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One year....
Today marks my one year re-zipperversary! I had a PFR done by the AMAZING Dr. Salvatore Insinga at TCI one year ago now. At this time, exactly one year ago, I was being move to recovery and waking up to realize that a severe case of Thrush had devoloped while in the operating room. Waking up surrounded by doctors who were insanly paniced was the scariest thing I've ever experianced in my life.
A year, in essense, is such a short amount of time.
365 days
8,760 hours
525,600 minutes
31,536,000 seconds
But so much has happened in the past year, that just thinking about everything is completely overwhelming. A relationship ended, a cross country move occured, my niece was born and is now nearly 10 months old and the light of my life. Seeing my niece grow every day warms my heart, however....
The pain is still there. The physical pain, the emotional pain. Every sense of pain you could imagine.
I watch my niece a few days a week, however that is my only job. By the end of those couple of days, I'm generally exhausted and spend the next couple of days in bed.
I'm still having the drop attacks every once a month or so, and have seen numerous amounts of emergency room waiting areas, and doctors who fail to find anything wrong with me.
I've given up. I offically decided that Chiari has won, and I have lost...I've gotten to the point where I have accepted this defeat, and will now attempt to live my life.
I know I stink about getting on here as often as I really should...however, I just came on to let all that out...
Also, Selma, thanks for giving me your OR spot one year ago today!
And Happy Zipperversary tomorrow!
You were the best roomie I ever had!
A year, in essense, is such a short amount of time.
365 days
8,760 hours
525,600 minutes
31,536,000 seconds
But so much has happened in the past year, that just thinking about everything is completely overwhelming. A relationship ended, a cross country move occured, my niece was born and is now nearly 10 months old and the light of my life. Seeing my niece grow every day warms my heart, however....
The pain is still there. The physical pain, the emotional pain. Every sense of pain you could imagine.
I watch my niece a few days a week, however that is my only job. By the end of those couple of days, I'm generally exhausted and spend the next couple of days in bed.
I'm still having the drop attacks every once a month or so, and have seen numerous amounts of emergency room waiting areas, and doctors who fail to find anything wrong with me.
I've given up. I offically decided that Chiari has won, and I have lost...I've gotten to the point where I have accepted this defeat, and will now attempt to live my life.
I know I stink about getting on here as often as I really should...however, I just came on to let all that out...
Also, Selma, thanks for giving me your OR spot one year ago today!
And Happy Zipperversary tomorrow!
You were the best roomie I ever had!
Hi Janet, sorry you are still having problems one year after your surgery. I hope and pray things do improve for you soon.
Ray
Ray
COMMUNITY LEADER
LMAO Janet...I forgot about the salt...lol....funny.....
I also forgot u had pudding....sorry, it is just funny now.....
How about the night staff bowling with the boxes in the hallway ....ugh...such inconsideration....oh well.....
"selma"
I also forgot u had pudding....sorry, it is just funny now.....
How about the night staff bowling with the boxes in the hallway ....ugh...such inconsideration....oh well.....
"selma"
The thrush actually lingered for quite a while post op, and occassionally I'll still have issues from it a year later.
I remember waking up in recovery and being surrounded by atleast 10 different doctors. I couldn't figure out what was going on. My dad came in shortly after where I told him that "I felt weird" in compairison to the first surgery. When I spoke to him, I noticed I sounded different.
He then informed me that something was going on with my tounge and thats why all the doctors were around me minutes earlier. He told me just to relax and to keep playing with the little red button, because apparently that little red button makes everything better! (Oh, and he was right!)
The day of the surgery, they had initially thought it was an allergic reaction and pumped me up on allergy medications, to no avail...it wasn't getting ANY better at all.
The following day was spent with many doctors coming in and out of my room to look at my massive tounge.
They had decided that it wasn't safe for me to eat or drink, so I was strictly on IV liquids only...
Two days after surgery I had to do a spit and swallow test They determained I had no esophaugus damage and I could eat very soft foods only. I was put on a BABY FOOD and pudding diet. Not too fun!
When I got moved up to 4-Cohen, I was still on this diet, however, the morning Selma got moved in my room, I was able to eat soft foods, like scrambled eggs. (Don't worry Selma, you can have my salt, I don't need it!)
By the time I left, the swelling had gone down a bit but it was still pretty tingly.
After a few weeks at home, the swelling was gone, however, food still didn't taste right, and I'd get this tingly (burnt( feeling in my tounge. I called my ENT, and went in and saw him
He told me the breathing tube most likely damaged a nerve in my tounge and I'll be fine...eventually...
Maybe a day or so a week my tounge will just feel weird...kind of like I burnt it drinking coffee...
If this was my only issue post-op, I'd be happy!
I remember waking up in recovery and being surrounded by atleast 10 different doctors. I couldn't figure out what was going on. My dad came in shortly after where I told him that "I felt weird" in compairison to the first surgery. When I spoke to him, I noticed I sounded different.
He then informed me that something was going on with my tounge and thats why all the doctors were around me minutes earlier. He told me just to relax and to keep playing with the little red button, because apparently that little red button makes everything better! (Oh, and he was right!)
The day of the surgery, they had initially thought it was an allergic reaction and pumped me up on allergy medications, to no avail...it wasn't getting ANY better at all.
The following day was spent with many doctors coming in and out of my room to look at my massive tounge.
They had decided that it wasn't safe for me to eat or drink, so I was strictly on IV liquids only...
Two days after surgery I had to do a spit and swallow test They determained I had no esophaugus damage and I could eat very soft foods only. I was put on a BABY FOOD and pudding diet. Not too fun!
When I got moved up to 4-Cohen, I was still on this diet, however, the morning Selma got moved in my room, I was able to eat soft foods, like scrambled eggs. (Don't worry Selma, you can have my salt, I don't need it!)
By the time I left, the swelling had gone down a bit but it was still pretty tingly.
After a few weeks at home, the swelling was gone, however, food still didn't taste right, and I'd get this tingly (burnt( feeling in my tounge. I called my ENT, and went in and saw him
He told me the breathing tube most likely damaged a nerve in my tounge and I'll be fine...eventually...
Maybe a day or so a week my tounge will just feel weird...kind of like I burnt it drinking coffee...
If this was my only issue post-op, I'd be happy!
COMMUNITY LEADER
Thrush can be diff to get rid of and in Janet's case her tongue was so swollen she had difficulty speaking....and she had it the whole time in the hospital...it did get better just b4 she left, but I don't think it was cleared up completely for a while after she went home.
Yeah u get a think dry feeling ....and sore....but I remember wanting ice and water to get rid of the feeling....I thought I could wash it away...it was like sawdust caked my throat.....
No Fun : P
Yeah u get a think dry feeling ....and sore....but I remember wanting ice and water to get rid of the feeling....I thought I could wash it away...it was like sawdust caked my throat.....
No Fun : P
When I was in surgery they scratched my throat with the tube too...I didn't realize it right away but after a day or two it just felt gross and I started to get worried about it...so you are right, it would have been nice to have know b4!! Lucky for me, I didn't get thrush from it...
How werid - I have never heard of that happening or even anyone mentioning it to me. I have had eight surgeries and never once have I heard of that. That's why I was so curious. I hate how they think what you don't know can't hurt yot LOL - I would at least like to know of the possibility of somehting happening that way if it does I am not taken off guard by it!
COMMUNITY LEADER
Not sure if Janet is on to answer, but u can get thrush from being intubated, it the tube scratches ur throat u can get thrush...it is not uncommon for this to happen, in fact, for a diff surgery I also had it and when in the OR for my PFD I said something to the anesthesiologist and he said he would use the smallest tube and be very careful...I didn't get this time....
"selma"
"selma"
I meant to ask earlier but I forgot LOL - how did you get thrush while in surgery? How odd!
COMMUNITY LEADER
Yes I am on Selma Snurd.....
I am glad u will be seeing ur dad....and some of this mayb we should PM...lol....
I am glad u still r in touch with Josh.....he was a very nice young man and cared deeply for u.....
How nice would it be if the MRI's all said this is the problem right here and it will make u feel like this....lol....the not knowing just drives u nutz.
I remember how u were back in the hospital then u moved to TX...haven't heard much since...I was hoping u were getting better.
They r great!...the wedding is planned for Oct 1st...she has her dress and bridesmaids dresses....so we r getting closer ......
I am glad u will be seeing ur dad....and some of this mayb we should PM...lol....
I am glad u still r in touch with Josh.....he was a very nice young man and cared deeply for u.....
How nice would it be if the MRI's all said this is the problem right here and it will make u feel like this....lol....the not knowing just drives u nutz.
I remember how u were back in the hospital then u moved to TX...haven't heard much since...I was hoping u were getting better.
They r great!...the wedding is planned for Oct 1st...she has her dress and bridesmaids dresses....so we r getting closer ......
My dad is good...he's actually coming to visit tonight for a week and a half, so that'll be fun! Josh and I still talk a little...he'll be here for a week in September for work and he's wanting to meet up, but I'm unsure if I really want to do it or not...
I have no idea where these issues are coming from! I did well for the first almost 4 months after the revision, but have been quickly spiriling downhill!
How are your daughter and Josh doing?
Do you have a facebook?
I have no idea where these issues are coming from! I did well for the first almost 4 months after the revision, but have been quickly spiriling downhill!
How are your daughter and Josh doing?
Do you have a facebook?
COMMUNITY LEADER
Janet!!
I was thinking about my roomie !!...How could I not....awww...How is ur dad?
Are u still in touch with Josh?
SO how is TX? and ur niece? or nephew...goodness ur brothers child...lol.....
I am so sorry to hear u r still dealing with issues...do u think they stem from the first PFD?
I can not believe 1 yr has passed....but so glad to hear from u : )
"selma"
I was thinking about my roomie !!...How could I not....awww...How is ur dad?
Are u still in touch with Josh?
SO how is TX? and ur niece? or nephew...goodness ur brothers child...lol.....
I am so sorry to hear u r still dealing with issues...do u think they stem from the first PFD?
I can not believe 1 yr has passed....but so glad to hear from u : )
"selma"
Wow...it sounds like it has been a year of struggle...I'm so sorry that you haven't seen some more relief.
Just remember living your life the best you can is not admitting defeat, it is fighting!! I can relate, after only 5 months post op I am discovering that there are things I may never get rid of and that I will have to learn to live with. But we can still fight Chiari by not crawling into bed and pulling the covers up over our head and resigning from life...
It sounds like you are still fighting to me by watching your niece and still trying to live your life...but living with pain and drop attacks is the worst and I'm so sorry about that..
I don't think we've ever met (lol online if you know what I mean) but I really want to send you strength and prayers that you will see some relief eventually..
Take care!
Carolyn
Ps: Selma--One Year Tommorow....WOW!!
Just remember living your life the best you can is not admitting defeat, it is fighting!! I can relate, after only 5 months post op I am discovering that there are things I may never get rid of and that I will have to learn to live with. But we can still fight Chiari by not crawling into bed and pulling the covers up over our head and resigning from life...
It sounds like you are still fighting to me by watching your niece and still trying to live your life...but living with pain and drop attacks is the worst and I'm so sorry about that..
I don't think we've ever met (lol online if you know what I mean) but I really want to send you strength and prayers that you will see some relief eventually..
Take care!
Carolyn
Ps: Selma--One Year Tommorow....WOW!!
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