I've just recently been diagnosed with Chiari I. I've been having severe symptoms for almost a year and now looking further back I realize that the symptoms began long before that. My husband and I have an appointment with the neurosurgeon next Wednesday, the 4th, so we are trying to get as much information in advance. I'm 61 years old (how is that possible?) and I'm wondering how others in my age group have done after surgery. How long of a recovery period, how helpful was it, etc. I'm very anxious and apprehensive about this whole thing so as many answers as I can get would be wonderful. Thank you in advance
I also cannot give you any experienced replies, but wanted to reach out to you. I am about to turn 54 and also am just being told for the first time that I have chiari. I have not even seen a neurologist it neurosurgeon yet, it was found when I recently had a brain MRI after experiencing increasing Neuro symptoms over the last eighteen months. I feel very much like what you described, anxious, apprehensive, and in need of information!! I just wanted to extend a hand of friendship and support as we walk this crazy road!
Rebecca said:
Hi rrhsunc,
I can not offer any words of experience in this area yet, but I wanted to welcome you to the community and wish you luck with everything. Others will come a long and give you some info, I'm sure.
I'm 34, pre-surgery.
Hello, I am 55 years old. I had decompression surgery 9 months ago. I too had been experiencing major problems for a lot longer than than you can imagine. I had been going to my doctor for over 3 years and had been treated for everything from sinus infections to pinched nerves. The headaches, horrible pounding in my head, blackouts, memory loss, severe anxiety, ability to swallow, etc were daily events for me. I was scared to death to learn about chiari. My surgery was long, 6 hours, and as a result I had chemical meningitis. I am doing much better than ever expected. I do not have headaches anymore and I now have so much better visual perception than I have ever had in my life. My head is quiet and I am able to sleep for 5 hours straight. I know how apprehensive you are, but you will be much better than you maybe have ever been. The support of family and friends are what got me through all of this. Good luck to you!
Jane heimbouch said:
Hello, I am 55 years old. I had decompression surgery 9 months ago. I too had been experiencing major problems for a lot longer than than you can imagine. I had been going to my doctor for over 3 years and had been treated for everything from sinus infections to pinched nerves. The headaches, horrible pounding in my head, blackouts, memory loss, severe anxiety, ability to swallow, etc were daily events for me. I was scared to death to learn about chiari. My surgery was long, 6 hours, and as a result I had chemical meningitis. I am doing much better than ever expected. I do not have headaches anymore and I now have so much better visual perception than I have ever had in my life. My head is quiet and I am able to sleep for 5 hours straight. I know how apprehensive you are, but you will be much better than you maybe have ever been. The support of family and friends are what got me through all of this. Good luck to you!
I am 53 years old and 7 months post-op. I was personally out of work for 12 weeks, then back to a stressful work/life balance. I would say I am about 70% better than before surgery, but think I would be better if I were not tired. My advice to you is that 1) this condition does not correct itself, so if you are a candidate for surgery, then be brave and take the chance to improve your health 2) we only get older, so do it while you are 61 years young 3) your current health status and state of mind will help with your recover. You can do this - you will reover and be stronger than before. You will be an inspiration to older folks with Chiari. Just make sure to take care of yourself and get lots of rest during this process.
Rrh, I’m sorry you have this diagnosis, but glad you are here with us. I’m going to attach an earlier post that’s appropriate since you are recently diagnosed. Glad you are gathering info…
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
I am glad you found us,
Jenn