I had Chiari decompression 90 days ago I quickly realized healing afterwards is the hard part more then surgery itself. I also have a syrinx from C1- t11 I was stable with ups & downs for 5 years after being diagnosed. Then in January of this year my symptoms started to progress suddenly I went to a neurosurgeon immediately for evaluation and testing he said that my Chiari or syrinx had not became worse but that doesn’t mean my symptoms can’t get worse. He said I had empty stella half moon shape which brings him to believe I had some intracranial pressure that could be causing my problems so he wanted to try a brain stent because if I had to have decompression it would be safer to relieve the pressure first this is in February.
I felt great for a few months but felt symptoms creeping back so we decided for surgery late summer my concerns were about my neck & becoming worse he assured me my neck would be okay and I would not get worse because I don’t have horrible symptoms and having surgery before total deterioration I would not get worse.
I’m now 3 months post op healing has been up and down the back of the head, shoulders, & neck causing discomfort especially during bed time when I lay on my surgical area it or on my head it’s uncomfortable causing symptoms those areas are taking so long to heal when that wasn’t my symptoms before decompression… I’m having breathing issues can’t sleep when laying down for bed and body & arm pain with weakness lumbar area killing me it doesn’t matter what side I lay on or if I’m low or high on pillows. I have had 2 sleep studies it says I don’t have sleep apnea it feels like I’m not getting enough oxygen mouth feels full throat feels tight when laying on side it feels like my lungs a being smushed together and no air can come threw.
My follow MRI and appointment was last week doctor says my MRI looks great and my syrinx went down 90% and it’s still early I have a lot more healing to do and I probably won’t feel this way in 6 months he also said since part of my syrinx was in my thoracic spine muscles could be weak and need to heal that’s why I feel like I can’t breath but it’s not life threatening and body pain is from syrinx he told me to talk to my PT about my popping cracking in my head & neck she said it’s still inflammation in the joints I stopped PT almost 2 weeks ago because I started to feel bad after she started to kick treatments up a notch doctor said still go but take it easy. I would like to hear from others that went threw the healing process with a syrinx some people told me it takes a long take to heal and you feel worse but they felt so much better down the line. I’m confused as to how I’m feeling worse than before decompression his assistant says my new MRI & tests looks great but I don’t know what to do I don’t feel well really depressed 2 brain surgeries in 7 months where does it end.