Hello everyone. I just need to vent. Little info on my current situation...I have a 10mm herniation and NS is concerned I also have a tethered spinal cord and im scheduled to have a thorasic and lumbar spine MRI next week, but 4 days ago my back pain took a turn for the worse. I can't get comfortable sitting, standing or walking and my numbness and tingling/pain in my arms have gotten much worse and my legs are tingly weak and very heavy. I haven't slept in 3nights and this morning when I tried to stand up, I nearly collapsed and walking was near impossible without help. So in my desperation i thought i should go to the ER and have them check my back and hopefully do the MRI to see how bad it was. When I got there my hr was 165bpm, blood pressure was 148/51 and I was running a low grade fever. They ran an ekg due to the palpitations and chest pain and got me in pretty quickly. When the Dr came in I informed him of my CM and gave them the report from my NS, and told him that she's concerned about tethered cord. He lokked at me like I was crazy. They gave me some iv pain meds, which hardly put a dent in my pain. Then when he came back in he told me my blood work all looked fine except for low potassium, and said that he was sending me home and i was fine, that I was simply experiencing back pain and spasms. I was shocked, I asked if they were going to do the MRI or at the very least an xray and he told me no. He said my condition was not an emergency and there was nothing they could do. I asked him how my legs being weak and heavy and my arms tingling and painful were not considered serious when there is a good possibikity I have a tethered cord, he had no response! I left in as much pain as i came in with and no answers whatsoever as to why i've become so much worse. I'm speechless to say the least, I don't know what I'm supposed to do. I guess I will continue to suffer and hope I will be able to walk tomorrow. I'm sorry for venting, but I don't know how to get help when we can't get to our other doctors. How does anyone get ER Dr's to take them serious? Maybe I'm just being paranoid, and maybe it really isn't serious to feel this way. Thanks for letting me get this off my chest.
Kristi,
I am so sorry you had such a negative ER experience. We have all had them & it's disgraceful. Please know you can always vent here. We truly understand. Especially this subject. I even keep an emergency bag of medication I take to keep from going to the ER because my regular Dr's know it's useless, stressful, and a waste of time. I am positive it's a lack of knowledge issue on the ER Dr's part but they could still treat us like human beings. I always ask the nurse and ER Dr as soon as possible if they know anything about Chiari Malformations and related disorders,so we have a starting place. I usually go to the ER when I cannot get rid of headaches I have had for days or even weeks and months. I have put off going to the ER for days now just because I can't stand the thought of going through the whole circus again. I haven't even been on the Forum that much because my headache is so bad lately. Please know you aren't alone.
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.
Exactly the same as what I experienced, even the neurosurgery doctors. Don’t give up. There are always a pair of ears here to listen to you 
I have had the same experience. It really sucks and I am so sorry that you had to experience it. It happened to me three times before I even knew I had chiari. I asked the er docs if it was normal to lose feeling, sight and all coordination for a few weeks and they said yes! I ultimately gave up and just told myself it must all be in my head. Please vent as much as you like. We have all been through it and understand the frustration and desperation.
Go back when you know there has been a shift change . I had to do this years ago with my daughter , I knew in my gut there was something wrong with her, it was a rely long story but short version was one dr ( our gp sent her to hospital to be admitted ), dr at hospital in emergency said my dr over reacted and sent her home refused to admit her even though her blood work was not good, I argued with him we left, I called back at 11:30 pm asked if that dr was done his shift , went back to emergency , got different dr who rushed her by ambulance to a bigger hospital, where she spent the next 3 days . Be persists you know your body. Sorry this has happened to you , hope you get some answers soon.
Go again but a different hospital like CVEVELAND CLINIC
I went through a similar experience with my son and trying to get doctors to do something for him. They also thought he might have a tethered spine. When they did the MRI they found that he had a syrinx on his lumbar -then after the first decompression surgery it moved to his thoracic. After the second surgery it has disappeared! He was experiencing the pain and numbness and tingling. He couldn't walk without falling over all the time + a million other nasty things that plagued him daily. Let us know what you find out. I am sure you will feel much better after surgery. I know your situation feels grim at the moment but just think positively about how much better you'll feel in the future. My son is dong so much better, he's like a regular little boy now -a few side effects from brain surgery but could be much worse. I wish you much luck and peace and healing!
Tracy, thank you for your support and kind words. You are truly a pillar of strength. I am so sorry you are having such a hard time with your headaches. I can't possibly imagine what you're going through. I have been having this back pain for quite a long time, but it got to the point where the medication i had at home were no longer effective. I know there is a bigger problem going on here, we know our bodies. It takes alot for me to even set foot inside an ER because of all the bad experiences i've had over the years. I have an amazing NS, but she's 2 hrs away from me and I was in too much pain to make the trip. Thank you for your support and listening to me vent. I will send prayers for you to find some relief soon. :)
TracyZ said:
Kristi,
I am so sorry you had such a negative ER experience. We have all had them & it's disgraceful. Please know you can always vent here. We truly understand. Especially this subject. I even keep an emergency bag of medication I take to keep from going to the ER because my regular Dr's know it's useless, stressful, and a waste of time. I am positive it's a lack of knowledge issue on the ER Dr's part but they could still treat us like human beings. I always ask the nurse and ER Dr as soon as possible if they know anything about Chiari Malformations and related disorders,so we have a starting place. I usually go to the ER when I cannot get rid of headaches I have had for days or even weeks and months. I have put off going to the ER for days now just because I can't stand the thought of going through the whole circus again. I haven't even been on the Forum that much because my headache is so bad lately. Please know you aren't alone.
Thank you Toni. I'm glad to hear your son is doing better now. I know that I will get answers soon, but unfortunately I can't afford the surgery right now so I'm just praying this doesn't get much worse in the meantime. It's a scary feeling when I can't get any relief from the pain and at 37yrs old I'm having difficulty walking without help. I used to be a very active person, I used to wkaeboard, snow ski, play tennis and play ball with my kids, and now i can barely get off the couch. Thanks for listening to me vent. :)
Toni said:
I went through a similar experience with my son and trying to get doctors to do something for him. They also thought he might have a tethered spine. When they did the MRI they found that he had a syrinx on his lumbar -then after the first decompression surgery it moved to his thoracic. After the second surgery it has disappeared! He was experiencing the pain and numbness and tingling. He couldn't walk without falling over all the time + a million other nasty things that plagued him daily. Let us know what you find out. I am sure you will feel much better after surgery. I know your situation feels grim at the moment but just think positively about how much better you'll feel in the future. My son is dong so much better, he's like a regular little boy now -a few side effects from brain surgery but could be much worse. I wish you much luck and peace and healing!
I hear ya...I don't even go to the ER because I used to work as a RN in ER's for 10 years up until a few years ago when I became diabled. I can tell you from working in ER's that the reason they won't do a MRI of your spine is that they are not considered 'emergency' testing unless there is thought that there is trauma to the spine etc. And yes, I know how you feel...Pain is the number one reason people visit the ER and unfortunately the only thing the ER is going to do is give you some short term pain relief (or not...as in your situation). If you have an ongoing, chronic problem and are being seen by a doctor for it, the ER usually won't do anything for you. Especially if you are coming for pain medicine...because, as I've learned from working with several ER doctors, they all assume that since you have chronic pain, that you are only there looking for drugs. It is unfortunate and it IS a disgrace. But, unfortunately, from working in the ER, there are several people who are only there for drugs and it has made it so much harder for those who truly need pain relief, to get it. As a nurse, I've always tried to help patients to the best of my ability...which includes talking doctors into giving my patients something for pain. It's crazy...there are SOME compassionate doctors out there...but very few. I've seen many nurses act the same way and it makes me sad/mad. I will pray for you to get relief. I, myself, have been trying for 3 years to get some kind of relief and have not had any luck. Good luck and God bless you!
It's funny you say that because the Dr. i had last night wrote me for a stronger prescription than the one I had at home along with some valium to hopefully relax my back, and when I went to the pharmacy to get them filled, they said I already had pain medication and they were going to call the ER dr to confirm that he knew about the prescription i already had, which he did. When the pharmacy called the hospital, my Dr had already left and the new Dr told the pharmacy to void the new script, that I did not need stronger meds! So we went back to the hospital to complain and the new Dr said I had to deal with what I already had, even though it doesn't work, and told me to take 2 at a time instead of one. Really, it's 750 Norco and you want me to double that, no thank you, thats too much i dont have a death wish. lol. Originally they were going to keep me over night with iv meds or i could go home with stronger meds, that backfired real fast. When my husband told the new Dr. fine then admit her and give her the iv meds, the Dr got very angry and said absolutetly not there is nothing wrong with her! What it boils down to is that the new Dr was under the impression I was a drug seeker. It just really upsets me, when all I wanted was for them to run some tests on my back to find out why its so much worse. Needless to say my husband is calling the patient advocate for the hospital today and filing a formal complaint for them not treating me and insinuating i was a drug seeker. Thank you for your support, and I'll let you all know what comes of this. Take care and best wishes for your son:)
Brooke's Mom said:
Go back when you know there has been a shift change . I had to do this years ago with my daughter , I knew in my gut there was something wrong with her, it was a rely long story but short version was one dr ( our gp sent her to hospital to be admitted ), dr at hospital in emergency said my dr over reacted and sent her home refused to admit her even though her blood work was not good, I argued with him we left, I called back at 11:30 pm asked if that dr was done his shift , went back to emergency , got different dr who rushed her by ambulance to a bigger hospital, where she spent the next 3 days . Be persists you know your body. Sorry this has happened to you , hope you get some answers soon.
Dorothy, I know the feeling. I spent years in and out of ER's and multiple specialists with no answers. These Dr's just dont get it. I'm not sure where they det their diplomas(out of a cracker jack box, lol). This is why we all need to speak up and push for more awareness so those of us who suffer with this terrible condition don't have to continue to suffer. We just have to keep fighting until we can get someone to listen, but it's such a blow to have to go thru these experiences. Take care and thank you for sharing your story. :)
Dorothy said:
I have had the same experience. It really sucks and I am so sorry that you had to experience it. It happened to me three times before I even knew I had chiari. I asked the er docs if it was normal to lose feeling, sight and all coordination for a few weeks and they said yes! I ultimately gave up and just told myself it must all be in my head. Please vent as much as you like. We have all been through it and understand the frustration and desperation.
Jackie- Thank you, and I'm sorry you have had the same experiences. I hope you have found a good NS. I have an amazing and very talented NS, but she is two hrs away from me which is why I went to a local hospital hoping they would help. Next time, I'll just have to make the trip to her hospital because they have an amazing Neuroscience center there and they know what they are doing. Take care and hope you can get the help you deserve:)
Jackie said:
Exactly the same as what I experienced, even the neurosurgery doctors. Don't give up. There are always a pair of ears here to listen to you :)
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.
Thank you Mamamari. It's an unfortunate reality especially thes days that they look at us as if we're just there for the drugs. All these drugies have ruined it for those of us with actual serious conditions. Sad but true. I've been in the ER before and heard patients asking for specific drugs, dosages, etc. Seems like they would be able to figure out who's seeking from those who have actual problems. I told the Dr. last night repeatedly that i wanted them to look at my back, do an xray at the very least. You are right he told me that i wasnt an emergency and they could not justify any testing. Even though I gave him a copy of the report listing the severity of my condition, along with an order for a MRI from my NS, and that didn't make any difference. I told him i wasnt there to be druged up and sent home, i was there to have my back examined. They still treated me like a seeker. It's just too frustrating, i was in tears when i left. I would have gone to my NS's hospital because they have an amazing Neuroscience center there, but it's two hrs away from me. Next time I'll just make the trip. What really scares me is if I'm ever in an accident, will they know how to treat me or will they just treat me like I'm crazy and let me die? After this I'm going to have a new medical bracelet stating I'm to be transported to Beaumont hospital only in case of an accident. Best of luck to you, I hope you are able to find a Dr. who can help you. :)
mamamari said:
I hear ya...I don't even go to the ER because I used to work as a RN in ER's for 10 years up until a few years ago when I became diabled. I can tell you from working in ER's that the reason they won't do a MRI of your spine is that they are not considered 'emergency' testing unless there is thought that there is trauma to the spine etc. And yes, I know how you feel...Pain is the number one reason people visit the ER and unfortunately the only thing the ER is going to do is give you some short term pain relief (or not...as in your situation). If you have an ongoing, chronic problem and are being seen by a doctor for it, the ER usually won't do anything for you. Especially if you are coming for pain medicine...because, as I've learned from working with several ER doctors, they all assume that since you have chronic pain, that you are only there looking for drugs. It is unfortunate and it IS a disgrace. But, unfortunately, from working in the ER, there are several people who are only there for drugs and it has made it so much harder for those who truly need pain relief, to get it. As a nurse, I've always tried to help patients to the best of my ability...which includes talking doctors into giving my patients something for pain. It's crazy...there are SOME compassionate doctors out there...but very few. I've seen many nurses act the same way and it makes me sad/mad. I will pray for you to get relief. I, myself, have been trying for 3 years to get some kind of relief and have not had any luck. Good luck and God bless you!
My.daughter.suffers.from.cm1 and.related.disorders. My.heart.goes out to all! ER is.useless. The only ER that.can help is im long.island and.a.distance.from us. The only.thing an ER.dr can do.is.shoot.her.up with.morphine and.take an MRI.ct.scan.and.tell.us.shes fine. .Sad.but.true
then send.her.on her way. We.found.a.new NS that.we.like.who.is.very.knowlegeable and compassionate. Wish everyone the best!
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.
So sorry to hear - I went to the ER because at night I have terrible episodes of not being able to breathe and they have now moved to day time choking episodes, very freaky. I went to the ER , as soon as I told them about the CM and that my Neuro wanted to do surgery , they told me I have GERD and basically offered me any drugs I wanted and sent me home. Since we were in the ER over 5 hours and we were tired my husband and I didnt read the discharge papers until the next day. They did not state anything about breathing, they said I was in ER due to headaches. Boy I learned a huge lesson, I should not have signed those release until they changed them, if something was to happen they would totaly off the hook. But they sure collected their ER fee quickly. I have a auto immune problem so sadly I have had many a bad experience in the ER, makes me not want to ever go. Vent anytime you need to , maybe we can all help each other be heard
That's so true. It's a sad fact. They released me last night with a paper that said back pain. Even though they knew about the CM and possible tethered cord. Honestly, I think they are to afraid to treat us, because they don't know how. I had a similar experience one time, I had surgery and was sent home, that night my throat closed up and I could hardly breath. My husband called the hospital back and they sent an ambulance to pick me up and bring me back, they got me breathing and fixed the problem, but later when I looked at my paperwork they wrote me up as "sore throat"! And because of that, my insurance company refused to pay for the ambulance or the hospital stating it was not an emergency. I feel your pain, we need to make sure to closely look at the papers and make them do their jobs. My husband is going to the patient advocate at the hospital I went to last night and filing a complaint. Don't know what good it will do, but we can't just let these things go. Best of luck to you:-)
KB said:
So sorry to hear - I went to the ER because at night I have terrible episodes of not being able to breathe and they have now moved to day time choking episodes, very freaky. I went to the ER , as soon as I told them about the CM and that my Neuro wanted to do surgery , they told me I have GERD and basically offered me any drugs I wanted and sent me home. Since we were in the ER over 5 hours and we were tired my husband and I didnt read the discharge papers until the next day. They did not state anything about breathing, they said I was in ER due to headaches. Boy I learned a huge lesson, I should not have signed those release until they changed them, if something was to happen they would totaly off the hook. But they sure collected their ER fee quickly. I have a auto immune problem so sadly I have had many a bad experience in the ER, makes me not want to ever go. Vent anytime you need to , maybe we can all help each other be heard