It has been a journey! My decompresssion surgery was on November 4. It should have been a few days in the hospital - 5 days max. I was placed in ICU right after surgery. The nausea and vomiting was horrible, then my respiratory system shut down. Right after that, my endocrine system spazzed AND I developed a case of thrush mouth. I spent 6 days in ICU! Once I got home - 11 days of hospital time, my digestive system has since shut down and is trying to reset. It continues to be a difficult trip.
I was told when I received my black belt "if it were easy, everyone would have one." I guess only special people are chosen to endure CMs!! I believe it is my purpose to do all that I can to help those with a CM or a loved on with a CM. I have to use my talents and abilities to do more than I have prior to my surgery.
Good luck to all who have been "BLESSED" with a CM! Keep fighting, be strong, and know that we are here for you when you need a helping hand!!
Those are very well spoken words friend! I hope your recovery is speedy, and even if things don't look bright, that the light shines on through. Good luck and thanks for the offer of help! It's always great to hear of someone who has to endure with these sorts of problems, and in the end come out better for it, both physically and mentally. Thanks again for your words of encouragement, and the same goes to you, if you ever need help never hesitate to ask! There are amazing people here, yourself so it seems included. Keep fighting, be strong, and live well friend!
Weeble, you have been through so much in the last month. What happened with your respitory system, if you don’t mind my asking. I’m so glad that you are on the other side of that ordeal now. Besides the GI stuff how are you feeling? How’s your head? How’s your heart rate? My GI still needs help 9 months later- I take a magnesium supplement everyday and it helps a great deal, helps with stiff muscles too. I’m so glad you checked in to share what happened and to let us know how you are. I think you got it right about the type of people who have CM- this is not for wimps!
I am not sure why my respiratory system shut down. I was in and out of consciousness and remember hearing that I would be put on a vent and a feeding tube if my oxygen levels kept dropping. Before trying that, they gave me a muscle relaxer and a bi-pap. My family was later told that I have sleep apnea. The fun just keeps coming!
No. I now have to go to another doctor and undergo a sleep study. Then, I will be fitted with all the equipment for home use. Like I have time for all that!! I don’t understand why it wasn’t done before discharge from the hospital.
I am 9 wks. out from decompression surgery. I had the nausea/vomiting issues and was not able to take any pain meds as a result. I also developed thrush as well and have had digestion/constitution issues too.
I did not have any respiratory problems. I am glad that they were able to turn that around before putting you on a vent.
Have you noticed any improvement yet in your symptoms????
My "chiari" headaches are better, but everything else is still sticking around (dizziness, vertigo, tinnitus, neck pain, etc.)
As far as my NS goes, he is very satisfied with the surgical result. He says that he restored CSF flow and since the headaches are improved, it is a success. As for the other stuff - he said give it a year (but didn't sound overly confident that it would get better).
I live on zofran and phenergan for the nausea. At first, I could not take ibuprofen because I am on a blood thinner. Since then, I have been cleared to take Advil on a limited basis and do not require anything else for pain.
My NS took intracranial pressure reading in different positions before and after the decompression. I now understand much better how everything functions. Since the surgery, my headaches and neurological symptoms are exponentially better. I still have some of the ringing in my ears, the fuzzy feeling, and the nausea. I would love to say that I am sleeping a lot, but I can't. I have insomnia instead. I can go days without sleep.
The doctor told me that over the next year I would continue to improve and see many changes, there would be peaks and valleys. He said it was because the brain stem had to adjust to having more real estate and then learning how to function properly once it was settled in to its new space.
I took zofran for about a week after getting home then the nausea got better. I take an Advil occasionally and sometimes 1/2 of a muscle relaxer at night. I had soooo much trouble sleeping, but that has gotten better just in the last two weeks. I am actually in bed now. I slept in a recliner or on the couch beforehand and was up many times throughout the night. I have been on Klonopin for over 10 yrs. because of being mis-diagnosed with Meneiere's disease and vestibular migraines, so that sort of "knocks" me out. I would love to get off it, but my PCP said don't even try for at least a year because my brain is still trying to get used to all of these new changes and eliminating that now would not be good.
Great news that you are noticing a huge improvement in many of your symptoms. Hearing that keeps me hopeful. I really do have a lot of peaks and valleys. One good day is usually followed by 2-3 not so good ones. The back of my head is so tight and painful all around the incision. Those healing neck muscles seize up all the time (the cold weather in Pittsburgh is not helping). My NS was not kidding when he said that this was an easy surgery for him, but a very painful one for the patient.
I am about ready to get a t-shirt made that says "Ask Me In A Year". I have so many people wanting me to be better, that I actually feel bad when I can't say "hey, I am cured".
It doesn’t help with ice in Dallas! It isn’t supposed to be this cold here!!
I love the shirt idea. It is so true. I hope the good days start out numbering the bad ones soon.
The incision / scar is painful. The base if the skull and top of my neck are extremely sensitive. It is miserable all the way.