I am exactly one week post-op my surgery. I made it! It is a great relief and I feel good about it. My doctor did wonderful and said I had the largest syrinx he has seen, was very positive and did not have any nausea what so ever which was pretty unheard of, and I am very happy about. The pain- well it’s pain and I may have one of the highest pain tolerance but I am okay with it. It isn’t fun of course, but I have since the hospital been in a similar spot of pain-which the doctor is amazed as his other patients usually are off the scale and I just stay on a schedule for my meds to ensure it doesn’t get worse. For me what hurts is trying to hack up stuff in my lungs and coughing hurts bad, at first swallowing was hard because it hurt my head, but eventually it has been easier-every day gets a little bit easier. My most surprising thing was that I realized how important and how much you really do use your neck muscles and head for everything! I am very thankful that I am lucky enough to have had this and increase to heal and recover over time.
I was in the hospital until Christmas Eve- and my best present was to go home that morning to be at home for christmas. I wasn’t able to do all my normal holiday activities, but I was glad to be home. I have a walker to help with walking as I am pretty off balance and dizzy. Otherwise, everything is going fine and I rest a lot and do minimal quick movements or avoid doing too much. Which for me is very hard and I am a busy body and want to do so much-but can’t. But, I know taking it easy is best and in the future I can get back to my usual self. Just wanted to update everyone and feel free to ask me any other questions or talk to me I am here and resting for the next month at least. Happy Holidays everyone!!
I'm so glad to hear that you got to come home for Christmas and that you are doing so well! I'm glad you aren't in too much pain. I also have a high tolerance and amazed the doctors and nurses! I'm kind of glad someone else out there is like me because I kind of feel guilty about it when I read other people's post-op stories.
Good to hear you are doing so well my surgery is 7 was out and things have gone well.Keep us posted,would like to talk to others to compare notes on our progress so feel free to friend me and let me heaR how you are.Be praying for you if that’s alright
How long were you in the hospital for? Do you have a neck brace? How is it to sleep in a bed? I have surgery on Jan 4th.
thanks for all the thoughts! Yes, I have noticed if I overdo it I pay for it..I went a few days good then mostly bed all day for a few. I have an idea what really wears me out and what I can handle. For the most part but it is hard for me not to do anything. But my pain has been okay the whole time besides if I do too much, cough or move too quick I get a throbbing intense headache that pounds my head that kills-which I had before as well (so hoping that eventually will go away)
Bigo2446-
I was in pretty good shape but I was in the ICU the first night until the next night there was a room open so then stayed for 4 other days for 6 days total I was there. I do have a neck brace because I asked for one as you have to lay sorta upright in bed so I wanted it to keep my head upright as when you nod off to sleep it hurts and I could only keep my neck straight. So I got one to wear to bed to help that and prevent too much movement-then I use it if I decide to sit up on my own for awhile because when I do too much my neck/head get too tired-so it is helpful for that and in the car! It is a little hot but better then having my head get too stiff. For sleeping, I found the easiest way for me to sleep because I have to semi upright is either at an angle in the hospital bed so I am not too straight up as I couldn't sleep that way. Now, at home I at able to sleep pretty good on one of my sides or the other-usually switch half way throughout the night and its best to sleep higher at at angle for me because of the syrinx I need to have regulate. If you have any other questions feel free to ask! Hope it helps!
Thank you for all the thoughts and prays and I know to keep going and taking it really easy as I want to fully recovery and not push it! So far I am doing okay every day is a challenge but it is great to have so much support and time will tell!
I had the decompression surgery so part of my bone was taken out to hopefully decrease the size of my syrinx as it was very large and somehow not creating any really bad problems-but was starting to. I am hoping after I get another MRI in 6 weeks or so I will see some change-even if its just my cerebellum as it had to be pushed back into my head-it was down to C2! I will know more than and ask my neurosurgeon more questions as when I was discharged he was not there personally.
razzle51 said:
glad you are doing so well , but REST REST REST atleast 6 weeks .... Or you will be sorry .... did you have decompresion or shunt surgery... cause you still have your syrinx ....
Hi...
So happy to read that you are doing well. Like Razzle51 mentioned..REST...just listen to the ole bod....it will tell you when it is time for a nap!!!
Please keep us posted on how you are doing..thanks!!
Happy New Year!!!
Lori
You are awesome! Thank you for sharing your story<3
Lots o’ rest! But don’t be afraid to be bold and walk little by little each day, start just aroud the house then in no time you’re doin blocks! I’m goin’ on my 6th month of recovery, not feelin’ too hot, i’m robably going to need a shunt soon. So just take it day by day.
“Hope, pray even more and laugh the most”
-Much love from Texas
Aaron
Hi Emily, welcome home! I can’t offer much advice because I’m acting like someone who is 3 months post op instead of 3 weeks. I will say that I’m almost completely off pain meds now and for some reason it makes me more tired and I need more naps. So, don’t fight those naps when your body tells you that you need them!
Hope you feel stronger and better every day!
Has anyone had symptoms return.Does this mean that I’m not going to get well? I’m so afraid things are going back to this nightmares.I have had good results for 7 wks.please pray for me.It is so devastating.I don’t feel I can handle any more but what do I do now? Hope this goes away.I need you that believes in prayer to ask God to continue healing me.
Lynn Messer said:
Has anyone had symptoms return.Does this mean that I'm not going to get well? I'm so afraid things are going back to this nightmares.I have had good results for 7 wks.please pray for me.It is so devastating.I don't feel I can handle any more but what do I do now? Hope this goes away.I need you that believes in prayer to ask God to continue healing me.I had the sugery about 8 months ago. I have not see any change and my symptoms are about this same. My dr told me that everyone is different and some people just need much more time than others for the brain stem to adjust. I will be praying for you. I know that the Lord has me going though this for a reason so I pray every morning that the Lord will somehow use what I am going though for his Glory. Hope that helps a little.
It is hard to determine if this worked or not for me as well-I hope it did but for me it feels too soon to tell. I am over 2 weeks post-op but my headaches are still there it seems-I'm so use to them and on meds, but still have the pain just thinking I still need time before they maybe go away. I will see my doctor next week to discuss more and see what's going on-but I am nervous if it didn't work for some reason. Just have to keep praying and hope that whatever does occur it is for the best-one day at a time, I will be praying for you and just keep positive that will be the best as it is a waiting game to see if everything is going to be okay. I hope all is well and keep your head up-it is hard but don't let it win you can do it!
Glad you got through surgery,now it’s wait and see what happens next.I’ve had some symptoms come back but there’s still a lot of healing to do yet.I refuse to believe I’m not going to get more improvment it’s still early yet.My headaches are still bothering me,my legs hurt less that’s good,there’s still noise in my head and ringing in my ears.We just have to stay possitive,that’s important,keep on keeping on and I feel that e there has to be some improvements when the pressure is taken off our heads,just hope he kept what little brain I had in there ha ha.Take it easy and give yourself lots of time
to heal,that’s hard and maybe it’s my problem too…just very hard but we’ll make it through.Glad we’re on this site it helps to talk to others.Praying for you and all.