Sunday, July 8, 2012

When having Arnold Chiari Malformation surgery

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.


josgirl said...

Thank you for your insight. I am the mother of a 19 year old Chiarian who was diagnosed six weeks ago and will have surgery tomorrow. I appreciate your advice to the caregivers. This is a new road for me too.

God bless you and may you have more good days than bad days.

In Tennessee

Anonymous said...

Thank you Heahter. You are very courageous.
~ Christi
In Pennsylvania

EarthTeam Baltimore said...

Hey Heather, I was diagnosed when I was 14, and was thrown into corrective surgery when I had just turned 15, and now, at 21, I live a happy and normal life- free of my symptoms! I love your blog, and please continue to uplift fellow Chiarians! Everything you wrote was so spot on! Thank you!

Anonymous said...

My husband is suffering terribly with Chairi. his pain is only really strong narcotics, and I have RSD with disability so I share with him even though its against the law and if my pain doc ever found out I'd lose him. my disorder is also rare and the pain rivals cancer. I have no idea what his feels like, we were under so much stress we separated. I miss him terribly but he felt it was right so I am miserable without him. I'm trying to get him funding or Medicare, but it's like watching a pot trying to boil. anyone have any ideas?

Anonymous said...

I was recently diagnosed with Chiari I 12/10/12. My father was exposed to Agent Orange as well. He died from non-hodgekins lymphoma 2/10/11. I had my decompression surgery 1/7/13 and am at home recovering. Has the VA acknowledged that your Chiari is directly related to your father's exposure? I also have a daughter with achondroplasia. She too has had decompression surgery, ETV, and finally a VP shunt. She will need another decompression surgery in the near future. She is only 2.5 years old. I suspect that my other 3 children also have Chiari I. Prior to my surgery I put in a claim for compensation with the VA for myself AND my daughter. I wanted it known how much Agent Orange exposure has affected this family. And maybe I won't ever see anything come of it...but I did it for my daughter in hopes that in her lifetime the government will recognize that exposure has gone as far as grandchildren at this point. Thanks for reading!

E said...

I'd be interested to know, too, whether the VA has acknowledged an Agent Orange-Chiari link, as my father was exposed to the former, and I've been decompressed for the later.

Benny (Not Hinn) Williams said...

I am sitting in my wife's hospital room, our 15th day our since her decompression, which included removing the knuckles on C1 and C2 in her spine. She has had terrible issues with the fluid building up around her incision, and they've placed a lumbar drain twice. The doctor has said if the fluid doesn't drain sufficiently, he will go in and place a permanent drain from the spine into the abdomen. I am grateful she has had the surgery, but we honestly didn't anticipate all of the setbacks she has faced. She is 32. Thanks for sharing your journey.

Anonymous said...

Thank you so much for writing this I had surgery Sept,2010 and I to am not able to go back to work or drive and have more bad days than good but I am thankful I am still here to see my kids graduate and Grandkids grow up and my husband is right by me every step of the way.And have hopes of having more good days then bad someday soon !prayers,hope and strength !:)

Anonymous said...

Heather you have a big heart...keep being that strong person...hope you have better days than bad...I had my first decompression surgery on 10-10-13. I felt better right away dispite the pain I had when I woke up from the surgery. I went back to work 4 weeks later (now I realized that was crazy) I have scar tissue that is reducng the CSF flow... my cerebellum is protruding against the craniectomy and my brainstem is herniated.......I am miserable with all of my life has never been the same...from reading your comment I feel lucky I am able to drive (short distances). I'm having my second surgery on July 12th and I'm hoping I'll open my eyes again after the surgery. I wish one surgery would fix it all and all of us could carry on with our normal lives. We can only try to stay strong and live what we can.

Cheryl50 said...

I had Chiari surgery at 54 years old in November 2012. Prior to surgery my symptoms were dreadful. Decompression surgery was successful. Recovery was very difficult. After surgery, I've gone from hardly being able to put one foot in front of the other, extreme nausea for the first week to now being able to lead a reasonably normal life. I can drive well. I still have residual nerve pain in arms & legs, helped with Lyrica & I manage on Panadol. My head seems to still get an irritated nerve feeling with too much bumping around & I still find it hard to get comfortable for sleeping. I've come a long way from where I was before surgery. For me surgery was worth it. My surgeon in Newcastle NSW Australia, was Dr Ferch. He does a decompression surgery every 2-3 months.

Anonymous said...

Does anyone know of any research on how chronic stress of high blood pressure speeds up the onset of chiari symptoms? I had a stressful event February 2013 that caused my blood pressure to go up and since then I began experience massive head aches, my hands shake, I wake up with numb arms, and I can't feel certain parts of my arms and legs. I just found out that my cerebellum is 13mm downward and I have a massive syrinx. I have seen several neurosurgeons this summer and no one will touch it. I have an appointment next week at a University's hospital to exam my condition. I appreciate any feedback as I'm trying desperately to learn about this condition.

Amber said...

Hello my name is Amber. I found out that I have chiari malformation in November 2012. None of my doctors seemed to concerned, but I was in so much pain and couldn't concentrate. Things seemed to be getting worse everyday. In June 2013 my NS said it would be best to have surgery to help my situation. On August 20, 2013 I had surgery. The same day after surgery the doctor ordered me to get a chest-xray because I was having trouble breathing. During the process of getting the fray the fray tech hit me in the back of the head with the fray board. That was the most painful thing I have ever gone through. The next day my husband pointed out to the nurse that one of my eyes would wonder. Then I noticed that I had really bad double vision and that my hands were numb. The doctor told me that it would take time for everything to heal. It has been 17 days since my surgery and nothing is getting better. My numbness is now all over my whole body and my double vision has gotten so bad that I have to wear an eye patch to avoid getting sick or getting a headache. My concern is that my problems are not from the surgery but from being struck in the head hours after surgery. My doctor didn't tell me what to or not to expect after surgery so I dint know if this is normal. Heather thank you for sharing. Everything you said about emotions before surgery is correct. I didn't know what was wrong with me because I w o Ulf just start crying out of the blue because I was scared and felt guilty that I was willing to go through this surgery not knowing if I was going to make it or if I was going to have savere complications. I was worried that I would deprive my kids from growing up with a mom. There was so much going through my head in such a short time I had know way to work through it all. Thank you everyone for sharing your stories. I now know that I am not so alone.

Anonymous said...

I have been reading everyone's comments and feel somewhat scared, but my pain has been going on for years after a diving accident. I have been to every doctor, done every test, and still no answers. An MRI was performed many times, but Dec of 2012, they found an arachnoid cyst and just to confirm, had another MRI done a week later to find it was still there. Nothing was ever mentioned before during all of the other exams or CT's, or MRI's. I deal with chronic headaches everyday, migraines once a week, neck, muscle pain in shoulders, pain and throbbing at the base of my skull that is excruciating. I can't work. I can't bend over to tie my shoes or pick something up off of the floor. I can't look at the stars. I have vision problems, low frequency humming or vibrating sensations in both ears. I saw my neurologist on 10/29/2014 and he diagnosed me with Arnold-Chiari cerebellopontine angle arachnoid cyst. He recommended surgery because all of the medications that I am on are not working anymore. The only problem is, we have one income, and the surgeon is in NY. I live on the gulf in Alabama. Will my insurance pay out of state? How long will I be in the hospital? How long will I need help or a caregiver? The kicker is that I found some old MRI films of my brain and cervical, and they actually show where the Chiari is descending into my spinal column. These were done in 2005, when I had the face first collision with the bottom of a pool. I am trying to file for disability, but I am wondering if this has been going on since that MRI was taken, why didn't someone say something then. I am not a money hungry person, but I strongly feel that if I have been dealing with this that long, then I should get that info to my disability worker and sue the company/doctor that did that x-ray and said it was normal. Am I crazy?

Anonymous said...

Thank you heather, I am currently pre op as they have cancelled on me twice, reading your words had encouraged me to stay positive and relax.