I feel like my life has done a complete 180 in the last few months. I sit here wanting to say/ask so many things but don't even know where to start. I go for my MRI on Sunday to find out the inside info of how low my cerebellar tonsils actually are... as of now they've said at least 5mm below the foramen magnum but the MRI will show further details. They've also made note of how the back of my head is shaped differently. My anxiety the past few weeks has been through the roof and I've been seeing my counselor to help me with different techniques to help me cope. I am also feeling extremely depressed and angry lately, my emotions are out of wack. My symptoms change from one thing to another and are so diverse that I often wonder if I am really going crazy or if my anxiety is the reason for some of them. One day I will only have one or two symptoms and others where I am in immense pain. Symptoms range from severe headaches and neck pain, to lower back pain, bowel problems, pain/burning/swelling in my joints, in my ears, back of my eyes, or throat, twitches in all different muscles in my body. I've had a couple episodes of not being able to swallow and it scares the crap out of me. I've had shakiness and some episodes of tremors that have lasted almost an hour. My boyfriend has noticed that my intellectual speech has been off or how I space out sometimes. I've also lost 30lbs within 4 months (no dieting), not sure if this is related? Maybe stress or something completely different? My Dr has been sending me for a slew of tests while we wait for the MRI just to see what else is going on. I have to go in to get my results on Monday of my abdominal ultrasound which they found something, I just don't know what it is yet. Is there something related to Chiari that may affect this? I am finding it very, very difficult to get up in the mornings. I am 24 and I used to be very active and love the outdoors. Not being able to play soccer and volleyball this summer and dropping out of indoor soccer in February because of the pain has really bothered me. Everything is just very different and I'm really trying to cope with all of this but am having a hard time. I guess I'm just looking for some insight here as to what all is going on. Is this "normal" when it comes to Chiari? Has anyone found good methods to distract yourself when you're feeling anxious? I feel bad for this rant because I know and understand some people have it much, much worse than I do. I appreciate you all taking the time to read into this and am open to any information or insight you may have.
Hey Mandy,
Thank you so much for taking the time to provide me with all that information. Hypermobility is a definite for me. I always just figured I was "double jointed" and it was a normal thing but after looking into that website you provided, I do have a ton of similarities, especially in the "orthopedic features" section. I also had to tape up my ankles playing soccer and despite strengthening exercises, I would always roll them. So thank you very much for bringing that up as that will be another discussion to have with the doctor next week.
Music time is a great suggestion. I've tried epsom salt baths now and then but sometimes the heat is just too much for me to sit in. I've also been through physical therapy and massage therapy but always found it made my pain so much worse (before I knew I had Chiari). Now that I know a bit of what is going on, I am going to consider MT again and like you said, maybe ask for a gentler massage. I will definitely be looking into vitamin/mineral supplements as well with my doctor. Having a positive scent on hand is a great idea and I am going to try that as well. Again, thank you SO much for all your insight and really do appreciate all your suggestions. I will consider every one of them. I really hope you are doing well and taking care of yourself :) :)
Hi Mandy,
I wanted to say, that I understand your frustration. My 17yr old son has just recently been diagnosed and had no idea about all the other symptoms that could go along with it. My son also has headaches,anxiety and bowel issues, we had no idea that this could all be related to the CM. We are also in the waiting game right now. He has had his MRI's and we saw one NS and are waiting to see another for a second opinion, the wait is miserable because like you we want answers. I can't tell you how blessed we are that we have found this website!! The people are awesome!! the information and support we receive is unbelievable. I hope you get some answers soon.
Charlene
Your symptoms are almost exactly the same as mine! You are not crazy... On the upside, I had horrible brain fog, slurred speech, hearing issues, ect for 6 mo solid. Then one day I heard a pop in the back of my head and began to feel immediate relief. I still have symptoms of course (body symptoms have gotten worse) but most of the head related ones have gotten better. Just know that decreasing your stress levels can help tremendously. Also be sure to ask for an entire spine scan, including your spinal cord at the bottom, tethered spinal cord is commonly associated with Chiari and can be the cause of the bowel issues... There really isn't a "normal" for Chiari, every patient is different and there are lots of associated conditions. The Wisconsin Chiari Institute site has some great general info, could be helpful for you...
Charsay3 - Hello and welcome to the site! Everyone here is great and I hope you are finding all the answers and support you need as your son goes through this journey. I am sorry your son has to go through these things so young :( Good luck and I am wishing the best for him and your family!
Mandy - I am so glad to hear you are doing well. I too hope to find a way to manage some of my symptoms/pain... I know it is going to take a bit of time but so far I have found that the scent of vanilla extract has a nice calming effect for me :) I will definitely keep you posted on some other strategies I come across as I try a few things out. Also got my MRI back. Chiari Type 1 confirmed and tonsillar descent is 9.8mm .... I am now awaiting another MRI for possible Syringomyelia.
Pebbles - I am sorry your symptoms are similar... it sucks! But glad to hear that I'm not just crazy either. I too have felt a sort of "popping" sensation in the back of my head and felt very sick and dizzy afterwards... but then the ear pressure seemed to go away for a bit. I hope you are finding ways to manage your pain and symptoms as best as you can. I am getting a cervical spine MRI, I will ask about possible tethered spinal cord info as well. Thanks for your advice!