Dose of Reality

So um...

Well how should I put this??

I HAD BRAIN SURGERY!!!!!!

It just hit me after a phone conversation with a fellow Chiarian and Zipperhead. Not only that, but I also have a, no two, conditions that will change my life forever. I just thought I would go in and have part of my skull, spine and BRAIN removed and go back to having a life better than I could ever imagine. It NEVER hit me that I had MAJOR surgery. Surgery that was NOT a cure for this, but just a way to maintain further deteration. Why is it so hard for me t accept that I will not be able to go right back into the swing of things and start running Marathons or being Wonder Woman? I just made this seem so simple... "they go in, remove some skull, some neck and some brain and back to same old, same old in a couple of months." HELLO!!! Things will NEVER be "same old, same old" again. Did anyone else who has been diagnosed or has had surgery feel that this is the way it was, is or will be too? Did anyone else have to get a reality check? Is anyone elese still in denial? Just wondering if I am the only one to have such a hard time accepting that I will NEVER be the same or even 100% ever.

Much Love and Blessings,

Crystal

Wow Crystal! I just want to give you a big hug!

I can honestly say thats how I felt in the beginning when I first found out about it all for myself. In 2003 when I was diagnosed and then the surgery. I basically thought it was going to be the end of it all. After awhile I began to accept it as a part of my life that I can't completely change. It is something I have to live with. I will fight it though. I will not let it take over my life. I want my life to be as normal as possible. I know I still have days (the bad Chiari days) where this all hits me again. It makes me wonder whether I've fully accepted it. But I believe I have accepted it as close to 100% that is possible. I think there will always be days we will think "why me?" or "is this real" things like that. But we have to keep fighting and not let it take over:)

Would you mind if I quote this in my blog? If not its ok:) If so, I could leave it annonymous or put your information, whatever you wish. I just love how you wrote it as I can completely sympathize with feeling that way.

http://chiari-life.blogspot.com

*Hugs*

Alicia

Crystal,

I totally agree with you that decompression is major surgery! It is also very difficult to recover from and takes a long time. I don't remember how far out of surgery you are, but it is still very early. You will continue to make improvements in your recovery, just give it more time.

I think that you should talk to your surgeon again. If he told you that they were removing part of your brain and spine, you may have heard him wrong. I have never heard of them taking part of the brain out. In everything I have read in the last three years states that they take a small (very small) part of the skull and maybe the backs of C1 & C2, not the whole disks. I have never seen where they actually remove part of the brain. Maybe you should ask for your surgery notes from the hospital so you can see exactly what they did during your surgery. The fellow Chiarian and Zipperhead you talked to may have been mistaken if they told you this. I'm no neurosurgery expert by far, but I would say removing part of your brain did not happen.

You are right in saying this is not a cure, but a treatment. That's why we try to raise money for research and a "cure"! There isn't one! It is extremely difficult to accept that we are going to always have some issues, but hopefully as you recover you will continue to improve! Maybe never get to 100%, but may 90% and you can return to your previous life with a few adjustments! We are all here for you, Crystal, and sympathize with what you are going thru. It is a devastating fact when we are forced to deal with any ongoing illness especially one that can cause so much pain.

I hope you feel better about things as time goes on. We are here for you!!

Love,

Carla

Alicia,

I don't mind at all :o) I am totally for awareness, education, support and "paying it forward". I am amazed by the shock of it all. All of the people who are supporting me (besides this site) have never been through this or anything like it. They have all told me it will be ok and life will be "normal" again now that I have had surgery. By chance a friend of mine found a local Chiarian Zipperhead and put us in touch with eachother. Yesterday was the first time we actually spoke on the phone for nearly 2 hours, and I am for certain we could have gone on, but we both had other things to tend to. Turns out we had the same surgeon, but 7 years apart. She put my future into perspective for me. Made me realize that things will NEVER be "normal", but I will have a life and a much better quality than before. To actually hear that from someone else, their voice, who has actually walked in my shoes, having CM, going to the same sergeon, hospital and living 10 minutes apart. WOW!! It just gave me justifaction (you could say) that what I am feeling is honest and true and that things don't just go away because you have had surgery. It is MY (OUR) life and we can choose how we live it, not it choosing for us. There will be ups and downs, good and bad days, and we will survive, because if we weren't survivors CM would have already taken everything from us. We would not be here sharing and supporting. So please it would be my honor for you to share this on your blog how ever you see fit. Thank you for your support,

Much Love and Blessings,

Crystal

Carla,

With your decompression surgery the did NOT remove your herniated cerebellum tonsils?? I have the copy of my surgery step by step and they state that my cerebellum tonsils were removed as well as a portion of my skull and only half of the C1 disc. This was done this way due to my EDS (Ehlers-Danlos Syndrome). I also had the MRI due to the hernation of my C3,4,5,and 6 and the MRI tech. showed me where the brain was healing from the cordarazation (spelling?). I am very interested to hear how they did your surgery, because wasn't ours only a few weeks apart? I am 8 weeks and 1 day postop. I know mine was different a little due to the EDS, but I would think CM Surgery would be all about the same. I mean with the approach and standard surgery procedures. Please tell me how they did your surgery. I would like to see how they differ or relate. I know the woman that I just met locally had the same surgeon as me and our procedures were VERY different. We both have CM, she doesn't have EDS, but her incision was from the top of her head to about 2 inches below her hair line. Mine was a "T" shape 3 inches each and to about 1 inch below my hair line. She has titanium mesh and screws as her surgery patch inside. I have a harvested derma layer as my patch. She had her tonsils, C1 and 2 removed as well as a portion of her skull. As I stated before I did not due to EDS. They are totally different and with the same surgeon, just my procedure is more evolved due to trial and error and new medical technology. It is amazing how the same diagnosis can have so many different ways of treating it. Like I said I would love to have you explain your procedure and anyone else who would like to I would love to hear and compaire, because I am just amazed at the things some people are blessed with the capabalities to do and how they chose to approach something like this. You would think it would be text book?? Thanks for your support Carla.

Much Love and Blessings,

Crystal

Carla Jo Stone said:

Crystal,

I totally agree with you that decompression is major surgery! It is also very difficult to recover from and takes a long time. I don't remember how far out of surgery you are, but it is still very early. You will continue to make improvements in your recovery, just give it more time.

I think that you should talk to your surgeon again. If he told you that they were removing part of your brain and spine, you may have heard him wrong. I have never heard of them taking part of the brain out. In everything I have read in the last three years states that they take a small (very small) part of the skull and maybe the backs of C1 & C2, not the whole disks. I have never seen where they actually remove part of the brain. Maybe you should ask for your surgery notes from the hospital so you can see exactly what they did during your surgery. The fellow Chiarian and Zipperhead you talked to may have been mistaken if they told you this. I'm no neurosurgery expert by far, but I would say removing part of your brain did not happen.

You are right in saying this is not a cure, but a treatment. That's why we try to raise money for research and a "cure"! There isn't one! It is extremely difficult to accept that we are going to always have some issues, but hopefully as you recover you will continue to improve! Maybe never get to 100%, but may 90% and you can return to your previous life with a few adjustments! We are all here for you, Crystal, and sympathize with what you are going thru. It is a devastating fact when we are forced to deal with any ongoing illness especially one that can cause so much pain.

I hope you feel better about things as time goes on. We are here for you!!

Love,

Carla

Thanks Crystal! I'm all about spreading awareness too:) I will let you know when and what I post before I post just so its all ok'd by you first!:)

And I think you mean cauterization. Cauterize means to burn tissue with heat. Basically it wasn't "removed', I would say it was more like shrunk. I've heard of it before as shrinking the tonsils. I personally didn't have that done. I only had a piece of the skull and C1 removed. Since there is so much controversy on how to do the procedure and different ways it can be done effectively some say yes and some no.

http://www.conquerchiari.org/subs%20only/volume%201/Issue%201/tonsillectomy%201(1).asp

http://www.conquerchiari.org/subs%20only/volume%205/issue%205(1)/histological%20tonsils%205(1).asp


Articles on it. There are tons if you type in "cauterize chiari malformation" in google.

-Alicia

Alicia,

That is exactly what I meant. My NS put in in laymens terms when he explained it to me and I was just talking to my husband about it and ex re-explained it to me.

Thanks so much and I am sure whatever you do with the blog will be great!

*HUGS*,

Crystal

Alicia Roden said:

Thanks Crystal! I'm all about spreading awareness too:) I will let you know when and what I post before I post just so its all ok'd by you first!:)

And I think you mean cauterization. Cauterize means to burn tissue with heat. Basically it wasn't "removed', I would say it was more like shrunk. I've heard of it before as shrinking the tonsils. I personally didn't have that done. I only had a piece of the skull and C1 removed. Since there is so much controversy on how to do the procedure and different ways it can be done effectively some say yes and some no.

http://www.conquerchiari.org/subs%20only/volume%201/Issue%201/tonsi...

http://www.conquerchiari.org/subs%20only/volume%205/issue%205(1)/hi...


Articles on it. There are tons if you type in "cauterize chiari malformation" in google.

-Alicia

You're welcome:) When I first read the thing about the brain I wasn't sure what you meant until you said cauterize (however you spelled it.) Google fixed it for me hahah I didn't know how to spell it either. Then I understood.

-Alicia

HI Crystal....

Glad you brought this up....My own recovery took a long time...to feel like me again..but I am not the same me, ya know..but i am better than b4 surgery..I still have bad days..but the good outweighs the bad...however..when I get setbacks I get frustrated as all get out.

My NS did not touch the tonsils..since the surgery , I have had follow-up MRI which states the tonsils are above the foramen magnum...I think there are many different ideas between NS regarding touching the tonsils...

It has not been that long since your operation, you have a family, a home to take care of...I am sure you are busy..I found out...personally, that life doesn't stop b/c I had brain surgery....so, I am guessing you are maybe over doing it..and your body may be trying to tell you something.(?) just a thought...

Crystal, it took me well over a yr to feel ok..I was very dizzy , using a cane for the 1st few mths after surgery....I used the cane for 2 reasons back then ..dizziness and weakness....now I no longer get dizzy....for me that is HUGE...b/c it also caused me to get nauseas(sp) and that , to me, is one of the worst feelings...But, again, it took a while for that to go away...I did not drive for I want to say 6 mths...mainly b/c by the time I felt as though I could safely drive ..it was winter here in Upstate, NY..you are in Albany...you know what I mean!!! I still have not driven the Thuway or any Highway in about 4 yrs!!!! so that was even b4 surgery...my operation was in Aug of 08..

I am happy that you got to speak with a fellow Chiarian on the phone..does she live nearby????

Ok, I just realized you are only a bit over 8 weeks post op......I hate this saying..but it is so true.."Give time, time"...

Have you read Ray D'Alonzo's book.."Contents Under Pressure"??? I my opinion, a must read for all of us with CM. Tells in laymans terms of his battle and recovery from CM...of course there is no cure..but the Tx can give good results..But in my own case it took a while...but good results as well as small setbacks did come.

Hang in there.

Blessings,

Lori

Lori,
Thanks for the encouragement :o) I just made it all seem so simple and I guess when I noticed that I was still having symptoms (some that I didn’t have priror to surgery) it really got me frustrated and then talking to someone who had done basically the same as me and is still suffering 8 years later, it made me sad. I thought I would get it fixeds, enjoy the summer with my boys and then go back to work and the things I did before Chiari started to really effect me. Now I feel like I am back to the drawing board. Having to get more MRI’s and MG’s and seeing more “Specialists”. I thougt I was done with this?!? All I know is when a good day comes I am going to soak it up and ENJOY every second of it!! Good Luck to you and hope you have many good days.
Much Love and Blessings,
Crystal

Crystal,

My tonsils were not cauterized or touched with surgery. Mine were herniated below the skull. My chiari herniation was 25mm though so it was quite large. My surgery was three years ago not recently. I had the backs of C1 & C2 removed and later had C5 & C6 fused. I do not have any artificial material where they removed the skull/dura. I have the muscles pulled back together and that's it. That makes for a very stiff neck and the back of my head continues to be numb. I will have to see what my surgery report says and share anything else that is unusual or different. Yours may have been different due to the EDS. I do not have EDS. Do you have a syrinx, too? I don't. Thanks for sharing!

Love,

Carla



Carla Jo Stone said: I mean NOT herniated below the skull.

Crystal,

My tonsils were not cauterized or touched with surgery. Mine were herniated below the skull. My chiari herniation was 25mm though so it was quite large. My surgery was three years ago not recently. I had the backs of C1 & C2 removed and later had C5 & C6 fused. I do not have any artificial material where they removed the skull/dura. I have the muscles pulled back together and that's it. That makes for a very stiff neck and the back of my head continues to be numb. I will have to see what my surgery report says and share anything else that is unusual or different. Yours may have been different due to the EDS. I do not have EDS. Do you have a syrinx, too? I don't. Thanks for sharing!

Love,

Carla

Carla,

Thanks for sharing you surgery with me. I appreciate what each of us had to go through and still are going through. Education is a huge thing for me and hearing everyones' experiences make me better it trying to raise Awareness. I personally didn't have a syrinx, but my hernation did cut off CSF flow completely to my brain and if I had chosen to wait I would of had perminate paralization at the very least on the left side, if not my entire body or worse. Good Luck with everything and please share all of you personal knowledge with me. I love to hear what worked or didn't and what suggestions you may have.

Much Love and Blessings,

Crystal

Crystal,

I didn't have a syrinx either (that I know of. I never had a full spine MRI), but my CSF flow was cut off also. After my decompression the flow still would not flow in the correct pattern and was pooling up in the ventricles of my brain. I ended up having a shunt put in 6 months after decompression. I've never had any problems with it so I am lucky. Alot of people have trouble with infection and the shunt not draining correctly. Mine had worked fine.

Please hang in there! Each day and/or week will get better.

Love,

Carla

Carla,

Thanks so much for the encouragement. I don't know what I would do if I had a shunt. My Mom-in-Law has a friend with a shunt and she has issues with it aligning correctly or having to adjust the flow with the magnet. Just the thought of it give me chills. I can't even imagine. Good Luck!

Much Love and Blessings,

Crystal

Thanks, Crystal. I have been really lucky with mine! Knock on wood, you know? I've adjusted pretty good to having this weird little thing in my body:)

Carla

Hey Crystal! I hope you're doing well!

I just wanted to share my blog post. I finally posted your quote.

http://chiari-life.blogspot.com/2011/06/dose-of-reality.html