Hello friends, I have a Chiari 1 malformation, that was found during a routine MRI for migraine treatment back in 2001. Other then the headaches and neck and body pain I have never had many issues with symptoms. I have had flexion/extension MRI’s every 5 years (when not pregnant, I have 5 kids I have spent a good portion of the last 13 years pregnant lol) And with each scan I have been told that my Chiari is stable and CSF flow was only minimally obstructed in a few positions and since my symptoms were not effecting me much I could leave well enough alone. Last March my oldest child was admitted to the hospital with what would prove to be an awful ordeal including a coma, brain biopsy and more and after 9 long months we found she had very aggressive MS. That said, my symptoms got a lot worse but as most moms do I ignored them to care for my child and then when she got better I chalked it up to stress. A 40 lb weight loss in 9 months, I am 5’1 and only weighed 130 lbs to begin with so I became quite shocking to look at. Plus the headaches, urinary issues, body pain, falling and balance issues and severe insomnia. So they did a check up MRI and it was bad, really bad! I am herniated past C-2 and surgery is needed ASAP. Now my symptoms get worse by the minute. I am scheduled for a Decompression on April 17 which is coming up fast, they just set the date this last week holy cow I am reeling! My questions are these, my dr is doing a newer procedure which he calls dural relaxing incisions vs doing a patch from harvest. This is better in so many ways, they do not enter the dura or expose the brain or fluid surrounding greatly reducing infection and bleeding risk. There in not an ICU stay bc they do not enter the Dura, the incision is 2.5 inches vs the usual 5-7 inch and recovery is 4 weeks vs the 6 plus. He will take the outer, thicker layer of the dura and cut slices in it and stretch it over the new openin he has carved out and sew that into place where a patch would normally go. He says 19 out of 20 patients have great results and are basically symptom free or close to afterwards. So question one is has anyone heard of this? Had it done? Or have any thoughts on the concepts, good or bad?
Question two, I am an emotionally mess…not my style at all one minute I am fine the next I am crying my eyes out and yelling and loved ones. Is this normal? I can’t seem to stop it. Thank you for any input.
Emmaline said:
I don't know what to think about that. Did you see this thread?
http://www.chiarisupport.org/forum/topics/new-to-chiari-and-need-yo...
Thank you Emmaline (my youngest daughters middle name BTW) that thread did help. I am torn on the opening of the dura vs not but I have so little info, so thank you that is a great jumping off point and I am finding I feel stronger the more I know. Thank you again!
I guess I was just not prepared for the severe emotional roller coaster of all of this happening and happening so fast. I have had 5 kids, one of which was 8 weeks premature and last year my oldest child was as close to death (coma, brain biopsy etc) as a child can get and still I took it all in better stride then this. So I am mad at myself because I am a stronger person then this and I spend my day hiding my panic and symptoms from my kids so they are not more scared then they already are, I am sure this is not helping me but it is best for them, they are all little. My boyfriend is a saint among men in all of this and deserves a medal for dealing with all of this, he is simply amazing. Thank you for responding and understanding.
Trinity
Emmaline said:
And let me add...crying is SO normal! It's a lot to think about!