Yes the MRI I had showed my cerebellum is 5 mm into my spinal column but you are right there is another MRI they do if your symptoms are unbearable and there isn't a sign of it on a regular MRI. I just know that there is something with this tethered cord for me. I won't rush into anything and I am still reading and researching but it is amazing how I fit everything . I can live with the brain thing until the symptoms get worse but the low back pain I can't. Once they open me up they are going to find something....maybe just a virus eating away at my muscle from the inside out. Sometimes it feels like my legs are soaking in battery acid. I can't make it stop. I am so tight. I am starting to isolate myself again....I hate it when I can;t cope cause I push away the people that want to help. I just hate hearing myself talk about myself and everyone asks - how are you doing....awww - you poor thing. If I say fine and fake it then I am not being my authentic self. I know I have to just hang on for the ride but I am getting tired and lonely. Sorry for the dramatics again....it just feels good to get it out and although I am crying right now I should feel better having let it go. I hope you are well. I never even asked last time.sorryView Thread
Thanks for the info on chiari, Yes I contacted The Chiari Institute and the are going to take a look at my MRI's. I filled out the application but I am waiting for the pain doc in Vancouver to give me back my films. He said he couldn't help me but that he was going to give his neurosurgeon friends a call. I have researched a bit more and it really seems to me that I have a tethered spinal cord. They are finding new research about chiari type 1 patients that suffer from low back pain / bladder,bowel problems etc.... This is at least some hope for finding someone to give me some releif. The money however I am spending chasing this pain is getting crazy. I am going crazy with pain the last few days. The physio is not helping anymore. Everywhere I go there I am.....I can't get a way from the aching legs. I guess Ihave to take more medicine. I dont' want to . This is why I am off work right now. I can't cope and keep my personal life together. My husband doesn't understand and treats me like I have the plague. I am so mad but why then do I just cry?View Thread
Hi Caprice. I am so sorry that my post had to be removed. I don't know why at all. My email did not have an entry in it. Did I do something wrong. I thought we weren't supposed to enter DR.'s names.......I din't remember doing that. Again, I am sorry if I did anything wrong. I just started to engage with people suffering like me and I can't believe how much it has helped. I would be really sad if I got kicked off! I will read again the terms of the discussion board and hope that I can learn what happened. Take CARE, I apologize for messing up. LisaView Thread
Thanks for that. I need a new doctor. I paid to see a private pain doctor 690$ for 1 1/2 hours. He basically starting telling me that pain cases like mine rarely get resolved because I have such generalized pain and it has gone on for so long. He said he wouldn't waste his money but that he would start doing injections to rule some things out. He said "what will happen is that you will say I have a little less pain here but it still hurts here and we will go on like that for months even years. You should go to a a pain clinic". ARGGHHHH......Then I asked him if he had heard of the Tethered Cord syndrome that goes along with the Chiari Malformations. I described how I was having large bladder problems and they started when the pain began to get worse. He perked up and started to be interested. I don't know if it is true, but he said he was going to talk to a few neuro friends of his and take my "complicated" case to them and ask about TCS. Whew. I could have saved the 690$ and gone to The Chiari Institute in New York. Oh well live and learn. I am still trying. your name lostallhope really touch a cord with me cause I have been there. I don't know when you started chatting here (I am brand new) but does this name still describe you? LisaView Thread
Hello Annette. Yes I have sent my application down to the Chiari Institute but not my films yet. A private pain doc here in Van is looking at them. He was going to look into the idea of an occult tethered cord syndrome (TCS) for me. The diagnosis is a bit disputed in the neuro world. The regular MRI I have. You are right I would need a flip-flop MRI and/or a CINE MRI to sure of the TCS. The neurologist I saw in VAn said ALL chiari's are relatively asymptomatic and I am depressed thats why my back hurts. I am getting over that now but what a blow. Anyway, when I read about the TCS condition and relate it to myself and my symptoms throughout my whole life it is amazing the similarities. I wish it was a more simple diagnosis because I seem to be met with obstacles at every level. Trans54 is right when she says you have to be your own advocate and educate yourself. I don't expect the pain doc up here will have much success with his neurosergeon friends up here so when I get my films back I will send them to Chiari Ins. In New York right away. I don't have the money to fix this but luckily my dad and mom are willing to go with me to New York and pay for the consult. I am so blessed but the fact that I am 40 years old and I still worrying them like this breaks my heart. If it really is TCS due to the Chiari I hear I can have the operation and start feeling better really soon. MY two boys will be happy to hear that. I can return to work in Sept and become a contributing citizen and wife again. Yeah. Can you give me tips as to how to get a neuro radiologist to help me? How much is an MRI in USA? UP here it is 1000$. Thanks for your reply. It is comforting to draw strength from such an amazing group of people.View Thread
I wrote this long letter to him (I thought) can anyone tell me how to send it directly or tell him I need him to please read the last post about a tethered cord syndrome with a chiari malformation. I thought I sent it to him but it looks like it went to everyone. ARGHHHH I wish I knew how to do this..... Thanks.View Thread
you are so sweet and supportive. yes I will let you know how it goes tomorrow. I am cautiously optimistic. I really am a positive person but I must say this last while has been very trying. My boys and their birth families are happy that I am their mom - you are right about that. I know I haven't been the kind of wife I am very proud of but I have been trying to change that and it seems to be working. I get so prickly when I am not coping well. I am not able to work right now and I feel like I am throwing money away for what?I just feel like such a fake sometimes because I put on a happy face and I am dying inside. I am going to try and sleep now. I am so blessed I realize I am supposed to learn something through all of this. I am open to anything and trying to be really honest (to strangers) who knew! I really value what people on this discussion board say. I've been reading it for a few months and just started to actually write on this week. It feels like a sort of relief that I don't have to sensor or worry about people being hurt or upset by my words. Very freeing. Thank you. Good night - sleep tight and well.View Thread
I recently had an MRI that showed Low Lying Cerebral Tonsils. They are 4mm into the top of my spinal column. I had an MRI of my mid back to make sure there wasn't a Syrnix....a fluid filled sac in my spinal column. There was no Syrnix. Now what do I do? There is a whole communicty of people on Chiari One support group that share the struggles they have with doc's taking them seriously. I am one of them. I don't want to go private but I have to do something. Does anyone have any experience with this brain / pain problem. IF so , I would love to hear it. Thanks, LisaView Thread
Thanks Nicole. I think when I wrote the first message I was very hopeless. I can tell you that your relating to me helps me feel less like afreak. I know I am tough but I get so overwhelmed. I have slowly beendeteriorating over the past year. I think all the symptoms that go along with having a Chiari malformation describe me so well. I sent an application in to the Chiari Institute in Ny so they can hopefully give me some advise. I also am seeing a private pain doc here in Vancouver. From the outside I think I look so pathetic. I don't want or need all this attention - I only want a simpl life. I don't like the pity my family looks at me with. I just hav to keep trying t get to the bottm of this or do I? MaybeI do need to just be a tpeace with who I am and quit all this. I am reading a book call Why People Don't HEal and how They CAN by Caroline Myss., It is a very interesting read. Don't worry too much about me. I am not feeling as hopeless or as guilty today and that is just it.....all I can do is one day at a time.View Thread
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