So its April, two months shy of a year “chiari free”, and I can still tell you that I am glad i did the surgery. I still have a slight headache now and then (which i cant rule out allergies on that one) and i have yet to experience many of my other symptoms. I am still concerned that it could grow back, but I know the right doctors now should I ever start feeling that way again. Any questions, please email! Glad to share my experience.
I have to say that my least favorite part of this whole experience is the recovery. I am not able to lift anything over ten pounds…which wouldn’t be an issue if I didn’t have an oh so cute and active 9 month old. I cannot express how hard and emotionally trying it is to not be able to pick him up. So, please, hold your babies a minute longer for me tonight. Another not so favorable piece of recovery is the time. I’ve been told that it could be 6-8 weeks before the dr releases me, and given that I’ve been running a low grade fever for two days, it could be longer. 😦 a low grade fever isn’t usually a big deal…but I guess after this type of surgery, there are all types of things that could go wrong
So, that’s my complaints about recovery. Just when you start to feel better and try to do a bit more…it knocks you back down a few notches. Take it slow (I know, I’m hard headed and hate it). But, given all that I know now and the decrease in symptoms compared to preop, I would defiantly still do the surgery.
After this long road to being diagnosed, finding the right doctor, and getting everyone’s schedule in line, we had surgery at 11:00 on Thursday June 21st. The surgery was expected to last 3 to 4 hours. I woke up and was aware of people in ICU at 5:50 that afternoon. The first day after surgery was the hardest. I will spare the details, but if you should be looking at doing this surgery yourself, just know that the first day is hard. But here I sit, 6 days post decompression, and I can list 5 symptoms that I had prior to surgery that I have yet to experience. (KNOCK ON WOOD) I’ve attache a picture of what my scar looks like. I’ll be honest, I was expecting to have a lot more of my hair shaved. Luckily, that was not the case! My hair is long enough to cover my scar that has 7 staples. Post surgery, the only things i can say as far as “cons” go…well, side effects of the pain meds (beware!) and the sore/stiffness in my neck. The muscles in my neck are very sore and weak. Other than that, i am feeling better each day and TRYING to take it easy, which is hard given i’ve been placed on “very light duty” which doesn’t even allow me to pick up my 9 month old (He’s more than 10 lbs!)If you have any questions at all or need dr recommendations please feel free to email me! I will be more than happy to share my experience!
It is set for June 21st in Dallas.
Okay, I have hesitated telling people about this part of my life because I didn’t want people to panic or feel sorry for me. But after thinking about it more, I thought it was quiet selfish of me to not share what I am going through in case others where in the same situation or needed help. So…here is the story.
I had my baby in September of 2011. Through out my pregnancy, I had issues with numbness in my limbs, dizzy spells, light headed, and headaches. I have migraines since I was about 16, so this didn’t really matter, but the numbness was a concern. They sent me to a neuro to make sure it was just a part of pregnancy. At the time, they chalked it up to pregnancy. At my 6 weeks check up, I told my dr of my back pain and he sent me to physical therapy for 6 weeks. This helped, but didn’t fix the problem. So, on to Texas spine and neurosurgery. This dr sent me for an MRI of my entire back and neck. This is where the discovery was made…I have chiari malformation. chiari information
So, now that brings me to today. After a few attempts to see a dr in dallas, we finally got in to Baylor medical center and saw a dr to discuss surgery. When we left that appointment, he basically told me that it was up to me as to when I wanted to do surgery and how long I wanted to live with the symptoms. So, as a family we have decided to do the surgery this summer to give myself plenty of time to heal and recover fully. Surgery is scheduled for June 21st. They will go in at the base of my skull, cauterize the tonsils and remove them, snip up 1 inch or so, and close me up. Hospitalization is 3-5 days and then I will have recovery time at home.
I have decided to share all this so that no one is shocked by my stay in the hospital and in case there are others out there who may have this and need someone to talk to. If you have any questions, google is a good source (but take what you read with a grain of salt) or I can answer some questions.
This is my first blog, so we will keep it short and sweet! More info about my life to come!