January 12, 2011
There are things worse than brain surgery. Many things. In the scheme of it all, this is only a minor speed bump. I know that. I hope that my story can help someone else going thru something similar. We all deal differently and writing has been cathartic for me thoughout this whole process.
There are things worse than brain surgery. Many things. In the scheme of it all, this is only a minor speed bump. I know that. I hope that my story can help someone else going thru something similar. We all deal differently and writing has been cathartic for me thoughout this whole process.
In all my research, I failed to ask the question "how will I feel after the surgery?" Maybe that was divine intervention. The first day/night in ICU was just awful. I was not sure I was going to make it and not sure I wanted to!!! Poor Mike having to watch all that. But he was a real trooper and helped me thru the worst of it. I remember seeing Aunt Annette, Uncle Jerry and Jeff during that time too. Thanks for being there for me and Mike.
The surgery itself went well and took about 21/2 hours. The neurosurgeon said it was much worse than he thought. One leak turned into 3-4 leaks but he was able to repair them all. He felt really good about the surgery and even anticipated me going home on Sunday after Thursday surgery, but that was not to be. After they removed the lumbar drain from my spine, I got another leak in my spine! I had horrific headaches. Fortunately, there was a fairly simply blood patch procedure they could do, taking blood from an artery in my arm and injecting it into my spinal canal. Within about 6 hours, the headaches were gone. Really a miracle procedure.
Then a day or two later I noticed facial paralysis. They were about to discharge me but instead sent me for an MRI. Nothing "interventional" was needed...turned out to be Bell's Palsy. I think most people have heard of it or known someone who has had it. The right side of my face is kind of paralyzed and it's mainly effecting my right eye (can't blink or close my eye easily so getting dried out and very sensitive to light.) My face hurts more from the palsy than the surgery I think. But it should resolve itself, hopefully soon!!
Thanks to Jeff, Rachel, Chandler, Ann Marie, Annette and Jerry for coming the night before the surgery. Having friends and family to take my mind off things was a blessing. Then Ann and Rusty got there that first night and thank God for them. My memory is sketchy of the first few days (a good thing) but I know they were by my side the whole time. Then bless their hearts, Ann's son Josh and his fiance Sara came for a couple of days to babysit me in the hospital. Sara is in nursing school so I was in good hands.
The nurses were WONDERFUL...not a single complaint. Well, except the rather rapid discharge on Day 7...but they had 6 neuro patients coming out of surgery and needed my bed so I was rather quickly discharged. But it was all good. We were ready to go home, just scared.
I have been progressing well. My cousins Lynn and Erica (adopted cousin) came from Great Falls the first weekend I was home and REALLY took care of me. They helped me get my first shower in over a week and you can only imagine how good that felt. Erica made my favorite meal (country steak and gravy) and then BBQ chicken the next night. She and Lynn washed our clothes, changed the sheets, etc. Just amazing how loved they made me feel.
Hoping to get my staples out Thursday or Friday but the weather is a problem. The dr's ofc has been closed all week. Anyone have a staple removal kit???
I am thankful for the "crazy ENT" Pablo Stolovitzky who first diagnosed me...even though we thought a brain fluid leak was crazy, he was right. He sent me to Dr. Danko Cerenko who sent me to Dr. James Robinson, who did the surgery. All excellent and caring physicians and I am lucky to have found them. Piedmont Hospital was incredible and the staff some of the best I have ever encountered.
I am on meds for pain, muscle relaxants for the face (facial muscle retracted during surgery), and for seizure prevention. I can't drive for a month at least. No exercise or anything remotely strenuous for a month. So I am following doctors orders and resting. Not getting online much, maybe once a day. The glare of the computer hurts my eye.
Thanks to all who have brought food, flowers, cookies, and given us support. Mike and I are so grateful and can never thank you enough.
wow... thank you for sharing this. It is a very helpful article. I know what you mean when you mention about the frustration of seeing different doctors and wait until they are available. I had a tube inserted in my right ear over 4 yrs ago (I was 32 y/o) due to a chronic ear infection. For the last couple of months I've been having pains and feeling pressure in it, not to mention, some brain loss (not sure if it has anything to do with it, but I've noticed that my brain doesn't function as well as it used to). I went to see a new ENT since I moved out of state and he told me that my body was rejecting the tube, but it wouldn't come out by itself, so it had to be surgically removed. Their nurses took forever to get that surgery scheduled, so I went to see a different ENT, they did the hearing test and it shows that I have lost big part of my hearing, but same thing, they took forever to schedule me for a surgery, so yesterday I finally saw a new ENT and she gave me the option to have it removed in the office with a numbing injection. She finally removed the tube. I feel pain inside, mostly when I put some 'eye' drops she prescribed and I feel it very sensitive when I hear noises. The tube has left a hole inside my ear, they patched it and I have to go back for a hearing test in 3 weeks. I'm really hoping this doesn't get too far. It is frustrating to feel all these symptoms, but like you said, there are worse things that can happen. :) Thank you again for sharing your condition and positive thoughts. God bless!
ReplyDeleteMicita, Where do you live? Could you get to see Dr. Cerenko in Atlanta? If you have a CSF leak which is/was causing the chronic ear infections, you need to get the leak repaired...just patching the hole from the tube won't do it. He was instrumental in my care. He had two patients with my condition at the exact same time (which also sounds like your condition.) Have you had CT scans or MRIs? In my process, there was a time when I started experiencing sudden and more profound hearing loss. Fortunately, it was right before an apt with Dr. Cerenko. You don't want to let this go on too long or the hearing loss could be permanent! Good luck!!!
ReplyDeleteThank you for your post it looks like I may be walking in your shoes very soon. I just was released from a three day hospital stay after undergoing a third c-toma surgery. They found a CSF Leak. It was temp. repaired but I'll need to have this surgery once I heal from this one. May you have continued good health. Take care!!
ReplyDeleteTracy, thank you so much for this blog and for sharing your story! I'm scheduled to have very similar surgery done a week from today. It's so comforting to read the words of someone who has "been there and done that" and lived to tell the tale!
ReplyDeleteTracy, thanks so much for this blog and for sharing your story! I'm heading into similar surgery a week from today. It's incredibly encouraging to read the words of someone who has "been there and done that" and lived to tell the tale.
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