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,,
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
Navydad :o ??? :o ??? :o ???
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! ;)
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!
I am so sorry you are so ill, but so very pleased you now have answers. Best wishes for your surgery. Take care. xx
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!! :)
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
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
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
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
Good for you NavyDad. I also feel your frustration with docs. I will think of and pray for you!
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
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 ;D
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
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!
I bet you are feeling so relieved,shocked upset,angry,vindicated,scared,horrified and every other feeling you can possibly feel.Good for you for hanging in there and pursuing answers.Your gut feeling something was wrong in spite of being told it's all in your head was strong.Be very proud of yourself.You still have so much to go through and I wish you the best of luck.
Ruby
I tend to read more than post, but have followed your struggles in your threads.. I hope this is the start of a better life for you... I wish you all the luck in the world with the surgery and your recovery afterwards. Take care x
I;m not holding my breath on all that this surgery will do,, I wonder if the damage thats been done to my nervus system can ever be cured,, I cant belive the weird symptoms I feel over my body,, this moring,, I sat at the kitchen table afraid to even get dressed,, the thought of putting clothese on just makes me sick,, there like putting on a bag of ice cubes,, its weird I know,, then my wife walked past,, just the breeze from her walking by made me feel like I was hit with a stun gun,, my legs and arms are in constant pain,, and I still dont kow one way or teh other wether I have SS or not,, its really maddening,, I;m trying to work a little overtime,, just to get a reserve together wheni go off work,, I havent told my employer yet about the surgery, half afraid too since i have only been back to wokr a little over two mmonths,,
Wow,
Thank you for posting about this. I have been looking for a follow up on how you have been doing. My cousin's daughter has a Chiari malformation. She had the surgery and regained functioning in the right side of her body. She still gets headaches but is doing so much better. I will be thinking of you and hoping it goes well.
KathyL
I must add my own good wishes to you. I will be thinking about you on August 12. Hoping for you that this will aleviate some of the problems and symptoms that you have been experiencing. This has been a difficult road for you. Roxanne
Navydad,
I am so happy that there's an upside for you. Hopfully you will be back to doing ALL the things you enjoy, but have missed!
I will keep you in my thoughts and prays!
I also think Iris' suggestion is a good one, do have them send the reports. It might be helpful in a speedy diagnosis for someone else they encounter.Who knows might save another's life!
PEACE & BE BLESSED
Bernice
Navydad,
See, the doctors were right the whole time, it really was, all in you head :D Glad to see that someone got to the bottom of this and you will get relief of all or at least most of your symptoms.
I really dont know what to write,, just some words I guess, I to am praying that this s urgery works for some of my symptoms, I was at the ENT the other day and he was able to pull up the report on the sural nerve biopsy I had done a week ago,, seems there is some chronic loss of axons,, and a few other thins going on,, but no idea what is behind all of it,, I dont think the surgery will help with that,,
Its reallly warm out today and just being at work is hard,, I am spending a lot of time outside and its making me physically sick, hard to breath,, hard to swallow,, extra dry mouth, How much water can one person drink?,, I;lm so tired wheni get home,, I am not much of a joy to be around much,,,, I hate what Sjygrons has done to me along with the other thing going on,,
I havent told my employer that I will be out of work for at least a month,, I just got back a month and a half ago,, SIGH,,
Its amazing how this disease strikes everony so differently,, slowly I watched myslef just deteriorate,, first the leg pain,, dry mouth,, dry eyes,, then in March noticing that i had to wear something under my pants to keep my legs warm,, this from a person that used to go outside in a T-Shirt in the winter time,, now if it gets below 60 i start to shiver,, I have talked to others with some of the same symptoms and they said theres went away after surgery,, I am not looking for that to happen, I think its all part of the neuropathy,, and not much they can do for that,, its not much of a choice really,, esppecially when you still dont kow exactly whats wrong,
I would settle for just some of my life back,, at least the walking part,, wheni was in the hospital hack in January,, the neuro I had was really nice,, she asked me what wouklld I want back,, I told her to be able to just walk,, walk without pain, be able to climb my hills again,, I cant even take out the garbage,, theres a small grade at the end of our driveway,, and last night I tried to take out the cans,, the small grade had me lifting my legs up to get there,, I think what I should say was I was dragging them,
Morings come to early, when you have spent the night coughing from something no one can figure out,, I know what it is,, its that slime they call mucos,, its so thick anymore,, its never gotten better, and the ent is out of ideas,
I worked a double shift on tuesday,, trying to put away money for the upcoming time wheni am off work,, it about killed me,, yesterday I wandered around work like some kind of idiot,, notng made sense,, two of the other electricians are off on vacation, (something I wish I could do),, so were left with just me and a another guy,, its been heck,, oh well,, just some rantings of a crazy person LOL,, hope everyne is diong well,, and God Bless
Hi Navydad
You're certainly entitled to a bit of a rant and we're the people to rant to!
It's going to be hard to keep going over the next month before surgery but we know you can do it, and you can always come here and tell us about the struggle. Who knows how things will change after the surgery? It's very exciting and life has all sorts of possibilities. Maybe you will be able to walk more, as you told the neurologist you dreamed of doing? Sometimes I let myself imagine what it would be like to stride or stroll along by the sea with the wind in my face as I used to do, never realising how privileged and blessed I was to be doing it.
Hope you have a restful evening.
Take care - Chickpea
Navydad,
I'm so happy there is hope that some relief may come from the surgery. Even lessening your symptoms would help. The other thought I have is this may qualify you for total disabilty. I sympathize with your struggles to work and provide for your family.
I'm praying for success to your sugery, and for your day to day functioning up to Aug. 12. Will look forward to reading your rants, prayers, or whatever you post!!
My best to you.
Coopwall