Saturday, April 2, 2011

What to expect when facing Arnold Chiari Malformation decompression surgery. Before and after, the good, the bad and what it just is. How to keep your sprits up and move forward afterwards

When having Chiari Surgery-

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.


Anonymous said...

Thanks for your comments, it makes me feel a little better on what to expect. I have not made the decision on surgery but it's starting to look like I may not have a choice.

Anonymous said...

Thank you..This really helps. Found out consult Monday.

Nancye said...

Thanks for sharing your story. It is so encouraging to see survivors be positive! It helps so much to know we're not alone in all of this.

Anonymous said...

It was nice to read your very honest account in due to have the chiari decompression surgery on the 14th August I have a 7mm herniation plus a thoracic syrinx which meant I had no options I have to have the surgery. I've lived my life being told I'm pretending or that I'm hoping to be ill it was found by accident but explains a lot of the things I've been going through. Hopefully my op will go well I have one of the best neurosurgeons in the uk and he seems confident.

All the best for the future

Kim x

Anonymous said...

Thank you for these most informative and encouraging words
...especially on how to support the special people that support the patient. My loved ones have their own fears and guilt etc., and I want to make sure they are OK when I go for my surgery soon. May you continue to heal.

Anonymous said...

Thank you for your in put. I am in recovery from the decompression surgery that I had on June 13th. I often feel that the people around me are not understanding me and my healing process. They often complain that I am so tired and sleep most of some days. But I know that I am healing. It is just hard for others to understand that I am not just magically better after the surgery. It takes time and I know that. It is nice to hear that there are people out there who understand.

Anonymous said...

Hi, it's late and I came across your site. I am very scared making this decision for our daughter. Who is 7. Her herniation is 15 mm. She has verbal dyspraxia and epilepsy. We are confident in Neurosurgeons at hospital and we only found out in May. She's bright and has a beautiful brain. Has many overlapping symptoms. As days draw nearer 4 days to be exact. I am stressing that I can't keep it together. I hope I find strength. Is Chiari causing these other conditions? We dont know?
I feel for what you have gone through with you and yours. Gosh I can't imagine! Best wishes to you from here in Australia. Thank you for putting time in to words for others to read! Miss Mel

Anonymous said...

I had the decompression surgery a week ago today. It's haft and it sucks and it hurts, but it was something that needed to be done. I spent 7 months in constant pain as they decided what was wrong with me. In a 3 month period my borderline Chiari went from 4 mm to 6.2 mm which isn't very bad at all but the syrinx went from a small bulge at c5-c7 to a thick constant progression from c2-t3. I brushed off the small neuro signs as other things. Numbness in my hands was positional, walking too close and bumping into doors was just me not paying attention, occasionally stumbling over my feet was from wearing different shoes but it wasn't until the equallibrium problems and the vision changes that anyone took me seriously. I had one doctor that told me he didn't believe that what he saw on the MRI was causing me pain and that some people had unexplained headaches and that I needed to find a way to live with it. He suggested acupuncture.they thought they saw papaladema in my eye so they wanted to do a shunt. The problem with my diagnosis was they didn't understand WHY I had an aquired Chiari and didn't want to do anything until they knew. They finally decided that they may never know and they did the surgery. So here I am a week out. I spent 4 days in ICU and 2 days in a regular room. I could walk at day 3 and they are surprised and happy that I'm progressing so well. I'm pushing myself. I have goals set along my path and I will strive to meet them. My advise is this...learn what you are SUPPOSED to feel after surgery. A whooshing in your ears or dizziness or drowsiness or pain or numbness. Learn what is ok and not ok symptomaticly. Them do what they say. You need to set up and do a few things. So why not in a wheel chair in your favorite store for 15 min. Ask your doctor first. But set little goals. Even if its to be able to go to the bathroom unassisted with the door closed and someone in the hall just in case. The first shower will be the BEST shower you EVER have. Don't touch your bandage or let others touch it. Infection is a big deal in this part of your body. Rest when your body says rest. And most of all try to remember your sense of humor. You are going to have to go through some humiliating things like when someone has to help you onto the bedside toilet or to bathe. Just go with it. It has to be done so don't be humiliated just try to accept it and try to find something to laugh about. Of course don't laugh too hard as this still hurts to do at the moment. To all of you that have had surgery before me, thanks for your posts and encouragement and for letting me know I wasn't alone. For those of you that are to come my thoughts and prayers are with each and every one of you and just know that you are not alone.

Anonymous said...

I was diagnosed in March 2013 after an auto accident. I always felt this way and thought it was something I just had to live with. But the headaches are so bad, that I am ready to cut my head off. Found a surgeon that will do the surgery, when I'm ready. The pain has gotten so bad that I think I'm ready to go through with this. Rally scared of what life will be afterwards. After reading your comments, I feel a little better about doing this. God Bless Brenda

David-the-zipper-head said...

Thanks so very much for your thoughts and the wonderful thoughts of others here. I am 3 weeks out from my chiari decompression surgery and I am improving, but it is better to look at it week by week as some days are better than others. MOST IMPORTANT THAT MY DR. HAS BEEN ABSOLUTELY RIGHT ABOUT IS RESTING COMPLETELY FLAT. I find that when I cheat on this that this is where I get the worst pain. For 48 hrs after the surgery I payed flat in the hospital, then gradually I was raised 10 degrees per hour, this helped with the nausea and I was out of hospital in 4 days. Best of luck to all considering this, it is important to not live that way, it does get better. My amazing wife, is such a tremendous reason for this! You need to be challenged and you need no understand that you will be moody and irrational at times during and especially after the procedure. If any one has questions, I hope to be able to help... David.

Anonymous said...

Thank you :) <3

Anonymous said...

I had my surgery June of 2004.I can't work anymore and have health problems I never had before.pereferal neuropathy which is a huge amount of pain especially in my legs and fibromialgia all over and still have constant headache ass'd pain on surgery site! It had changed my life completely.major depression! But I look at it this way..even though everyday is painful and a struggle I'm still breathing and this is the hand I've been dealt and God has his reason and he will never give you anything you can't handle! There are far worse of people out there than me and if they can be positive and live a happy life so can I.never give up always keep pushing through. You have bad days and good days even after 10 years just keep a smile on your face even if you have to make yourself at first your find later you doing it and its easier than forcing it.

Anonymous said...

I had my decompression March 23. I had lost my ability to swallow, extreme head pain, loss of vision in left eye, loss of hearing on left side. I had basically no sensation on left side. I suffered with terrible cognitive and memory loss pror to surgery. The procedure lasted 5/12 hours. I had chemical meningitis which was excruciating. I am doing much better,but the depression I am experiencing is pulling me down more and more everyday. I am 54 yrs old and I am so ready to feel better. Anyone have some words of wisdom fo me...I would really appreciate any advice.

Rhonda said...

Hope you still check surgery is in 5 days and I'm so happy to have come across what you shared. I don't know about the blog things so wouldn't be able to find it again if I tried so...Your words have struck a cord in me and want you to know how much I appreciate what that has done. I am going to do me and at 53 it's about damn time so thank you!!