Hello Chiari Community,
My name is Kevin. First I want to say thank you to everyone who has shared and responded on this community site. It’s a wealth of honest experiences and so helpful. I am 46 and recently diagnosed with CM1 with 13mm herniation and C3-C7 Syrinx that was discovered while searching for the source of a new sharp pain I would get if I tried to do a shoulder shrug - even without any weight. As I imagine it was for everyone here, it was alarming to hear - and completely new to me as I had not known anyone who has had this diagnosis. In the past I have had some knockout headaches, but fortunately they are a handful of times in a year. I almost always have pain with sneezing or coughing and sharp painful head rushes and loss of balance every so often if a strain oddly but attributed it to…‘a head rush’ and that everyone had them. I’ve had neck stiffness and upper back pain for years and attributed it to a physical lifestyle. Sleep is painful 5 out of 7 nights a week.
After the diagnosis the Ortho Dr and Radiologist ordered a brain MRI to rule out anything else. After completing the Brain MRI, I had a consultation with a Neuro Dr who basically said we can treat the pain with meds and monitor the syrinx for any changes, or if it’s affecting your daily functioning we can do a decompression, C1 Laminectomy and Dura patch. I tried muscle relaxers and a nerve block with no improvement - so I am on to surgery this coming Thursday.
Particularly for those who have a syrinx as well, I am seeing that it takes several months to see any improvement and for it to shrink - coupling that with the slow and delicate recovery from the decompression, who out there has had a positive change in their symptoms and have you been able to resume normal physical activity?? I have read about a few who are back to a normal exercise routine without any restrictions and have also read of those who have not been so fortunate.
Thanks for anything you can share.
Hello Chiari Community,
Hello and I wish you well with your surgery and recovery. I will be at my one year mark on Oct 24th. I am a success story. I have an amazing Neurosurgeon. I am back to running marathons, lifting weights and leading a very normal pain free life. My recovery was long and difficult due to complications(meningitis twice). My symptoms have resolved completely and my syrinx has flattened out and I have normal CSF flow. Prior to surgery my CSF was completely blocked. I recommend really letting your body heal and not pushing yourself too early. I also had 3 months of physical therapy to recover from the severe whip lash the surgery gives you. I hope your surgery is successful. My surgeon used my own scalp for my durapatch and used dissovable stitches in my incision. She also cauterized my herniation and I had a c1 and c2 laminectomy.
Thank you runnergerl. Great to hear about your success. Very positive, yet tough to see in current state. But, I have faith. I am day 15 and taking it very slow. Had 2 nights stay in hospital and home on Saturday (Thursday surgery). 1st followup was Yesterday. Neck pain and stiffness is getting much better now, as opposed to week 1 which was pretty brutal. Alternating a pain killer and muscle relaxer. We just started a new Muscle relaxer and had immediate results. Tension headache still around, but tolerable. And I slept better last night with it. I have found that if I feel the tension headache coming on - I take a warm shower and let it run right at the point of tension and around the neck muscles. That has also helped. I am having each of my kids take me on a walk outside each day.
When did you start PT. Did they do any ultrasound, and did it work?
I started PT at week 10 during recovery. I just had my one year anniversary - Oct. 24 and am still symptom free. I hope you are feeling better.
Thanks. Just hit 6 weeks, and cleared for PT. Much better, working from home and able to do most basic activity. No structured exercise until I see PT, walks and mild hikes. Just waiting for the order and finding a local PT.