Recurrence of Chiari malformation

Hi all. I am a wife of a Chiari patient and having been through 2 brain surgeries and years of symptoms I figured I'd share and maybe it will help someone. 

Hubby got diagnosed after an MRI for back issues. He lifted something heavy he had no business attempting and blew two discs in his back. 24 hours later the back pain subsides and the slew of neuro symptoms kicked in. A back doctor on a whim did an MRI and found Chiari. Having a great surgeon he had the decompression. They removed bone, cauterize the tonsils, put on a dura patch and sent him home with strict instructions as to what NOT to do. he was perfect. Felt awesome. The best he ever had. Ate food without chocking. For 4 months. Then it was a year of doctors doing MRI after MRI to tell him nothing looks bad. No herniation. Perfect spacing in the skull. They all marveled about how well the surgery was done. But no one could figure out why the symptoms were still so bad and why they completely went away when he laid down flat. Weird right? We thought so. So the bad thing is Chiari isn't well known and the good thing is Chiari isn't well known and that's how we got insurance to pay for us to see the UCLA expert on Chiari, Dr. Batzdorf. This man knows Chiari. So he put a titanium plate in hubbys head over the hole that was there before "to see if that helped protect my hubby from reherniation" and this is what he said: 

1. Chiari can be something you are born with. But it can be something you get given the right circumstances. Any head injury or back injury increases risk. Lifting too much. Straining. Etc. 

2. Once you have it and you are decompressed it is technically "cured" BUT symptoms may remain from the condition itself due to the fact that while you HAD Chiari your tonsils pushed into your brain stem and caused permanent damage. That the surgery cannot undo. You can also have a recurrence of Chiari. For example if you strain or lift or hurt your head the brain, which has been decompressed with a whole lot less holding it up now, can slide down. Hence the titanium plate. 

3. You have to live a certain lifestyle to avoid reherniation. For life. And even then you can still get it. And that sucks. And not many surgeons will go in again to fix it. My husbands second surgery to put the plate in helped with a lot of symptoms. But what they sometimes don't tell you is yah your brain will benefit but what about your neck. Dr. batzdorf warned hubby. The damage we will do to your neck by going in again may outweigh the good to your brain. He was honest. My husband has brain damage to his brain stem that the Chiari caused. He also has severe nerve damage and structural damage to the neck due to the surgeries. This affects his arms and legs. And caused bad nerve pain. On top of all the fun brain stem leftovers from Chiari. 

4. Your patch can leak and if it does they may never find it on a test. Simply because you lay down to have the test. When my husband lays flat. He's fine. So all the tests are useless. Then he stands up. Wham. Symptoms. They call it a CSF problem. They think he has a leak. Great. They can't find it. Argue with your doctor the fact it gets better when you lie down is proof of a CSF issue. 

5. Just because you didn't have a syrinx doesn't mean you shouldn't check for it. My husband has extreme pain in the arms. From the nerve damage. But lately is losing feeling in them. We were told that could be a sign of a syrinx. 

This post is not intended to depress any of you. There is hope and it does get better. My husband was doing great for years.  The point is to share what I was told and to give you all ideas you can take to your doctors who may not know much about Chiari and help them with "where to look" for causes. My husband is a severe case. He is a severe case because he didn't take care of himself. He was young and stubborn and knew better. And did way too much way too soon and probably caused the patch to not seal properly. He went right down that list of what NOT to do and he wasn't going to be told NO. And here we are. So please. Talk to your doctors. Believe your body if it tells you something isn't right. Find the right doctor and don't overdo it. It's not worth it. He's paying that price right now. And it's high. Best of luck to you all and I wish you all well! 

I was diagnosed 2 yrs ago and had surgery but it has gotten worse it was at 8mm now at 18mm swelling in spinal cord what can i expect with annother surgery what else can be done

Hi   Not to alarm you in any way but I’ve had 4 brain surgeries related to chiari malformation. Having a decompression does not fix all symptoms of chiari. I’m still suffering and my neurologist and neurosurgeon can’t help me, only prescribe meds that work for a small duration but chiari continues to work havoc in my life.   The surgeries just gets a chiari patient out of the life threatening situation but does not fully cure what chiari does even after all is done to help. I hope you get better soon. Don’t look for any miracle, just a temporary fixes. 

Hi, I had 2 Chiari Malformation repair surgeries when I was 7 yrs old Sept 14, 2001 went bad so had another surgery by a different surgeon in chicago Dec. 28, 2001. I am now 34 years old and have a 10 year old son. My Chiari has progressed rapidly do2n to C6/C7 but the Doctors here in Rockford IL area say there's nothing to do for me but keep me drugged up. All my old symptoms are back and worse than before plus alot of new problems due to the Chiari.

Chiari decompression surgery does not address the cause of the hindbrain herniation.  I had the decompression surgery, and had 4 weeks of false hope.  Then I had filum terminale dissectum surgery and after the outpatient surgery I am back to raising my kids again.  This 45 minute surgery remove the cause of the Chiari herniation for most patients.  There are 3 doctors in the US and 1 in Spain that does this surgery.  God Bless, Steve

In the US they theorize that about 15% of Chiari herniations are cause by a tethered spinal cord.  However, Dr. Salvador in Spain has documented the tight spinal cord (tight terminale filum) contributes to scoliosis, Chiari and syringomyelia.  Dr. Bolognese, a US neurosurgeon found an average upward migration of 3.5 of the Chiari herniation after said terminale filum dissection surgery after tracking the patients that he also performed this surgery on.  If Chiari is labeled as a minimum of 5 mm of cerebral herniation, well then 3.5 upward migration is HUGE!  Dr. Salvador of Spain, Dr. Bolognese of New York, Dr. Henderson of Maryland and Dr. Heffez of Wisconsion all perform similar surgeries.  For me it got rid of or greatly lessened: central apnea, obstructive apnea, snoring. shortness of breath, back pain, numbness (face, arm, legs, feet) pain in legs, jaw pain, photophobia, fine motor skill problems (greatly improved, not gone), neurological constipation, chronic fatigue, insomnia (maybe one bad night a week now), chest pain...and this has led to the removal of depression and anxiety and given me HOPE! 

Dr. Fraser Henderson in Maryland, Dr. Bolognese in New York, Dr. Heffez in Wisconsin, Dr. Salvador in Barcelona Spain (this is where I had mine done).  So for Spain: Recovery time is about 3 days...we were walking around Barcelona the next day.  Hospital stay has you released the next day.  Surgery is about 45 minutes under sedation, although because I had central apnea they had to use anesthesia on me.  Cost is about $25,000 for the Spain scenario, which includes the surgery, plane tickets for you and required companion, hospital, lodging, food, medicines, taxi service and other.  Our church/family/friends set up a GoFund which really helped offset the cost.  They require you to stay in Barcelona for a total of 12 days, and then give you a complete post op the day before you leave, which includes instructions for your GP here in the states.  They provide a bilingual nurse throughout the entire process.  Most professional and caring atmosphere we have experienced during my struggle with Chiari/scoliosis/syringomyelia/tethered cord (tight filum terminale).  If I had gone the US route, it would have been about a 12 to 18 month wait to have the initial neurosurgeon apt plus the pretesting plus the pre-op appointment and finally the surgery itself.  My insurance provider considered this out-of-network for surgery in Spain or America so it still would have been about 25,000 here in the States or in Spain.  It took only 6 weeks once my wife and I decided to do the surgery to do the pretesting here in the States, travel to Spain, have the pre-op, have the surgery, wait 12 days, and finally return home.  The filum terminale diessectum surgery left about a 2 inch scar about the intergluteal cleft (butt crack) and gave me some pain (advil) for about 5 days but GAVE ME MY LIFE BACK, whereas the Chiari decompression surgery left  me with about 9" of scarring, 2 weeks of intense pain, cervical instability because the took off the back of C1 vertebrae, and 4 weeks of false hope and out about $10,000.  Godspeed to you, and please do all your research.  The Institute de Chiari Barcelona's website explains everything, and Dr. Salvador is the neurosurgeon there who invented/discovered this surgery.