Beeba, thank you. I am actually sorry that you have to resort to a surgery routine, the journey leading to that as a necessity i'm sure can not be a great one, but I appreciaate that you took your experiences and help others. Your list is great. More than I actually need, no husband, no kids, but so very helpful. Thanks again, I'm sure you get tired of that question but it is certainly not unappreciated! Warm Wishes - TracyJessica
Beeba said:
My surgical routine - and yes sadly I have one. 1. Check into stores grocery delivery services. Many like giant(peapod), and Safeway have them. It is a great way to feel you are still contributing yet it is all done with just a few clicks and takes just minutes. They deliver right to your kitchen and it is a minimal charge.
2. Clean. Mostly organize things. And show husband how to wash the sheets. You will want to come home to a nice fresh smelling bed. Have extra pillows of all textures for propping.
3. Buy a cheap little trash can ($3) line it with two plastic shopping bags. Hopefully you will never need it but with pain meds it can hit fast and hard and it is good to move around with it. And definitely have it for ride from the hospital. Better to have and not need than need and not have.
4. A heating pad. Squishy ice packs at least 2 to rotate.
5.make sure school knows what is going on and to bump spouse to the "emergency contact" teachers need to know what is happening in their kids. Also you want to feel comfortable being able to turn your phone off - moms just don't like doing this!! But you have to or people call to check on you and end up just waking you
6. Be aware that pain meds really mess with your sleep cycle. You live on a 24 hour cycle instead of the normal 16 awake 8 asleep. So ya just gotta go with it. But when you are up at 3 am - I do like to warn people - infomercial all of a sudden make perfect sense. This is a financial warning!! Lol. Cindy Crawford looks that good from good genes, no pillow will really make your head feel better and carol Burnett is very funny but you don't need a years worth of videos that when you are better you will never have time to watch. And just because these really are the only people happy to talk to you at 3 am - they are not your friend!!! (My husband said I was the only person he knew that could spend money from icu- but everyday was like Christmas!!)
7. There is a pill app or the old fashioned pen and paper. Use them. Write down exactly what you took and when. As much as you think you will remember - you won't. You don't want to miss a dose or even worse overdose. Document it while the pill is in your hand and going down the hatch. Something as simple as a phone ringing can throw you. You will have the attention span of a 2 year old - squirrel!!
8. Limit visitors. You just need to sleep and you don't want the pressure of entertaining other. Despite their good intentions - people come over and you turn into a hostess.
9, for showers - have someone within ear shot. You should be fine - but an ounce of caution. Showers can cause a bit if dizziness
10. Have your sick food on hand. Popsicles,soup and ginger ale.
11. I was allowed to shower at hospital - bring your things.
12. Get hair trimmed and comfortable - you won't want to do it later.
13. Definitely ear phones - if you can download some shows do it. Hospital tv stinks - especially on the weekend. I learned how to breast feed again about a 100 times. My 12 and 8 year old were not thrilled. I finally fell in love with the sopranos on 7 years after the show ended. But I did feel the urge to 'whack" my rude roomie.
14. As soon as you do your last talk with anesthesia - ask for the relaxing medicine before surgery. Never been denied and makes those last few minutes more enjoyable and less likely you will jump off the table and run out butt exposed.
15. Know that right up to the last second - if you want out - you have free will. Keeping that control in mind allows you some feeling of comfort. In your head you will cancel all the way to the hospital - that is normal - but I have yet to hear anyone on the table actually say - get me out. But know you can. Screwing up your surgeon, the hospital or anything else is not your problem. You won't do this but I liked knowing I could.
16. Rest, rest, rest!!
17.do trial runs with the kids. Like pick ups, drop offs and after school sports and such so you can relax and not get that call because someone can't find your kid who gets dropped at one end of school but picked up at the other end. You don't need that anxiety.
18. Let the kids help. They can always lay in bed next to you and babble about day and do homework. Go easy in the parent guilt. You are doing what is needed to be a good parent. You are showing strength and courage.
19. Warm socks with grips in the bottom. You get some crappy ones from the hospital - nice ones are better.
Thanks. I got the shoer stool. Have already been warned about possible dizziness, & shocker, I am a chiarian who is a clutz already! I will send someone for dry shampoo if showering is not allowed, & if I can not get my hands on socks with grips at last minute, I ill vow to always have sneakers or some sort of "safe" shoe on! Thanks again. The more info I get, the less I worry! - TracyJessica
Beeba said:
And do want to reiterate if home alone - definitely socks with grips. And carry your cell phone even to the bathroom or to walk to kitchen. Have it at all times. I do it still like my own medical alert. Meds and a change in cerebral flow and blood flow can hit quick, better safe than sorry. Also you may want to invest in dry shampoo because I have heard of some who are not allowed to shower for weeks. I would have freaked out!!! But at least you will feel clean.
oh, wow! I hope that works for you and I hope you have the means to travel. Have you seen anyone by you that is chiari knowledgable? I am assuming no for you to ant to travel to Wisconsin. Is your insurance giving you a hard time because it is out of state or because he does not accept the insurance? And if you do not mind me asking, where are you at with your symptoms? Hugs - TracyJessica
CShinaberry said:
I live in Virginia. A friend I graduated with had a 5 mm Chiari. Dr Heffez did her surgery. I chose him to get a second opinion on my scans. Wasn't sure who to go to.
I pray this is a turning point for your life. I’m truly sorry about your separation, but I am optimistic for you and your future. Don’t forget you have a bunch of friends here for you!
Have you counted on the calendar for your monthly? I started while I was recovering from surgery. Needed extra undies and fem hygiene products..hospital ones can kind of suck. A bathrobe and non skid slippers cuz the hospital gowns are open in the back. Pajama bottoms and sweats are good too.
I brought a feather pillow and a soft blanket to wrap around my head/neck to help support while I slept sitting up and used the hospitals under my arms.
Your throat and mouth will probably be dry from the oxygen and tubes from surgery so your fav lip balm and hard candies to suck on when your able, or I used binaca spray so I didnt choke on candies.
Pony tail holders to keep your hair off incision or out of your way.
Flushable wipes cuz whiping can hurt to stretch so cutting that time down helps.
Best wishes to you! I was lucky to have a very good surgical experience. I was only in the hospital overnight, my pain was tolerable, and other than a bit of pain and fatigue my recovery wasn't bad at all. I just rested...a lot. For my night in the hospital I didn't need much...comfy pj's that were easy to get over my head, slip on shoes (not backless), my kindle so I could read, my cell phone, and an overnight bag w/ deodorant, toothpaste/brush, hairbrush, ponytail holders, etc. I also had a travel neck pillow for the ride home (I traveled about 5 hours for surgery so I wanted to be as comfy as possible). It's normal to be super nervous, I was so nervous I was tempted to back out myself! I'm so glad I didn't because I'm doing so much better post-op!
Wow! That’s so crazy! I can’t believe you could possibly get out of the hospital so fast! Thank you for sharing that with me.after my pre-op today I’m really losing my nerve! -TracyJessica
Anglyn said:
Best wishes to you! I was lucky to have a very good surgical experience. I was only in the hospital overnight, my pain was tolerable, and other than a bit of pain and fatigue my recovery wasn’t bad at all. I just rested…a lot. For my night in the hospital I didn’t need much…comfy pj’s that were easy to get over my head, slip on shoes (not backless), my kindle so I could read, my cell phone, and an overnight bag w/ deodorant, toothpaste/brush, hairbrush, ponytail holders, etc. I also had a travel neck pillow for the ride home (I traveled about 5 hours for surgery so I wanted to be as comfy as possible). It’s normal to be super nervous, I was so nervous I was tempted to back out myself! I’m so glad I didn’t because I’m doing so much better post-op!
Thanks, yes I have counted and of course it’s on a collision course with my surgery! Yay! Thanks for all the tips…hope you are doing well! - TracyJessica
Just_Whisper said:
Have you counted on the calendar for your monthly? I started while I was recovering from surgery. Needed extra undies and fem hygiene products…hospital ones can kind of suck. A bathrobe and non skid slippers cuz the hospital gowns are open in the back. Pajama bottoms and sweats are good too.
I brought a feather pillow and a soft blanket to wrap around my head/neck to help support while I slept sitting up and used the hospitals under my arms.
Your throat and mouth will probably be dry from the oxygen and tubes from surgery so your fav lip balm and hard candies to suck on when your able, or I used binaca spray so I didnt choke on candies.
Pony tail holders to keep your hair off incision or out of your way.
Flushable wipes cuz whiping can hurt to stretch so cutting that time down helps.
Thank you, is the nausea from the pain meds or is it from the changes in the CSHINABERRY flow? I’m very confused about that! Anyway, thanks so much for the encouragement! I truly hope you are doing good. Also, I have to say thank you for your service to our country!!! - TracyJessica
H-Badger said:
Part two of my advice and story…
I was reading through some more of the posts and thought I could offer some more specific insight…
I’m 29 and single…I am in the military and have lived for years waking up every day in pain and just got use to it and dealing with having to take care of myself regardless of how little or how much pain I was in. There were moments I have had to drive myself to urgent care because of migraine headaches that wouldn’t go away for days and I was getting dangerously dehydrated from vomiting. My surgery was no different–I live far from any family, hundreds of miles and use to being on my own. Luckily I had a very trustworthy and supportive co-worker/friend who was there for me to deal with work nonsense and provide a helping hand for about a week after…but know this…you will have everything that you need while you in the hospital. Visitors can make it easier on your recovery while you’re in there…and having that support can help so welcome anyone who wants to come and see you that you feel comfortable with. Controlling the pain is very difficult for the first 2 or 3 days but it’s much easier by the time you have to leave the hospital. Vomiting and nausea can be an issue and was for me because of all the pain medications I was taking and not being able to, or even having the appetite for eating food. Looking back, with her living in with me for a week to take care of me was a huge blessing because she drove me to appointments (I was told not to drive for two weeks) and changed my bandage every day. But it’s nothing that I couldn’t have done on my own if I had to.
just be sure no matter what u do don't be stiff with ur neck/head or it will hurt later from being so stiff. also sleep as much as you can because sleep helps the healing process! best of luck with your surgery!
No Beeba. I wouldn’t say anything in particular happened today, but I’m very glad you started this conversation. It made me really think and gather my thoughts. I am definitely surprised by how strong my last minute panic is. I think also what may have triggered such anxiety is that for whatever insurance purposes, my surgery is being billed under the “other” surgeon’s name. The one whom my surgeon chose to work with. I did meet him once and did like him, but after almost a year of building trust with my surgeon, it really unnerved me to repetitively hear and sign off on the other guy’s name" doing my surgery. This was an issue for me previously, so I think it just messed with my head so badly. After the drive home I actually called his office like a crazy person and again made them promise that my surgeon I spent so much time choosing and building a relationship with was in fact going to hands on be performing my surgery! Perhaps yet another thing that may have triggered my severe anxiety was the hospital itself. I am not familiar with this small hospital. My surgeon seems to think very highly of it. They both do. They are affiliated with many hospitals, and they both chose this one. The only one I didn’t know. I did Google it and it seems fine but it isn’t quite known for brain surgeries and such. That’s fine. I’m way more concerned with who is doing it but it is a very old hospital and the PA checking me in made a comment that her nice had surgery for chiari a long time ago and this was the first time she ever heard of someone having the surgery there. By coincidence, the chiari Institute happens to be about 15 minutes away so I know that’s where everyone is going, but little things like that add up quick when you are already nervous. Thank you for addressing things like the catheter. Like I have said, this is my first surgery ever and I never would think of things like that. As far as hygiene products, I will bring tampons. I didn’t think the hospital would let you use them. I don’t even have pads, so if I have to use them, I guess I will use what the hospital has. I really appreciate the fact that you thought to remind me that I actually can run if I wanted. I really get your point that just knowing that is powerful. I have to call and ask again but I believe you do not take your meds with you? They took my list of them today. They told me they will likely shave the spot on my head after I am under anesthesia. That’s a plus. I assume that’s a tad emotional. I do have a huge issue with anything over my face/mouth so I hope if I tell them they won’t put oxygen on me till I’m out also. I know I can’t go on like this much longer. I think I did as good as I could making my decisions. My insurance changed January. If I had this insurance from the start, I would have seen people at columbia/Presbyterian, but I don’t have time to start over. Every day is a challenge . Not wind up in the ER. But I have many reasons to stay with my surgeon. I am just amazed how strong some people are and at the moment of truth it turns out I am a big coward. I keep reminding myself how fortunate I am that there is a surgery for my condition and there are so many people in this world who are not as fortunate. Honestly, I am ashamed but I still can not help it. Thank you Beeba for everything! -TracyJessica oh…One question that is just bugging me…all this talk about the nausea, most people seem to think it is caused by the pain meds but a few people said it’s caused by the change in the spinal fluid flow. Any input? For whatever reason I would really like to know. Thanks
Beeba said:
Jessica, did something happen today at your pre-op that scared you? Or just the normal I don’t want to do this a million times right before surgery? If you ever go running in to brain surgery without any fear or apprehension I would worry more. Now if it is more than that honey you can stop this at anytime. But you CANT unring the bell once it has been done. You are never going to feel perfect about it but you should have full confidence that you have made the best decision under the circumstances. Again there are normal nerves and then there are the warning from god nerves. Two different things one you have to handle and get past the other you have to listen to and act accordingly.
As for Aunt Flo coming to town - all three times I was not due and within an hour of waking up from surgery she arrived bags and all. Just be prepared. Bring your own. Pads are best as you don’t want to be struggling and bending over. As a personal preference I have my catheter removed before waking me. Please know this is not ideal for everyone but for me I prefer to not have it. Can make it difficult and it does force you up and out pretty quick but that is my choice. Some drs want you staying down. But there is always the bed ban option. I had to do that after fusion but other times I just went very slow. It bothered my mother a lot but nurse pointed out that it is good for my dignity and she was right there and she said she didn’t care if it took all night that it was my time. It was good for me - but may not be for others. As a guy I definitely would want it out - they got that handy thing - once again women have it tougher!! Lol
Thanks scott. That’s an interesting point that I haven’t heard before and will be sure to address that! Best wishes - TracyJessica
scotthensley101 said:
just be sure no matter what u do don’t be stiff with ur neck/head or it will hurt later from being so stiff. also sleep as much as you can because sleep helps the healing process! best of luck with your surgery!
I just had my surgery 4 weeks ago, had the C1 laminectomy and they did open the dura along with duraplasty using my own tissue, surgery went AMAZING, I actually got up and out of the bed same day and used their pseudo toilette thing, you know the one that looks like a toilette seat on a walker, had my surgery on a Thursday and went home on Saturday afternoon, the pain is not so bad, I do have a very high thresh hold though, and only took pain meds for a few days at home for good measure and I was fine. I still have some muscle stiffness and soreness but nothing unbearable or tolerable, that is expected. I was scared too as I have never been under general anesthesia and I am very very very sensitive to all kinds of medications as far as nausea and vomiting so I made them aware and they take extra steps they gave me a patch and they give you extra medication while you are under and I have had zero nausea!!!!!
The only thing I will warn you about that was never discussed with me as a possible risk, though I don't want to scare you is I did get sensory nerve pain/damage as a result of the surgery itself, there is a possibility it could be short term or long term but no way to tell and pain meds wont help that kind of pain. It is in my skin and all over my entire scalp, and the only way I can describe it is if it is touched in the slightest such as wind blowing through it etc is like someone took a razor to my whole head (shallow) then dunked my head in a vat of salt then lit it on fire every so often. I don't want to go to bed ever bc it hurts to badly to lay my head on a pillow, and I am working on trying to talk to my regular neurologist about treatment, but basically at my 2 week it was good luck with that.... here is some ambien to help you sleep.... UM I don't think they understand.... so that is my experience so far, and I don't know yet if it is helping with my positional or exercised induced pain/headaches as I am not up to that level of activity yet in the recovery process
Thanks so much Robinlm and congrats on a relatively good surgery experience! I understand that they will always be something or some new or old symptom hanging around. I already have a similar situation with my scalp. I don’t know how surgery will affect that but all I can hope for is a smooth surgery with no complications. Thank you for sharing that with me. It really helped to read that!!! Best wishes - TracyJessica
Robinlm said:
I just had my surgery 4 weeks ago, had the C1 laminectomy and they did open the dura along with duraplasty using my own tissue, surgery went AMAZING, I actually got up and out of the bed same day and used their pseudo toilette thing, you know the one that looks like a toilette seat on a walker, had my surgery on a Thursday and went home on Saturday afternoon, the pain is not so bad, I do have a very high thresh hold though, and only took pain meds for a few days at home for good measure and I was fine. I still have some muscle stiffness and soreness but nothing unbearable or tolerable, that is expected. I was scared too as I have never been under general anesthesia and I am very very very sensitive to all kinds of medications as far as nausea and vomiting so I made them aware and they take extra steps they gave me a patch and they give you extra medication while you are under and I have had zero nausea!!!
The only thing I will warn you about that was never discussed with me as a possible risk, though I don’t want to scare you is I did get sensory nerve pain/damage as a result of the surgery itself, there is a possibility it could be short term or long term but no way to tell and pain meds wont help that kind of pain. It is in my skin and all over my entire scalp, and the only way I can describe it is if it is touched in the slightest such as wind blowing through it etc is like someone took a razor to my whole head (shallow) then dunked my head in a vat of salt then lit it on fire every so often. I don’t want to go to bed ever bc it hurts to badly to lay my head on a pillow, and I am working on trying to talk to my regular neurologist about treatment, but basically at my 2 week it was good luck with that… here is some ambien to help you sleep… UM I don’t think they understand… so that is my experience so far, and I don’t know yet if it is helping with my positional or exercised induced pain/headaches as I am not up to that level of activity yet in the recovery process
Tomorrow is the big day! My thoughts and Prayers will be with you! :) I really feel that surgery gave me my life back and I pray the same will happen for you!
Ohh yes. Thanks so much! I can’t be more nervous, and your positivity can’t be better timed. Thank you Anglyn!
Anglyn said:
Tomorrow is the big day! My thoughts and Prayers will be with you! I really feel that surgery gave me my life back and I pray the same will happen for you!
I really feel that surgery gave me my life back and I pray the same will happen for you!