Betty, I accepted your friend request:-) And yes I am seeing Dr. Gilmer. I would be more than happy to answer any questions you may have. Just let me know.
betty said:
Hi Kristi,
I sent you a friend request because I wanted to hear more about that doctor near Detroit since I live right outside Detroit. I am thinking you are speaking of Holly Gillmore and if you are, unfortunately she does not take my insurance. But I still wanted to hear what you know about her.
Thanks Kristi W. said:
Betty, yes it is very unfortunate that we all have experienced this at one time or another. My first NS told me that my problems had nothing to do with CM and that i was just suffering from headaches. He actually had the gall to compare my head pressure with the headaches he gets from wearing a tie everyday! I wanted to grab him by his tie and strangle him with it, lol. I thought my husband was going to knock him out! Then he told me he would be more than happy to do the surgery and "leave you a nice little scar for the rest of your life" but it wouldn't do me any good. Thankfully, I did my research and found an amazing NS near Detroit who specializes in Chiari and has even started a Chiari center at her hospital. She holds many confrences to raise awareness amongst the Dr's in this state on how to look for signs of Chiari so patients don't have to suffer. I would have gone to her hospital last night, but it's 2hrs away from me and I was hoping the local hospital could call and consult with her on what they could do for me, but they weren't willing to do that. I wont make that mistake again. Lesson learned. Hope you find a good and caring NS soon. Best of luck to you:)
betty said:
I am so sorry that happened to you. Unfortunately I think it is pretty common. My symptoms are nowhere near as bad as yours and the one neurologist and 2 NS I've seen made me feel like I was "doctor shopping" and crazy.
The last NS I went to said nonchalantly that he wanted to remove my C1 during my surgery. When I asked him what the C1 was for and the side effects of removing that and what that would cause, he said nothing. I then asked him if the C1 was unnecessary, then why do we have it? His attitude towards me immediately changed and basically told me it was up to me if wanted surgery or not. When I said that he was the expert on the issue, not me, he basically reiterated that it was up to me and then walked out of the room. No mention of any follow up if I do or don't get the surgery. Do symptoms progress? Should I get another MRI every year? Nope, just pay your co-pay and get the "eff" out.
We are our own best advocates, but unfortunately when we do that, we are sometimes labeled as a "difficult" patient. I think of that Seinfeld episode where Elaine is labeled that and no doctor will see her. I am starting to feel like that.
Hang in there and keep advocating. I wish you the best.
Wow I think this is very serious and thanks for sharing! I hope you get some answers and help! I am glad you posted this I was about to go to the ER yesterday as was in so much pain but not like you it sounds! I didn't go cause I figured that just what you experienced is what would have happen to me also . NOBODY knows about what we are going through or about this condition! SO all I can do is take a lot of drugs till pain goes! SUCKS ! Feeling sad for all of us! :(
Sorry you are going through the same thing Susie. We shouldn't have to suffer in pain because of knowing how we will be treated in an emergency room. We get treated like we are just seeking drugs like we're addicts. When all we want is for them to take us serious and run some tests to find out why things have gotten worse. It was kinda funny when I got my discharge papers that said "back pain" and under the section where it says come back immediately if you develop weakness or numbness in the legs. lol, I had that when I was there, couldn't walk without assistanceor a wheelchair! I yet i wasn't an emergency and there was nothing wrong with me. They need to get a clue. It's ok though, I'm going to the hospitals patient advocate on Monday and filing a formal complaint for neglet and refusal of treatment for a serious neurological condition. I'm pretty sure they won't do anything about it, but at least I can do my part to bring awareness to this hospital and maybe they will think twice before doing this to someone else. Hope you can find a little relief soon.
I was so lucky when I went to the ER, The Doctor had Chiari. She helped me in every way she could . I just hope things continue to get better for all of us who suffer with Chiari. So many of you work hard to help that happen. I thank you all.
I’m sorry that you can’t get at least something to get you through until the MRI.It makes me wonder if they know what your talking about when you say tethered cord?I wonder if they would treat a family member like this? I wish there was a way to reach the mainstream med.community about chiari it is so ignored if it is not causing paralaysis.I am truly sorry breaks my heart,just hang in there hopefully there will be help after you MRI.praying for you.
Thank you Lynn. I wish there was something they could do also. I'm still hurting so much and I know there's nothing I can do, just have to hang in there until the MRI. Hopefully I can get in to see my Dr. shortly after to get some relief. Just wish there was more we could do to have our voices heard. Thank you for your kind words. I am so grateful for all of you, and all the support! :) We may not have the care and support from the medical community, but at least we have each other.
It’s to bad we as chiari patients can’t call others when we have to go to the ER or repeatedly to docs who refuse to help us and just picket outside their doors until someone listens to us!!Maybe we should organize some marches on the streets for equal rights for chiari patients in the medical communities,that might be a little much but after what some of us have been through and still have so much to deal with.It’s a shame that our Dr.s are almost causing us more pain mentally than we’re facing physically,and I know they do it out of ignorance of this condition,not out of trying to be mean,but it still doesn’t help us.Is there anything we can do?When we get good results from those who know what their doing be sure to send records from our surgeons to our former Dr.s even go back and talk to them just do a follow up.I did that and I’m afraid I might have made the NL a little aggravated but it is not my goal to offend anyone,but to bring my case to mind when other people present the same symptoms as I have,if we will do this maybe we could make a difference,has anyone else done this?Patients need not be intimidated by Dr.s but let them know you’ve be harmed by a lack of knowledge.
It's funny you say that, I've been thinking about that all day. I would love to gather a group of local Chiarians in my area to picket outside our local hospital to help bring awareness to their Dr's refusal to treat us and their ignorance of our condition. However, we would probably get arrested for it and it's probably a bit too drastic, but how else are we going to be heard. As far as sending our records from our new Dr's who have actually helped and found that our conditions are much worse than those Dr's who have dismissed us in the past, that's excatly what I intend to do. If we would have simply given up and listened to those other Dr's we could be in much worse shape, and they deserve to know that this is a serious condition that should not be ignored. I have a long list of Dr's who will be getting my letters, including multiple cardiologists, NS's and especially the NL I saw over ten years ago who negleted to tell me that the MRI he had done stated I had CM (6mm) back then.
. I have now been told my herniation is 10mm, I have a herniated disc in my neck, little to no CSF in my brain, POTS, and possibly a tethered cord. But all these years I have had several tests run, too many specialists to count, and thousands of dollars in medical bills and to think it could have all been av
I know what you are talking about... let me share my experience:
I arrived at an ER with my teen daughter and our neurosurgeon on a Saturday evening. Our neurosurgeon had operating privileges at this hospital.
Our neurosurgeon stayed in the ER with us until 1 AM, read her CT scans in person while she was having them, and spoke to the ER doc on our behalf....informing the ER dr that my teen daughter was scheduled for brain surgery in the immediate future.
Our Neurosurgeon asked the ER doc to admit my daughter. ER doc refused.
I overheard the conversation and it went like this....
ER Dr.: "I'm not admitting a teen girl who is complaining of a headache during her period, for any reason."
Our Neurosurgeon: "She has Chiari malformation and her CT scan showed some slight brain swelling...while the scan appears within normal limits for most people, I am familiar with her brain scans and her brain is currently swollen based in comparison with her past scans. She is clearly in serious pain. Will you please admit her overnight for observation while I move her surgery sooner?"
ER Dr.: "No."
I guess I am sharing this to show you that, no matter what you do, some ER doctors will not listen. Not even if your neurosurgeonis with you in the ER when he is not working. So it's not you....it's them.
I'm speechless! I can't believe an ER Dr. would ignore a NS like that. It's appauling how these Dr's treat patients especially in your case. I truly hope everything got worked out and your daughter is ok. Just goes to show that there is not enough education and awareness amongst ER Dr's about this condition and that needs to change. My husband works with a lady that used to work at the hospital I went to and she gave him some names and numbers of people to call and file a formal complaint with the hospital, which is what we did today. They have assured us that there will be a full investigation into my case and the manner in which it was handled and perharps nothing will come of it, but maybe they will insist there ER Dr's take cases like ours more seriously in the future. Thank you for sharing your story and I wish you and your daughter the very best:) mominmaryland said:
I know what you are talking about... let me share my experience:
I arrived at an ER with my teen daughter and our neurosurgeon on a Saturday evening. Our neurosurgeon had operating privileges at this hospital.
Our neurosurgeon stayed in the ER with us until 1 AM, read her CT scans in person while she was having them, and spoke to the ER doc on our behalf....informing the ER dr that my teen daughter was scheduled for brain surgery in the immediate future.
Our Neurosurgeon asked the ER doc to admit my daughter. ER doc refused.
I overheard the conversation and it went like this....
ER Dr.: "I'm not admitting a teen girl who is complaining of a headache during her period, for any reason."
Our Neurosurgeon: "She has Chiari malformation and her CT scan showed some slight brain swelling...while the scan appears within normal limits for most people, I am familiar with her brain scans and her brain is currently swollen based in comparison with her past scans. She is clearly in serious pain. Will you please admit her overnight for observation while I move her surgery sooner?"
ER Dr.: "No."
I guess I am sharing this to show you that, no matter what you do, some ER doctors will not listen. Not even if your neurosurgeonis with you in the ER when he is not working. So it's not you....it's them.