JUST WANT TO KNOW IF YOU HAVE THE CHAIRI MALFORMATION SURGERY WILL IT GO AWAY AND NEVER COME BACK OR YOU LIVE WITH IT FOR THE REST OF YOUR LIFE
You live with the possibility of symptoms recurring for the rest of your life, unfortunately.
I found out I had Chiari when I was 46 years old. I have done lots of research on every aspect of this horrible birth defect and the chances of being completely cured are slim to none. I had a girl come though my checkout line in the grocery store that I work at saying she was recuperating from brain surgery. Has she walked down my line I asked her after seeing the scar on the back of her neck if she minded telling me what she had surgery for. She then told me Chiari Malformation. She is on disability probably the rest of her life she told me. She told me that she has had several surgeries as a result of her Chairi and none have resulted in any real relief. I have had what I thought were migraine headaches my whole life and after some extreme stress I was the diagnosed with this condition. I had to quit working for awhile, I was doing warehouse work at the time. Doing my 2 years of unemployment my husband got me a DVD player that had WiFi and I got Netflix. I watched a program called Fat, Sick and Nearly Dead. I wasn't fat but I felt sick and nearly dead. I was told I would never work again, but was advised at my age to not have the surgery, just live life the way it was. I juiced and started walking every single day. I am now working again, upset that I had to go back into retail customer service, but at least I'm working again, something they told me I would never do again. I have my good days and my bad days, but the good outweigh the bad. I owe this all to "Fat, Sick and Nearly Dead". I continue to do my juicing and I feel that it is the only thing that has helped me get to where I am. I have several conditions resulting from Chairi which my doctors prescribed medications for and I don't take any of them anymore, although they don't know that. Prescription free, I take a couple of supplements and juice on a daily basis and feel better then I have in a very long time. Try some of these out and see how you feel, it can't hurt, it will make you feel better. I hope that this makes you feel better, PLEASE let me know. Also get you a Nutri-Bullet 900, its makes a difference. Don't get a regular blender or juicer, I've tried those and Nutri-Bullet by far works the best. Good luck to you. Looking forward to hearing how your doing. Have an awesome day!!!
I had surgery in 2001 and have been nearly symptom free once I fully recovered which took a good 12 months to do. That was frustrating but I am so happy I took it slow and did what I needed to do during that 12 months to get and stay healthy.
Everyone is different Dolphin Love. Its why its important to get a team together you have confidence in. Chiari is a mechanical defect. There is no way to repair it EXCEPT surgery. Diet, supplements, chiropractic. none of those things will repair the mechanical defect.
Where it becomes difficult is that it is not clear except in a few cases that the defect is the cause of the symptoms a person has. The more surgeries that are done the more it is known that there are a but a handful of cases the surgery can have a definite effect and a handful more that it might have an effect. Because we do not know whether the chiari is the cause of the symptoms or the result of something else that causes both the chiari and the symptoms, there are no guarantees. There is less surgery being done now than a few years ago and since 2013 there has been an attempt to better define the population that gets surgery. The estimated 30% failure/complication rate is simply too high.
Now that rate does not apply to every surgeon some are much lower than that because they are very selective in what patients they choose/recommend for surgery.
The other consideration is despite advances in imaging, The diagnoses and treatment of chiari is still a clinical diagnoses NOT a surgical diagnoses based on objective data. Your team needs a great Neurologist, PCP/internist, etc. You need to be an individual. You of course need to gather every bit of data. knowledge you can, but at the end of the day the decision needs to be a team decision. If you can not trust your team you need a new team.
The surgery was worth it for me...everyone seems to have a different answer to that question; I think it is a matter of what YOU personally are willing to live with, what you are hoping to lose & what reality comes to mean to you. If you do nothing...you are guaranteed to lose pretty much everything that makes YOU yourself...it's about damage control.
TJ1, I like what you had to say and I’m curious how you went about creating your team. Thanks for sharing your perspective.
My experience may be a bit different but may helpful anyway Wolfhoundlvr. I have my own list of diseases that aren't chiari. However when grandaughter was 5, she and her mom were rear-ended at high speed by a drunk driver. Mom was killed my son who was deployed in Iraq at the time was being brought in from the field for compassionate leave was KIA by IED.
Suddenly my wife and I were parents again. My grandaughter Tana was pretty badly injured in the accident and was airlfted to Seattle for treatment. Primary was a brain stem injury from the whip lash which of course resulted in a herniation and she had a small bleed in the front temporal lobe. The docs at Seattle Childrens were evenly split on what to do. I didn't know any of them well enough to know what to do. Frankly my biggest worry was how to tell Tana her Daddy wasn't coming home after all.
I called Tanas Pediatrician who gave me the best advice I have ever had. She simply said don't worry about the injury, worry about what the injury has done and deal with that. Unless the injury/herniation is unstable we had time to decide explore and ask. Thats where we started. We made a list of everything effecting Tana. Head ache, Nystagmus, siezure, loss of coordination, self control, etc etc. We made a list of how to treat it coming from each specialist. Eye, neurologist, PT, OT, Physiatrist. I picked each specialist based on asking around and making friends with a lot of nurses, lots of time on the internet, called other parents, went to support groups etc............ NOBODIES opinion was worth more than anybody elses.
Then I made a spread sheet of symptoms and treatments looking for common ground. Tana developed some other things along the way so we added more people. She now has a PCP who drives the bus, a neurologist, a gastroenterologist, a PT, an OT, a Rheumatologist and still a pain management physiatrist. They all communicate through our PCP. We opted against the surgery, and have never regretted it.
The most important question to ask IMO is to look the prospective "hire" square in the eye and i do mean square in the eye and ask if this was you mother, father, wife, child etc what would you do. If there is the slightest hesitation waiver in his answer or eye ask Why aren't you sure???? Then the hard question who would you have take care of your Mom if you couldn't. After the appointment decide if you can work with the guy. I know we all like the idea of having a nice guy with a wonderful personality. In the field of neurology, they are rare, decide first if you think they are competent..... Remember you have been born with this, or the accident was a while ago. It isn't likely you have to make any quick decisions. if you are asked for one - RUN.
Thanks TJ1. I really appreciate you taking time to give such a thoughtful response. Yes, circumstances may be different, but I find it helpful to hear your process in determining how to get the care you or your loved ones need.
I am truly sorry you and your family has had to contend with so much loss and subsequent challenges. Tana is lucky to have you in her life and we were blessed to be protected by your son in his service to our country. Bless you and your family!
For me~~I regret surgery! I’m in more pain now then before. Surgery got rid of the coughing headaches, ringing, dizziness and some other odd stuff.
Few years later I have horrible neck pain, back pain and headaches. I have the cape pain almost daily. I have eye pressure the causes pain.
Had I known I would have avoided surgery. Overtime the chiari stuff came back with that other garbage.
Surgery helped with my balance and decreased the level of pain. However, I still get headaches about 2-4 times per month and they last about 3-4 days. Like I said, they aren’t as bad as they were pre-decompression (which was November 2013). My husband works out of town 5 days a week and I was literally bedridden a couple of days a week pre-surgery, so I chose the path that was best for my situation. I have no regrets, but I still feel like I’m fighting for proper care and still in search for the right care team. Neurologist just keeps saying in have migraines and is just throwing different prescriptions at me. Best of luck to you.
I was diagnosed with a Chiari Malformation around 2006 ... and approximately a year before.. I got hit by a car while riding my bicycle ( I mention this because I've heard that sometimes an accident can trigger a chiari to present itself or for symptoms to appear.) It has mostly affected my speaking , swallowing, & digestion. ... in addition to my gait on my left leg.. I have a bit of a limp. My neck hurts a lot.. esp when i sleep and it's tough to find a really comfortable position. I also have a bit of an acid reflux cough.. and I am about 5 - 10 lbs underweight. I haven't had any surgery for two reasons.. it's not really necessary and I'm not a candidate because I also have a right brain AVM.so it would be too risky.
However, I just wanted to respond to "SEASCAPES" comment on the NUTRI BULLET.. I have one and I use it EVERY DAY.. and it is definitely the best thing for me.. I use it first thing in the am.. and it helps me with all the digestive, reflux, & coughing issues.. wakes me up and makes me feel better..
seascape said:
I found out I had Chiari when I was 46 years old. I have done lots of research on every aspect of this horrible birth defect and the chances of being completely cured are slim to none. I had a girl come though my checkout line in the grocery store that I work at saying she was recuperating from brain surgery. Has she walked down my line I asked her after seeing the scar on the back of her neck if she minded telling me what she had surgery for. She then told me Chiari Malformation. She is on disability probably the rest of her life she told me. She told me that she has had several surgeries as a result of her Chairi and none have resulted in any real relief. I have had what I thought were migraine headaches my whole life and after some extreme stress I was the diagnosed with this condition. I had to quit working for awhile, I was doing warehouse work at the time. Doing my 2 years of unemployment my husband got me a DVD player that had WiFi and I got Netflix. I watched a program called Fat, Sick and Nearly Dead. I wasn't fat but I felt sick and nearly dead. I was told I would never work again, but was advised at my age to not have the surgery, just live life the way it was. I juiced and started walking every single day. I am now working again, upset that I had to go back into retail customer service, but at least I'm working again, something they told me I would never do again. I have my good days and my bad days, but the good outweigh the bad. I owe this all to "Fat, Sick and Nearly Dead". I continue to do my juicing and I feel that it is the only thing that has helped me get to where I am. I have several conditions resulting from Chairi which my doctors prescribed medications for and I don't take any of them anymore, although they don't know that. Prescription free, I take a couple of supplements and juice on a daily basis and feel better then I have in a very long time. Try some of these out and see how you feel, it can't hurt, it will make you feel better. I hope that this makes you feel better, PLEASE let me know. Also get you a Nutri-Bullet 900, its makes a difference. Don't get a regular blender or juicer, I've tried those and Nutri-Bullet by far works the best. Good luck to you. Looking forward to hearing how your doing. Have an awesome day!!!
Surgery has helped me a lot but have undergone it twice in the last 12 years. proper rest and physiotherapy after the surgery will help to become normal. though I have difficulties, I am very much fine. Daily exercises keep me going. All the best.
I had surgery and most of the symptoms have not gone away! I am sick more than I am well. I have felt hopeless, at times, but writing about it has helped!
Hi Dolphin,
I wanted the post below that I sent out last summer to another member. Everyone is different but with my daughter it has now been 9 months and she is still going strong. We have a follow up MRI this Thursday to see how everything is going internally and if how she is acting now is any indication of what to expect on Thursday then I know it's going to be great news. Every so often our daughter will come up to us and say "thank you for helping me with my headaches. When can we go visit my friend (her doctor)"? This brings happy tears to our faces every time.
I guess what I am trying to say is that I am not sure if your will every go away in it's entirety but for me and my family it was the hardest yet most satisfying decision we have ever made. There are no more visible signs for our 3 year old!
Hi Steve,
I am sorry to hear about your son's diagnosis. My family and I just spent the past two months on a roller coaster ride since finding out on May 19th that our soon to be 3 year old daughter had Chiara type 1 that happened to be 17mm. In February she started complaining of headaches about 3 to 4 times a week that involved her grasping the rear of her head. A couple of months later they started coming 3-4 times a day and it seemed like it was always while exerting herself with some sort of activity. Her pediatrician dismissed it at first but then we advocated for an MRI fearing for the worse. It is not like a 2 year to complain of headaches. On May 19th we went to Children's hospital in Boston for an MRI which revealed the Chairi. Due to her wanting to get help for her headaches and "wishing" them away, we thought that it was best to keep her informed during the whole process. The doctor at Children's gave us his professional opinion on what needs to happen from this point on and encouraged us to seek other opinions in which we did at two other Boston hospitals. A month later we decided to go with the operation at Children's. It was the toughest decision either one of us had to make. We were putting our newly turned 3 year old on the operating table for brain surgery. We almost didn't go through with it due to our fear of what could happen. There is so much stuff out there on the internet and it seems to be 75% bad and that can be scary. Five days before her operation we decided to go up to NH for a family trip. During this trip her condition got worse. Within a couple of minutes of being in the car she was screaming "I have to puke" at the top of her lungs like someone was stabbing her the whole ride but she never did. This continued on up to the day of the surgery every time we got in the car. I have not doubt in my mind this had to do with her Chairi. This is what pushed me in favor to have this procedure done at Children's Hospital. The Surgery was June 24th.
It has now been 5 weeks and she had her follow up yesterday. I am very pleased to report that she has not had 1 headache since nor complained of puking while in the car. In fact I think this is the best she has ever felt she just didn't know any difference before this. She had been living her whole life like this and not being able to communicate as such due to her age.
I wanted to share this with you because I know exactly what you are going through and would like to share you with our doctor's name if you are looking for a doctor and not sure where to start. As you know, you are seeking advice for your son and not you, which makes it even that much harder. I am not sure if am "allowed" to post his name on the forum so if you would like shoot me a message and I will share his name with you since you mentioned that you live in the North East. I trust him 100% with my life and my families.
Gateric, positive doctor recommendations are very welcome here on the forum. For your security, we edited out your email address, but if you send a friend request to dolphin, you can message each other on the site once it is accepted.
Once you have Chiari you will always have it. However, surgery helps a lot of people. It made my life so much better.
Hello Seascape!
Would you please consider doing a separate post on juicing? I also juice everyday and I believe it has made a big difference on the inflammation level in my body. Could you also share a starter juicing recipe for the rest of us as a good way to start?
My husband makes spinach, kale, carrots, beets, flax seed, strawberries, apples, bananas, orange juice, pomegranate juice, fat free yogurt, and a spoon of almond butter each morning.
He uses the Vitamix so we eat all of the pulp and everything else.
BTW, I also love that film, and it continues to make a difference for me.
Thanks for the great idea!
Peace, Brian
seascape said:
I found out I had Chiari when I was 46 years old. I have done lots of research on every aspect of this horrible birth defect and the chances of being completely cured are slim to none. I had a girl come though my checkout line in the grocery store that I work at saying she was recuperating from brain surgery. Has she walked down my line I asked her after seeing the scar on the back of her neck if she minded telling me what she had surgery for. She then told me Chiari Malformation. She is on disability probably the rest of her life she told me. She told me that she has had several surgeries as a result of her Chairi and none have resulted in any real relief. I have had what I thought were migraine headaches my whole life and after some extreme stress I was the diagnosed with this condition. I had to quit working for awhile, I was doing warehouse work at the time. Doing my 2 years of unemployment my husband got me a DVD player that had WiFi and I got Netflix. I watched a program called Fat, Sick and Nearly Dead. I wasn't fat but I felt sick and nearly dead. I was told I would never work again, but was advised at my age to not have the surgery, just live life the way it was. I juiced and started walking every single day. I am now working again, upset that I had to go back into retail customer service, but at least I'm working again, something they told me I would never do again. I have my good days and my bad days, but the good outweigh the bad. I owe this all to "Fat, Sick and Nearly Dead". I continue to do my juicing and I feel that it is the only thing that has helped me get to where I am. I have several conditions resulting from Chairi which my doctors prescribed medications for and I don't take any of them anymore, although they don't know that. Prescription free, I take a couple of supplements and juice on a daily basis and feel better then I have in a very long time. Try some of these out and see how you feel, it can't hurt, it will make you feel better. I hope that this makes you feel better, PLEASE let me know. Also get you a Nutri-Bullet 900, its makes a difference. Don't get a regular blender or juicer, I've tried those and Nutri-Bullet by far works the best. Good luck to you. Looking forward to hearing how your doing. Have an awesome day!!!
Bri said:
Hello Seascape!
Would you please consider doing a separate post on juicing? I also juice everyday and I believe it has made a big difference on the inflammation level in my body. Could you also share a starter juicing recipe for the rest of us as a good way to start?
My husband makes spinach, kale, carrots, beets, flax seed, strawberries, apples, bananas, orange juice, pomegranate juice, fat free yogurt, and a spoon of almond butter each morning.
He uses the Vitamix so we eat all of the pulp and everything else.
BTW, I also love that film, and it continues to make a difference for me.
Thanks for the great idea!
Peace, Brian
seascape said:I found out I had Chiari when I was 46 years old. I have done lots of research on every aspect of this horrible birth defect and the chances of being completely cured are slim to none. I had a girl come though my checkout line in the grocery store that I work at saying she was recuperating from brain surgery. Has she walked down my line I asked her after seeing the scar on the back of her neck if she minded telling me what she had surgery for. She then told me Chiari Malformation. She is on disability probably the rest of her life she told me. She told me that she has had several surgeries as a result of her Chairi and none have resulted in any real relief. I have had what I thought were migraine headaches my whole life and after some extreme stress I was the diagnosed with this condition. I had to quit working for awhile, I was doing warehouse work at the time. Doing my 2 years of unemployment my husband got me a DVD player that had WiFi and I got Netflix. I watched a program called Fat, Sick and Nearly Dead. I wasn't fat but I felt sick and nearly dead. I was told I would never work again, but was advised at my age to not have the surgery, just live life the way it was. I juiced and started walking every single day. I am now working again, upset that I had to go back into retail customer service, but at least I'm working again, something they told me I would never do again. I have my good days and my bad days, but the good outweigh the bad. I owe this all to "Fat, Sick and Nearly Dead". I continue to do my juicing and I feel that it is the only thing that has helped me get to where I am. I have several conditions resulting from Chairi which my doctors prescribed medications for and I don't take any of them anymore, although they don't know that. Prescription free, I take a couple of supplements and juice on a daily basis and feel better then I have in a very long time. Try some of these out and see how you feel, it can't hurt, it will make you feel better. I hope that this makes you feel better, PLEASE let me know. Also get you a Nutri-Bullet 900, its makes a difference. Don't get a regular blender or juicer, I've tried those and Nutri-Bullet by far works the best. Good luck to you. Looking forward to hearing how your doing. Have an awesome day!!!
I throw pretty much whatever I have into my juicing, but I always have a lot of good foods anyway because I have also noticed that by changing my diet almost completely has made a huge difference. I usually do kale, spinach, chard (a spring mix),cucumbers, red apple (green is to sour, unless you like that), goji berries, flax seed, chai seed.
The Vitamix is a very good one too, but pricey. The Nutri Bullet does the same thing, you have to get everything from what you are juicing for it to make a difference. I hope this helps, it has been a lifesaver for me. God Bless.
Where can I find concrete evidence, to share with my doctor, that once you have Chiari, you always have it???!!! I had brain decompression in 2008, but I still suffer almost daily! I honestly do not know what it feels like not to have a headache! I am going for a new MRI this coming week, but still get the sickening feeling that the practice believes that their work is done! Please, help!