I am a mother / wife with chronic pain and I am getting to the end of my rope. The guilt I feel is overwhelming. I have spent so much money trying to find the answer to my pain problem. I have had a lumbar fusion years ago and have lived with chronic pain for over 20 years. Recently I paid for an MRI on my neck because I was loosing feeling in my hands and arms at night. It showed I had Chiari Malformation which means my cerebellum is 4mm into my spinal column. I have learned a lot about it but I am getting discouraged. There is a whole community of sufferers out there. The problem is the doctor I am seeing for a follow up believes that all chiari's are asymptomatic and he just thinks I am weak and dependent on pain medication. I try my best. It is so hard to fight the pain all day. I am exhausted and embarrassed. What do you do with a doctor that thinks your a flake?
Hello findingpeacewithpain. You are in a very difficult situation. Have you gone to a neuro surgeon for an opinion on this? Chiari Malformation needs to be dealt with. Neuro drs deal with the nerves so I would be going that direction. Nerve impingment can be a cause of what you are saying here. They can do an EMG to determine nerve conduction. You may need to stand strong for your own treatment here. You really need to choose a different Dr for your healthcare. If the dr thinks you are a flake can you really have any kind of trust in their decisions for your healthcare? I am not trying to tell you what you need to do for you, just input here ok. You have to stand up for yourself or you will continue to get to the end of your rope. (We have to keep handing each other more rope to hold on to until someone can put a knot in the end of it for us. You keep hanging in here ok) I sure hope this can help a little. You please have a better day. You are not alone. Trans.
If your doctor doesn't listen, we do have to stand up and find one that does and that truly helps us. If you need narcotic pain medications to function and have any quality of life, that doesn't mean you are an addict. It only means your pain is so bad that you are dependent. I have suffered from a different chronic pain disease of the nerves for 11yrs now and there is no cure for RSD aka CRPS. Most of the current surgical treatments are very invasive and not for me. I am dependent on pain meds but have remained on the same med and same dose for almost 9 of 11yrs. We can be treated better, more fairly, and with respect when we find the right doctor. I agree that you need the type of doctor that transcriber mentioned; a neuro surgeon or neurologist. That way you can get the tests you need done that could make a difference in your treatment plan. My prayers are with you. I know what it feels like to have chronic pain and with the right treatment and doctors have learned how to cope and live with it.
Hello findingpeace. I am sorry for your pain. Your statement about the guilt resonated with me since I also felt guilty for being in pain and needing pain medication. I had to fight to be listened to and get some answers. I was fortunate to have my primary care doctor on my side so I am doing better now. When my doctor didn't listen to me, I changed doctors. I know how exhausting depressing maddening it is to deal with the ravages of apin all day, every day. I hope you get the care you deserve and let go of the guilt, you have done nothing wrong.
FindingPeace I just wanted you to know that there are many of us out here that can relate. I am a wife/mother as well that deals with chronic pain. The guilt I feel everday is sometimes worse than the pain! I have two small children and can not do many things for them that I would like to do. I can not even pick them up. I read your message and was worried for you and how bad it seems right now, I hope you are just going through a rough patch with your guilt and this will get better. I go through the same thing. In addition I wanted to say I don't know a single pain sufferer that is weak, we are a bunch of tough cookies, you hang in there. I don't like to depend on the pain medicine to make the pain tolerable either but that is something I guess I have come to terms with after 30 years. I have to have another surgery next week and I even feel guilty about that, having to ask the same wonderful people in my life to go through it agian with me! As for your doctor, I know it's easy for me to say but you need to find a new one! One that will listen to you and cares, they are out there. God Bless you and don't give up hope. Nicole
Thanks so much for your reply. I have seen a neuro and he wa not willing to see my symptoms as a result of having the Chiari....instead he said all the symptoms that I deal with such as difficulty swallowing, dizzyness, headaches, tinnitus, tingling hands and feet ect. as side effects of the medication I am taking. I have been on Oxycodone for 2 years now. I don't like it but I can't function without it. He said I needed to get off the drugs so I could then find out if the symptoms will go away. Easy for him to say. He obviously has never been on his hands and knees wishing God would take you into his arms and make it go away. Sorry about the dramatics but it can get that bad. To think that I am doing something that is causing all this craziness is hurtful. I guess I am a little sensitive to his judgements. How can he sit there and say everything looks fine to him. isn't he listening to anything?
The neuro doc is done with me now. I saw him for the last time. He said there is nothing he can do for me. My GP wouldn't le tme get a second opinion until he was finished with his report. Now I am free to get looked at again. I am actually going to a private pain doc in Nroth Vancouver tomorrow with my dad. This is 650$ for a consult (adding to the guilt). He is from the States and appartently has had some great success with chronic pain patients. My dad wants me to try getting laser spine surgery in Arizona. IT worked for a friend of his but it is 30 000$! I already tried spinal decompression for 5000. Wow, I guess you all understand how desperate one can get to be pain free. It does feel comforting to know other people feel pain everyday. I wouldn't wish it on my worst enemy but it feels better knowing I am not alone. I have hope with seeing this new doctor. He can look into my Chiari or refer me to the Chiari institute in New York if he feels he can't help me. I mostly want him to look at my low back pain and hip pain. Since I had a fusion 20 years ago I haven't been pain free. It is just getting worse. I really want a treatment plan that involves looking at the drugs I take and assess if they are the right ones. My GP just gives them to me to shut me up. I go into his office with pen circling stabbing pain areas and X's for the shooting pain and lines down my legs to show him where it runs down to my feet. ARghhh he must think I am just crazy.Anyway, I leave feeling no better but able to numb the pain for another month. This is not helpful. I am going to share more with all of you about my body and all the congenital stuff that I have gone through over the years. There is just so much and I dont' want to overwhelm you kind people.
Thanks, I know there has to be someone out there who will take me seriously. I hid the pain for years so as not to upset the people that loved me. I haven't been able to do that for the last year and now I feel just so vulnerable. I get thinking about how other people must think of me and I wish I could just run away. I have had 15 operation for a lot of different things. I have always bounced back and moved on but I just can't anymore. I hope the private pain doc can help....the public pain clinic will take up to ayear to get in. The MRI doesn't lie you are right. I am just frustrated as to why he thinks my Chiari is asymptomatic when I have had to go on medical leave from my job (I am a teacher) and how I can't even be alone with my kids (when things are really bad). I get so weak in my limbs that it is unsafe with a 2yr old and a 5 yr old running around. My husband and I adopted them at birth (when I was feeling a lot better). Now I feel like such a failure. They are both open adoptions and I am feeling like I am not being the greatest mom-even though I am trying my best. so, thanks fo our reply and yes I think it is time I get a new doctor. The problem is I have so many speicalists that they just don't communicate ith each other. I am thinking of going to a medical genetics specialist as I have 5 different systems with congenital abnormalities. I will fillyou in later. Thanks for taking the time. I feel better but a little embarassed. Have a great day.
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.
Hello findingpeacewithpain. I hope you are going to get some better news tomorrow when you go to the new Dr. Some of the type I chiari malformation is asymtomatic but that does not mean they all are. Also someone can be asymptomatic as a child but symptoms show up more as an adult. I don't think the neuro you went to has a very good outlook for your problem. You do need some relief for what you are going thru. You are not a failure because you are having these problems. Type I as you know is the only one that can be aquired so give yourself a big break from what others project on to you. You said you have 5 different systems with congenital abnormalities, then you just came this way and it's no one's fault. You came the way you were ment to be and now it's up to you to get the help you need. I am betting the two children you adopted are very glad to have you for their mom. Not everyone is willing to adopt a child, let alone two. That takes a strong person my friend. I hear you, I would be very upset also if the dr was telling me I was doing something to create my own craziness. You know as a professional that answer is just a pass off. They didn't even need to collect your money for all the help they gave. I really hope you Dr visit tomorrow goes so much better for you. Enjoy your family today. Please let us know how it goes for you. You hang in there ok. Trans.
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.
Hello findingpeacewithpain and I hope your dr visit is very good today. I know what you're saying, it is a kind of peace here. We speak in a language people that don't have these problems try to talk us out of or they don't understand what we are trying to say. So many times my spouse tries to FIX my problems and can't so that stops all communication about what's happening now. I understand their frustration but I know mine also and on this board other people know where I'm coming from. I am glad you are here and I hope you can get some words of comfort for what you are going thru. I worked for a neuro surgeon that did surgery for a chiari malformation because the patient was having severe problems. It was wonderful to see their face when they went home. Neuro to me has so many miracles. ( not all the answers but still better than before for so many people). I think a lot of us get prickly when we aren't coping well. It is difficult trying to live a different life with all this pain. This is not what we had planned for ourselves. I like your response "I am suppose to learn something through all of this", that's exactly how I feel. God has given me this road to learn something I have to learn here. We try to put on that happy face for other people so they don't feel so uncomfortable, you aren't being a fake. You are doing well. The best you can do is the best you can do. When we have these issues it's good to have each other to talk to. You keep hanging in there my friend and let us know how it went for you. I'm glad you're here. Trans.
Some years ago, I read several articles about Chiari malformation surgery and its affects on widespread pain. I have FMS, and the pain seems to be somewhat similar in distribution.
I read that you needed a special MRI to diagnose this properly, it is not the same kind of MRI that they do of your neck to check for problems with discs for instance. I have DDD of the cervical spine so I have had lots of those. It is a slightly different view. Have you already had that? Perhaps you could arrange to send the films or digital disc to a specialist in NY at the Chiari clinic there. They could look at them and tell you if you require additional care.
Or perhaps you could have a neuro-radiologist there in Vancouver take a look at your films? They are great specialists, my husband took his MRI/CT scans to one here in Portland, OR when he had a subdural hematoma. They are specially trained radiologists that only look at films of the nervous system.
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