What To Expect When Facing Arnold Chiari Malformation

When having  Chiari surgery, every surgery is a little different with the different results. The end outcome is to open up the flow from the spine to the brain and let the spinal fluid flow freely and with out pressure allowing the brain stem and Vegas never to be able to communicate with the brain and body with out anything thing interfering with it. Some Nero surgeons do the regular decompression surgery and remove or shrink the Cerebellum tonsils some do not. This is a patients personal choose. I do recommend you to research both surgeries and decide with your family and Nero surgeon witch is best for your health. I highly recommend more then on opinion sometimes three or four, until you feel you have found the correct care for yourself and your future.

Once you have found your surgeon and have scheduled your surgery you will go through a number of emotions. The first one will be very fast and you might not even recognize it. It will be relief but unfortunately the relief will soon past with two emotions that will be over whelming, Guilt and being scared. Lets talk about guilt first. Guilt is a funny thing in this situation because you feel guilty for what you will be putting others through. Witch in a lot of ways seems silly to the outsider but it will be there until you handle it head on and at that moment you wont have time. So you will feel guilt and also you will be scared on a number of levels. The first will be of course the fear of not coming out of the surgery, not surviving it. Everyone will tell you how to feel but your feelings are your own and that’s ok. In this case I would recommend you to keep reminding yourself that you have chosen your surgeon and as long as you feel comfortable with that person that’s all you can do is leave it up to the surgeon and the higher beings… You will also be scared of the pain, I’m not going to lie it will hurt afterwards but the good news is it gets better every day. I highly recommend you to spend time with people that are healthy for you, support you and will allow you to be you and go through what ever your feeling and support it. You might want to run away and if you can for a day or a weekend I recommend it. Get your mind off it, do what needs to be done for you. This is your body, your brain and your life never forget that. Please don’t do anything reckless or be irresponsible for your safety and health but do what you feel you need to before the surgery. Live some life!!!!

I want to talk to the loved ones of the Chiarian. We try so hard to not upset you or hurt you any more then we already have. I know I spent more time worried about everyone else and not enough on my self. I felt I had to be strong for everyone around me and felt very guilty if I allowed myself to slip up and show that I was scared and worried and sad. I was sad I was putting all my loved ones through this. Chiari did not just happen to me but everyone around me also. So what do we need, it’s easy for you to just be there. Talk to us, don’t shut us out. Most important let us go through what ever we feel. Support us on this journey. Sometimes we will talk about thing that you don’t want to here but let us talk about it. All we need is for you to love us and be there. That’s it and with that we can support and love and enjoy the time spent. Sometimes we don’t need it to be fixed but just to be excepted. Chiari is hard to except not just for the Chiarian but for the friends, family and loved ones…

What should you buy before the surgery- I went on this crazy Pj shopping spree. All my Pj’s were button ups so I did not have to pull anything over my head. My mother bought wash wipes that you can microwave because I could not take a shower for the first 2 weeks after my surgery. I had a hard time with my skin and nails so I got a very strong lotion for dry skin. My lips were very chapped after surgery so I had my favorite lip bomb. Please buy thing that are odorless, because after surgery your smell might be heightened. I had them buy me lots of magazines, movies, a neck pillow that was not heavy (had a beanbag filling like what you would use on an airplane) and Milk magnesia, you don’t want to be constipated after the surgery and you don’t want to have to push. I know its scary and hard.. We are all here for you and the family..
If you need help with fundraisers there is a way to do one yourself. Please let me Know and I can get you the correct information so you are not attacked by the IRS with “Taxes”.

After surgery-

This is were EVERYONE is different. Some will be able to talk on the phone and go on there computer after wards some will not be able to do so for a few months. You will be different buts that’s because you are now a Zipperhead and survived brain surgery. There is an empowerment there. Most are sick for the first few weeks and that can go through to a few months of throwing up. This is normal, it sucks but normal.. Please remember you do not want to be constipated at this time. So please take the laxatives that you have chosen. Your neck will hurt and that can be for a while. Your neck hurts because they cut through all the nerves and it needs to heal. Some will feel relief right after and some will not.. It is all about how bad your Chiari was and how long it takes for your body to get to a normalcy. Most Zipperheads have depression after surgery and this is normal also but this is the harder one. This is were we have to make sure we find reasons to fight to heal and get back to out lives.

Side note: it’s hard because you are the one going through the surgery but the loved ones that stand by you try and not close them out talk to them so they can know how to support you and if you have a loved one have a plan for some one or ones to be there for them during surgery that will support them as they love you they will need the support.

Most of us cry- after surgery we cry and cry. I don’t know why but I believe it’s because we have had brain surgery and the trauma that we go through not only does our body need to heal, our wound needs to heal but the brain it self needs to heal and all that can take time. Give your self the time, allow yourself to heal and as we do and the people around you need to let you also. You had brain surgery and your life will never be the same so you need to morn for what has happened and what has ended. At the same time you never know what door will open for you so it’s just an ending of a chapter and a new one is beginning. It just begins with “When I woke up from brain surgery I……..”.

Weird things will go on with your body and this is when you start the healing and your body go through swings. For Chiarians we sometimes forget what it was like before surgery so we are stuck in the now. Some days you will be overly tiered and this is when the brain is healing sleep is good!!!! Other days or nights you wont be able to sleep and this is when your body is trying to find a normal way for it’s self.. Pain will come and go.. Stress will effect you more so try and avoid it…This is your time to heal so let your body heal. Your never alone we are here and we have gone through it and will go through it with you!

This is the hard one, people will leave. I truly don’t know why maybe they thought after the surgery you would be perfect but we are not no one is… Some will just pretend you are fine and it will get tiresome and you might just have to let them go. Mostly I have found I have changed and grown and it is a good thing for me.. I would never go back and change anything. I feel lonely and sometimes feel like even the ones who have been there for me this whole time don’t understand and I have come to a place where I am fine with that. I miss them but I am me and that is what I have chosen. I am happy and except what and where I am in my life..

It is very important to keep in mind that our loved ones sometimes go through servile guilt. As I watch how it has effected my husband as both our kids and I have Chiari the weight can be over baring this is not our fault or there’s. It means they love us so much they want us not to hurt any more but they can’t fix us. As the days go on pay attention to your other half and loved ones when your read make sure their doing ok. Maybe have a friend come by and give them a brake. I know we did not ask to be sick but as we except our illness we need to be supportive in them doing the same thing.

This is a hard process but it does get better if you want it too. You have the choose to be positive sometimes you will fall and it will be hard but you have to climb out of the hole and get back up and allow the positive side of life to shine, you will find your way. This was a every hard topic for me to right about because I am only on person who was not blessed with going back to work or living the life that I knew. I can not drive and seem to be sicker then I was. But, that was not the surgery that is my life and the path that I am suppose to be on.. We are all different and we all have different paths. I have chosen not to live in fear and move forward, I believe you can make the same decision.

This is a hard thing to go through big or small Chiari, lots of symptoms or not that many we are all struggling to fight Chiari.. With all my love and support I will help you fight to find your path in life and come out of this journey better then when you started!

With all my love and support 

Heather founder of Zipperheads for Chiari

Note; this is just from me and my opinion. This was what I have learned and go through. I high recommend you speak to you NS if you have any medical condition questions I am not a doctor or in the medical field. I‘m just here to give my love support and share my story with all the love in my heart.

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