I've seen the neurologist. He says Chiari is a very benign condition. That it very rarely in less than .1% of patients causing any problems at all. He said all my symptoms are associated with this chronic migraine disorder he thinks I have. He said about Chiari malformation..."It's a very common condition." He said a 5mm chiari is just a very benign thing. Nothing at all to be concerned about. The dizziness, confusion, can't shake my head yes or no, neck pain, trouble processing what is going on around me, the numbess/tingly in my hands, arms, and face are all just "aura" to my mirgraines.
So then I asked him what his experience with Chriari is and he said he was very well read on it. I asked him if he's ever treated anyone with it and he said no.
But he did take my head pain seriously and put me on chronic migraine meds. So I know Chiari is a 'treat the symptom' kind of disorder and I am not having any permanent nerve damange. Should I just let him 'treat my symptoms' and be okay with this for now? Or should I actively seek another Dr?
A lot of doctors are afraid that the insurance companies may not pay for the surgery if it is not severe enough. He might have experience with the way insurance companies handles Chiari. If you go to enough doctors, one might tell you what you want to hear. But be careful as this may be the wrong doctor and may have dire consequences. Having the surgery is very risky as with any surgery, and the doctor I am sure is weighing the benefits for you. There obviously is a large can of worms to open here and finding the doctor willing to take it may take some time. Hang in there
I do not actually want the surgery. I am willing to treat the symptoms. I feel like this is a 'treat the symptom' type of disorder until something progresses enough to need surgery, for whatever reason. I do, however, want a Dr. who knows what they are dealing with and what Chiari is at all. I felt like I knew more than he did when I went in there. I should be able to rely on my Dr. to give me quality advice that is correct. I'm not on a mission to find a Dr. who will do the surgery because I do not feel like I need it at this point. I am wanting to be understood and I am wanting to work with a Dr. over my specific symptoms.
As for if he's dealt with this and insurance companies that would be a big NO because he's not treated one person with chiari, he told me so himself! I just don't have that much confidence in him that he will be able to make the right medical choices with me, when the time comes. I am very frustrated today. I contacted the University of MO for an appt with them, they have several neurosurgeons who have experience with chiari. They even have a nurse practitioner who has wrote over 20 articles on it. So I would feel better, I think, if they dealt with my case, my symptoms, or whatever it is that my future with this disorder might require. I've just been so out of it today that I think it took me a few hours to process the appt and what I wanted to do from there.
Thanks for the insight! I hope you're having a nice pain-free day! :)
I’m so sorry u had a bad appointment! I truely hope things go better for you at the university of mo! I know how frustrating it is to get someone to take you and your symptoms seriously. I wish u well! Keep us updated!
tashasheart4u said:
I do not actually want the surgery. I am willing to treat the symptoms. I feel like this is a ‘treat the symptom’ type of disorder until something progresses enough to need surgery, for whatever reason. I do, however, want a Dr. who knows what they are dealing with and what Chiari is at all. I felt like I knew more than he did when I went in there. I should be able to rely on my Dr. to give me quality advice that is correct. I’m not on a mission to find a Dr. who will do the surgery because I do not feel like I need it at this point. I am wanting to be understood and I am wanting to work with a Dr. over my specific symptoms.
As for if he’s dealt with this and insurance companies that would be a big NO because he’s not treated one person with chiari, he told me so himself! I just don’t have that much confidence in him that he will be able to make the right medical choices with me, when the time comes. I am very frustrated today. I contacted the University of MO for an appt with them, they have several neurosurgeons who have experience with chiari. They even have a nurse practitioner who has wrote over 20 articles on it. So I would feel better, I think, if they dealt with my case, my symptoms, or whatever it is that my future with this disorder might require. I’ve just been so out of it today that I think it took me a few hours to process the appt and what I wanted to do from there.
Thanks for the insight! I hope you’re having a nice pain-free day!
I think if you felt comfortable with how the appointment went, then go with it for awhile and see how it goes. But if there is any question in your mind at all that it didn't seem right or as he doesn't have patient experience with Chiari. I'd recommend getting a second opinion. It won't hurt to get one. Surgery may not be suggested then either but the 2nd person you see may be more experienced with Chiari and not that its all in your head.
Hope you have a pain-free day!
I don’t feel like he knew anything at all about it aside from what he read in a book. He kept telling me that the only real problem would be if I went numb on one side and had couldn’t feel hot and cold on the other. Then I would have a chiari related problem. As much as I’ve looked into this I’ve never even heard of anything that specific being the only way you actually have chiari. Thanks for the well wishes!
Alicia Roden said:
I think if you felt comfortable with how the appointment went, then go with it for awhile and see how it goes. But if there is any question in your mind at all that it didn’t seem right or as he doesn’t have patient experience with Chiari. I’d recommend getting a second opinion. It won’t hurt to get one. Surgery may not be suggested then either but the 2nd person you see may be more experienced with Chiari and not that its all in your head.
Hope you have a pain-free day!
I agree with Alicia. Honestly, you can band-aide the problem or go seek out neurologist that deals with Chiari. I would personally feel better if he was 'educated' and had experience rather than 'reading up on it." I think you were given a blanket diagnosis.
My neurosurgeon argued with my regular neurologist because the normal neurologist said Chiari was not that bad and I did not have the classic symptoms. Now that was some crap. I fit the Chiari diagnosis pin point. The regular neurologist wanted nothing to do with Chiari, had little exposure to it, and said that my symptoms would away on their own
I trust my NS over everyone else. For today, I feel like a human!
Good luck - Tina
Thank you. I am definitely calling for a different Dr. tomorrow. There are two neurosurgeons and one nurse practitioner who all work together in this university hospital. They have it specifically listed on their website that they treat patients with Chiari Malformation type 1. Even if I just see the NP I would feel better about this because at least she is VERY well educated about chiari and if it needs be in the future, I could easily get into one of the neurosurgeons. I feel like she would know when that point was nessecary.
I am so happy to hear that you feel human again. I really know what it's like to feel so awful all the time.
Hi....
In my own experience...NL's were clueless as far as Chiari was concerned....Looking back at my own history ...I should have gone straight to the NS as my primary told me to....Funny how things go...I recently just remembered that my primary..who was looking after my best interest...told me to go see the NS..I was in denial at the time..See, my case was somewhat complicated b/c I also was being treated for Lyme Disease, which has many of the same Sx's as Chiari.
Though, I am sure the NL's I saw were not being malicious ..they were just uneducated on Chiari...I guess one of the 1st clues that they were not familiar w/Chiari is that 2 NL could not pronounce it correctly!!LOL and one actually said something like.."Oh yes, I am very familiar with Budd Chiari "..Budd Chiari is a liver problem, I think!!!
5mm can cause many Sx's...that was the size of mine.
Keep us posted on what the NS /NP says.
Lori
If you are having numbness and tingling, nerve damage is most likely occurring. I would definitely see another doctor. If he says Chiari is very common and yet he has never treated anyone with it, you definitely need a second opinion.
My doctor is telling me the same things! All my symptoms must be from my chronic migraines. I wish I had the money or family support to take this more seriously and see a specialist, or for that matter just anyone that knows what they are talking about. I hope it all works out for you.
I’m sorry about the bad experience with the Dr… as of yet there is no cure for Chiaroscuro but the surgery is a treatment and to slow down the progression of the disease. You can treat the headaches but you forgetting that the longer you wait the more you are risking your chance of having permanent nerve damage. Surgery is a scary thought but it could be your way of living a more productive life!
It never hurts to get a second opinion. I only have a 2mm chiari… and I’m having really bad symptoms. I’m seeking a second opinion while I wait for a real surgery date.