Chiari Online Support Group

Positive Thoughts About Surgery


#1

I am a 69-year-old grandmother who was diagnosed with Chiari 1 malformation with 9 mm tonsils and syringomyelia in June 2017. (Am I the oldest in this support group?). I had decompression surgery in January 2018. I am posting this because I want people to know that the surgery is not necessarily as horrible as one might imagine. In the Canadian system hospital stays can be short. I spent one night in IMCU and one night in a regular bed. Day three I was happy to return home to peace and quiet and my own bed. I could not have done it without the support of my wonderful husband. I did NOT have nausea which I thought was a given. Codeine and Tylenol kept the pain under control. Pain killers are constipating and I followed advice I’d read. Stool softeners were a definite must. Straining was not only painful, my neurosurgeon cautioned me that it could cause the patch to leak. There’s different advice on pillows. I had two. One I sewed a U in to make it flat in the middle. The other was a newly purchased water pillow. The first worked well for a couple of weeks. The water pillow has been a great comfort since. My symptoms continue with only subtle improvement. My doctor set a realistic goal of months and months before significant change but I’m confident I will not get worse. I want people waiting for surgery to know that it is not as scary as you might be imagining.


#2

Hi fellow Canadian
Beautiful post! May I ask what symptoms you had to encourage a spine mri to find the syringomyelia. I have a CM1 of 9.5 and bad ETV surgery. From my neurosurgeon point of view I don’t have enough symptoms to think I have a cyst. He did a needle prick test on my fingers - felt feeling. Thanks granny :slight_smile:


#3

My symptoms that prompted the spine MRI were tingling and abnormal sensation in both hands and both feet that sometimes extended to my knees and elbows. My tongue and lips also felt unusual. I had what I called “cattle probe” days where I received small shocks anywhere on my limbs. None of the symptoms were painful but they were frightening.


#4

Thanks for sharing - I decided to email my neurosurgeon and ask for a Spine MRI. He hasn’t replied yet. I may just pay for one myself if I don’t see relief.


#5

I am so glad you posted your experience. I had my surgery 18 months ago at the age of 53. I had a follow up appointment with my Neursurgeon today and my MRI was great. I have full CSF flow. My syrinx is flattened out with only a tiny section visible. I do have degenerative disc disease in my neck, but it s not problematic at this time. Surgeon said my next MRI will be in 2 years if I am feeling any symptoms. My recovery was long and slow and I had physical therapy and was really careful those first 4 months and eased carefully back into things. I run marathons and am running them again. I used a wedge pillow and a water pillow during recovery. I loved the water pillow. My surgeon today reiterated that recovery is a slow process and to be patient. I still have some residual issues due to complications during recovery that are not Chiari related - cognitive issues due to having aseptic and then bacterial meningitis. I had lots of help, was very careful about straining and over exerting. Patience is key to recovery. I hope you see continual improvement. I was released on day 3 as well from the hospital here in the U.S.


#6

I’m glad your surgery went well. But this surgery is hard & very difficult. It is a very serious surgery…& if you can avoid it I would. My little boy was in the hospital for 2 weeks…then home for 2 weeks with extreme pain & a huge gold ball size mass growing in the back of his head. He got a leak which required an external shunt & another surgery to repair the leak…he was in the hospital for another 2 months…almost had to do another surgery to put in a permanent shunt because of more complications when they tried to remove the external shunt.
Now we are dealing with permanent nerve damage & he is in extreme pain everyday all day because of those surgeries. So NO, it is not an easy surgery!!


#7

I am very sorry to hear about your son’s complications. I wish him well.


#8

Dear Granny,

You may win the award of being the oldest post here - but I DID run into a 70-year old lady who had the Chiari decompression surgery - and she also came out fantastic. She is one of the few Chiarians who I’ve met who had a 100% recovery from the surgery. I recall she told me her only symptoms of Chiaris prior to the surgery was pneumonia. She had ended up in the ER nine times the previous year with pneumonia - provoked by losing her gag reflex and aspirating a lot of her food & drink. Like I said, now she is 100% well.

I had my decompression surgery at 52 - but went 10-years with debilitating symptoms before being diagnosed correctly. So, I have some permanent damage to my brain stem. I can only claim 75% recovery - but that is 75% more life than I ever had before the surgery - so NOT COMPLAINING!!! :rofl: After my decompression surgery, they kept me in the hospital only 24 hours, then shipped me home! I’ve seen folks with hang-nails kept in the hospital for longer! (kidding) It does amaze me that I was kept in the hospital for such a short time for such a major surgery. At least, I thought it was pretty major!