Surgery is Scheduled!

[survivor08]

I am scheduled for decompression surgery with Dr. Heffez July 6.  We are flying in on the 5th and I have my return flight scheduled for the 14th- sure hope nothing goes awry beings these fights cannot be changed without a hefty penalty!  LOL

I havent been on the forum here in a long time.  Mainly cuz I just havent felt like it, which, believe it or not, is a symptom of CM  - at least that is how it feels - I get an "overwhelmed" feeling when I know I should do something or need to do something.  Like I just cant do it, so I just dont.  And reason why I attribute it to CM is because I have only been this way for the past year, same time other symptoms began to develop.

Anyone else feel like this?

[sheila53213]

shanmomof3- thank you so much for all the tips and advice. it is definitely making it easier to comprehend and make sense of it all. I email Renee every couple days with something I think of. Thank heavens she is such a ray of light there that she doesn't mind all the questions. I'm sure she has answered all of these questions a thousand and one times and I'm sure it won't be the last time either.

cmoeller-I have curly hair too...and boy it is not a pretty sight in the morning to wake up to...now i can't imagine how it is going to be after days of not washing...i may just have to pull it straight that morning before i go in so it's not so bad. Then I won't look like medusa for a few days...lol.

[survivor08]

ICU?!?!?!?  I didn't know we go to ICU.  But, I aint "skeerd" because God has revealed this herniation to me, this board, Dr. Heffez, Kathy's House, AND "Ali" my cab driver!  So, I suppose if ICU is necessary, then I got some nurses to witness to there also!  LOL

[zygy]

I will be sending happy thoughts!  Keep that outlook as positive as you can, you never know, it might just go great!!  I am almost 3 weeks out from surgery and doing pretty wonderful.  Of course the neck and head are still sore and I don't have full movement but it is not too bad.  I kept telling my husband I was going to be a superhero in surgery and he kept laughing at me.  Surgery and recovery did go great for me.  I ate crackers the first night, stepped down from IV pain meds the next day to just the oxycodone and was eating full meals starting at breakfast the next day... I mean real food, they sent me eggs and coffee and toast.  I did not puke and was allowed to continue on real food.  I kept the pain meds as low as possible so that I did not have additional problems from it.  I walked the day after surgery too, once I could prove the quick walk they were willing to remove the cath and also let me sit in a shower (which was amazing)  Of course I was tired, sore and did not feel great but I was doing so much better than many of the stories I read and it made me feel great.  There really was not much sleep, with so many checking on things so it was very obvious that I wanted to get home as soon as possible.  You may want to be taken care of longer where you have to travel.  I was lucky to be about 7 miles from the hospital.  I knew I could go back quickly if needed.  I bugged them the second night about going home and they kept laughing at me, but on my second morning when the Dr's came around for rounds they thought I was doing great and agreed to send me home.  48 hours after I left the OR I was leaving the hospital.  I did have the regular decompression with opening of the dura and removal of the top vertebrae.  Your hair will be disgusting, nothing compares to that it was so gross and even smelled, I was allowed to wash after five days and it was just in time,I did not even want to sleep with me.  There have been frustrating days when you are just sick and tired of the pain of recovery but most days I am still just happy to be doing so well and happy to be able to treat the problem.  I think I was lucky to do so well but it does show that it can go well!!!  I am not driving yet because my head is not turning enough but I am starting to do some of the work around the house and riding in the car is not so bad now.  I hope things go well and you recover quickly!

[shanmomof3]

Oh, and this is very important! They will give you Senakot (or stool softners) while you are in the hospital and a script when you leave. Take these religiously!!! If you dont you will end up in the pain i have been in for the past 3 days! And you wont think you need them at first but as long as you are taking the pain meds you will need the others! Just a heads up ;-) also, if Renee hasn't told you someone can stay with you in ICU too. I didnt have anybody the first night but then i didnt even know i was there lol but my DH stayed the 2nd night (i think more for his peace of mind than mine) Blessings ~ Shannon

[shanmomof3]

Sheila, honestly i dont remember the first night or much of the second day because i was so sick, but i am Not the norm! I do know they brought me a tray while i was in ICU (clear liquids) but i couldn't or wouldn't eat any of it. They will get you lemon or cherry icee things (italian ice) but you may have to ask for it. And yes someone can stay with you up until you go to the or. My husband went back with me when we first got there and then later they let my parents and my aunt come back too. So i had 4 people back there when they came to take me away. And i made them wait say we could pray together before i left.

[*Stormy*]

Well I guess us Chiarians are stinkier in Canada!!! I wasn't allowed to have a shower for ONE WEEK!! They didn't even get me up for a sponge bath until day 3!! Maybe something to do with our crappy publically funded health care...they waited until I could do it myself b/c they don't have enough nurses. I don't know why but my NS said no hair washing for a week.

Now imagine this...curly hair that gets matted after one day combined with surgical bed head = something like Medusa...very scary, I guess that is why I wouldn't let anyone take pictures!!

Carolyn

[selmaS]

Hi...I was given liquids while in ICU along with watermelon Italian Ice..which was my fav to have...but that was for the first 2.5 days bcuz I was getting sick from the morphine.

Everyone is diff and so is every hospital.
Shannon will be able to tell u when she was able to eat, but she also was getting sick.....

"selma"

[sheila53213]

Thanks so much for all the tips. I really appreciate it. Anything else....just let me know...lol.
when did they allow you to start eating real food? Not that I eat all that much anyway, but still. and did they hook you all up before you go in and can someone stay with you until you are about to go to the OR?

[shanmomof3]

just thought of something else lol The day they release you have the nurse call your prescriptions in to the hospital pharmacy (which is on the first floor) and then you dont have to stop anywhere when you leave

[shanmomof3]

oh, one thing i did have was dry shampoo, its in a can like hairspray, and you just spray it in and then brush your hair out. It took care of the greasiness, and i had my mom do it for me but she only put it on the top part of my hair.

[shanmomof3]

selma's right you wont even be worried about it! I think i got the cath out on thurs. Once they get you up and walking they will take it out. I got several sponge baths in icu but that was mostly from me being sick so much. Now i know selma's was longer and probably because of the glue instead of staples, but for you two ladies you will get to take an actual shower the day they are going to release you from the hospital. The facial wipes were a good thing though.

[selmaS]

Ur DH is sooooooooo right...it is not going to be something u care about while u r feeling like that...the meds take care of not caring....lol....

Plus, I am sure u will be very clean going in......no worries, we all get thru it.

awwwwww, my DH did not offer, but he did help me once I was at home...getting in and out of the tub was a real effort for a few weeks.

[sheila53213]

OMG!!! I never thought of these things.....i.e. no bath, potty in bed, sponge bath....seriously. lol....i really did go and cry over lunch....I called my husband and he asked me what is the matter and I told him adn he just laughed at me. Telling me that is the least of my problems...lol...which I toltally agree but still....he did offer to sponge bath me though. How sweet! And not washing my hair for 3-4 days. just gross. I'm totally going to put the word "grease monkey" into effect on that. lol.

survivor08....we should try and meet up in between my surgery and yours.

[selmaS]

Trust me...u will not be aware of ne of that while u r in ICU...once u r feeling better u get a lovely sponge bath.....Once I was moved to a reg room, and my DD was able to visit I had her help remove all the glue gunck (sp) left by all the leads.....very sticky....I was able to bathe myself via  a basin.....and it did feel soooooooo good.

U can';t wash ur hair right away either....lol....

Do pack some facial wipes and the other ones too :* )

"selma"

[survivor08]

I am definately ROFLMBO!!!!!  (rolling on floor, laughing my butt off)

Three days with no bath + a cathedar = PEEEEE UUUUUUUUU!!!  And can I get an "uuuuuuu groooooosssssss"!?!?!

[sheila53213]

ok...now I'm really freaking out....does this mean also that I can't take a shower for at least three days? What am I going to do? I know this is the least of my problems but still......oooooohhhhhhh mmmmyyyyyyyyyy ggggggoooosssssssshhhhhhh! and the whole "potty in bed"......OMG! Not looking forward to that either. I think I'm going to cry now....lol....again.

[survivor08]

Ummmm, so I already know the answer, but........does this mean "potty" in the bed?!?!?!?!?  Oh my.  I never considered that.......................Ohhhhhhhhhhh Myyyyyyyy

[shanmomof3]

No sweetie dont expect to be up and walking around in 12 hours lol They wont even let you put your head up by 10 degrees until at least 24 hours after surgery, and you wont be allowed to get up and walk til wed or thurs. Read my latest thread "My surgery and recovery" and it may help you, but remember we are all different even if we have the same dr ;-) Blessings ~ Shannon

[survivor08]

Shannon, I am actually very encouraged that I will hopefully feel as good as you after surgery.  I told Renee that I handle surgery really well.  I had a double mastectomy in Feb 2008 and I was up and walking around 12 hours later.  But Renee' said I wouldn't be able to be up too much right after b/c CSF might leak?  Anyway, I pray I will bounce back just as quick.

Elizabeth, thanks for all the info on Kathy's House.  Because of all you guys giving me this info, I have just gotten my referral and already talked with them to reserve my spot!  :)  They are going to let us stay there the night before surgery b/c we are flying in on the 5th but dont have to be at the hospital till 1:00 on the 6th (surgery is at 3:00)  Then they have me scheduled to come back once released from hospital till I get released to fly back home on the 14th.

Sheila, I had to have another MRI and TONS of blood drawn and every single person I came in contact with was absolutely FABULOUS!  :)  So I figure they will be great in July too :)

[sheila53213]

Good Luck with your surgery! I'll be having mine the week prior to you with Dr. Heffez on June 28th. The hospital staff at St. Mary's is just simply amazing. I live in the area here so I know first hand about the hospital. I delivered my oldest son there and have been to the ER on way too many occurences. No matter what part of the hospital you go to, they are all very welcoming and overly nice!
Good Luck again and you'll be in my prayers that you have a successful surgery and a great recovery.

Sheila

[n40066]

i had my surgery done by dr. h on 11/23/09.  the hospital staff was amazing...i never had to wait for anything other than the surgery itself.  for whatever reason i went in an hour or two late, but no worries!  i stayed at kathy's house too.  it is 60,000 sq. ft. that is filled with love, compassion and understanding!  it was so nice when i couldn't sleep to be able to walk into the kitchen and grab a snack or drink without having to get dressed!  felt just like being at home.  the owners are wonderful people and opened kathys house as a tribute to their daughter that had cancer and passed.  robert will most likely be one of the first people you meet.  he has a rather dry humor that may put you off at first, but he's a great guy.  he made me smile more than anyone else there!!  it was also realllllly nice for my mom.  she stayed with me the entire time and it was good for her to have some other folks around to talk to and share stories with.  

so listen to shannon.  save yourself a small fortune by switching from a hotel to kathys house and give yourself and whoever goes with you a wonderful memory and true peace of mind.  just call renee and ask her to call them with a referal.  then make your reservation.  please tell everyone there that elizabeth harris said hello and sends her love!  : )

you can check out kathy's house at kathys-house dot org

[shanmomof3]

Lol I had people that said the exact same thing when they found out i was havin surgery! And i said the same thing "You wouldn't want be around me if i acted how i felt!" My family knew and could tell when i had done to much, but most people didnt know. Even now after surgery people have said "You sure dont look like you just had brain surgery" lol I'm not sure how you are suppose to look HaHa But i do want to warn you, and we say this all the time here, but take it real slow and dont over do it!!! Even when i got to Kathy's House after leavin the hospital i felt so good compared to before surgery that i was doin more than i should have! Not that it was anything major but just being up and walking around can be too much and you wont realize it until you are really hurting! Just based on your posts i have a feeling you will be like me and want to do things for yourself and end up regretting it later lol ~ Shannon

[survivor08]

WarriorMomma - Thank you for making me laugh :)  I think you are right about everything you said!  For me, the things I HAVE to do, is what wears me out, making me too tired to choose anything else.  I am a personal trainer and it has gotten to where after just one client I am in so much pain and so slap worn out.  I dont dare let them know it, which takes TONS of effort, so that when they leave, I pratically collapse!  And the days I have 4 clients in a row, I want to throw myself in front of a truck I hurt so bad!!!!  LOL

The good thing is that NONE of my clients knew I had this pain or these symptoms until I sent them an email this past weekend regarding surgery and why I am having it.  For that I can only say it is the mercy and grace of Christ I am able to function as "normal" when it is required.  They say "you don t look or act like you are in pain!"  And I say "perfect!  Cuz would you come to me if I looked and acted how I felt inside knowing now how much pain I am in?"  They say "no, your right.  Who wants a "moaning" trainer!  LOL  Praise God He gives me what I need when I need it!

I actually find it a compliment when people become aware and say to me "I had no idea!"  That actually makes me smile.  Cuz as all of you will agree, if we acted on the outside according to the pain on the inside.........no one would want to be around us!

Cmoeller -  I am with you!  "Yippee!!!!  I am having brain surgery!!!!"  Yes, I am excited and looking forward to having it behind me!  Only us "CM-ers" can appreciate that when all else has failed, "cut - it - out" gives us hope!  And hope gets a "YIPPEEE" from me!  LOL

Shannon - Thanks for the info, I will def check into that!

[shanmomof3]

Kathy's House is a hospital hospitality house and you must have a referal, but Renee will be happy to give you one and call them for you. Its a big house with a huge kitchen, dining room, and great room. There is also two tv rooms, a library, and downstairs is a play room for kids, an exercise room, and a laundry room. There are about 20 guest's rooms that are like a hotel room with 2 double beds, a couch and/or a recliner, and a private bathroom. They have a van that will even pick you up at the hospital and take you to the airport. You can stop by a grocery store and pick up things to cook, but there is also a lot of stuff already there that people donate, and sometimes they have groups that come in and fix a meal for the whole house. They ask for donations and the average is $50 a night. Thats all i can think of right now ~ Shannon