So, I am only 3 days out from learning I am going to have to have surgery. Honestly, I am going back and forth between nervousness and peace. Is that weird?
I am just really more concerned with after surgery than I am the surgery it self. I guess I will get more nervous once the date is set.
Hi MicLou,
Your feelings are 100% normal in my opinion!! I had surgery Aug 08..it took a while to feel/see positive results..but they came....I was in ICU for 1 day then in a regular room for a week.
I am happy I had the it done...In the recovery room after the surgery ..they make sure you are comfortable before you go to ICU...
Once I was home I had dizziness and weakness...totally natural is what I was told.....and in time it did pass..Thank God.
When do you see the surgeon again and get a date???
I am so glad you started this topic...there are others here who are waitng on surgery too...
You are not alone...please keep us posted on whats going on and how you feel.
Blessings,
Lori
Thank you for the validation! I appreciate it! Thank you also for the info on the hospital stay. I think that part is what makes me nervous, but the doc said something about only being in 2 days, but I can't believe that.
I go back to the surgeon June 30 to set up a time. He wanted me to have time to process all of it and then to make arrangements at work.
He said that I would be out 2 months for recovery. Does that sound right?
lori said:
Hi MicLou,
Your feelings are 100% normal in my opinion!! I had surgery Aug 08..it took a while to feel/see positive results..but they came....I was in ICU for 1 day then in a regular room for a week.
I am happy I had the it done...In the recovery room after the surgery ..they make sure you are comfortable before you go to ICU...
Once I was home I had dizziness and weakness...totally natural is what I was told.....and in time it did pass..Thank God.
When do you see the surgeon again and get a date???
I am so glad you started this topic...there are others here who are waitng on surgery too...
You are not alone...please keep us posted on whats going on and how you feel.
Blessings,
Lori
Hi...
Some folks do get out of the hosp. in 3-4 days...however, my doc kept me b/c of nausea , dizziness .
2 months and you should start feeling better and stronger...my experience was it took about a yr to feel 'right'..not to say that during that yr. i was ill and in bed..no, absolutely not...I just didn't feel 'right'...My surgeon explained it to me this way....
Something to this effect.."I can say with pretty good certainty that your CSF was not flowing correctly your entire adult life..If not your entire life....So it stands to reason that your brain has to adjust to the new flow of CSF and that can take a long time"
Oh..tip here...be sure they give you a stool softener or something ...b/c the narcotic meds will back you up and that can be hell!! My doc ordered Senocot and colace and I ddn't have a big problem with that.
We are here for you..take a deep breath ...I hope it helps that you are not alone..I know it helps me ...this Chiari can be a lonely condition.
Blessings,
Lori
That's not weird at all! You are probably feeling relieved at having answers and scared at the thought of the surgery. You have a lot a resources in front of you. Especially here on this site. There are tons of us all at different stages of surgery. Post/Pre op, and those who haven't had surgery, those who have had other operations, and even some who have had surgery more than once. Ask as many questions as you can think of. You have a big advantage of getting to talk with a lot of us:) There are a lot of things posted on here as well from Abby and some others. Check under "resources" at the top and look through the discussions. There are links that explain the surgery or have stories from others.
I had decompression surgery about 3 months after I was diagnosed. I was 15 years old at the time. I honestly was only worried about the pain stopping and the fact that my hair would be cut off. I didn't think to use the internet to research it. I didn't even really bother remembering the name/looking up others who had it or even asking questions. The only thing I wanted to know was would it stop my pain. At the time I was waking up every day puking from the pain. I couldn't turn my head a lot of days or even see clearly. I missed a lot of school. It was good I had surgery when I did.
My NS said my skull was eggshell thin from the pressure. It took me about 3-4 weeks to get back on my feet and start doing things as normal as possible. It is completely different for everyone though.
Once I started hanging out with my friends and going back to school...getting back to things I used to do..I felt more like myself. I just had to take it a day at a time. Sometimes I had to take it moments at a time. But you will know your own limits.
<3
Alicia
Everyone here has given you a lot of good advice. I am three years post-op and am feeling like my old self more and more. Not to say I don't still have problems because I do. I have symptoms that I didn't have before and some that I still have. I will say that the decompression stopped the progression of things getting worse or causing paralysis. It did also help me with the severity of my symptoms. I don't have as many headaches and the weakness in my arms is not near as bad. I also had to have a shunt put in to help with the CSF flow after the decompression surgery. It is rare though that people need a shunt. I was in ICU for 2 days and 2-3 days in a regular room. I hope they don't release you too soon. You need to have the pain under control before going home, but most doctors/nurses are really good about that. It is scary, but know that there are lots of us out here that have been thru this and we have survived with flying colors!! Please keep us posted so we know when you will be having surgery.
Love,
Carla
Hi MicLou,
Everyone is different as far as recovery goes. I was in ICU the first night, then transferred to a regular room in the A.M. As soon as I got into the regular room they sent in the Physical Therapist who had me up moving around. I'm not going to lie, there was some serious pain going on. But I discovered that the more I moved the less pain I had. And the first time I sneezed after surgery was quiet an experience. Talk about head pressure. I'm happy to say that I am about 5 1/2 months post op and most of my pain is going away. Still get the occasional weird random head pain, but the pain I felt right after surgery is turning into a distant memory (thank goodness). Of course you are nervous, who wouldn't be. To not be worried would be troublesome. Have faith that all will go well and know that we are all here for you to help calm your nerves and discuss anything weighing on your mind. Take care and keep us posted.
Jen(snurbette)
Jen..So glad you are doing so well ..also ditto what Abby said..glad you are here!!
MicLou....I am so happy that you are sharing your feelings with us...we have been there....Just know that whatever we can help you with...we will all do our best to do so...Hang in there!!!
Blessings,
Lori
Please don't be...i was actually going thru "I'm doing it" to "the hell with it, i'm scared"...I would do it all over if i had to. My surgery was may 9th..just a couple of weeks ago and i'm already driving since last week and returning to work as tolerated...
Honestly, please, don't fret and do not be scared or worried. You will feel what is normally called surgical pain..the discomfort of knowing that you have been operated on but you will be very well medicated. I was in ICU for 1.5 days and in a normal ward room for 1 day and sent home. I cannot remember the ICU experience, i was medicated and in great care.
Pain, I don't remember and that's how you'll be...the only discomfort was the nurse removing my bandage because of the tape and my hair which of course is normal but that lasted a few seconds. I was home in less than 3 days from the surgery and in my bed cuddling up and being pampered by my sister which i loved. You will be able to get up and take is slow...you are going to tell yourself like I did "that you worried and made yourself sick over this for no reason" ..trust me. Let me know how you are doing and i pray that all will be good for you....
p.s. the only thing i didn't like is the fact that my hair was shaved a bit and it kinda itchs growing back in thru the scar..
p.p.s. i prayed a lot beforehand, actually i pray all the time, but my NS prayed with myself, my husband and a couple of members of my church prior to leaving for the surgery...it helps and eases your mind and puts you at peace which is a great feeling...I prayed to GOD to put his arms around me during my surgery and recovery and help me with my struggles with pain and control...he did and i praise HIM everyday...
i'm not trying to preach to you but let you know that the power of prayers work.
Marye,
So true....the power of prayer...I am glad you are here to share with us!!!!
Love,
Lori
we will be thinking of you during your appointment,
please keep us informed on how it goes,
we are here for you
joelene
I have set a date for surgery. The not knowing and waiting were driving me crazy. So, I called and have gotten on the schedule. It will be July 12th. There is a sense of relief just knowing the date.
I want to thank you all of you for your encouragement! It means so much to me.I hope that I can be there for you all!
MicLou,
I am glad that you have made your decision and set a date for surgery. Now you can move on with getting prepared for surgery and making arrangements for your recovery. Do you have family that can take care of you for a few weeks after you get home? Or maybe a close friend? It is important to set these things up ahead of time. If you have any questions about surgery or recovery, please let us know. There are lots of us out here that have been thru what you are about to go thru.
God bless,
Carla
MicLou,
Hi...I hope that having a date will give you some ease....Carla makes a good point about having family or friends around after you get home from the hospital.
I also made sure I brought stuff from home to the hospital..like a plush throw blanket..which I ended up using for my head..i put it on top of the pillow..what a difference it made on the incision! I also brought sweat pants, jammie bottoms..b/c I didn't want my behind hanging out!! I am weird when it comes to some things....well..I have worked in hospitals (many yrs ago)..so I am leary of hospital face clothes!!! Brought my own and baby wipes!!
It will be here b4 you know it and they will make sure you are comfortable in the recovery room b4 you go to your room..usually , it is 1 night in ICU..then off to a regular room. Looking back..it will be 3 yrs this Aug.....it really wasn't that bad...of course , going through it, I felt like crap for 2 weeks..but it is funny how life works, for me anyway...I truly have to think about the post op pain, now..So, I guess , it couldn't have been all that bad....LOL
Oh...one thing I suggest...if you can speak to the NS b4 surgery..see if they can wrap your head(incision) kinda like a mummy instead of a bandage...I say this from my own experience......my NS's Physicians Assistant closed my incision and the next day when he pulled the bandage off..I am not proud to report a said a few choice words to him!!!! LOL
The dried blood on the bandage was stuck to the incision and surrounding hair!!! That hurt like a son of a gun....but I lived..LOL
If you ever need to talk..we are all here for you.
Blessings,
Lori
MicLou im glad you have a date,
now comes the part you need to emotionally prepair for it, And you can do this,
we are here every step of the way.
joelene