you for sharing this news with us...my thoughts continue to be with you!