hi all! At the risk of sounding ignorant, but just out of curiosity, does anyone know the real consequences of not treating chiari with surgery? I realize symptoms get worse, but does anyone know first hand someone living with chiari with bad symptoms who has not gotten surgery? I am just trying to explore all options while still searching for the right doctor. thanx
hi, abby! i guess everyone is led down a different path with this. so far, every NS is pushing me to have surgery, & not informing me or offering other options. I agree that learning from one another is a powerful tool. Its actually all i have. may i ask what dysautonomia is? i have heard mention of this before. & at the risk of sounding comletely clueless, what is an NL? I as well have had chiari my whole life, complete with migraines, clumsiness, & some other fun symptoms. I was diagnosed 3 months ago. I have had countless MRI's & brain scans due to the migraines & nasuea'fainting spells but have been failed to be diagnosed. My insurance is so limited, i only have a small amount of NS's to choose from, meeting the last one in 2 weeks, but so far not at all comfy with any of these people cutting into my head. I am so disheartened with the whole process. Do you have any experience with medication? I am on lyrica, but really dont think it does anything at all for me. Unfortunately, I rely on narcotic pain killers to get a little sleep through the pain. It helps, but of course i worry about taking that. I actually dont even know who to have monitor me since i havnt found a NS, but that is a very good tip, thank you so much for reaching out
We are waiting on surgery for my 4 year old daughter, who also has EDS. From other parents, I've heard some long term results of not having surgery (what they believe is caused by the Chiari compression), is heat regulation issues, Dysautonomia, POTS, developmental delays, seizure disorders, and nerve damage if a syrnix is not taken care of.
We are waiting and seeing, because my daughters symptoms are not severe. I think if you lived with severe symptoms for a long time, then damage would occur. The brain needs to be bathed in cerebral spinal fluid, and when the Chiari blocks that flow, then parts of the brain may be without if for prolonged periods of time....causing damage too. Damage can also be caused by nerve damage and compression. I know of kids waiting 5 years or more, with herniations in the 20mm range.
Any decision is a tough one. I know with waiting, we are walking a fine line between a risky surgery vs permanent damage.
Midrin is excellent for me… relieved almost all symptoms quickly, but is expensive. Butal is similar and cheap but doesn’t work as fast or as long. I also take inderol (anti-seisure drug) 2x daily for headache prevention & it seems to have lessened the severity (most days)… I would try any med prior to surgery as my niece has had decompression 2x by 5 years old and she is now scheduled for tethered cord surgery. Her symptoms persist.
My 14 yr old daughter was diagnosed in January. Had surgery in February. She has been long suffering symptoms without diagnosis until she had MRI. By that time she had a holochord syrinx. Which is one that runs the entire length of the spinal chord. Her sympyoms had all of the sudden become very serios as well. Almost passing out, blurred vision, and horrible headaches. So surgery was only option we had. She was at risk and may have already suffered permanent nerve damage. The syrinx has shrunk to half the size. But since if was that way so long we are unsure of how long it will b before she can be somewhat symptom free. I guess it really depends on how bad or progressed it is. She was an excellent athlete. Not sure what her future holds now.
She recovered nicely from surgery. So I was very happy with that.
I know it’s a hard decision. Just pray about it and put it in God’s hands.
Hello I’ve had Chiari symptoms for most of my life however i wasnt actually diagnosed until 2007. Between 2007 and 2009 I went to 4 different neurologist and neurosurgeons to get different opinions and each doctor told me that i would need the decompression surgery as soon as possible. Finally in 2009 I flew from Philadelphia to Wisconsin to see Dr Daniel Heffez who also agreed that i needed to have the surgery but he didnt force it upon me, he just said that i would kmow when it’s time. So i figured i would delay it for as long as possible. In addition to all my Chiari symptoms by June of 2012 i began to experience numbness in both of my legs on a daily basis, it was a scary and undescribable feeling so i immediately called Dr Heffez to schedule my surgery. I had my surgery in August 2012 and everything went very smoothly, it was much better than i expected. Dr Heffez and his team were awesome, im so happy that i found him !
Thanks for asking that question, I've been kind of wondering about it myself. I had the surgery this past September, after being diagnosed in May...so it's been a year now... and I keep wondering how bad it would have been if I simply hadn't had the surgery in the first place. My only symptom, besides some apparently serious MRI pictures, was ringing/tinnitus in my left ear. Since surgery the ringing hasn't gone away, I spent a painful 3 months recovering, the vertebrae they operated on in my neck broke and I spent 3 more months in a neck collar/brace, and somehow a nerve got injured in the process so that I'm seeing a physical therapist for leg pain. But it's probably better than whatever the horrible symptoms they alluded to in all of those pre-surgery meetings would have been. Well, I mean, of course it is. Again, thanks for asking the question (and sorry for the tangent).
I lived with symptoms many years before I was ever diagnosed with Chiari. My Neuro Dr told me I would know when it was time when I couldn’t bare the symptoms any more. Then he actually started warning me that he could tell from my exams that Chiari was taking a toll and some damage can’t be reversed. Being hard headed I wanted to keep putting it off because I feared surgery then a fe months after my doctors warning I was complaining about pain in my ears to my family doctor an she said they looked fine maybe it was allergies. The pain continued then while in the ENT with my daughter, I asked him about the pain and he looked at me strange and asked when was the last time I saw my neuro doctor. I laughed and told him about my procrastination of surgery. He told me my eyes were not working together is why he was looking strange and I needed to go to see the neuro doctor as soon as I left. Long story short with in hours my condition worsened I looked like a stroke victim my whole left side of my body was drooped ect. The pain in the ears was pressure on the brain. I had to be admitted that day and have decompression surgery. With all that said, from waiting, I have some damage to memory, vision, hearing and nerve. I wish I would have not waited until I was in that condition do what my doctor said!
pebbles said:
Midrin is excellent for me.. relieved almost all symptoms quickly, but is expensive. Butal is similar and cheap but doesn't work as fast or as long. I also take inderol (anti-seisure drug) 2x daily for headache prevention & it seems to have lessened the severity (most days).... I would try any med prior to surgery as my niece has had decompression 2x by 5 years old and she is now scheduled for tethered cord surgery. Her symptoms persist.
wow everybody, thank you for sharing your experiences. its amazing how different everyones are. I think i would not be getting through this at all if i didnt find this group, & for that I am so grateful. It is also amazing how different every NS'sopinions are as to treatment,& it just overwhelms me. I also feel that they are not really informing me very well& this has been my best, if not only source of information. I actually asked my last NS what all this herniation is that i have heard so much of, & as he was showing me how much my brain had grown under my skull he said " you dont have that, & stop listening to people on the internet". Still cant find an NS that i have confidence in & my insurance limits me so much. Not 1 explained the consequences of waiting or gave me drug options. I am taking lyrica which does NOT help me at all, & I take percocet at night to get a little sleep through the pain. I cant imagine that is a great long term option. I have heard so much good & bad with both surgery & no surgery. What is Midrin?? is that for nerve pain? Iam also on inderol, have been for years for the migraines, & it has helped with that. GUYS< THANK YOU, THANK YOU!!!!! PLEASE KNOW HOW MUCH YOUR REACHING OUT MEANS FOR BOTH THE INFORMATION & THE KINDNESS!!!!!
Thank you for posting this! I am newly diagnosed with Chiari 1, 7 mm herniation. I am just starting to develop more symptoms, and have been having migraines everyday for the last 6 months. I do not want to have surgery and want to try everything I can to eliviate these symptoms. But the list keeps growing. I lost my hearing in my left ear yesterday for 5 minutes. That’s new. Ugh. Hopefully I will find some relief soon, and I hope you do too! From what I have read, surgery does not help everyone. We are all different. Just know that you are not alone! You can write to me anytime if you’d like! Good luck!
If you have syrinx, is surgery generally recommended?
While I normally deal with Chiari kids and their parents the most (my Chiarian is 4 years old), the consensus between parents is that if their child has a syrnix, the pediatric Neurosurgeons normally recommend surgery. I've heard some cases where the syrnix was very small, and they waited and watched. I have an adult friend who has had a syrnix for 8 years, and has not had surgery.....but she is now having numbness in her fingers and arms, and legs....
Hi Jessica,
All of us have different levels of Chiari and symptoms...so I can only speak for myself. I had suffered from horrible migraines all my life. They were so severe that I couldn't function and the pain caused me to vomit. As the years went on...more symptoms like losing my vision, constant tripping because of my terrible balance and worsening migraines. I was finally diagnosed in 2007 and scheduled the surgery right away. There was a situation with my brain stem so I had to have the surgery right away...my surgeon said it was serious... if I fell the wrong way on my neck...I could die. My 2 surgeons completed the surgery in 16 hours. It took so long and required 2 surgeons because I had the Chiari surgery and also had my adontoid removed since it was pressing against my brain stem. The recovery was long and difficult, but it was all worth it! It is now 6 years after the surgery...NO MORE MIGRAINES, my balance is better and my eyesight is better...YAYYY!!!!!!! The only issue I have is loss of range of motion in my neck. I just get massages to help the stiffness...no big deal. THANK GOD for Dr. Linda Sternau and Dr. Dan Cohen at Mt. Sinai in Miami!!!!!! They are amazing!!! Not everyone has to have the surgery. Take your time making the right decision and do your research with surgeons. I wish you well! -Jeannie :)
thank you jeanniej & giovanna for sharing!
Hi,kmeoldya, I think we are in the same frame of mind as of now with surgery. I dont know how your experience has been with your NS, but I am not having good luck, which is contributing to my position. I read your list of symptoms, & although I have just started my journey of informing myself, some of them I understand to be very serious, like the urination problem. I hope you are dealing with an NS you trust. Either way, I also hope you have gotten more than 1 opinion. living with the pain is hard enough, but ive read alot of stories from people who were led to believe they can wait untill they feel they cant wait any longer, & now they have had the surgery anyway, but live with permanent consequences. Do you mind me asking if you are taking any prescriptions to help? I have been on inderol for migraines, but since my diagnosis i am on lyrica, which does NOT help me, & take percocet for pain at night. I am looking for a better alternative. Have you had migraines other than the last 6 months? also, I see you are in the ny area. do you have issues with work? i was wondering if you have any experience with disability because I feel I am literally killing myself at work & fear I may not be able to much longer. I am on Long Island. My sister lives just outside Syracuse. would be willing to travel if you knew of a good doctor? I am desparate to find one. Thanx for sharing your story! Best wishes
Kim, I am sure there are people here more qualified to answer that question, but from what iI am learning, its the same old answer, everyone is different, it depends on your symptoms, the progression of those symptoms, & how you feel about it. My syrinx is exceptionally large, dont know how long i have had it or how long it has been that large, but it has been summized that its been there like that for a long time. My severe symptoms, however, only came about 3 months ago. before that, it was a lifetime of headaches, migraines, sweating/faint spells, etc. The doctors dont know why all of a sudden i woke up in severe pain on my left side with skin hypersensitivity after all this time. I am extremely phobic of this surgery & cant find an NS in my insurance plan I feel confident in. Please make sure to get 2nd, 3rd, even 10th opinions if need be.My 1st said he was going to do the decompression surgery & go in & drain the syrinx. The 2nd said it was too risky to drain the syrinx & never ever stick a needle in the spinal cord!!! I am embarking on my 3rd & 4th consults but running out of options.whatever you decide, make sure you are well informed, This group has been my best source for that. Another thing I have learned, BUY A NOTEBOOK!!!! write down ALL questions, symptoms, & changes. Bring it to every doctors appt. Write down everything they say. It really helps, I swear. How long has it been since your diagnosis?
Discussion in one of the Chiari organization newsletters ( ASAP ? or CSF ?) a neurosurgeon commented that surgery is
'successful' in 1/2 of the Chiari patients. They are trying to determine who will benefit from surgery and who will not. I was surprised. Does this agree with others' understandings? Any more information about Chiari success rates ?
I was only given a 20% chance of walking away from surgery better than I walked into it. With an 80% chance of being the same or WORSE and being a mom of 3, I decided against surgery for now. I have no life threatening motivations that a critical need. So I manage with several meds and a whole lot of prayer and luck to get through the days. Like everyone says, it’s all personal to the chiari. I feel for you!
I had a pain management doc who had no clue what to so with me and just put me on tons of narcotics. I’m weaned from them but life can be great one minute and kick my tooshy the next. Good luck. This is the best place you can be. You are amongst those who get it and care!
With all the answers above, you're seeing the variety of presentations and, most importantly, the variety of symptoms. the answer to what happens if you don't have surgery is NOTHING in the vast majority of patients with Chiaris(as the vast majority of patients with Chiaris have mild or tolerable symptoms).
What you may be asking is, What happens if I ignore my symptoms? That is really the crux of the matter to me. I've never seen a report of someone dying from a Chiari(but certainly you can have secondary symptoms, e.g. swallowing difficulties leading to aspiration pneumonia, severe pain leading to narcotic addiction, etc).
Yes, most MDs will look for something else. Remember, when you see a neurosurgeon, we operate. If you don't want an operation, see a neurologist(I always try to make sure my Chiari patients have achieved maximal medical management prior to consideration of srugery, barring a large syrinx, central sleep apnea, signal changes within the cord, or something that makes me worry about the increased risk of permanent neurological damage).
Clearly, having a Chiari does not mean you need surgery. having a Chiari + progressive symptoms + failure of medical management means you need to think about surgery(or continue to live life as you have, again, based on your symptoms).
Chiari is clearly one of those diagnoses in which treatment needs to be tailored to the individual, just as Christisue eloquently put(comment above).