Earlier today I was diagnosed with a Syrnix caused by a 15mm Chiari Malformation, I have already begun experiencing nerve damage, as I lost the feeling in my right hand, which is why my NS wants to perform the surgery quickly. My neurosurgeon has apparently done a lot of decompression surgeries and feels very confident about the procedure. I, on the other hand, am not as confident. It didn't help that I googled the surgery and the possible risks this afternoon. Not a good idea, don't do it unless you want to worry yourself. Anyway, this is my first time having any type of surgery, and I'm beyond scared. I don't know what to expect, and this is uprooting my life in an unavoidable way. I'm a sophomore in college, and I will be missing at least a month of school, this entire situation is extremely stressful, and the worst part is that I have no idea what to expect or how worried I should be, or how truly serious this is. Can someone please tell me how they got through the pre-operation stress and worry? I feel like I'm just sitting around, and waiting is the worst, as I can thoroughly go through all of the possible negative outcomes. Help!
I haven’t had the surgery yet and im 3 years post diagnosis. I wanted to tell you good luck and hopefully you have a good recovery. You are in my prayers.
Best wishes for your surgery, Madison! Many members here have had decompression surgery, as well as some of our moderators. I hope you come through with flying colors.
I was also extremely stressed and worried pre-surgery. The best thing I can recommend is to rest and pray. Your surgery is in God's hands and He has already planned your outcome. I pray that your surgery goes well and you come out the other side better than before and able to go back to college. For many patients that is the case; for many patients, it doesn't work out that way. I had decompression surgery Sept. 9th of last year. When I woke up, I was very nauseous from the anthesthesia. I was dizzy and my neck hurt A LOT. My head didn't really hurt. By my 2nd day, the only thing that hurt was my neck, still. My NS said it was because he had to cut my neck muscles. By the 3rd day, I was unhooked from all IV's and was up walking around and wearing my own clothes. On the 4th day, I went home. I'm not gonna lie, the car ride home was torture. I get very car sick and not being able to sit up straight made it worse. Get a full body pillow for use in the hospital and on the ride home. It helps to be able to lay on your side and cuddle with it. Don't be surprised if you have bad dreams right after surgery. Not everyone does, but I know a lot of people who did, including myself. Your brain will be going through a traumatic experience, so it takes time for it to readjust and start to perform like normal.
You are young and I’m sure afraid. But if you have a 15 mm herniation and a syrinx (I’m assuming also block CSF) then surgery may be the only option to give you hope of relief and to avoid increasing damage. Please read all you can about your condition to make an educated decision. Chiari does not cure itself, but you can help yourself by being informed.
Be brave !
Darling, this is a lot to digest in a short amount of time. I’m sure you are overwhelmed and stressed out. You need to know what to expect post op, and this us what I use to preoccupy myself leading up to the date. You will be VERY tired for many months. It has been helpful for me to plan and prepare some things, but also think about what life is going to look like, realistically, for the months following surgery. Being prepared to do nothing and lay around the house is better than finding out you can’t do the things you thought would be able to, and then getting depressed and disappointed. Does that make sense? (I just had surgery and am mentally still out if it a bit :))
It is scary to think about the surgery and possible outcomes, but remember all of the people who have done this before you and are hanging around to help you and each other. You can do this!
Jenn
Thank you so much everyone, I really appreciate it. My surgery is tomorrow, and needless to say, I'm sort of freaking out. I've never had any surgery before, not even wisdom teeth, and the whole process is a little daunting. My NS, Dr. Thomas Wisenhundt, is very sure and confident everything will be fine, but that recovery will be tough, I just asked him not to shave too much of my hair and to not make me us a rolling backpack. Thank you all for your kind words and great advice, it's nice to know other people understand, and have been there. Thank you so much.
Best wishes! Next month is the 2 year anniversary of my surgery and so far I have no regrets! It's natural to be scared! I was petrified but things went much easier than I anticipated!
Do you have a support group or family to give you a hand? You;re going to be pretty out of it for at least 2 months, and it'll probably take at least 6 for you to get back on your feet and walking comfortably. Don't do school while you are post-op; give yourself a year to recover, rather than a month.
Mind you, I haven't had the surgery, so all the info I have is second hand.
Don't let the doc do their "med-talk". Tell him to break down the term and explain things in detail. Neurosurgeons have a lot of BS with them (ego, lack of bedside manner, etc.). I don't mean to scare you, at all, I just want you to pester your doc as much as possible. Asking him questions and getting answer might help with your stress.
Good luck, girly, and I hope all will be well!!
We all have different experiences but most people are back to work within 8 weeks! The biggest issues for me were neck soreness and just being really tired. My case was a little unusual as I actually got released the day after surgery and spend the first week in a hotel to be near my surgeon! I was very sore but able to take basic care of myself. I even made a short trip to Target for supplies. Most people spend 3 or 4 days in the hospital so I don’t want you to think a 1 day stay is typically but just to show you that not very one has a terrible recovery!
While it’s true that you may keep improving through out the first year basic recovery rarely takes that long! I was doing better than I had been prior to surgery within weeks!!!
You will do great !!!!!! :)
Sept. 18- am curious to see how your surgery went and how you are recovering. Wishing you the best.