Hello everyone. This is my first post. I'm going thru a very hard time. I have Chiari and there are things happening to me that I don't like and I cant control. I'm 55 and was diagnosed in 2013 with Chiari after a cervical spine injury I received in 1994. I have had several surgeries including a double fusion of my c5-6 6-7 disks. 2 TOS surgeries which were taking out my top left rib and taking out part of my scalene muscle in the back of my neck. I live with chronic pain and now this chiari malformation.It's getting worse every day. I'm so dizzy, my face is cold, my arms hurt so bad, my head is going to explode. I don't have any friends left, nobody wants to talk to me anymore because they don't know what to say to me. Even my wonderful husband does everything he can to stay away from me as much as he can. He is all I have to talk to and he just cant look at it and hear about it everyday anymore and I cant get away from it because its getting worse!!!! I just want to go to sleep and never wake up!!!!! I don't want to kill myself I just want to go to sleep and never wake up!!!!! How do you all deal with this? Please help me!!!
Cher, I am glad you are here, and glad you posted. It sounds like you are feeling some desperation. You are not alone, and we are listening. What docs have you seen for the pain, and what has been tried? It will help members know what suggestions to offer if we know what has already been done.
Cher I understand the sleep and never wake up more than you know, a lot of things have gone south with my condition. My PCP was a wise doc and figured out quickly I needed some help not only with pain management but some answers as to why things were so bad after years of "stasis" Well it turned out it wasn't my disease at all............ But what the made the biggest difference was knowing I was still in charge. A good pain management specialist can often help.
So if I was giving advice here, I'd say get the medical things answered. Is it the Chiari? Could it be a failure of your pain management system? Sometimes people who have chronic pain develop resistance to some of the meds.
I see a doctor at Swedish Neuroscience Specialists in Seattle Wa. this Thursday. It just really doesn't even mean anything to me. From what I understand from my other doctors is there really isn't much hope that a doctor is going to do the surgery on me. So that means I'm going to need to learn how to live with this on top of the chronic pain and I'm just not sure how to do that. I take the tizaidine (muscle relaxer) and hydrocodone for my pain. Oh how I hate the pill! Thank god for them tho because its the only relief I ever get from some of my pain and helps me get some rest.
dancermom said:
Cher, I am glad you are here, and glad you posted. It sounds like you are feeling some desperation. You are not alone, and we are listening. What docs have you seen for the pain, and what has been tried? It will help members know what suggestions to offer if we know what has already been done.
Thats a wonderful place! If the surgeons can't help you ask if Dr. Glen David is still there. He is singularly one of the best physiatrists neurological pain management Docs in the Northwest. If anyone can get your pain under control, he can. He has an incredible team. The Cleveland Clinic was really trying hard to get him back.
Cher said:
I see a doctor at Swedish Neuroscience Specialists in Seattle Wa. this Thursday. It just really doesn't even mean anything to me. From what I understand from my other doctors is there really isn't much hope that a doctor is going to do the surgery on me. So that means I'm going to need to learn how to live with this on top of the chronic pain and I'm just not sure how to do that. I take the tizaidine (muscle relaxer) and hydrocodone for my pain. Oh how I hate the pill! Thank god for them tho because its the only relief I ever get from some of my pain and helps me get some rest.
Cher,
Your story reminds me of me. I just wanted to tell you, you are not alone. I feel the same way as you do. If you do not have Chiari, you will never ever know how bad it is until you finally get your doctor to listen to you. You know something is wrong, and everyone around you think your just making it up. I know, for several years after my accident, (I had a whiplash from a fall on ice), the doctors I was seeing treated me with everything, gave me several wrong diagnosis. I have fatigue and my head feels like it will explode with pressure. I only was diagnosed this month. I have been reading everything I can on Chiari and trying to figure out what is the next step to take. I do not want to have surgery, my Neurologist told me that surgery would help me, but not cure me. If I am not cured, then why do I need to put myself through surgery? I have read some really scary stuff on some sites I have been on and am scared to death.
The medicine they put me on makes me feel like a freak, I can't think good and have worse problems now than before I took some of them.
IS there anything that we can take that will not make us feel so drugged. I work to support me and my 3 children. I am raising my kids by myself. Husband is out of the picture and it is a struggle to do my job. I have moved recently and it is hard finding any one to talk to.
What does other people do for pain besides taking the drugs they put you on? I cannot take a lot of the medication, I am trying to work and it makes me feel drugged.
So i was wondering what others do.
Cher, it is hard I know.
I wanted to ask too, if I may, if surgery is the answer.
I have read a lot of medical journals on chiari, and quite frankly, this is a malformation, a defect in the bottom of our skull and it seems to me that when they take out bone it could cause you more damage and make you worse. I don't know if it will help or not. I will have to do a lot of reading before I see a Neurosurgeon to make myself prepared for the office visit.
Thinking of you.
TJ1 said:
Thats a wonderful place! If the surgeons can't help you ask if Dr. Glen David is still there. He is singularly one of the best physiatrists neurological pain management Docs in the Northwest. If anyone can get your pain under control, he can. He has an incredible team. The Cleveland Clinic was really trying hard to get him back.
Cher said:I see a doctor at Swedish Neuroscience Specialists in Seattle Wa. this Thursday. It just really doesn't even mean anything to me. From what I understand from my other doctors is there really isn't much hope that a doctor is going to do the surgery on me. So that means I'm going to need to learn how to live with this on top of the chronic pain and I'm just not sure how to do that. I take the tizaidine (muscle relaxer) and hydrocodone for my pain. Oh how I hate the pill! Thank god for them tho because its the only relief I ever get from some of my pain and helps me get some rest.
Cher said:
I think it a great place too. This is a second opinion for the Chiari Malformation on Thursday.
TJ1 said:Thats a wonderful place! If the surgeons can't help you ask if Dr. Glen David is still there. He is singularly one of the best physiatrists neurological pain management Docs in the Northwest. If anyone can get your pain under control, he can. He has an incredible team. The Cleveland Clinic was really trying hard to get him back.
Cher said:I see a doctor at Swedish Neuroscience Specialists in Seattle Wa. this Thursday. It just really doesn't even mean anything to me. From what I understand from my other doctors is there really isn't much hope that a doctor is going to do the surgery on me. So that means I'm going to need to learn how to live with this on top of the chronic pain and I'm just not sure how to do that. I take the tizaidine (muscle relaxer) and hydrocodone for my pain. Oh how I hate the pill! Thank god for them tho because its the only relief I ever get from some of my pain and helps me get some rest.
I know how you feel. I too am new to this group. I have two graduate degrees and was a Principal. I was diagnosed at 38 years old when my youngest was a year and half. My symptoms hit me hard as if a grand piano was dropped on me. My headaches began in April and I was sent for an MRI in May. In August I had a consultation at the University of California, San Francisco and was admitted immediately for surgery because by then I had to sleep sitting up because I was having trouble breathing laying down. I had a decompression, duraplasty, and laminectomy. Everyone I knew began treating me different as if I was about to die. Some people couldn't even look me in the eye, including my primary physician. I could not go anywhere without people treating me as if I had a death sentence. At times I feel like I'm a burden on my husband and wish I was gone, but then I read about all these people that are going through the same thing and it gives me hope.
I completely know the feeling of loosing people that I thought were my friends. It felt as if I lived on a deserted island. This is truly an invisible debilitating illness. The good thing is that you are getting in contact with others through this forum. You are not alone.
Hi Anne
I feel very sad for you having to raise children and work with something like this. I'm having a hard time taking care of myself. You never know how strong you are until your forced to be do you. I sure haven't had any luck with a medication that doesn't make me drugged up. I do have a pain doctor and have had one for 7 years. He has wanted to increase my meds. and adjust this and that and I won't let him. I hate being drugged up but I couldn't go without what I have either. I think the small doses of muscle relaxers help me more than anything. I'm always so tense and scared waiting for the next headache to come and it really helps calm me down. Right now I sure don't have any answers for anyone. You and I can maybe start helping each other get thru this together along with many others. I sure need help staying strong!!!
Anne said:
Cher,
Your story reminds me of me. I just wanted to tell you, you are not alone. I feel the same way as you do. If you do not have Chiari, you will never ever know how bad it is until you finally get your doctor to listen to you. You know something is wrong, and everyone around you think your just making it up. I know, for several years after my accident, (I had a whiplash from a fall on ice), the doctors I was seeing treated me with everything, gave me several wrong diagnosis. I have fatigue and my head feels like it will explode with pressure. I only was diagnosed this month. I have been reading everything I can on Chiari and trying to figure out what is the next step to take. I do not want to have surgery, my Neurologist told me that surgery would help me, but not cure me. If I am not cured, then why do I need to put myself through surgery? I have read some really scary stuff on some sites I have been on and am scared to death.
The medicine they put me on makes me feel like a freak, I can't think good and have worse problems now than before I took some of them.
IS there anything that we can take that will not make us feel so drugged. I work to support me and my 3 children. I am raising my kids by myself. Husband is out of the picture and it is a struggle to do my job. I have moved recently and it is hard finding any one to talk to.
What does other people do for pain besides taking the drugs they put you on? I cannot take a lot of the medication, I am trying to work and it makes me feel drugged.
So i was wondering what others do.
Cher, it is hard I know.
I wanted to ask too, if I may, if surgery is the answer.
I have read a lot of medical journals on chiari, and quite frankly, this is a malformation, a defect in the bottom of our skull and it seems to me that when they take out bone it could cause you more damage and make you worse. I don't know if it will help or not. I will have to do a lot of reading before I see a Neurosurgeon to make myself prepared for the office visit.
Thinking of you.
Anne,
From everything that I have read, the surgery is only to prevent further progression. I had the surgery because I had a synrix from c2 to c6 and it was gagging me. My some of my toes and the top of my feet are numb, and my fingers are numb. I fall a lot and cut myself without knowing. I could walk around bleeding without feeling it. That's why surgery was a must for me.
I still have those symptoms plus new ones. I worked hard as a single parent of two boys to obtain my career and now feel like a part of me died. I'm severely depressed. I remarried a few years prior to having my illness diagnosed. He literally didn't know what he was getting into.
I feel for you and know what it's like to be on your own with children, but not with the full blown chiari. Everyone is different, I was sent to a pain specialist and experimented with about 11 different medications. The only one that has helped me is gabapentin 1800mg.
You will be in my prayers.
Thank you everyone. Cher, I would love to be connected with you. I work a lot and my parents are helping me with them. We live in a little house on their property. If I did not have them, I do not know what I would do. They have taken us in and helped me so much with my children.
I will try to figure out how to get you messages, we will write to each other Cher. Thank you. I know it is hard on all of us and all of us are very different. I am in the process of reading Conquer Chiari and know that living with this illness is very hard. I had suffered with headaches all my life, just thought it was from a bad marriage. I uprooted my kids and moved back home, we lived in northern Georgia, and it was hard, but I am peaceful now with that decision. Good husbands are hard to find when it comes to this disorder. Good friends are too.
Retiredat, thank you too for your note, it make me feel better to hear your story and know, I am not the only one who is doing this. Your note was very inspiring.
My biggest fear is if something happens to me, my parents are getting along in years and are not in the best of health themselves, so it makes the decision hard. You know?
I guess I just want to know if there is anything else I can do? I really do not want surgery, if you have suggestions, please let me know.
aww I go though the same thing I take a lot of meds and they don't work so im in pain everyday to and its very depression and I don't believe in depression meds some times I feel like that to or I don't eat for days I was born with it because my mother did drugs when she was pregnant with me and she passed away in 85 and im 38 now I really miss her and my dad died in 87 its very sad for me living with out any parents and with chairi malformation 1 by myself have brothers and sister they don't care about me I called them but they dont care so im your friend ok u can email me ok and your not alone im with you.
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aww I go though the same thing I take a lot of meds and they don't work so im in pain everyday to and its very depression and I don't believe in depression meds some times I feel like that to or I don't eat for days I was born with it because my mother did drugs when she was pregnant with me and she passed away in 85 and in 38 now I realy miss her and my dad died in 87 its very sad for me living with out ant parents and with chairi malformation by myself have brothers and sister they don't care bout me I called them but they do care so im your friend ok u can email me ok and your not alone im with you sweetie
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i had found out that i had hydrocephalus after my decompression . that was my reason my headaches werent going away. they had to put in vp shunts to help drain the extra fluid that was collecting in the ventricles. It didnt help that i had very small ventricles to begin with. all it took was a spinal tap to show what my pressure was and boom I was admitted and had a shunt by the next morning. Now that was my issue. So dont give up there could very well be a medical condition at the root of your problem.
Hi Cher,
I'm glad you have received such a good response to your post. This is a very nice group of people, who understand what you are going through and I'm glad they have shared their feelings and experience with you. Nice to know that you're not alone anymore, isn't it?
Everyone involved in Ben's Friends has come here alone and afraid for themselves or their loved ones. With the help of good Doctors, and this kind of heart felt, solid support, it can change your life in many ways.
Hope things continue to get a little more hopeful and a lot more tolerable everyday!
Wishing you well,
SK
Cher, I posted not too long ago practically every word the same. I get obsessed with not waking up just to live alone and in severe pain day after day. My husband left me. My friends quickly forgot all about me because I can’t keep up with “normal” people. Sometimes I can’t get out of bed for days or leave the house unless I absolutely have to keep a doctor appointment. I know so many people suffer worse, but I can’t tell you how many times a day I just want to scream. …I can’t do it by myself anymore! The worst part it I don’t want to. I have come to a very easy conclusion. …if I could be healthy and unloved or loved but with this wretched condition…I would take the love and help. We all have hurdles but I couldn’t imagine what it would be like having someone hold my hand. …care how I feel…etc. I also will never ever understand how people can be so selfish and heartless. I wish we could form an actual physical community where we could be near each other. …us chiarians…and look after each other. I wish I could give you a hug. You can message me anytime you need to vent…I will understand. I’m very sorry you are going through this.
Hi, I know how you feel!!!! I have been in extreme pain for a few years now. I was dealing with herniated discs, annular tears, degenerative disc disease, nerve damage, pressure headaches, sciatica, vision problems and back pain that no meds would help. I started having pain in my arms and neck. I just found out last week I have chiari and it would explain a lot of the symptoms I have had in the past and present. I am still in the shock stage and my family is acting like its nothing! My mom thinks I am being a drama queen! I told my close friends and not one of them said I'm so sorry or asked if theres anything they can do. One friend said that sucks and the other said she didn't know what I was talking about. I haven't even received any calls or texts since. So obviously they don't care so I will no longer even bother with them. The only people that seem concerned is my 86 year old grandma because she is going through the same pain and my 6 &10 year old daughters who likes to massage my back to help me. The rest of my family are trying to be too involved in my care they want to come to my appointments to ask questions as if I am child. They literally had a family intervention about this, I had to walk out on them it was too much! I believe my husband thought I was making it up too until I was diagnosed because he is being more caring now. None of them seem to understand the amount of pain I am in, they still expect me to be super mom like I always have been but I can't do it anymore, I can barely get out of bed. So I know how you feel when you just don't want to wake up, I have said this many times also. I am beginning to feel like a huge burden on my husband and kids. I am glad I just found this site... reminds me that I am not alone.
Hi Tara,
I'm glad you put this on the boards. If there is one thing that nearly every single person on any Ben's Friends group understands it would be this.
I'm not an expert on Chiari, but on degenerative, herniated, collapsed disc and spinal problems, I could write a book. If your grandmother suffers it, there is a very good chance this could be genetic. Finding what is causing it would be of tremendous help to you, as sometimes it can be slowed down.
My suggestion to you is to get a referral to the very best Rheumatologist you can find and have him look you over, run some much needed tests, and get you on the right meds, and treatments.
I'm so very sorry that you are being treated this harshly, the kind of pain you are talking about is very difficult to deal with, and it's tough for anyone to understand unless they are in your shoes. Perhaps taking your husband would be a good idea for you, since he is making the effort to gain insight, and is showing support. He may be the one you need on your side to straighten out the rest.
You are not alone, we may not suffer exactly the very same thing/things, but intractable chronic pain is a universal language.
Wishing you well,
SK
PS As you look over the different categories here, you will see that there are many tools, and many people here to help you.