Hi and thanks for adding me. I think it will be nice to speak to others who can relate, actually relate to this crazy thing called chiari.
How I was diagnosed- in December 2014 I caught my 4 year old from falling on a think sheet of ice. But in catching him I fell instead. I broke my pelvis and got a horrible concussion. The chiari malformation was for by accident through the scans that followed. I do think many symptoms have been overlooked. Incorrectly diagnosed. I have a wonderful neurologist, he is one of two doctors that have not dismissed my symptoms- but I don’t think he knows enough about chiari malformation. The more I learn the more I think certain things are wrong. I’ve tried just about every thing besides surgery I can think of. A few weeks ago I finally printed out the list of neurosurgeons covered by my insurance. I never ever thought I’d get to this point. I’ve been opposed to surgery since the beginning. But the symptoms are so bad, I’ve lost every ounce of quality of life I had. I’ve lost my career as a massage therapist. That was my passion, working in a PT clinic helping others get well- AND I CANT EVEN GET WELL MYSELF. The irony in life. I’m a single mother, I have been since my son was born 5 years ago. And he asks to go to my moms just about every day. Nana and Grandpa can do more with him than I can now. I am literally a shell of the person I was but if I can get just one thing back I just want to be a good mom again. A fun energetic mom again. The mom who plans the events and makes things special. I just want to give my son everything he deserves. The pain, the loss of function, the fact that I cant remember anything, all of it isn’t as bad as not being the mom I was.
I’m just glad I’ve found others who can “get it”. I know people mean well by patting you on the back and telling you it will get better. I’m so sorry you all know these feelings too. No one deserves this.
Hi Cassie
You’ve found a great place for support, encouragement, information and ears to listen when you need to vent. I’m sorry to hear about your situation. I’ve learned that each case of CM can very different.
In addition to this, our life situations and demands also differ. When I hear about mommies with CM it makes me not want to complain. I’m single, no children. I have an aging and sick mom, so I have other demands. However I cannot imagine what CM moms go through. To top it off, have to put up a fight to get doctors to take you serious.
I’ve not had surgery, but I encourage you to reach out to folks here who have. Read some of their posts to learn more about the process and their experiences. I’m going to end here. Between my screen malfunctioning and brain fog I’m having difficult time organizing my thoughts. I just hope you can understand some of this. Again just wanted to welcome you and let you know you’re not alone.
I have been where you are. I had decompression surgery 18 yrs ago. I became more able by slowly pushing myself a little at a time walking or doing other things to be active. I would hurt a lot in my back and would then lay down with a heating pad even sleeping overnight with the heating pad on my back. It would be better after I had rested with the heat and then I would do more things and repeat the process of rest, heat, meds and so on. At one time, for about 10 yrs. I mostly stayed in bed, not able to do much and attribute being active by getting my muscles warmed up and blood moving in them, to becoming active again. I think that the more pain we have and the more we don’t move, the more stiff we get. I just trade the pain for the active time and rest when I have to. I take a lot of Ibuprofen 4 tabs and 2 tabs of exta strength tylenol plus a script for pain and the heating pad with rest. That seems to allow me to function and live a more satisfactory life. The myofascial pain becomes worse the less active I am. It is much better now. Also, a good nutritional program with sufficient protein is essential.Plenty of sleep with afternoon naps is very important as well. Hope something here is helpful for you.