Thank you so much for your stories guys, its so helpful to know what im getting myself into.
Oh I sleep in a recliner and my Dr was very ani neck brace as it will weaken neck muscles
Hey:) I did not get moved to wheelchair. I do not remember conversations I had with med team in recovery but in ICU remember asking for my daughter and pain meds. You will have pump and when needed they will give you extra bullouses (sp?). I was uncomfortable but was surprised not as bad as I thought. I was posting on here from my room and even ordered a friend flowers if that tells you anything LOL. Day 2 I showered and sat in a chair and was given the ok by therapy to get up on my own. Day3 when I was wondering the halls I was told I didn't look like a patient. I also got discharged because they said they had no reason to keep me. Stay on top of pain meds because once the pain gets bad it's harder to get under control take as irected the first couple weeks. Is Dr a chiari specialist? First two weeks are the worst and you have age on your side:) I will pray for you.
Hi & welcome to the group!
Yes, it is so good to have this forum to discuss things with people who understand what we go through! My recovery was different than alot of what I'm reading in the other posts. You'll definitely find that Chiari affects everyone differently, yet we still have alot in common.
My first memory of waking up was when I was being wheeled out of the elevator into the Neuro ICU. Two nurses moved me from the stretcher to the bed and it was very painful (the movement/jostling, even though they were very gentle). I was really, really groggy. I was very nauseus &vomited right after being moved into the bed. Gross, I know- but also really difficult to do when any movement of your head & neck is almost impossible and really painful!. I didn't expect to do it, so I remember it kind of scared me. So I'm not telling you this to scare you, but because I think it is good to know what that it can happen. I slept most of the time, I hardly talked at all even to my husband who was there at my side. I moved to a regular room the next day, and still slept most of the time. I didn't watch any TV (which is unusual for me) and didn't want any visitors or phone calls for a couple of days. Alot of that time was a blur. Morphine and other meds kept me from "hurting" a lot, but it was like I was really, really out of it.
Occupational therapists came in and had me sit in the chair (for like 20 minutes) on day 3, I think, and it was exhausting. Just sitting up was an accomplishment! But the next day they had me walking with a walker just a very short distance. So for me it was slow going, and it was all very, very tiring! I had valium and hydrocodone (I think) when I went home and I think I was on those for about 2 or 3 weeks. I didn't want to get used to them so I tried to wean off of them as soon as I could.
I did not have a neck brace. The docs said it prevents the muscles from being used & healing right.
I was back to work (part time to start with) in about 2 months.
Some people get through it with flying colors, and I hope that you do as well. Being young will hopefully mean that your body will heal quicker than some of us forty-somethings :)
Feel free to ask us anything that you are wondering about. Knowledge is power! The more you learn about it, the less scary it will be...but it is a big deal and we all have had our freak out moments. Good luck to you. I will be praying for you.
Hi!
After my surgery I did was not in a lot of pain and I don't think I was heavily drugged. I resisted taking any oxycodone, etc., because I didn't feel I needed it. The only thing that bothered me was that my neck was so stiff. What really helped was having two towels propping my neck on either side. This kept my head straight. It was weird because I wasn't even given a pillow while I was in the NICU. But I didn't even notice it!
I had dissolvable stitches (so no staples) and a large dressing covering it. This made it very comfortable to sleep on my back. I basically stayed in the same position until I was transferred to a regular hospital room (about 24 hours after surgery).
I am now 1 month and 2 weeks post-op and am feeling great. Keep in mind, though, that my symptoms pre-op were not that drastic. Just headaches here and there and lightheadedness. I had the surgery bc I have a large syrinx. About 2 weeks post-op, I feel like I had fully recovered from the surgery (just the surgery, not the chiari) and was pretty independent around the house.
I am going back to work tomorrow!
Wishing you the best on your journey to recovery.
Hello doll,
Welcome to our Chiari family.. you can vent, ask questions or talk about anything.
I am a little over 1 month post op. I posted my operative report in my journal and also my experience in another journal entry, feel free to read them anytime. I remember waking up and feeling so happy. I think I even blurted "I'm alive" of course I had an oxygen mask on so I don't think anyone could hear me. I was very giggly. I was placed on a pain pump (dilaudid) and I could push my button every 6 mins. If it didn't help the nurse gave me a boulice (more dilaudid in my IV) I did experience some pain and discomfort and didn't sleep too well in the ICU. I did get sick but the nurse who took care of me was amazing.
Before you're wheeled into the OR the anesthesiologist gives you something in you're iv to make you feel less anxious. The whole team had me giggling and I had the whole team cracking up.. before I passed out from the anesthesia meds :)
Anyways, as I said you're welcome to read my journal entries. I posted them for anyone who was having chiari surgery.. I wish you the best of luck!
You can PM me anytime if ya need to chat :)
Krystal
So happy to see you found this site. Some of us have been where your at right now and I'm here to reasurre you that everything will go fine. I'll have you in my prayers on the 28th. Hope you can find a friend that will let us knw how your doing. We are all here to support each other and I'm so grateful my DH found this site for me. I would suggest to bring your fav. pillow to the hospital and any personal products that you usual need. You will want to rest a lot when this is over, but each day the sun will shine brighter for you. Wish you the best, and know your not alone we are all here holding your hand and will help you through this as much as we can.
Linda :)
You're welcome & thnx 2... I figured it out on my own after many many many months of research & my last NSor the radiologist didn't even mention it in my report, I had to pick up a copy of my mri disc to take with me to another dr & as soon as I got my hands on my disc, I found a computer & found my chiari within seconds, literally.... I knew there couldnt NOT be sumthing wrong, & I finally had the proof....so be persistent & research all u can, it does pay off to know what you're dealing with & to be able to ask important questions.
Thank you so much! I have learned you have to be persistent with this. I know what you mean about knowing more than the doctors. I like to know everything i am getting myself into, and i am naturally interested in anything medical. Good luck with your appointments and tests! And yeah ill try to see if i can find someone to update.
One thing for sure sweetie, you are not alone in this since you're on this site & don't be afraid to ask questions (no such thing as a stupid question when it comes to something you're concerned about as far as your health & new diagnosis & future surgery.& recovery is concerned) my primary care doctor used to fuss at me & tell me to stay off the internet, I knew way more about this than she did & all I was doing was making myself worry even more & maybe for no good reason, well if it wasn't for my persistence & determination in finding out more about my symptoms, I wouldn't have been able to know what I saw on my own mris 9 months after they were done... My determination is.finally beginning to payoff since I've now, after weeks of waiting (not very patiently at times, but I'm a work in progress SelmaS) I received my out of network referral for a Chiari specialist at Vanderbilt & have an appointment in April (unless any cancellations bump me up before then) & several tests scheduled before my appointment so I can have updated scans when I get to my NS... I know I'll need more tests, but at least the ball is rolling & I'm out of gridlock finally.
One thing for sure, age is definitely an advantage as far as how a body recovers, & hopefully you will have a successful procedure & gentle recovery....just make sure you follow dr orders & don't overdo it because that can be a huge problem & cause a set back & that wouldn't be good at all.
Do u have any siblings or a best friend who could help u out as far as updates on here? Even after surgery, during recovery, you may have questions &you can get help or advice about on here ...even if they make a profile on your behalf if you wouldn't want them to use your profile....just a thought....
Anyway , good luck & keep your chin up :-) there are plenty of understanding people on this site....
Shell
P.s. I'm on my phone, so if there r extra letters or oopsies, that's y.... I'm not a total doofus, just Dory & Patrick's long lost love child lol 8-)
We all need this forum to have that release and to have someone understand and know we r not being judged or looked at in an odd way....
Know that we will try and answer ur questions the best we can....and do feel free to read my surgery journal and I do have a few pics posted as well : )
Thank you so much! It is so nice to finally find people who understand this! Its nice to talk about it without the usual "BRAIN SURGERY???" reaction you get from friends.
Hi...oh u r up in Boston...at Tuffs!!...
Aww sorry u don't have someone to post updates......but, I am sure once u r feeling better and up to it we will be anxious to hear from u : )
Thank you so much. The date of the surgery is March 28th and its by Doctor Carl Heilman (i'm sure i misspelled that). I would greatly appreciate the prayers! Prayer is the best kind of medicine. No my family will not be updating, they are not very tech savvy, i will be lucky to get a few pictures out of them :).
Hi and welcome to the Chiari forum.
Each one of us will have a different story to tell u as to all the questions u have....each Dr does things diff and we all have diff needs......
Such as the need for a neck brace, it all depends on the Dr and if the patient also had a fusion....
Many of us that have had surgery have posted our surgical experience in our journals, just click on our name (blue hyper link) and once in the profile page u should be able to read the journal.
And as for pain and how long or fast it takes for u to feel better again will be different as we r all different and will respond to the meds and surgery differently.
May I ask who is doing ur surgery and what is ur date?...I post Prayer threads for the members for their surgery day, I have a thread for u to post ur date....but u can post it here too....and do ask a family member to post updates on ur progress.
Please note we have a list of tips for the hospital stay in the Health Pages, to access them scroll to the bottom of this page and click on the hyper link (blue words Health Pages) and look for the article .
"selma"
HI ! I am sure you have a ton of questions, and you are in the right place for suppory and answers ! I have not had surgery, but I wanted to send you some warm well wishes anyhow. They do say that the younger you are the better you "bounce" back." Good Luck to you sweetie, and never apologize for for asking questions or venting, or whatever you need to do, that is what we are here for !
Hello- Sorry to hear you need to have the surgery! This is a wonderful place for support and answers! Waking up from surgery I did not think was too bad but I was one of the lucky ones that did not vomit. Typically people are in the hospital for a few days but I actually went home in 48 hours. The pain is not comfortable but they were very good with keeping me comfortable. I don't care for side effects of pain meds and when i went home took very few pain pills so even though it hurts quite a lot it was tolerable for me. I did not wear a neck brace but it sure felt like it :) You could not move your neck in any direction even a fraction of an inch, it felt like concrete! The best sleeping position for me was in a recliner kind of propped on my side so that I would not lean on the back of my head. LOTS OF PILLOWS... it helps greatly if you can prop yourself when you are sleeping so that you don't move much and hurt more. I even suggest your own pillow for the hospital. As for recovery, everyone is so different and you just don't know about complications. You are young so that seems to help with faster recoveries! You will move your neck a little at a time and it gets easier to move. The nerve stuff and the back of your head seems to feel weird for a long time. I am 8 months post op from my 3rd surgery in the same spot and the back of my head still feels strange! It is not a horrible feeling but you really wonder some days what normal felt like :) Good luck with your surgery and I hope you have a complication free recovery! -zygy