Update FINALLY!

[lilschaumie06]

AH! finally I am free! sorry for taking so long and thank you so much for everyone's prayers and support! I have been so bogged down with school and my lovely older but brain injured broth who FINALLY went to rehab for his addiction THANK GOD!!! (70-80% of brain injured people end up being addicts). But anyway I saw my neurosurgeon and he was very unimpressed with my chiari and the finally felt my head and was like well your head is shaped VERY flat and let me look at the MRI's... yep your posterior fossa is very small.... in english my chiari grows down about 9 mm which doesn't cause too much crowding but the smallness of my posterior fossa makes me a specail case (as usual haha) so he took my images (all 5 series of them starting when i was 11 yr olds... my mom is a very anal nurse who wants the doctor to know EVERYTHING... which i guess is a good thing) and reviewed them with a neuroradiologist and made me wait for another week which just about killed me! but they both ended up being 100% confident that i would benefit GREATLY from the surgery so I am getting yet another craniectomy may 20th (which is exactly 20 years and 10 days from my first surgery).... right now I am overly excited for the chance at being symptom free but i know as the date gets closer and closer that excitment will turn into nervousness... so please continue to pray for me as I continue to pray for everyone at this site... I appreciate every ones support! Oh and something that totally has nothing to do with this... If any of you find the chance to do this for me (i know all of you are EXTREMELY busy with your own babies) go to this website and vote for my picture of me at a cheerleading competition tumbling it will help me get a scholarship if I win.... http://www.brickfish.com/Pages/PhotosAlbums/PhotoView.aspx?picid=451179_88381870&=PPIMEMAIL&isep=1&pbapi=572050&pbvi=15111148 (http://www.brickfish.com/Pages/PhotosAlbums/PhotoView.aspx?picid=451179_88381870&=PPIMEMAIL&isep=1&pbapi=572050&pbvi=15111148) you just click vote for this entry and then on the right hand side a little screen with roll down and click enter as a guest and then click vote for this entry again and it will vote... you can vote everyday or whenever you get the chance... I am hopefully getting accepted into nursing school for the fall of 2008 and I want to be able to help my parents out since I wont be able to work this summer at all. Thank you guys so much! and I am so sorry this is a so late of an update!

P.S. KIDS WITH CRANIO CAN DO ANYTHING LOOK AT ME!!! I AM UPSIDE DOWN TWISTING IN THAT PIC!! =) NEVER GIVE UP

[Tamz]

well you most definatly have our prayers as you go through this. we will pray that this makes you symptom free. thanks for the update and keep us posted on your progress.

[craniomommynbaby]

You will definitely be in our thoughts and prayers with this next surgery.

I voted for you! That is too cool. (I would be so scared to do something like that.)

[melsch]

It's so good to hear from you again. I'm glad to hear that your Chiari is mild, and I am also happy to hear that they have a solution for all of your pain. I will be praying for you in the coming weeks. I'm sure the next few weeks will be quite emotional for you, but we are all here to support you if you need anything!

ps. I think I voted. That's very impressive indeed...I'd still be on the mat trying to figure out what the heck I was thinking!!! :) Good luck with the competition!

[Jenny]

Wow, We'll all be praying and thinking of you! I couldn't imagine having to go through that surgery again as an adult! You are much stronger than I am that's for sure! I am terrified just to have my c-section in october! Good luck, sweetie, keep us posted!

[three.little.boys]

Holly! YOU GO GIRL!!! I am so pleased you decided to have surgery. You deserve to be young and pain free!!!!! I know you aren't a "baby" but you are still one of our "kids"...so I am going to add you to our "may surgeries" thread. This is so we can all stay update on who we need to be praying for and when. Can you give my your hospital name???

Thanks!!

[lilschaumie06]

Oh duh! I can't believe I forgot! I am getting surgery at Methodist hospital in Houston in the medical center by Dr. Jerry Bob Blacklock (he is a good ol boy from Texas)... I will be in the ICU for a 24 hours (HOPEFULLY thats all) the I will be in the hospital in for about 3 days after the ICU. My mom will be getting on here and updating everyone on my progress.

[melsch]

I was just going to ask if someone from your family would be able to keep us updated! I'm sure everything will go just as planned!

[Springy]

Holly! You are awesome! I am so glad that you are on here again! I will vote for you and pray for you! YOu give us all inspiration for our little ones when they get older!

[Tawnia]

I voted too...that was an awesome pic! Good luck with your surgery and keep us updated!

[beccad]

Holly, I voted for you. That is awesome. I thought of you the other day when i was watching Extreme Home Makeover. The story was about a mom with three teenage daughters and all of them had Chiari. I'm glad you are getting the surgery and good luck with everything.

[three.little.boys]

Thanks for the additional info, holly!

[Claire'sMom]

You have another vote!:wink Good Luck with your surgery and I will keep you in my thoughts and prayers.

[lilschaumie06]

Oh my gosh I never would have thought so many of yall would vote for me! Thank you so much! I have had a bunch of question from my friends and family members when you vote you press the vote for this entry button and then the screen will scroll down from the right top corner and click enter as a guest and then you have to click vote for this entry one more time... Just thought I would make that clear in case anyone here had questions about that... and remember if yall have anytime you can vote every 24 hours... I wish I could express how much I appreciate all the support and prayers I have received from all of you... Thank you so much!

[Shazza]

Just letting you know that I can understand what you are going through. My name is sharon and Im from Australia. I found out at the age of 27 that I had Arnold Chiari I, it came to me as a shock too, but it gave me a reason why I had the symptoms I had.

For years , ever since I was 4 I suffered from headaches. i was diagnosed then as having Craniostenosis, nothing was done about it, just monitored and had xrays of the head to keep check on size.

Anyway, in 1993 at the age of 27, I kept getting re-occuring eye problem, admitted to hospital 4 times in a month, black floating circles, lost sight in eye. They couldnt find out what was wrong and the sight would return. Anyway due to a sort of infection I had to put in eye drops several times a day. It was because of all the tilting the head back which flared up my problem.

On one occasion after putting drops in, I got a tingly senation in my neck and it would travel down my spine, next thing I know I have collapsed. this happened 4 times. After persistance to my GP I made him refere me to someone else which was a Neurologist.

On examination, he thought I had this Arnold Chiari, but had to have an MRI to confirm. This was done pronto, and within a month I think I was in having surgery. The lowere part of the brain (tonsils were 12mm). I was in hospital for about a week. The back of my head was shaved, but they left the top layer of hair, so that it could fall over the scar, and they used a skin graft from my thigh to reposition the brain.

Im fine now, and do not suffer any more of those horrific headaches. I have been since diagnosed with Marfans syndrome in 2003 and a month later had the aortic valve replaced in emergency operation.

Im sure your surgery will go fine, and things are more advanced than when I had mine in 1993.

If you wish to email me and chat please feel free to do so.

regards

Sharon from Australia

cnsmcloughlin@optusnet.com.au

#diagnosed Craniostenosis at age 4, #Arnold Chiari age 27, #Marfans age 37