I just wanted to post something that has been very discouraging to me on here. I have found that many people, while I understand that it’s only opinions, tend to disagree or put down what some people have had done. I have found myself so discouraged or second guessing myself from some of the things I’ve read that I have contemplated withdrawing from this site. I just want everyone that is new and may be considering surgery and are looking for a good NS to know that there are as many different variations of this surgery as there are NS’s almost, so if you find a NS that YOU like and are comfortable with but maybe they have a “different” approach to the surgery than you have heard of before, don’t disregard them. Do the research and make your own informed decision. I think we all would agree that a Chiari Specialist NS is who any Chiari patient should go with, but what procedure variant you go with is all dependent on YOUR specific circumstances. What may be best for one person, may not be best for another. In my particular case, I was just diagnosed in November. I had the “big 3” of Chiari symptoms, the ha’s, neck pain, pressure pain/near syncopal/deafening episodes with position changes. I also had some other things like occasional chest pain, and was and still am on Neurontin for Shoulder and arm pain from nerves being crushed. My NS at The Chiari Institute decided, based on my symptomology, the herniation, no syrinx, that he thought I would best benefit from a cerebellar tonsilectomy. There are many on here that disagree with that but that is what was best for my situation. Had I had a lot of the other issues many people have, I’m sure that is not what he would have thought would be best. But he felt that I had a greater than 85% chance of total relief from my symptoms with this procedure and I was comfortable with that. Please just try and be encouraging. I think we all are on here for that. I hope I have not offended anyone and if I have, I’m sorry. I just want to encourage and be encouraged through what has been for me and I’m sure everyone else on here, the roughest journey in my life so far.
Each patient will have different needs and there is much debate among surgeons on what should be the standard decompression procedure but no real consensus. As long as the patient is informed of the procedure being done and trusts their doctor nothing else matters! Best wishes on your recovery! :)
Thank you! Yes, I would certainly question the dr’s. unfortunately, there are many in the field of NS that don’t want to hear your questions and answer them. I worked in the ER for years and there are even some ER docs that have that attitude. But there is a lot of information out there that can be researched. Some good, some bad, but nevertheless info. My husband always tells me to stay away from reading everything on the Internet but I am one of those that wants to know everything I can and then be able to go in knowing what questions to ask. I just want everyone to know that there are so many different ways this surgery is done and more importantly ways that are going to benefit your specific situation. All of us have Chiari Malformations but not all of us have all the other disorders that can come along with Chiari. But the one variant we all have in common besides Chiari is that we all want encouragement to get through this.
My biggest concern is that anyone considering it be prepared for the long recovery it can take. I have had multiple surgeries in recent years and nothing, not even the birth of three children (2 nearly 9# babies with full inductions without pain meds) prepared me for what ended up being a very long and painful ongoing recovery. I have every confidence my neurosurgeon did the best job given my circumstances. How were any of us to know how thick my skull was and how much complicated bone work would be required to perform the surgery? From reading on here, most seemed today they were doing great in three weeks. At the three week mark, my husband returned to work and hours latest I was back in the hospital for three days and the three other time should have gone back in but didn’t want the burden of added hospital bills. Have a good plan in place. We were lucky that my husband was able to borrow against future leave and take 2.5 months off last summer so that I could recover enough to be in my own. Just make sure you are prepared. I would rate my surgery results as a 5/10. My symptoms haven’t progressed, but most lessened. I still have headaches, I still have problems with pressure, vertigo, balance, some cognitive stuff etc. But only you can decide what is best for you in your circumstances. I honestly believe had I not gone forward with it, I would require around the clock care due to the rapid progression of cognitive dysfunction and motor skills. I no longer have that fear. So in that way, it was a huge success.
Thank you so much for what you said. I feel like every person is different. I am going in for surgery options. I was reading on here and I got myself scared but your right everyone is different. I feel alot better after reading your post. Thank you
Yes my dear. You are so right. This is a terrible ordeal to have to suffer through. And i am often reminded of neurosurgeons Dr. Oro's great quote "one person's chiari is one one person's chiari". Each treatment therefore is going to be different. We must all be sensitive and thoughtful in the way we treat each other...as we should always be with all people chiarians or not of course but we forget sometimes ;-0
Gentle Hugs to you all
Alanakay, am sorry to hear that you are going through so much just after having a baby! I’m glad they are addressing the CSF leak! I think that is a lot of what overwhelmed me is knowing I had just had this major surgery that was more aggressive and invasive than, apparently, a lot of people on this site with the tonsilectomy, and seeing a lot of negative and scary responses about it. not directly to me but in other discussions. And then even had someone question me very negatively about the surgeon i had cut on me, telling me they had heard about all this negative stuff about him. Even though he is a chiari specialist NS at one of the few chiari centers in the US. I did my research and he is who I felt comfortable with and the procedure he performed is what my husband and I along with the surgeon felt would best benefit me. But like I’m sure you’ve read, every Chiari patient has their own story. Some of us new to the diagnosis and some that have been through the ringers. But even after the opinions, and a lot of them are very positive, it is ultimately up to you. And that is why I said to do your research on your diagnosis, the NS you choose, and the procedure they want to do. I would love to keep up with your progress and help in any way I can!
Mandy, I agree about the anxiety! I am about 4 weeks post op now and to just have had major brain surgery and read something negative about the procedure or even question my choice of NS totally freaked me out! I can’t go back and put the parts they removed back or change the person who did it. And I am extremely sensitive right now. I still want to cry a lot and my husband keeps reassuring me that the decision we made was what was best for me. I do think all the comments have been with good intentions but that is why I posted what I did. Thank you for your replies! I lol when you said you were thinking about your reply while in the shower and wondering if your reply made sense. That is so me! I think about things I’ve said and question it all the time! I was following it:-)
Alanakay said:
I agree. I have encountered so many fear monger Tyler people especially in some of the chiari pages on FB. All I have been doing is searching for people who really are essentially asymptomatic as I am to provide myself with some reassurance that I may be ok with no surgery. I am scared to death. I have a ton on my plate right now and I have been scared so badly by being bombarded with horror stories and opinions on what I should do and who I should fire etc. I am so frustrated by this whole situation. I am four months postpartum, and leaking csf from my nose. I will be having surgery for that on June 25th. Please try to keep in mind that people just diagnosed may be very fragile, as I am, and to go a little easy on us.
Yes, Beeba, I was just replying to Mandy and saying that I laughed out loud when she said that because I do the same thing! I was also saying that I do think the things people have said that were negative in my eyes, I’m sure were made with good intentions. I don’t think anyone on here is out to hurt or scare anyone, but I think we do need to be more thoughtful of the situation at hand sometimes. I said in my previous post that someone questioned the NS I had just cut open my head and say some very negative things they had heard about him. I immediately was scared to death, even though I knew I had done my research, and started looking into every physician malpractice site I could find trying to reassure myself. (I did not find anything) I know that person didn’t say what they said to hurt or scare me, but unfortunately they also did not know I was 3weeks post op. Thanks for the replies, Beeba!
I agree with you 100%.
Oh my goodness, your post was great Mandy, especially the part about having brains that are too big and also run too fast. Yes i also have anxiety. and OCD.
Mandy said:
So I was just thinking about this while in the shower, and I realized that my response does not directly address your post, and I hope I didn't come across as saying you were crazy, because that is not at all what I think.
I think we all respond to things differently, and most of us would have taken a shorter route than going through the extra doctors, multiple misdiagnoses, not being believed by doctors and family, not to mention unnecessary procedures. When people care, they tend to be more emphatic, in my experience, if they are worried you are making a decision that has the potential of serious injury. I see the responses as signs that people genuinely care about my health. I then continue my research and make a decision. My decisions are not always right, but they are mine to make.
I don't know you, and wouldn't recognize you on the street, but I hope you know that I care. I read another of your posts that you are feeling better, and I was relieved to see it.
Honestly, I don't want people to feel there is negativity towards their decisions, and this IS a place to feel understood, especially when friends and family don't always get it. But I hope our caring towards you, and for all who suffer from this, isn't misunderstood :). Sorry, I had to use the smiley face, writing that last sentence without sounded stiff.
As for the anxiety, I was attempting to ease yours (and others) minds by showing this is very common among us, it's because we have brains that are too big and run too fast.
I am really hoping I didn't muddle this up more!
Take care,
Mandy
Mandy I think you may have two heads but the second one is on my body cause we sound like the same person!!! LOL I totally could have wrote this!!!
Mandy said:
You guys, thank you for sharing this with me! After my revelation in the shower, I was just hoping I hadn't made too much of a mess of it. I am always very thankful when I read about others here, and how much alike we all are! I had all of these little quirks that most of my friends and family didn't know about, and when they'd find something out, I swear they look at me like I've got an extra head or something! No, it's NOT strange that I obsess over finding the most reliable best priced toaster out there. Or that I come up with stuff in the shower. Or that I think and think and think and think about the things I say, and later on have to tell someone that I was dwelling on this, and I wanted to make sure I didn't hurt their feelings. I probably have more productive things I could do with my brain, but I do a lot as it is, my brain rocks (all except the part squished out of my skull anyways). You know when you just KNOW something, and can't wait to share it with others, because then that thing you know won't be consuming 50% of your brain power, and you can move onto something else? (Please don't type at me that I have two heads, LOL!!!)
Seriously though, you ladies are amazing :)