Im 53 and i have had this all my life. I still work and did 20 years in the NYC police Dept and . As long as you can function i feel there is no need to operate. Thats me. if you want the Doctors info in NY let know. always be strong you can take alot more then you think
The only reason I posted that video was for awareness, and a reality check for people in my life who didn't think I had any problems. The truth is that Marissa Irwin had a connective tissue disorder as well as all those other issues. Every Chiari patient is totally different. Her story and the surgery she had done was absolutely incredible... however, we are all not her. I don't know how bad her EDS (ehlers danlos syndrome) was or is, or if professionals truly understand that disorder right now. I'm would say that they don't, because they think it's genetic, and we don't fully have a grasp on DNA yet, do we? (no)
Her symptoms were obviously too much handle so they did what they thought was necessary to remedy the situation. My own symptoms are too much for me to handle and I'm going to have surgery as well. My symptoms are completely different than Marissa's and I manage them the best I can with medication, but these are not healthy medications and to completely rely on them seems ludicrous. But why would the same surgery that helped Marissa be suggested to me?
Dr. B basically gave me to roads when he was explaining surgery... one that did not involve fusion and one that did, so that was up to me to decide. It seems that fusion would be the sure-fire way to remedy my situation and never have to deal with it again, yet on the other hand I would be dealing with being fused every remaining day of my life.
My second opinion NS said that a simple craniectomy with dural splitting would solve everything and that was based on patients that he has personally followed for periods of over 10 years.
Pepsican, you put up a strong front and it's a very common attitude for Males to have but I know that if you were truly suffering, and you knew there was a solution... a way out of that suffering into a life of health... where you could be more of a man than you ever thought you could be... I know you would do it. Especially when there's a good possibility that your current condition could get much much worse. If you refuse to get treatment, then I strongly urge you to get regular MRI's to monitor your condition. Yes, you're tough because you have to be! I know it, and live it, and so do most people on this site. If you get syringomyelia and you let that go on for long enough, you will be paralyzed among other things.
The need for treatment is a quality of life issue. I am choosing a surgery that I believe in because I am sick of being sick. I am sick of this condition running my life... practically denying me even a chance at life. I have felt like something was wrong ever since I can remember. A weight on my shoulders too heavy to lift, something kicking you when you're down... which sucks when you're always down. But we power through it because we know deep down that there is an answer somewhere. When I got that MRI into my computer and saw that big lump of compressed brain, I was like "ahhhhh I caught you, you #$(&#(*&$#*$!!!!!!" :)
This was a complete rant but I hope somebody gets something out of it. If nothing else, I just want to say that when I found out that I really did have a problem and that it is treatable.... I ask God every day to help me and guide me to the right help, because I want to be cured. I want to be an example of a successful treatment. And most importantly I don't want to die as an example of being neglected, or not taken seriously, or even being treated inhumanely. I don't want to be hurt just to spite all these people that have hurt me.
That is all in the past and all I want is a bright future :)
CourtneyinNC said:
I just joined today...so I'm not sure if you have found any answers yet. I was diagnosed with both CM and Basilar Invagination. Decompression alone will do more harm than good alone but it sounds like they want to do craino cervical fusion...same as me.
I saw dr oro in CO but if you are in NY the Chiari institute is there. They are said to be best of the best. I saw a mystery diagnoses show once with a girl that had everything we do... Basilar invagination/ retroflexed odontoid and Chiari...her doctors were at the Chiari institute. Not sure if you have been there?
The surgery through the mouth is the absolute hardest way to get this done....if they have to go through the front I would ask that they do it through the neck. But I am praying if I ever decide to have the surgery they will be able to go through the back for both the fusion and the decompression. I am opting to wait...I have made some lifestyle changes...I am way more careful since my cranium is not on tight ;). But I am not willing to subject myself to that life changing surgery when I am able to live normally now....one day my normal life may change and surgery will be a choice I choose to make...but not yet.
Anyway...good luck! Ps I don't recommend going against doctors orders...it's just the choice I have made. I recommend making the choice you are comfortable with :)
One doctor said do the decmpression and fusion the other doctor said just do the decompression so i get two different opinions but liked the doctor that said do the compression he said he has done about 100 of them. The 1st doctor was in a big rush to do it and wanted to go threw the mouth and the other didnt think it as neccessary to do.How can i send you a pic of the x ray
Are you on a PC or Mac? If you have a cd of your scans, you can download a free program called Osirix and export any image as a jpeg (the program is for both PC and Mac).
Pepsican said:
One doctor said do the decmpression and fusion the other doctor said just do the decompression so i get two different opinions but liked the doctor that said do the compression he said he has done about 100 of them. The 1st doctor was in a big rush to do it and wanted to go threw the mouth and the other didnt think it as neccessary to do.How can i send you a pic of the x ray
Hi everyone. I've just joined and noticed these postings. I'd be interested to hear if anyone has opted for the Basilar Invagination surgeries (removal of ontondoid and cervical fusion). My daughter has been told by one NS that she needs these surgeries immediately, and another has advised us to stay away from this surgery for as long as possible. The fusion sounds awful, especially since my daughter already has the whole of the thoracic spine fused. She has already had Chiari decompression and the thought of these surgeries is overwhelming!!! We are due to see Dr Paul Gardner at UPMC (PA) next week and he offers Endoscopic Endonasal surgery for this condition? We will see......
Omg Dr gardner is my doctor, I just saw him on tues. I can’t answer your question, as i only have chiari- I just saw the name and wanted to say hi! (dr gardner did my chiari decompression in aug 09)
Btw, not sure if you have met him yet but he is a really great NS and very nice, actually kind of bashful lol. Not at all arrogant or standoffish like some can be. How old is your daughter?