I just today stumbled onto this site and thought this would be a perfect opportunity to learn about my condition. I had a MRI in Dec. that said I have a 9mm decent of my brain into my spinal column. I go to see a neurologist in June but Im confused and scared. Im not even sure without a neurologist confirmation that I even have Chiari Malformation 1 but I assume the radiologist knows what he is talking about. All I have ever had as far as symptoms is migraines since I was younger which is usually during spring and fall only. I have dizziness every once in awhile but that didn't start until the end of last year. But for the last week I have had neck pain which makes my neck hard to turn. I thought that was from exercising. I have lost 31lbs since Dec. but I don't think I do too much exercise that would cause this pain that I have been having. Some days the pain is almost completely gone but then on other mornings I wake up and the pain is almost unbearable. That is what brought me to this site. I really wasn't thinking that the pain was from this but then something in the back of my head said to look it up. I guess in a way I have been in denial about this condition and everytime I look info up about it I start to cry so I just avoid it altogether. I am not sure if I should call my doctor about this pain or just wait until the end of June when I see my neurologist. The pain is pretty bad and debilitating as its hard to drive because I can't turn my neck when I have this pain, and I don't want to exercise and aggravate it more. Maybe some of you have suggestions. Wish I knew more about my condition...Thanks in advance for any info or suggestions.
Hi and welcome! It is a scary thing to deal with. I suffered with symptoms for 3 years before being diagnosed. I wasn't even told what it was until I was sent to a neurosurgeon. I had to research it all on my own before the appointment to know what I was dealing with. I didn't have time to be in any denial though, I had the appointment with the neurosurgeon and less than a week later I had surgery. This is the best place to ask questions, we are not doctors, but we help the best we can. As far as calling your doctor about the neck pain, you can, it couldn't hurt but in my own experience they won't really do anything until they see you (maybe they could move up your appointment) also when my neck pain starts, they would give me drugs (in the ER) but it would not completely take away the pain (maybe just dim it a bit and make me very tired). Good luck!
Thanks for letting me know that I'm not silly for not knowing anything. lol When I first got my MRI I didn't have insurance to see a neurologist. In Feb. I finally got some but could not find a neurologist who takes my insurance. I finally found one 3 weeks ago and made my appt. but they didn't have any openings until the end of June. I say I was in denial because I haven't really had any symptoms. I actually had the MRI's done because of lower back pain and my PCP just ordered 3 MRI's and a x-ray of my pelvis to be thorough. I wasn't expecting these kind of results at all. i thought I had a slipped disk or a pinched nerve. I thought my migraines were just migraines because that is what I was diagnosed with in my late teens. Without having all the symptoms on this diagnosis I thought well maybe this isn't Chiari but the appointment to the neurologist was still necessary. When I called my PCP last week about my neck pain they said that it was probably a pulled muscle. I have been lifting weights in my exercise routine and figured they were right. Since speaking with them I have only been doing cardio and the pain goes away but comes back. I thought I was just continuing to sleep on it wrong because the pain only comes on right when I wake up. It hasn't been as bad as today though. Im waiting to hear back from my PCP to see what he wants me to do.
You are right about not a lot written. I can't find much on it at all. My doctor hasn't said anything about it either. I wasn't told what I should stay away from or what I should experience. NOTHING!! I really didn't think it was serious at all. It wasn't until I read some about it on the Mayo Clinic website about if it doesn't get treated that I could become paralyzed that I even thought this could be really bad. SMH They tell you that and give some symptoms but that is about the extent of it even on the Mayo Clinic website. And then I am having all this worry about the unknown and I have to wait until I see a neurologist to see whether he even can tell me much. From the looks of it though from websites it would lead you to believe that the doctors are pretty much clueless as well. I don't know, all I know is my neck hurts right now and 3 hours after placing a call to my doctors exchange and 1 follow up call 45 min ago I still have no call back. Its so frustrating!
Don't lift weights over your head if your a weight lifter. Ice to the back of my neck helped with the pain. You will be better served by seeing a Neurosurgeon versus a Neurologist.
Thanks everyone for helping me feel better about this. Yesterday when I woke up with the pain again and started reading more stuff online I was mortified. But not as bad anymore.. @Poptart- I have lost the 31lbs. from diet and exercise since Dec.6th. It isn't from this or any health problem. I did it to be health yes. My highest weight was 220lbs. I lost some and then it haulted but i changed my diet and exercise regimen and hit it hard in Dec. when I then lost the 31lbs. I actually have lost 57lbs in total. And I have to say that this neck pain has really been hindering me lately from continuing my weight loss journey. I already have a hard enough time losing weight and not being able to exercise only makes it harder.
All I know about my situation is what I have seen in my MRI results and was referred to a neurologist. My PCP said that some of my symptoms directly relate to Chiari ie. migraines, dizziness, tingling. Yesterday I did forget to add that when I started exercising in Dec. I noticed that my fingers and toes would tingle after a little while on the bike and elliptical and I started to notice that I was getting dizzy when I stood up after sitting for a little while. That is what triggered me going to my doctor in the first place and the lower back pain that I have experienced for so long. But I was also told by my trainers that the tingling is normal when using those machines because you move your extremities but not your feet and fingers and many people experience the same feeling. This last week is the only time that I have ever experienced neck pain though. The pain is crazy. When I wake up it is so stiff. When I try to sit up I have to hold my head because it feels like its going to fall off. And I have very limited ROM. Its hurts to turn my head in either direction. My PCP never called me back yesterday and I just keep wondering if I go to the ER if they will even be able to do anything for me. I really want some relief. Anything to help with the pain would be awesome! Has anyone else experienced this?
Will the pain shot only give me temporary relief?
Hello and Welcome!
Many of us had a similar start with this disease. I find it interesting you mentioned you had lost weight...my Chiari Symptoms ( I didn't realize I had Chiari at that time though) were majorly made worse after I lost nearly 80 pounds. You should call the Neurologist's office - tell them the symptoms are getting much worse and see if there is anyway possible they bump your appointment up. You could try talking to your family physician if they aren't able to help you at the neurologist's office. There are some prescriptions that can help with the symptoms.
Sending healing prayers and wishes your way for a quick diagnosis and treatment!
I'm 48 years old. I lost 120 pounds 20 years ago. I weighed 231 at my heavisest when I was 26. I was keeping 100 pounds off through healthy eating and exercise. Last year, I started lifting heavier weights, military presses over my head. I started getting the neck and pain up the back of my head, bad nausea and dizziness, that kept me from working. I was trying to get into summer shape last spring. When I was doing step aerobics, my feet would tingle. I've had Chiari symptoms that I always attributed to something else for years. I'm a nurse, so i think I can diagnose myself, Not. Anyway, my symptoms escalated and incapacitated me in less than a year. I went from exercising daily, to once a week. I lost 25 pounds in nine months from the nausea and depression alone. Prior to surgery, I was a walking skeleton (my daughters words). I am 2and 1/2 months post decompression and laminoplasty. The recovery hasn't been easy. I finally walked around my block yesterday. I grieve the woman I once was. I know that I can't do the high impact stuff anymore and will not ever lift weight over my head again. I will do the 5 pound bicep curls. I truly believe that the weight lifting exasperated my symptoms. Its good to eat healthy, and unburden your spine of weight. I told my PCP that this is what I get for trying to be healthy. She said imagine how you'd feel if you didn't take care of yourself. The ice helped my neck pain the most, and Advil. A soft cervical collar worked when my neck was too tired to hold my head up. I too have stenosis of the cervical and lumber spine, so I know the lower pain as well. Anyway, I hope you get answers. Take care.
I haven't had any nausea and my migraines are rarely bad enough to really complain. I definitely eat better. I have been using myfitnesspal to count my calories and watch what I put into my mouth. I also just bought a fitbit and can really tell how low my activity has been since my neck has started hurting. I'm pretty sedentary lately since this pain started. I still try to walk as much as I can and take stairs also. I had surgery on both my ACL's and now have arthritis in them because of the surgery. Since losing the weight my knees are much better and I have been able to do more with my kids but now I'm having this pain and its truly a bummer. People never understand another persons pain until they go through something similar themselves. I just really don't want my weight loss to stop now that this is going on. I have came to far and don't want anything to get in the way of me achieving my goals.
Beeba knows her stuff. Good luck :)
I just wanted to give you a update. I went to the doctor on Wednesday. He sent me to get x-rays and I have a follow up appt. on Wednesday of next week. Radiology said the results would be sent to my doc yesterday and I really wish they would call me now to give me the results. Im still in pain and just want to know whats wrong without waiting a week in suspense and worry.