Hello, this is surreal. I've had bad upper back pain and spasms for a few years (also a constellation of other weird symptoms, but the back pain is the worst...hurts to sit and lately even hurts to stand for very long...feel a really uncomfortable pressure in my upper spine area, so doc finally ordered an MRI).
My primary doc ordered an MRI and called me back, telling me I had a Chiari Malformation, type 1. She wasn't able to tell me much but hooked me up with neurosurgery dept so I can talk to a doc there next week. I've been studying up a bit just to not feel so confused...to help formulate some questions for the doc, etc. I am a musician and violin/orchestra teacher so worry A LOT about the pain in my upper body (also weakness in mid traps, so I'm constantly holding my arms up with the wrong muscles...physical therapy didn't help). I'm worried about some of the cyst things (syrinx). Also, I have several hypermobility issues and don't totally understand the connection, but realize I should bring to the doc. If I don't feel sure that he knows what route to go, I will check on the wait at Mayo since I'm in MN and Mayo Clinic is in my insurance network. I can't have spinal fluid building up in weird places and causing permanent nerve damage in my upper body. I'm on 1-2 tramadol daily, Tylenol, aspirin, and also flexeril for the spasms.
Questions: can upper back pain and spasms come from Chiari 1 alone or is that more likely syrinx related (just in your experience, I realize this isn't a medical opinion and we all have our own individual issues)?
Do syrinx grow? How often should I get checked if stuff looks okay for now (not that I think my level of pain is reasonable).
Do docs who specialize in Chiari understand the hypermobility link well or do I need to hike over to rheumatology for a separate diagnosis? (on my own I could check off anything needed for a hypermobility syndrome).
I feel like my symptoms have sort of snowballed recently and am reminding myself that the bad symptoms sort of come and go. But honestly I'm freaked out. Glad to find this forum. Thanks for any tips, whether related to these questions or if you have suggestions for other things I should be sure to mention or ask when I meet with neurosurgeon (not a chiari specialist but just the first neurosurgeion I could get in with who can interpret my MRI).
thanks for the extra info. I do not have a diagnosed hypermobility syndrome, but as of yet nobody has checked. If I look over the symptoms online I have supposedly enough to meet diagnosis for Hypermobility Syndrome, but I know that's not the same as getting a doctor to go through this with me....my problems always got unbearable with hormone changes, so when I asked if I should see a rheumatologist my doc decided to start with ob/gyn and medications. My physical therapist attributed my shoulder pain to hypermobility in those joints...especially left shoulder IS hypermobile, but I also wonder if weakness in middle trap (scapular dysfunction) is nerve related.
Anyway, I will be sure to ask neurosurgeon I see this week about tests for possible joint dysfunction, especially craniocervical. I do feel like a bobble head, or like my head is too heavy for my body. Sensing this, I've always shied away from yoga moves that strain my neck or head. Sitting is much more painful than laying down and I do have good posture and movement, but it seems like no amount of kinesthetic or postural smarts can take away the upper back pain and headaches. Laying down is the only relief when it hurts.
I'm really nervous. Time is going by very slowly until my next appointment.
Thanks Rebecca. I do feel best laying flat. Ick. I know if I need surgery, now or later, it won't happen until I feel confident about a doctor who can test all the hypermobility stuff and assure me that my neck can support my head!! I do not know if I have a syrinx. Primary doc called me and told me there were some abnormalities, specifically Chiari 1, almost "borderline" but most of my symptoms are bad pain around thoracic spine, also some weakness in middle trapezius muscles. Primary doc wouldn't or couldn't explain much and wasn't even going to tell me anything except that MRI was abnormal, probably something I was born with, and I need to go to neurosurgeon. I told her I at least wanted to know what the thing I was born with was because I'd be more freaked out for days not knowing. Based on the little I've figured out so far, borderline Chiari is usually associated with syrinxes, and so is the back pain...so I'm freaking out but just need to wait and see (time is oozing by with this wait). I rarely have dizziness. Headaches sometimes and they are horrid...everything above the waist hurts. But the back pain, tightness, and weakness is daily...like the muscles have become just dysfunctional.
I see neurosurgeon tomorrow. I have lots of questions, including connections to hormones and hypermobility. I'll take good notes and probably start looking for a Chiari specialist right away after I get more details (size of herniation, if any syrinx, etc).
Primary doc said both "Chiari 1" and "borderline" so much be just barely 1. Probably she was trying to summarize some technician's notes or whatever. Anyway, I did get appointment fast because doctor called me directly with MRI results and then told me to hang up so her nurse could call back and schedule me into neurosurgery. So I'm happy about that. I don't have a printer right now (it's like the 1980s in my house) but will mention hypermobility concern and show doc some of my circus-artists joints if needed...how can anyone be certain my neck is even supporting my head? It FEELS like a bobble head, too big for my neck. I've noticed this sensation for years and avoided neck straining yoga and Pilates poses naturally...even asked a woman who washed my hair at the salon to help pick my head back out of the sink for me because I couldn't do it alone!
I don't have leg symptoms, so hopefully no tethered cord (looked that up...sounds horrible). Even if no syrinx I want someone to explain if this is related to my upper back pain and what the possible treatment steps are.
Thank you...good to know there are tests, so if one doc tells me there is no way to know, I know he's full of sh*t. There has to be a scientific explanation for bobble-head. Anyway, I do know it's Chiari 1, like barely, but that much they can diagnose. I know that is sometimes asymptomatic. But I'm going to really look for connection to or answers for my symptoms. When I asked my primary doc over the phone what was going on in the thoracic area she couldn't tell (like she just wasn't good at reading an MRI, but now with a little researching a syrinx messing up this area might more likely be in the cervical spine). I wish my appointment was in the morning. Just come faster!!! Thanks again for the info. -EE
ChiEE, you are one step ahead because you know about your hypermobility, this is not something you want to find out after a life changing surgery. EDS effects our ligaments- so cranial cervical instability absolutely should be ruled out by a true chiari specialist who treats CCI. EDS can cause a lot of other difficulties too, like GI issues and malabsorption. Many of us are low on Vitamin D, magnesium, and the Bs. These are great videos explaining issues with EDS and chiari:
CSFinfo.org
Videos
Greater metropolitan area
All videos with EDS- especially with cranio cervical instability.
Thanks Jenn. We didn't get to talk about any symptoms because the neurosurgeon I saw today just told me right away that the radiologist was wrong (he diagnosed Chiari 1 and syrinx). More frustrating that I could have imagined. Just horrible (I just posted about that separately a bit ago). I don't know what to think and hope I can get in with a different clinic.
