BREAKING: Baby Siwaphiwe Mbambo’s Mom Arrested

Conflicting details during police interviews about the alleged kidnapping of baby Siwaphiwe Mbambo are what eventually led to her mother and two others being arrested for the crime, police said on Sunday.

“Too many inconsistencies emerged during the interviews, especially in terms of the initial reporting to the police of how the incident developed,” said national police spokesperson Brigadier Sally de Beer.

“Information generated from the interviews became critical in the setting up of a roadblock in Mariannhill in the early hours of [Sunday] morning.”

A car was stopped and the baby was discovered inside with a man and a woman, unharmed.

“Three people, including the 34-year-old biological mother of the baby, another woman, and a man, have been arrested and are in custody.”

The baby has been placed under the care of the Department of Social Development.

‘Selfish motives’

Initially, the baby was reported to have been taken in a car hijacking at a Durban shopping centre on Friday. She was in the back seat of a white Toyota Yaris which was then reported as stolen from her mother at gunpoint.

A large-scale search was conducted for the missing baby and a reward of R250 000 was offered for any information that would lead to her safe return.

“The South African Police Service invested a lot in this case, including members working overtime, the use of vehicles and aircraft which impacted negatively on the availability of police resources in the fight against priority crimes,” De Beer said.

As such, the use of police resources by people “with selfish motives” could not be tolerated, De Beer added.

A special prosecutor was appointed to the case on Sunday morning.

“Those who have been arrested and are in custody will appear in court soon.”

‘Dubious situation’

Acting National Police Commissioner, Lieutenant General Khomotso Phahlane expressed his gratitude that the baby had been rescued from “a dubious situation to say the least”.

“We thank our members, all other law enforcement agencies and security companies who stepped up to assist, as well as the civic minded members of the public who joined forces to assist in the search.

“We are a wonderful, caring society and it is disappointing when people take advantage of their fellow South Africans’ trust and belief in humanity. False claims of crimes which have an entire nation and beyond in a state of sorrow and anxiety, should be condemned,” he said.

BREAKING: Baby Siwaphiwe Has Been Found Alive

UPDATE: Police now say three suspects have been arrested in the case – including baby Siwaphiwe’s mother.

Happy 😃 News Siwaphiwe was found safe.
Thank you to all those who shared her post and to all the teams who got involved. A mother’s worst nightmare but it sure has sent ‘alarm’ bells that this could happen to anyone.
THE search for the missing baby, Siwaphiwe Mbambo, is over. This after police followed a lead about a suspicious vehicle that was intercepted near the Mariannhill Toll Plaza between midnight and 1am on Sunday morning. The one month old baby girl had been missing for more than a day after her mother was hijacked in Greyville on Friday.

Lt Col Thulani Zwane, spokesman for KZN SAPS said the baby was found unharmed in the vehicle and has been taken to a place of safety. Three people have been arrested in connection with the hijacking and abduction.

Zwane thanked SAPS, the community and everyone involved in helping find the baby. Zwane added that circumstances are pending the investigation and a formal statement will be released soon.

Hundreds of police officers, community members and rescue personnel have been working around the clock to find the one month old.

Missing baby Siwaphiwe

There is great relief this morning with police confirming that a month-old baby who went missing on Friday – has been found.

LISTEN: KZN police spokesperson, Thulani Zwane confirming the news on East Coast Radio – shortly after 4am today.

He said that a suspicious vehicle was pulled over at the Marianhill Toll Plaza in the early hours of this morning – with baby Siwaphiwe Mbambo inside.

Zwane says one suspect has been arrested.

News of the child’s disappearance sparked nationwide concern this week, and made local and international headlines – after it was reported that two armed suspects had driven-off with a white Toyota Yaris belonging to Siwaphiwe’s mother, Sibongile – with the infant still inside. The family – including an eight-year-old boy – were accosted outside a shopping centre in the Durban CBD – shortly after 11am on Friday.

On Saturday, police announced a R250 000 reward was being offered to anyone with information leading to the safe return of baby Siwaphiwe – and the arrest of her captors.

By yesterday afternoon, search efforts had been temporarily called off – due to police not having any further leads as to the whereabouts of the child or the abductors.


Why I View My Chiari Malformation as a Blessing, Not a Curse – Term Life

To my dearest Chiari Malformation Disorder,

I’ve lived with you my whole life, yet you didn’t affect me. You were dormant for so long, and I was so happy to live my life without a problem. I actually didn’t know about you until I was 14, and it was an accidental find. Why didn’t I decide to push them to repair it? Why didn’t I realize ahead of time that you were the problem, not hydrocephalus or cranio-facial dynstonia?

You made me to have three extra surgeries that ended up being unneeded. You made me get a shunt revision I really didn’t need. You made me live with that shunt for several years, until the company finally recalled it. You made me go to another hospital to revise said shunt because it didn’t need to be placed in my head to begin with.

You nearly took away my life. I struggled to breathe. I struggled to walk. I completely lost the ability to eat. I lost so much weight from you. I was pale and barely able to move because of the pain. And I was maybe a week from death when I finally had my surgery to remove you. You made me to miss out on so many high school opportunities. I had to miss out on my junior year completely. I had to miss out on a lot of my senior year. I had to beg my principal to allow me back as a senior, not a junior. I had to fight to graduate on time. I had to miss out on so many activities. Junior prom, senior prom, all the school dances. All because of you.

You made my left side completely stop working. You made me to have to relearn how to walk. You caused so much brain damage. I still struggle with eating. I still struggle with walking (a lot). I still fall all the time. And I’m still having a fairly difficult time with keeping up with schoolwork.

me with my diplomaAnd yet, you also taught me what it means to be brave. You taught me what it means to be strong. You taught me what it means to truly fight every day for what I need. You taught me the true meaning of strength and how to rely on others I  love to gain that strength. You ruined my life, and you changed it forever. You’ve caused insurmountable stress and extreme anxiety. You’ve caused so many bad things.

However, I’m choosing to look at you as a blessing, not a curse, and to look at all the things you’ve taught me about life. Because of you, I know the true meaning of life. Chiari, I will never forgive you. I will never be OK with what you did to me. I will never, ever again be able to truly be calm with any medical issue that occurs. I will never be the same person again. You’re an absolutely awful beast and one I wish I never had to deal with. I will never forgive you for everything you’ve done, and I will never forget the journey I’ve been on for many, many, many years.

With all my love and anger,


27 Aspects of Chiari Malformation I’m Learning to Live With – Term Life

On November 27, 2014, I began my journey with chronic illness. When I first got sick, pain was a challenge to overcome. Constant illness was something to be fought and won. I received my diagnosis of Chiari malformation a year and a half ago and my life has changed drastically since then. Pain is still an inconvenience, but it is survivable. If I were to spend every single day in a battle against my body, there would be no time left for living. So instead, I’m learning to embrace the mess and keep on going amidst it. I’m learning that it’s OK to fall down sometimes and stay down, as long as it means I’ll be able to get up tomorrow.

Here are 27 things I’ve learned to live with every day:

1. Gagging is not just a sign that you’re about to throw up – it may just be a casual reaction to brushing your teeth.

2. My body is covered in bruises because I walk into everything. I suspect everything below my eye height just wants to touch me.

3. If you can lean your head to the side and touch your ear to your shoulder, I think you might be an alien. My muscles — while flexible almost everywhere else — hold my head like it is a prized artifact in some Indiana Jones movie.

4. Swallowing a pill for nausea (or pain, or anything else) is usually what makes my body recoil and vomit. Anyone who can get an Advil down without tossing it back up with some bile deserves a round of applause.

5. Having my period is literal hell. It’s like having every symptom on hyper mode, plus hoards of dizziness, and let’s toss in a bit of blood to make it interesting and then try to function for two weeks (it’s not just period week — we have to include the pre- and post-week) because you don’t want to be “that girl.”

6. I think my legs disappear when I’m not looking at them. Seriously — I can’t feel them, I can’t tell you where they’re landing, but somehow I’m still moving.

7. A headache is an everyday, all-day thing. The pain levels of my headaches are the only thing that changes. (Why is that so surprising to some people?)

8. Trying to work out is like asking to be punched in the face repeatedly. (But major shout-out to my awesome ballet teacher who only lets me be punched lightly so I can still feel like the normal human being I was before.)

9. I don’t even register nausea anymore until it’s impossible to ignore because *ding* it’s always there.

10. Doctors always want me to walk a straight line and stand on one foot. (And they don’t read just their test when I tell them I was a ballerina before I got sick.)

11. My purse is a pharmacy of drugs I may need to survive from moment to moment. Seriously, anything you could ever want, I got it.

12. Ninety percent of people will ask me why I’m wearing sunglasses inside when they see my prescription tinted glasses – the ones that are specifically designed to block out some of the light that causes me pain and limit the severity of my daily headaches. And when I tell them they’re prescription, 75 percent of those people will laugh and suggest I forgot my “regular glasses” at home. (It is always, always better to tell people I have laser vision.)

13. Other spoonies and chronically fabulous human beings are instantly my new best friends, regardless of their conditions. Because normal people just don’t understand in the same way.

14. I drop everything. Everything. Probably because…

15. …I can’t feel my hands at various points throughout the day. (Typing this has involved a ton of backspacing to correct all the fumbles.)

16. Sitting up sucks. And it’s painful. I don’t know why all chairs don’t have built-in neck pillows. If you want to hang out, we are either going to spend the day lying down or we are going to exclusively stand.

17. My life will forever be divided into two parts: before I got sick and after I got sick. To the human beings who were in the before and have stuck around for the after…you are the best of the best.

18. I will never again expect a doctor to know anything about my condition beyond what they’ve read in a book. And I will never assume they’ve seen another patient with the same condition.

19. Good days are a blessing not to be taken for granted. Bad days are a chance to stop and think about the good days that are just around the corner.

20. Some people will never understand what I’m going through, and trying to explain it to them is just exhausting for the both of us. It’s OK to leave some people out of the loop sometimes when my illness isn’t something they can handle – it’s nobody’s fault when that’s the case.

21. Spending the day on message boards and reading all the information I can gather is almost always a recipe for disaster, but sometimes it’s necessary. If I’m not armed and ready, who will be when it’s time to fight?

22. My mother is literally my white knight. She is the one who holds onto me when I can’t walk, who undresses me when I can’t move, who tucks me into bed in absolute darkness when I can’t function for a minute more. I wouldn’t get through the tough stuff without her. (That’s not new since getting sick, but it’s the truth.)

23. Bedtimes are necessary. As a teenager, I reveled in the adultness I had and avoided sleeping at all costs. I know now that going to bed at 9 p.m. is a small thing if it means I can make it through the whole next day without needing to stop for a nap… or two.

24. Showering is a privilege and stinky people shouldn’t be turned away from. Embrace my sweat stank and greasy hair! (Because sometimes it is too much to stand in hot water and that’s OK.)

25. Netflix is my new best friend – because everyone else is at work on the days I can’t get out of bed.

26. Nobody can pronounce Chiari without five to 10 minutes of coaching and they will never, ever guess how to spell it.

27. Every day is a new beginning – it has to be.

25 Things People Don’t Realize You Do Because of Syringomyelia or Chiari

woman looking down with fist on face, text 25 things people dont realize you do because of syringomyelia

We asked our community to provide feedback to identify some things they do day to day that other people don’t realize is because they have syringomyelia (SM) or Chiari malformation. We received over 80 responses! We would like to highlight some of those responses here so that the public may better understand how syringomyelia and Chiari can affect someone.

Individuals who participated gave permission for their quotes to be published on The Mighty and we thank them for their participation.

1. “I look angry all the time but I’m really just in pain, nauseous, and tired.” J.H.M

2. “I drop everything and burn my hands way too often.” R.B.

3. “We have to plead to get good medical care. Men, women, and children in our communities have passed away every single year from preventable complications that are dismissed by their medical team. When I try to take materials to my doctor they will say, “Don’t believe what you read on the internet…” Well published medical journal information authored by medical professionals who serve as experts in the field is credible information! How many have to pay the price with their lives before these diseases and their complications are taken seriously across all medical disciplines?” E.A.

4. “I don’t ever plan ahead because you never know what the day is bringing you as far as pain, etc.  I don’t drive like I used to due to awful pressure headaches. I don’t do the smallest household chores anymore due to pain and discomfort. I can’t work a 40 hour week anymore and the list goes on…” L.H.

5. “SM feels like I’m living in a violent relationship… the mental and physical abuse is a constant battle of survival, pretending to be OK when deep down we are screaming for help, the tears fall only in my head. I refuse to be a victim no matter how hard the fight. I am a survivor, I’m not going to give up! I do everything in small doses because of exhaustion and pain. If I revert back to pushing my body to do things my symptoms and pain intensify 80 percent.” J.J.

6. “Having my wife do all of our physical chores and lifting. I was raised to be a gentleman and open doors for people and offer a hand if they’re struggling to carry things. Those days are over. I have to depend on my wife to carry heavy things for me which often gets looks from strangers.” K.R.

7. “I move and walk slow because I am afraid of tripping and falling. My feet are numb a lot.” S.V.

8. “I hide the pain behind a forced smile, for the benefit of those around me. I do not want pity, I want a cure. Besides the physical pain, I feel like I have experienced a death of my old self where I could run, jump, play, dance, walk normally, the right side of my body working properly, to feel awake, not constantly be monitoring my heart rate, not having bowel and urinary incontinence issues and experiencing the emotional heartbreak of the loss of my old self to this disease.” K.S.

9. “I will be having a conversation and suddenly I can’t talk. No words at all. Other times I speak gibberish, like I’m still carrying on like I was but it’s not in English.  It’s like I’m speaking Dothraki or something… super embarrassing, thanks Chiari.”  S.G.

10. “I have difficulty walking down the stairs due to balance and dizziness problems… in public venues my husband or son casually gives me their arm to help steady me when going down the stairs.” B.M.C.

11. “What I do for SM is fake it, lie, and fake it some more.” M.M.

12. “My head feels so heavy it is so hard to be vertical without massive pain and the feeling my head will implode down my spinal cord. My days are spent more in my bed due to pain that doctors will not address these days. I really miss the old me, the me that had quality pain care.” J.W.F.

13. “I limp because of nerve damage, stare and take awhile to respond because of processing issues.  People look at me like I’m crazy because I guess I must look normal or like I shouldn’t have any problems. They can’t see all of my surgery scars. They just don’t know.” A.J.P.

14. “I try to do things but my body says no. When I sit up in bed my heart rate goes from 65 to 120 and when I stand up my heart rate goes up to 180 making me feel bad because of autonomic dysfunction with syringomyelia. I  am short of breath and nauseated most of the time on medication and I have to limit my activities. Most recently I have heart damage from the high heart rates.” E. A.

15. “I feel despair from not being heard despite my cries for help at the doctor. I was diagnosed with depression when no one could figure out my rare symptoms… I am not depressed because of my illness… I am depressed because my medical team is not listening to me or taking my real physical symptoms seriously… all the while I am being dismissed while getting worse!” Anonymous

16. “The thing that people don’t understand is that I’m at home a lot lying down because I’m in so much pain. The change in barometric pressure causes such severe pain and when that occurs when I am out, I do not say anything to anyone. I just get home as soon as I can to lie down. It is the only way to reduce the pain but it never stops unfortunately.” B.F.

17. “I’m eight months pregnant with SM. People don’t realize that this is the reason I stay in bed all the time instead of doing the usual prenatal walking exercises — they scold me to stop being lazy and move around. Also, I refuse to carry or even hold babies, not because I don’t want to (on the contrary I love children)! I’m just afraid that the sudden pain and/or paralysis in my extremities — especially my arms caused by my cervical SM would act up and I would lose control of the tiny human in my embrace.” C.E.

18. “That it takes me two hours to shower, get dressed, do my hair and makeup just so I look ‘normal’ or presentable. I’d rather stay in my PJs most days.” R.S.

19. “Walk into walls, fall over and drop things constantly. I was once nearly kicked out of a grocery store because they thought I was drunk.” C.I.

20. “I now have to think ahead on what my day has in store and prepare for the amount of pain I will feel at the end of it. Some of the most defeating moments are when I have brain fog and can’t think of simple words mid-sentence.” S.H.

21. “Just chronic spinal and neck pain, every day I stand up to it. It’s enough. Add head pressures… like rubber bands around it, fatigue, muscle weakness, numbness, off on my gait, off balance, brain fog…it’s too much… it’s enough.” V.F.

22. “My balance of off so sometimes my feet sort of wander like someone who has been drinking too much! Walking in a straight line is now out of the question. My muscles have atrophied so I cannot walk far even with  my cane or even hold something with one hand. I cannot lift up my leg more than a couple of inches so tripping and falling is a danger. Dropping things is a constant so I have learned how to adapt as best I can especially when cooking.” K.K.

23. “I spend a lot of time in bed… not sleeping but just because it’s where I’m most comfortable. I do most things very slowly because of dizziness and tremors in my legs. Sometimes I don’t sleep at all and cannot function the next day. I am constantly fatigued regardless of the amount of sleep I get.” C. H. M.

24. “We have to work harder to be understood. Syringomyelia and Chiari are invisible to the outside and since we cannot carry our radiology scans around everywhere to teach we have to explain what we are feeling to almost everyone we meet… we are judged unfairly all the time… it’s exhausting!” A.A.

25. “We love it when we find physicians and nurses who take time to listen and try to learn about the symptoms and complications of these diseases because they make us feel valued and understood.” – E.A.


10 Tips For Parents Of Kids With Chiari Malformation

In late 2006 when he was 4 years old, my son Matthew was diagnosed with Chiari malformation. With this condition, the back of the brain goes down below the base of the skull and into the upper spinal canal. Some kids with Chiari have no symptoms, but some have symptoms that are life changing.

Matthew had weakness his in arms and legs, numbness in his hands, snoring, sleep apnea, memory problems, lazy eye, balance issues, mood and anxiety disorder, speech delay, fine and gross motor delays, developmental delays, and fluid in his ears. The symptoms often can be attributed to other conditions if the Chiari hasn’t been found yet. That’s what happened with Matthew. His symptoms started when he was 18 months old; he wasn’t diagnosed until nearly three years later.

Matthew’s communication skills were so severely affected by his Chiari that at age 3, he was only speaking about three words. That led to a lot of frustration — for both him and us.

Fortunately, we found Francesco T. Mangano, DO, a neurosurgeon at Cincinnati Children’s. It was wonderful to finally meet someone who understood what we had been going through. Dr. Mangano suggested decompression surgery (which makes more space for the brain and spinal cord.) Matthew’s surgery was scheduled just a few weeks after he was diagnosed.

The transformation after surgery was immediate and amazing. Matthew’s fine and gross motor skills improved. His balance got better. The numbness in his hands went away. His lazy eye was gone. Two weeks after surgery, he was back in school. The best thing was that within a few months, his language skills had improved to match that of his peers. It was incredible!

Matthew is now 12 and in the eighth grade. He was on an IEP in preschool and kindergarten but hasn’t been since first grade. He’s so different now, but we still have to be cautious.

Whether you’ve just received a Chiari diagnosis or are a seasoned veteran, here are some things I’ve learned along the way that may help you better cope with this condition:

  1. Research Chiari, but not so much that you frighten yourself. Talk to your doctor about where to find reliable information. Educating yourself can help you understand your child more and learn what to expect.
  2. Connect with other people who know about Chiari. Talk to caregivers who are experienced with the condition and parents with Chiari kids. Participate in a Chiari walk. Build your support system. It helps so much to hear from others who have been there.
  3. It will be hard to see your child for the first time after surgery. Matthew looked helpless. His neck was hurting, and he couldn’t move it very well. He was frustrated because he didn’t understand why he was in pain. Hang in there — they heal quickly.
  4. You might find yourself questioning everything. I’m constantly asking myself questions: “Should I be doing more now to set him up later in life?” “Am I being overprotective?” “Am I letting him do too much?” It helps to get to a place where you’re doing what you know is best for your child but you’re also allowing them some freedom. For me, finding that balance has taken a lot of trial and error.
  5. Steer your child toward what he can do rather than focusing on what he can’t. Matthew would love to play football and hockey but he can’t because of his Chiari. Instead, he’s enjoying playing for his middle school golf team. Be encouraging.
  6. Work with your child’s friends and siblings so they understand what’s off limits. Our neighbor kids know they can’t tackle Matthew and they have to be careful roughhousing. It’s better to be safe than sorry.
  7. Balancing your time and attention between all your children can be hard. It’s easy to get consumed in the Chiari world. Take some time to do something special with your kids who don’t have Chiari.
  8. Educate the adults in your child’s life. Matthew doesn’t want anyone to know about his condition. But, for his safety, I have conversations with his coaches and teachers so they know what to expect. They need to understand why he’ll sometimes miss school, or why he can’t participate in certain activities. Our school district has been very accommodating.
  9. Be prepared for anything and everything. Every child with Chiari is different. No matter what stories you’ve heard, yours might be different. Stay positive.
  10. You are the best advocate for your child! If something doesn’t feel right, question it. Get a second opinion if you feel like you need one. Don’t be too afraid to ask for help, and don’t be too proud to accept it.

Chiari malformation can present a lot of struggles. But the kids behind the condition are worth every single one.



Heartbreaking Story Of A Patient Suffering With Chiari Malformation

When Katie Morgan was a baby, she was diagnosed with a Chiari malformation in her brain. The malformation is characterized by an elongation of the cerebral tonsils, or small lobes at the base of the brain, through the opening at the base of the skull. This impacts the flow of cerebrospinal fluid and can cause numerous issues including headaches, dizziness, and problems with the arms and legs.

At only three years old, Katie endured a series of decompression surgeries. Fortunately, these surgeries relieved the symptoms she was having.

Four years later, Katie wasn’t feeling well. She was taken to the doctor, who x-rayed her chest to rule out pneumonia. The x-rays revealed an abnormal curvature of her spine. Thought to be caused by residual pockets of fluid in her spinal cord from the Chiari malformation, Katie was diagnosed with scoliosis. At the time, Katie’s spinal curves were fairly mild at 14 degrees.

For five years, Katie’s scoliosis was treated with a rigid back brace to slow the progression of the curves. Katie had to wear the brace for 22 hours a day. “This made sleepovers and other activities a bit challenging,” her mother Kris recalls. “She would have to wear the brace wherever she went which was very uncomfortable. It really limited the activities that she could participate in with her friends.” Shopping for clothes was difficult, as fitting garments around the brace was always a factor and her choices were limited.

When Katie was 11, she started having increased pain in her upper back. She was experiencing shortness of breath. X-rays showed that Katie’s spinal curves had progressed to 62 degrees, and surgery was necessary.

On February 4, 2013, David Polly, Jr., MD, an orthopaedic spine surgeon at the University of Minnesota with expertise in scoliosis, operated on the sixth grader. There were complications during Katie’s surgery. She had laxity and sensitivity in her spinal cord, and had become paralyzed on the right side. At that point, they stopped the surgery and brought Katie out of anesthesia. Fortunately, she recovered from the paralysis, and was to go back into surgery after four days to finish the surgery. Although it was a very scary situation, Katie and her parents trusted Dr. Polly.

During Katie’s second surgery, the same issues arose. “It was decided to leave a few of the screws out, at the site where the spinal cord was most sensitive,” Kris explains. “This seemed to do the trick and surgery was completed.”

Dr. Polly ultimately performed a posterior spinal fusion of Katie’s T2-L1 vertebrae with instrumentation. A series of rods and screws now hold her spine straight. “The pain that she was experiencing before surgery is now gone,” Kris reports. Katie no longer requires a brace. “The overall change that I have noticed is in her attitude and demeanor. At first after the surgery she thought the scar was ugly and didn’t want anyone to see it. Now a year later, she looks at the scar as a testimony.”

Now 13 years old, Katie is thrilled to be able to shop for clothes and participate in almost any activity with her friends. She spends much of her time in the pool or riding her bike and her parents are delighted to have a thriving, beautiful, and healthy daughter.

“Her strength and courage as she faced surgery and the recovery time after the surgery was inspiring,” Kris says. “My hope for Katie is that she continues to have the strength and faith that she has now, no matter what she may face in her future.”

What to expect when facing Arnold Chiari Malformation – Term Life

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.


15 Things You Need To Know About Chiari Malformations


1. Chiari malformations are, for the most part, congenital defects (meaning you’re born with it).

2. Chiari malformations are also known as Arnold-Chiari malformations (mainly for the Type II malformation).

3. Chiari malformations are, at their simplest definition, when person’s cerebellar tonsils come down through the foramen magnum (the hole in the base of the skull), resulting in an obstruction of cerebrospinal fluid (a.k.a. the clear body fluid in your brain and spine), which can cause a non-communicating, abnormal accumulation of cerebrospinal fluid within the brain.

4. Symptoms of Chiari malformations include (but are not limited to) headaches, fatigue, muscle weakness, vomiting, dizziness, neck pain, speech problems, abnormal breathing, and balance problems. In severe cases, paralysis is possible.

5. There are four types of Chiari malformation: Types I, II, III, and IV.

6. Type I is when only the cerebellar tonsils extend downward into the foramen magnum (without any brain stem tissue), is the most common form of Chiari malformation, and is the only type of Chiari malformation that can actually be acquired.

7. Type II, the most common Chiari malformation type, is when both the cerebellar tonsils and brain stem tissue extend downward into the foramen magnum and is usually accompanied by a form of spina bifida at birth.

8. Type III is the most serious form of Chiari malformation, where the cerebellum and brain stem (and sometimes the brain’s fourth ventricle) protrude through the foramen magnum, causing severe neurological defects.

9. Type IV is a very rare Chiari malformation which, although the cerebellar tonsils are in their normal position, involves an underdeveloped cerebellum, which can cause parts of the skull and spinal cord to be visible due to missing parts of the cerebellum.

10. There are roughly 200,000 cases of Chiari malformations diagnosed in the U.S. every year.

11. Chiari malformations are more likely to occur in women than men.

12. Type II malformations are more likely to be more prevalent in certain groups, including those of Celtic descent.

13. Many people living with Chiari malformations don’t even realize it until they’re on course for diagnosis and treatment for another disorder.

14. The exact cause of the Chiari malformations remains unknown, but the current hypothesis is that it is caused by problems during fetal development that can impair brain function, such as exposure to hazardous substances, improper diet and nutrition, infection, and prescription or illegal drug and alcohol consumption.

15. September is Chiari Awareness month. Wear purple to show your support for those with this disease!


8 surprising facts about hydrocephalus

1. Hydrocephalus is a condition of excess fluid in the brain, called cerebrospinal fluid. It is somewhat common, but is not a commonly known condition. This condition is also known as Water on the Brain, due to the primary characteristic of extra fluid being blocked in the brain’s ventricles (cavities).

2. Hippocrates, a Greek physician often discussed in ancient history class, first described this condition.

3. There are around 700,000 people – adults and children – with the condition. However, perhaps due to lack of social awareness and therefore advocacy, there is not much work being done in the scientific research community to treat or cure hydrocephalus.

4. 1960 was the first time a cerebral shunt was implanted in the brain to redirect the excess fluid. This became the primary method of treatment and is mostly the same some 50 years later. Shunts are not particularly reliable treatment, and often fail and must be replaced.

5. There are almost 200 known causes of hydrocephalus. It is usually due to a blockage keeping the fluid from moving out of the brain. In babies, this can come from brain hemorrhage during premature birth.

6. The extra fluid increases the pressure in the brain, causing complications such as convulsions and brain damage. The severity of symptoms varies throughout individuals. Intellectual disability from brain damage is rare if the condition is caught and treated early.

7. Symptoms can include headaches, nausea and vomiting, sleepiness or even coma. In babies and toddlers the head may be enlarged. Learning disabilities are common as are problems with movement and vision. Some children may develop seizures.

8. Death rates have greatly decreased due to shunt treatment, from 54 percent to only 5 percent. Overall, the rate of intellectual disability has increased by about 30 percent, due to those with more severe hydrocephalus surviving but being more likely to have complications. the 7 a p rmine if symptoms are caused by Huntington’s. If one of the individual’s parents has had Huntington’s, the individual has a 50-50 chance of having the gene. Therefore, genetic testing can be done at any age to determine if the genetic mutation is present.

8. Genetic testing is emotionally tricky, since some people may feel tormented wondering if they will contract the condition, whereas others may feel burdened by the knowledge that they will sometime develop it. Genetic counseling is offered before and after the testing to help with this difficult decision and knowledge.