I had surgery in February. The morning of surgery, the children went to school as usual. I spoke with them a day later and did not allow them to see me until my last day in the hospital. I was one pain meds in the hospital but when I was home I didn’t take much of anything. I was pretty much in bed for two weeks due to slight dizziness and exhaustion. The only thing that helped was having helping hands with household work and cooking.
For me overall the worst part of the surgery was throat irritation afr er removal of the breathing tube. But remember everyone is different. Rest in the hospital and rest while home it will be the best thing for your recovery. Once you’re up and moving recognize your limits and stop once you’ve reached them whether you like it or not.
Boy, you describe me perfectly. Your main complaints are mine as well and have always, for the past several years, tried to muster up the nerve to even look into the surgery. Please do let us know how you do. I will definitely be interested. I will be praying for you that all goes well. Keep strong and look to the future for brighter days ahead!
Im glad your mom will be able to help keep your daughters schedule near normal.My triplet girls are now in their first year of college but I found that in those young years it is best to only answer what they ask. Too much detail is not what they are looking for. Just a basic answer. My one daughter asked why our friends baby (who was still in her "belly") didn't get upset when the food the mommy ate landed on her head. Teeheehee I gave her way too much information. I could have come up with a simple answer that would have worked better for her at the time. I also tried really hard to teach my girls the difference between emotions. The main one being why am I angrier today over something one of you did than I was yesterday over the same issue? Thats because I am frustrated. Being frustrated is a feeling you get when something more is bothering you (tired, bills piling up etc) and your reaction is stronger than it should be. Not your fault there, my fault. It may help to explain in simpler terms why you can't do something with her. That you are hurt and it won't last forever but for now you can't pick her up, or concentrate on reading her a book etc. The second best helper is the redirection technique. See if you can interest her in drawing you something or doing something else besides what you can't do while you are in recovery. I was always amazed at how fast an upset daughter could flip to happiness by being redirected while I was still in frustration mode. Raising triplets taught me a lot!!! I learned as much as I taught :)
Good advice and interesting concepts. I like them.
Thanks
azrider333 said:
Im glad your mom will be able to help keep your daughters schedule near normal.My triplet girls are now in their first year of college but I found that in those young years it is best to only answer what they ask. Too much detail is not what they are looking for. Just a basic answer. My one daughter asked why our friends baby (who was still in her "belly") didn't get upset when the food the mommy ate landed on her head. Teeheehee I gave her way too much information. I could have come up with a simple answer that would have worked better for her at the time. I also tried really hard to teach my girls the difference between emotions. The main one being why am I angrier today over something one of you did than I was yesterday over the same issue? Thats because I am frustrated. Being frustrated is a feeling you get when something more is bothering you (tired, bills piling up etc) and your reaction is stronger than it should be. Not your fault there, my fault. It may help to explain in simpler terms why you can't do something with her. That you are hurt and it won't last forever but for now you can't pick her up, or concentrate on reading her a book etc. The second best helper is the redirection technique. See if you can interest her in drawing you something or doing something else besides what you can't do while you are in recovery. I was always amazed at how fast an upset daughter could flip to happiness by being redirected while I was still in frustration mode. Raising triplets taught me a lot!!! I learned as much as I taught :)
It sounds like your symptoms/herniation/procedure are almost exactly like mine. My headaches were so bad I wasn't able to work or really function as a normal human. I was decompressed 12/11/12.
For the first day or so I wasn't in pain so much as just uncomfortable. My head felt like it weighed 50 pounds and I could barely move. They had me on darvocet and it knocked me out cold. It also made me sick so I was on a liquid diet for the duration of my stay. I don't remember much from my first 24 hours. After that I was in some pretty major pain, but only when I tried to move. Rolling over in bed or trying to sit up were the worst. I was in the ICU for 2 days and was released from the hospital after 4. Once I was home the pain abated a little, but moving around was still challenging, as was sleeping. I left the hospital with a script for percocet and did pretty well on it. I don't have children, so I can't help you with that. Since my surgery the headaches have gotten much better. I've had one in almost 5 months. It hasn't done much for my balance issues or memory loss, but my NS keeps telling me it'll come with time. At this point I'm just waiting.
I know it's going to be hard to remember this tonight, but you're in capable hands. This whole thing is really scary so do something nice for yourself tonight and try to relax. I got my hair done and ate junk food and watched dumb movies with my boyfriend the night before my surgery. My thoughts will be with you tomorrow. Hang in there, and let us know how you're doing when you feel up to it.
Hi this is Mikey. I had the craniotomy and the laminectomy myself. Was done on Dec 21. To be hnest the pain from healing does not even rate with the pain from the headaches that i was having. The numbness in my left leg is completely gone. And the ringing in my ears is slowly dissipating. I am currently on no medication. I have had a little trouble with headaches for the last few weeks but it was brought on by a very bad sinus infection that i got due to the weather changes. i am slowly getting over it though. To be 100% honest when i woke up in the ICU after surgery i looked at my wife and told her that i could feel a difference in my head. It will take time for me to get back up to where i should be but i willfight it allthe way. I wish you the very very best.
In January I had craniotomy, duraplasty and laminectomy for a 17mm herniation. My pain in the hospital was very well controlled. I had morphine in IV as needed, and when I started having muscle spasms (to me, that was the most painful, the muscle spasms), they put me on a muscle relaxer.
I was sent home with Percocet, (tapered down to Vicodin, then Lortab), all with a mild muscle relaxer (generic Robaxin; I'm still taking that even now), and a Prednisone Pack. ***make sure you take stool softener*** Someone else mentioned this and it's SO important. These pain meds will stop you up and ANY straining will affect your neck. (I was also sent home with a walker so help with balance and to keep me from falling and causing further injury to my neck; don't be alarmed if they want you to use a walker for a few weeks as a precaution)
The only time my pain was bad was when I would try to lie down. It would take about 30 minutes to get comfortable enough to fall asleep. Any leaning over, tilting forward, laying down changed the pressure in my head and around the incision so it would hurt then. But I generally had very little pain while sitting up. :)
Please be aware you will tire out very easily the first few weeks. I don't have children, but had my sister stay one week, my aunt the next and they did most everything for me. Friends provided all meals for the first 3 weeks and another amazing friend cleaned my house from top to bottom every couple of weeks, would come in and wash linens, etc until I was able to lift. Take advantage of offers for help. and listen to your body :)
Praying for your surgery. please update us as soon as you're on the computer again!
Wow....that may be the best post I've seen about the surgery and has given me something positive to think about. I need to have the surgery, but have been so deathly afraid of it that I havae not entertained it all for a long while, but now, I feel like I could start thinking about it again. I know everyone is different and has different degrees of Chiari....I personally, have about an 8 (plus) millimeter herniation. What was yours? Do you know?
I just feel really positive right now as well as happy for you that it turned out that well and I hope and pray you continue to have positive outcomes from it. I hope it just gets better and better. Whatever else you want to share that could be beneficial, I'd be happy to read about.
My name is Tamarind and I had decompression surgery four months ago. I was also terrified, but I found I actually enjoyed the time in the hospital more than at home. The surgery was fine and I woke up not sure if I'd had surgery. I found myself asking people to talk to me the first night because I didn't have anyone there the first night (they wouldn't let them stay) and I was lonely. If you ask, the nurses will come and talk to you or hold your hand. I found I was medicated enough that I wasn't in pain, but not so medicated that I didn't know what was going on. Ask questions! They will answer and it's nice to know roughly what's going on. To answer your first question: I really wasn't in unbearable pain, I was more fidgety because I wasn't allowed to get up the first day and I wanted to explore (meds working) and I was really stiff in the neck. I couldn't turn side to side well and tried to sleep on my side the first night, it's okay to lie on your back. Once you get the perfect pillow arrangement it's better to be able lie on 3 sides to change it up and help with stiffness. The surgery site will be really sore and itchy. Try slowly turning, once doctor says it's okay, this saved me because I'd gently turn when possible. you may feel like a horse with blinders on for a while. The pain I had mostly was headaches (stupid huh, considering that's partly what the surgery was for) but this does go down!! You will find your have a sore throat too, jello is fantastic. I have a lot of food allergies so I had family bring in soft food. Take stool softeners! It is so painful to strain and the medications will block you up. That is a staple medication. I am four months out, and had another surgery to repair a csf leak a week after I left (what a Christmas) and have cut way down on my medications. In the hospital they alternated, find what works for you and tell them!! I was on fiorecet (very caffeinated), hydrocodone, oxycodone, valium, a strong sedative I forgot the name of and the first night morphine. i was up and walking the next evening and was able to walk with help to the bathroom the next day. Take it slowly and move when you're ready. I also had someone with me the whole time on a cot or the lounge chair so that was really helpful. if you don't, have the call button nearby, I had to ask for my pain meds. It also really helped me to have the medications I was taking written on a white board. I am now on hydrocodone and gabapentin because I got shingles and am cutting it down significantly. My scar is healing nicely and the pain I have now is nothing compared to before. Be prepared for this to take a long time, I was told 2 months which was crazy for me, but it differs for everyone. Expect to feel really really tired especially on heavy meds, they drain you but again don't push it. That's been the most annoying thing anyone has said to me, but the most true, don't overdo it. I do not have kids and actually moved home because I couldn't take care of myself. I haven't worked since surgery but again, everyone's different.
I used to fall over from balance, have massive headaches that'd take me out for days and slurring, finger and mouth numbness and confusion. I've found that I'm closer to my family and look at life very differently now. Now I'm getting a bit argumentative my family is saying I'm getting back to normal. :)
I wish you the very very best! I'm glad you found this site, I've found great comfort here. Take care and go slowly, this is your time. And the hospital beds are comfortable. I hope this has helped. Any questions please don't hesitate.
Hello all, thanks again for all the wonderful responses tonight! I’m off to bed now since they just changed my surgery time for the 5th (!!!) time tonight! Now I’m to arrive at 630am! I guess the sooner the better though,right? Thank you thank you thank you all! I couldn’t have made it through the night without you guys! I feel so much better about it now. THANKS! hugs for each and every one of you. I will update again when I am off the table and going stir crazy in the room. x-kat
I know you said you were off to bed, but I just wanted to add my well wishes and thoughts of encouragement.
I had my carnie crony and laminectomy at C1 on 7 Dec 12. I am almost five months post op and life is simply amazing. It is not that I am entirely symptom free, but the difference in my quality if life is astounding. I have had only a handful of headaches since surgery and I will take those over the headaches that used to force me to lay down with little to no relief. It literally felt like someone was squeezing my spinal cord at the back of my skull. Haha… I describe my headaches as if someone was punching me repeatedly in the back of the head. I was hyper-reflexive on the right side of my body and was losing strength in my right arm and leg. When it got really bad, I was sometimes literally dragging my right leg due to lack of strength.
After surgery my reflexes have normalized, my strength in my right arm has returned and my right leg is getting there, though my NS says the deficit may be permanent. I am still hopeful and try to always remember, It takes time for neurological recovery. The hospital staff will take care if your pain and like everyone has said, don’t be a hero
Initially I felt discouraged after surgery because the amount of pain and I didn’t see relief for symptoms right away. That being said, looking back now… It was the best decision of my life.
I sending great thoughts and prayers unit way!! Hang in there!! You will beat your Chiari… Your Chiari won’t beat you!
Hello, my 12 year old daughter had surgery last month (march 2013). The surgery went well. After surgery she was in ICU for one day and in a lot of pain as to be expected. After the 1st day post surgery she had a remarkable recovery. Her hospital stay was suppose to be at least 5 days but she left in 3 because she was doing so well. Her pain (headaches) were limited and controlled with medication. It has been a month since her surgery and she is doing well. The incision is almost gone. You can barely notice it. She still have headaches periodically. She was prescribed Hydrocodone for pain. Just a quick note. My daughter was never in pain prior to surgery. She had the surgery due to scoliosis and not pain. She had no symtoms of chiari. You will be okay. I will keep you in my prayers.
Your surgery sounds more complex than mine so I’m not sure how similar afterwards might be, but I was surprised at how much easier it was than I prepared for. My daughter was almost 6 at the time and had never seen me in a hospital or been away from me overnight but she did very well. i am blessed with an amazing husband and wonderful babysitter that took care of her well! I explained to her that they were going to do surgery on my brain to help my headaches go away so I would be able to play more.
About the recovery…My incision was pretty small and they only had to remove some of the skull and never had to penetrate the dura. I was in pain right afterwards and kept in ICU as precautionary measure. It was very uncomfortable to sleep, but possible in spurts. They wake you often anyways in ICU to check on you. Obviously impossible to lay on back of head and propped on side with pillows was still hard b/c my neck felt very tight. But after just 12 hours in ICU I was moved to regular room and dismissed after just 2 nights, 3 days total! I even stopped at a yard sale on the way home (being driven of course). They gave me a LOT of OxyCodone in addition to the OxyContin I had been taking daily for the pain anyways. It was deceiving and when I cut back on pain meds I realized I had overdone it a bit!
You will do well, stay positive and focus on healing. Lean on God, He is big enough!!!
Hello again! Just a quick update and thank you… I woke up a couple hours ago with a crazy sore throat. Now I’m worried they will push back my procedure. after hearing all of your stories I’m feeling really good about this procedure and ready to go for it! My mom flew here to help etc etc so postponing it is not exactly convenient… (I know they will do whatever is necessary to keep me safe though…) I was kind of worried about this happening as my daughter has a nasty cough and runny nose the past few days. I was super careful not to eat or drink etc after her even though we were all thinking it was just allergies. I’m going to be so disappointed if this procedure gets pushed back. Especially now that I feel really good about it-thanks to you all!
I told my daughter that mommy is going to stay with the dr for a day or so to fix my brain-the thing that gives me the headaches and makes it hard for me to play… I also told her that she cannot have a brother or sister until after mommies brain is fixed. now she tells people mommy has to fix her brain so I can have a little brother AND sister. (jeez!) I’m not sure what our neighbors think of that, could go a lot of ways!
Anyway, I’m off now to hospital-fingers crossed my procedure is completed today. Thanks Again! I could NOT have done this without each and every one of you here! Hugs to all. X-Kat
I envy you and all those that have had the decompression surgery. I would love to. I am miserable most days and yet, after already having 2 brain surgeries, one for my cyst and another to put in a shunt, another major brain surgery frightens me - yet I am miserable in my life.
I pray for you that all goes well and you get the results you are hoping for, need, and deserve. Maybe it's stories like this that will help me get motivated to look into the procedure for myself. One thing that holds me back is, that my brain is also sagging....due to overdrainage of my shunt, which also caused the Chiari. Many doctors tell me that they can't do the operation for fear of making my problems with the sagging worse. I would need to go to NY, to the Chiari Institute to see if they can help me, so the fact that it's so far away and lack of financial resources, and.....not to mention that another brain surgery frightens me, I've postponed. But things have progressed so much over the past few years and have gotten so bad that I may have to break down and just "do it."
Anyways, enough about me....God Bless, good luck and wishing you a speedy recovery!
You are likely in for surgery now and I am sorry that I just got your question. I pray that all is going well and that they keep your pain well managed following surgery. I have Chiari and I have a 7 and 4 year old. I have found that being very honest and allowing them to see the incision and understand that the boo boo will heal has been helpful for them. I was very straight forward at their age level which at the time of my first surgery they were 2 and 5 so my 5 year old son had a better understanding. It was very helpful that I had a lot of support and my parents were here to take care of them so my husband and I could be in the hospital and they were here for 5 months after the surgery to help with the kids so I could heal. I have had three more surgeries since the first one 2 years ago and am likely to have more. You are welcome to inbox me and I can go through my experience with you as it has been a long one but everyone is different. You have every right to be afraid but try to remain positive. I was told that within 6 weeks I should be back to driving and have heard/read about people who were but I am still not driving and have had multiple surgeries.
I am sure you will find that honesty at a level that you feel she can understand because she is your daughter and you know her well will be your best bet and don't hesitate to be open about how you are feeling. For me it helped to make them less afraid of what was going on but it is a decision that you will know best what to do and we here in the community are here for support 24/7. I wish you all the best with your surgery today and don't hesitate to ask lots of questions because I have also found that that helps me to not be afraid and to stay as positive as possible.
Medication wise I am on 20 mg of baclofen 3x daily and percocet without tylenol as needed in addition to thyroid meds and seizure meds. They gave me valium in the hospital which helped significantly with the spasms in addition to the baclofen. I have also found that morphine does not help me as much as dilaudid. I don't need a large dose but after surgery that helps better than morphine for me and everyone is different. I unfortunately have not experienced relief of headache, nausea, balance or vision problems but I pray that you do. I wish you all the very best and am here if you have questions.
Hello all! I’m still in icu, but moving out soon supposedly. Kinda sad as I really like the staff here. The pain meds are not working much but a lot of the pain has already subsided. Now it’s mostly just really tight and sore-hard to move my neck etc… I took a walk this morning and got up for the bathroom twice now. The surgeon said while operating (cutting the dura and the laminectomy) that he could actually see the tonsils ascend back up. He is optimistic that they “might” reduce 100%-which would be a miracle. Too tired to type more tonight. Thanks for all the well wishes and love and prayers!
Oh what a relief! So happy for you! I just pray you continue to do this well. Keep it up! Will be anxious to read more on your recovery....how you're doing.
x-kat
after hearing all of your stories I’m feeling really good about this procedure and ready to go for it! My mom flew here to help etc etc so postponing it is not exactly convenient… (I know they will do whatever is necessary to keep me safe though…) I was kind of worried about this happening as my daughter has a nasty cough and runny nose the past few days. I was super careful not to eat or drink etc after her even though we were all thinking it was just allergies. I’m going to be so disappointed if this procedure gets pushed back. Especially now that I feel really good about it-thanks to you all!