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.
To start, congratulations on getting through 2 surgeries. It is great that the MRI’s show that the brain and spinal cord compression is gone. What is not great is that pain seems to be expanding and increasing in intensity. The same thing happened to me and I found the way back to an even keel difficult.
First off, if the MRI is good, the neurosurgeon is of little help. He does surgery and if there is nothing to see that needs doing, he is off the team.
Second, regular physical therapy is not appropriate for post-Chiari people who are having difficulties. If you are getting massage, joint mobilizations, and standard neck exercises focusing on the planes of movement, it will be too much of a challenge for you.
Thirdly, it is important to note that TISSUES have healed up after three months. When your medical people are talking about things need more time to heal they have no idea what they are talking about. It is just a variation on “rest, and you will see any improvements that you are going to get in the year following surgery”
This is hog-wash!
All my experience, research (the real kind of seeking out knowledgeable qualified people who do scientific research and whom other people in the profession look-up to!), and treatment point to the brain needing assistance in normalized processing of sensory information. I will stop there with my googly-gook. In a nut shell, the brain needs to learn how to work differently as Chiari messed it up.
I had to start with scar management.
This is a post I did on it. Read it through. Start lightly and just a little. If you find that you flare yourself up, rest, but know that you have found something that needs doing. You just have to find the level of challenge suitable for your body.
I did a number of other treatments following the scar management that dealt with my body’s perception of sensory input and how my brain transformed it to pain - plus biomechanical things. I have to go but ask away once you have worked though the incision problem. Not good to do everything at once!
Thank You for responding talking to others in the chiari community helps a lot. Your right about the pain it’s became worse as well as my nervous system is ramped up more than before surgery these last few weeks symptoms have been changing.
I realized quick after my follow up last week that my surgeon will be of no further help unless it’s something going on with my imaging. I’m left dealing with his assistant now telling me that I need to go to a pulmonologist & to follow up with my PCP.
My PT started out great she helped my neck and upper back muscles there very weakened from the syrinx she helped with that but when she upped the exercises after I became sore & painful I stopped the last couple of weeks.
The doctor said my nervous system needs more time to heal and my brain is still getting use to the new cerebral follow and muscles need time. I agree my tissue at the surgical site has healed I guess rest and time are my friends.
I’m so happy to hear your research on ways to heal very interesting about scar management I’m going to try this right away! I’m always searching for alternative ways to heal the body. I would love to hear what steps you took for you to stabilize your health your condition. I don’t take any pain meds, I love eastern medicine I find accupunture has been very helpful threw this journey, I will also try photobiomodualation therapy.
I wrote about issues in December about my post op issues with breathing, thoracic spine muscle weakness & pain. I went for more testing pulmonary function test, chest x-ray, and CT scan of chest I went for my follow up last week doctor said all my tests came back normal mild air trapping is seen uncertain significance except for my RV was high which means the volume of gas that remains in the chest after full exhalation. He reffered me to another pulmonologist with more experience with patients with neurological disorders and a prescription for an inhaler until I find answers, I’m not sure what another pulmonologist can do when all my test came back normal. My neurosurgeons assistant told me to follow up with her after testing she talked to the doctor he checked my imaging again and everything looks great and it could be a decreased in syrinx size I’m only 4 months out. She said I need to find a neurologist with back ground with this disorder and see what happens so your right there off the table after surgery and your left to figure out lingering symptoms. The symptom is up and down changes in told her it feels like inflammation because when I took turmeric I felt good no issues or is it neurological but their more concerned with me seeing other doctors. What’s your suggestion? As this is turning into a wild goose chase for answers.
IF the tumeric resolves your concerns to the point where you feel good with no issues, I would stick with that and call it a day. No need to chase after things! I do not think it unreasonable to not be up to full speed 4 months after surgery, though.
I always use turmeric to cook with in my tea but when I took the pills with curcumin it raised my blood pressure and heart rate. I know it’s still early in my healing process but the up and down breathing issues are tuff that’s why I have been trying to figure out answers.
Here would be a great place to outline your breathing issues. I have to say that I am not clear! Pretend that you are typing to a medical person - be short, clear, no slang, no unusual comparisons. They prefer if you leave what they see as drama out of the office. Goodness, they are demanding when they are dealing with Chiari folk who are feeling desperate and unheard! Do your best and let us see what people have to say.