First of all, I want to thank everyone for there friendship and advice! It has all been wonderful...
So, not sure if you remember this from my WI Chiari Center but, Dr Heffez and Dr Broderick wanted me to try Lyrica for 2 weeks, so I did and I'm sad to say it didn't work...... I am no longer taking topomax either (they took me off of that) and I still feel the same...... So, I scheduled surgery for Oct 17th and I'm gonna be his second surgery (I go in at 12:30)
Funny thing is, I'm not scared or nervous or anything like that... I'm more anxious about getting stuff ready around the house and the LONG drive there.. I just want to feel better, and I'm thoroughly looking forward to the pain free days ahead!
Is there anything, that I should KNOW. DO, BRING, ect before surgery? Anything that would make life easier and so on, please let me know!
You know I have no advice to offer on what you need but I am looking forward to what everyone else says. I can’t wait to hear you are pain free and it all went well.
Dr Heffez did surgery on my daughter yesterday and she doing awesome.you really don’t need to bring anything except things that make u comfortable.also u should stay at kathys house because we have met other people with Chiari which really help my daughter and i
Thats AWESOME!!! I'm glad to hear that she is doing GREAT!!!! I didn't plan on bringing much...... Just the things that I don't leave home without anyways. LOL
We are all set up to stay there, I hope, because there is A LOT of us, that they won't want to kick us out. hehehe So u guys will be leaving shortly before we get there huh? Darnit!
So glad you are getting Tx.....I know what you mean about not being nervous about the operation..but getting things in place at home!!!
How are you feeling these days??? Just think, in 4 days you will be on the road to recovery!!!!
Peace,
Lori
PS: I suggest bringing PJ bottoms(so your butt isn't hanging out..those silly 'gowns'...also, I brought a soft fleesey blanket from home..and b/c I am a weirdo..LOL...I brought facial wipes and baby wipes...Lord only knows where the hopsital wash clothes have been!!!!!!!!
I didn't take anything with me except my Aspen Vista Collar - I loved it - it's adjustable up and down as well as around - and it's so soft and comfortable. Someone else told me about the collar before my surgery, so I was able to get one in advance.
I'm glad you are not afraid - I wasn't either. Once I made the decision, I was at piece with it and I just concentrated on how great is was going to be to be "free" - that is free of the worry of what might happen if I didn't do anything and knowing that I was doing what I could to make my life better. Good luck with your surgery. When I woke up the morning after surgery, nothing hurt for the first time in a long time (I know, I know, part of it was the "fairy dust" they had me on; but it still felt wonderful) - I hope it's that way for you too.
Lori - you are so funny - I WILL NEVER THINK OF HOSPITAL WASH CLOTHS AND TOWELS IN THE SAME WAY AGAIN.
Thank You ALL from the bottom of my heart! It's soooooo great having this support!
Lori, I think I will bring baby wipes for sure!! LOL I don't think I can or will think of the towels and wash clothes the same again either! hehehe Definately bringing my IPOD and pillow and a soft fuzzy blanky
Shirley, I have NEVER heard of this collar.. I'm gonna check it out! see if maybe it is something that will make my trip home easier! It's about 11hours. UGH And, I will take all the fairy dust they wanna give heheheheh
Nkp517, Thank you and I hope everything goes well for your daughter and a speedy recovery! keep us posted on her as well!
lilly, Thank you! and what did u find out with your appt? Keep us posted!
You can look the collar up on the internet. I was able to get mine here locally from a medical supply place. You do need a prescription for it though. I talked to my neurosurgeon and he gave me the prescription before the surgery so I could practice wearing it and get used to it. It was very comfortable. After the surgery it was kind of my na na blanket when my neck would get tired even after I didn't have to wear it. I'm real claustrophobic and couldn't wear the other kind because my neck is short. I found the Aspen Vista collar to be very comfortable and I got used to it pretty quick. I still wear it in the car if I'm going a long way or I'm going be out on the freeway.
The fairy dust is good when you are hurting. My doctor's patients don't go to the floor - they stay in recovery the whole time and I had a button I could push if I needed it. After the first couple of days I really didn't use it much though - I think I have a very high pain tolerance AND I'm a little afraid of pain medication.
I hope you are able to get the collar - I think you'll love it.
Hugs
Shirley
luvmy2grls said:
Thank You ALL from the bottom of my heart! It's soooooo great having this support!
Lori, I think I will bring baby wipes for sure!! LOL I don't think I can or will think of the towels and wash clothes the same again either! hehehe Definately bringing my IPOD and pillow and a soft fuzzy blanky
Shirley, I have NEVER heard of this collar.. I'm gonna check it out! see if maybe it is something that will make my trip home easier! It's about 11hours. UGH And, I will take all the fairy dust they wanna give heheheheh
Nkp517, Thank you and I hope everything goes well for your daughter and a speedy recovery! keep us posted on her as well!
lilly, Thank you! and what did u find out with your appt? Keep us posted!
I just wanted to wish you the best of luck tomorrow! I will keep you in my thoughts and prayers! And also pray you have a safe and comfortable trip! (((HUGS)))!
Tomorrow is the day!!!! I am glad that you are relaxed about it.....you will be in good hands..I, like Shirley, wasn't anxious...it was much more anxiety provoking going through all those doctors and get a correct Dx.
You are in thought and prayer...let us know how you are feeling...of course when you are up to it.
I hope everything goes well with your daughters surgery and will have her in my prayers. My daughter is having the surgery on Nov 10th.
I will ask her NS for the Vista Collar I was going to get one of those neck pillows but as the Vista sounds adjustable I think that would be better ~ Thanks for the info!!
She had a panic attack the other day thinking of the whole process, getting into the OR and even the day before blood tests. It is quite a lot for a 15 year old. We will be taking a hospital tour in about 2 weeks so I hope that helps some.
I have been trying to get in touch with other parents who's teenagers had the surgery ~ I am not sure what to expect right after ~ This whole group has given me so much information its invaluable!
I wish your daughter the best of luck. I will also pray for her and for you. If this helps at all I have spoken to a 14 year old girl who had Chiari surgery in August and guess what she played her first basketball game 2 months later. Her parents advise to me was to immediately try to have her move her head from left to right and to continue to have her do that even once she is home. They did say the first 2 weeks are ruff so you and I should prepare for that. Remember everyone deals with pain differently. I seem to be the one who is having panic attacks. It kills me that my baby has to go through this and I just pray and pray that I wish it was me and not her. It is so hard to act so strong in front of them when you are dying inside.For the first time on Friday she cried her eyes out. She told me she was scared and that it is coming up so soon. I know these next few weeks will be ruff for all of us but we have to try to stay positive..
She wears her vista collar now and I assume she will have to wear it after for some time. The doctor felt it was to her benefit to wear it in the car in case we should ever have an accident. She doesn't complain about it she said it is pretty comfortable.Well, I hope this helped. I wish you all the best. Keep in touch!
MrsK said:
I hope everything goes well with your daughters surgery and will have her in my prayers. My daughter is having the surgery on Nov 10th.
I will ask her NS for the Vista Collar I was going to get one of those neck pillows but as the Vista sounds adjustable I think that would be better ~ Thanks for the info!!
She had a panic attack the other day thinking of the whole process, getting into the OR and even the day before blood tests. It is quite a lot for a 15 year old. We will be taking a hospital tour in about 2 weeks so I hope that helps some.
I have been trying to get in touch with other parents who's teenagers had the surgery ~ I am not sure what to expect right after ~ This whole group has given me so much information its invaluable!
Thank you EVERYONE! I appreciate all the positive thoughts and vibes! I will post back as soon as I feel up to it! It has been so GREAT having all of you guys support! THANK YOU!
MrsK and Nkp517, I am having surgery in the morning, not my daughter.. I'm not sure how well I would be able to handle it if it were one of my girls having to go through this! YIKES, good luck to your daughter and her upcoming surgery!