I am 7 1/2 weeks post op and I’m feeling progressively worse. Yesterday I had a full blown Chiari headache that meds wouldn’t help. My neck pops and crunches when I turn my head, as if it’s out of place or catching on something. Different positions give me a headache. I’m very scared that my surgery has failed and that I possibly have CCI and or EDS. I feel like physical therapy is making me worse and all they are doing is massage and some very gentle stretching along with easy exercises in the pool. Can anyone give me some advice on what to do, wait or try to schedule with another dr? I spoke with my drs office earlier today and they said if it gets worse or doesn’t ease up, they will order an MRI. Also to back off on PT massage and stretching. I’m heading back to ns on May 2nd for follow-up. I’m hoping I’m just paranoid! Thanks for your help!
Aggie, I’m so sorry you are feeling so bad right now. Now, 7 weeks is brand new out of surgery, you still have some ways to go with the time factor and healing, BUT! If I were you I would take the stretching exercises VERY cautiously or eliminate them all together. If you do have EDS and or CCI the stretching can make things worse. You should have the MRI. I would like to suggest getting a soft cervical collar that restricts the forward and backward movement of your head (yes movement)don’t allow your head to drop down- keep it straight, of course run it past your doctor too. I have EDS and CCI, and the collar made a HUGE difference for me. Just make sure the collar is tall enough for length of your neck- if you have a long neck like me you may need the 4 incher! Do you have any signs of a CSF leak? Fluid pockets at the back of your neck?
Hang in there. If you continue to not get better then we’ll move forward with getting more answers, but I hope that you are going through a tough healing patch that will over soon.
My doctor gave me some neck exercise do work on to move past the stiffness and soreness but that was all. I almost wonder if the PT and massage is making things worse for you? As Jen says 7 weeks isn't that long and you will have periods where you'll feel improved and then others where you worry things are worsening. This is normal! Sometimes you'll even acquire a symptom or two that's new. In time things will settle down! I would definitely bring up EDS and CCI with your NS and see if he thinks that why you have the popping. I sometimes have some weird popping in my neck but no pain or discomfort so I haven't really given it much thought.
Thank you so much for the advice! It helps a lt just to talk to people that have been through this. Thank you for your time and dedication to this board! I cancelled pt Thursday and am not sure if I should go this week. Dr said no massage or stretching so basically I’d be doing a few things in the pool. It takes a lot just to get ready, drive 30 minutes there and back and actually putting my swimsuit on was very difficult, so I might not go until after I see ns. I’m thinking insurance limits the number of sessions they’ll cover anyway, so I may as well wait until I can get the full benefits. I wanted to get your thoughts on this. Before chiari dx, I used a traction device at home that my pain management dr gave me (about a year and a helf ago) for 5 months. I was able to look up for the first time since I could remember and some of my headaches were relieved for months. Does this sound like instability? I was only able to go a little more than half of the degree they wanted to see, I feel like my head would have popped off with more tension. I worry now what I might have done, I heard a pop on most occasions, it felt good though. I have had numbness in both legs and arms several times in the last 2 weeks. I’ve had numbness in toes for years off and on. I have lumbar disc issues though, so I assumed it was from that. But it seems to have worsened. Dr.Oro did my decompression and I asked him about instability and he didn’t think I had it. Though from what I read now, he’s not really an expert with cci. I just didn’t want to believe I had anything else wrong with me, so I feel like I gambled by just having decompression and now I think I may have made a huge mistake. On one list of cci symptoms I just saw, I have every single one. Sorry to ramble.