Okay, so I was diagnosed with CM1 last year and had my decompression surgery in Sept of 2013. My “brain freeze” headaches are gone, but many symptoms remain: frequent, sharp headaches, dizziness, extreme fatigue, constant lower back pain, intermittent constipation/diarrhea, etc. A friend on a Chiari Facebook page suggested maybe I have a tethered cord. After reading about this issue, I do have A LOT of the same symptoms. I have an appt with my NS the first week of Oct. Should I bring this up? When I was there is April, I told him my concerns about these symptoms and he just sort of shrugged and said maybe I have fibromyalgia. I really don’t think that’s what I have…any suggestions?
Thank you for the reply! Yes, I have read about Dysautonomia. After reading the symptoms, I really don't have very many of them....especially the "big" ones like the problems with the heart rate and ability to adjust to temperature change.
My biggest symptoms, to me, that points me to Tethered Cord are my lower back pain and urinary problems. For as long as I can remember, my lower back has hurt and been weak. I was very athletic in jr high/high school, and I remember having to put a heating pad on my lower back at night after games. Whenever I bow my head, I feel an uncomfortable "pull" all the way down my spine. I generally just don't bow my head anymore! I also wet the bed until I was almost a senior! There have been a few times as an adult that I would wake up at night and barely make it to the bathroom in time. I had UTI's often and a couple of them even turned into full-blown kidney infections.
I can be fine for a few days and then it's like BAM out of nowhere I am exhausted! I can push myself through it sometimes, like when we were gone on vacation, but then it takes me forever to feel better.
The other night, I had a sharp pain in the left side of my head. It was about 1 1/2" above my left ear. Within about 10 mins, my whole left side of my head, from my left eye to the left side of my incision on the back of my head was hurting. I ended up going to bed and my husband put his (warm) hand on the side of my head and I fell asleep like that. The next day I was so fatigued that I didn't do anything at all!
A different night, about a week ago, I stood up from the couch and got so dizzy I almost fell down! I figured I just got up too fast and it would pass, but it didn't! It lasted almost an hour! No headache with it, just dizziness!
What do y'all think? My appt with my NS isn't until Oct. 7th. Should I just wait, or should I see if I can get in sooner? How do I bring these things up when the last time I mentioned I was still hurting, he said I probably had Fibromyalgia?
While you may have multiple issues(Chiari, dysautonomia, tethered cord, etc), I would strongly suggest contacting your neurosurgeon, describing your symptoms, and asking for a spine MRI. How much of your spine has been imaged in the past? Up to 20% of Chiari patients will have associated intraspinal anomalies(most commonly syrinx or tethered cord). Just like Chiari, the diagnostic test of choice is an MRI. If you have not had a complete spine MRI in the past, it is worth requesting/demanding given your symptoms. If you have had one in the past, just make sure the neurosurgeon has reviewed it and ask if they think it is worth repeating.
I have only had a cervical and thoracic MRI…that’s what I was thinking, that I should ask for the lower half of my spine to be imaged…