I have suffered from pain in the back of my head, neck and shoulder for a very long time. The doctors have always said it was stress. About 2 months ago I started having numbness in my right foot and what I refer to as nerve sparks, feels like bee stings on my legs and arms and my brain felt like it was in a fog. As time went on the numbness and tingling started going up my legs to my knees and then in my arms and hands. I sleep maybe 3 hours a night. I discussed all of the symptoms with my doctor and he did a bunch of blood work and all of it came back fine. Two weeks ago the numbness and tingling went to my head and face and the back of my head felt like it was on fire. It scared me to death so I went to the ER because I am a breast cancer survivor and I honestly thought the cancer was back and in my brain. They did a CT scan and didn’t see anything and sent me home. My doctor sent me for a brain MRI and when he called me he said it showed mild Chiari 1 but said that wouldn’t be causing my symptoms. I started doing my on research and was shocked to see a lot of my symptoms related to Chiari. I have read about having flares but mine seems to be all the time. I don’t know what to do now because I think it is related to Chiari but my doctor says no. Any advice someone can give me would be greatly appreciated.
First, do your research family doctors don’t know everything, even mine had to look Chiairi in his hand book and he empathized with symptoms but disagreed with what the book had to say. Second need to Google neurologist and Chiairi to see if you could find one who knows something about this. This support group will be helpful because there is many of us with same but also different symptoms. Hope you well
Tazz gave some really good advice, adding a few things. I would get a copy of your report and MRI CD. This is the beginning in complying your records for future treatment. Tazz said to find a knowledgeable neurologist, which your gp can refer you. Most insurance companies pay better when your referred to a specialist. Plus you get in sooner to see a neurologist
Chiari can cause numbness and tingling to hands and feet, but so can disc problems, Spurs even diabetics have these symptoms. Neck and shoulder yes, many of suffer the pain associated.
Get together your MRI report and start your question for the upcoming appointment now. There are listed some good questions lists here and ask questions and advice from your fellow members on this site. Know your not alone and we are here for you.
Find a neurologist that know about Chiari (not all do). Keep a daily log with your symptoms and rate your pain on a scale of 1 - 10 with 10 being the worst pain ever. Think back over your life time have you had any car accidents, concussions, muscle stiffness, muscle weakness, memory problems, family history of scoliosis, spina bifida, hydrochephlas?
I did this for my first visit with my neurologist and it helped her see that I have been symptomatic for “quit awhile”. I am 65 and was just diagnosed with Chairi and I have had symptoms all my life. They were my normal.
The neurologist offered to make an appointment with a neurosurgeon but we decide to go the conservative route with treatment so we are have started me on Baclofen a muscle relaxant. It is doing wonders for me. I could feel my muscles relaxing within an hour of taking my first dose. Muscles throughout my body were so tight. Our goal is for me to be comfortable.
My “nerve sparks” have ceased, the head pain has gone from an 8 to a 2. I still have numbness in my leg but I am more comfortable.
It is important for you and your neurologist to have a goal and for you to have good support systems and a good sense of humor.
Thank you so much for your reply. I haven’t been on this site for a few weeks due to my health. I am on my way to the doctor now and will ask about that muscle relaxer. They told me a few weeks ago a muscle relaxer would probably help me but would not call it in for me because I was in between appointments. They are sending me to a neurosurgeon because my neurologist knows nothing about Chiari and if I can get my head pain under control it would really help me a lot. I can’t see a neurosurgeon until November.
