What is Arnold Chiari Malformation
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain.
Arnold-Chiari Malformation II occurs in almost all ch...
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advice for treatment of chiari
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Hello, my mother was diagnosed with chiari 1 back in February. She has all of the symptoms that come with diagnosis and they are worsening as time goes on, by the day it seems. We live in Maine and up here there is no doctor who even knows how to treat or even suggest treatment for this kind of condition. Though she has been adviced to contact a Chiari Institute for further help. She is in the midst of getting all of the records together as well as a referral to send to the institute in New York. Right now she is meassuing at 8mm. My question is at what point is surgery necessary in your personal experience? Or at what point did your dr. feel surgery was necessary for your treatment? Did they base it on your symptoms or on what you were meassuring? The people that my mother has talked to that had the surgery and said they either regret having it or don't feel any better post surgery. Does anyone else feel this way? If I know my mother she is going to weigh the symptoms against the complications of surgery and post surgery before deciding what is in her best interest. But, as an observer, I can see her deteriorating pretty fast. I have many more questions about this but if anyone can start me of with a little advice or even give me a summary of their experience, that would be great! Thank you for reading and responding.
Holli Posted on 08/25/09, 10:08 pm |
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Hi and welcome to dailystrenth
My name is Jerra and I had my first surgery in June of 2007 I think they did my first one to early I've been told to go on symptoms and to hold out until you can't take it any more. I'm about to have my second surgery by a much more skilled doctor and this is what he has told me. Even if it doesn't take away the symptoms the surgery will keep her from getting worse. Can keep her from getting payralized, having a stroke, and even death. Even though I am facing a second surgery do I regret my first on becuse I am now worse off the before my first one? No, if I could go back and change it I would still do it all over again. She just needs to decide when she can't handle it any more. I hope this helps. Good luck for both of you. 
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In my opinion, if you are having problems and it is affecting your daily life, get the surgery. It is a very painful operation, but its not a high risk surgery so if you can afford it i suggest to get it done. Check out DR ATKINSON at the MAYO CLINIC. When i was first diagnosed, i wanted to find the best surgon, and his name was at the top of the list. I emailed him with a few questions, and he responded back personally in less then 20 minutes! I couldnt beleive it, specially after waiting month after month for any news from my local doctors! GOOD LUCK and GOD BLESS
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Hi there,
I havent had the surgery yet but Im going to.The neurologist that diagnosed me said I need surgery if I want a cure that is the only thing to try. It isn't necessarily based on how long the herniation it is also on how severe the symptoms are. I've heard of people getting it done at less then 5mm and some people have no symptoms with a very long one 20mm. I say have the surgery if quality of life is affected. It can lead to more complications as the previous person said and they would not be reversable.I know it is possible to need another surgery but for me it would be worth it because I cant live with the painful, life disrupting symptoms. Obviously everyone is different but that is my thoughts.
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Hello. i just joined this site. I was recently diagnosed back in June this year with a 20 mm herniation. I saw you live in Maine, i live in NH. I found a NS Dr. Pallatroni at Coastal NH Neurosurgeons. I have only seen him once and I have another appt with him in a couple weeks. From everything I have gathered from him, he is experienced with ACm and has other patients besides me with ACM. He seemed very knowledgeable about the condition and answered all of my questions I had at the time, although I have many more for him now. Their office is located at 330 Borthwick Ave Portsmouth Nh 03801 which is right over the bridge from Kittery ME not sure which part you are in. The phone number is 603-433-4666. I have him on speed dial in my cell phone..lol..I am also questioning surgery because my life currently does not exist of more than napping, pain and sleeping. I am not forced to have surgery yet as I am still awaiting the MRI to see if I have any built up fluid or not. I currently have no medical insurance which is why I am taking the steps a lot more slowly than I probably should. I do feel when I do have the surgery that I would trust it to Dr Pallatroni. He was very nice and supportive and I just had nothing but good things to say about him. Hope things work out for you!
Melissa
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I've never regretted having surgery despite my personal experience with this condition. I've been lucky enough to have been blessed with a fantastic consultant who has now been responsible for my case for 4 years.
When I had to make my decision regarding my last surgery I looked at it like this. Which of these two things scared me more 1) Living with pain and not taking a chance that surgery might work or 2) having surgery and risking further complications. I choose to have surgery. Being in pain and not taking the chance of doing something that might improve my quality of life scared me more than having surgery despite knowing what had happened to me previously.
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The Chiari Institute is an excellent choice, you need look no further.
Holli, chiari can not be cured per se, the progression and worsening of symptoms can be halted and at best, symptoms can be vastly improved. Doing nothing is not an option. Decompression surgery is harsh but life saving. I see you did not ask for referrals but many have posted additional doctors. There are a handful of Chiari Specialists, please make sure you see one of them, not a NS who "feels confident or competent" to perform this surgery. It always has to be tailored to the individual and teatment does not end with surgery. The biggest regret most Chiarian's have is that they did not have a specialist in the first place. I am one of those. This is a harsh surgery and you don't want a repeat just to fix a mistake. Good NS's just don't do enough of this surgery nor treat the related complications. TCI will also work hand in hand with your PCP and local neuro docs which is a huge plus. I am so glad your Mother has you to support her through this, enlist the help of all friends and family so you can rest too. Feel free to write and ask anything. Best to you. Mary
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