My name is Ashley and I am new to this site but not new to Chiari. I was diagnosed on March 29, 2016 with Chiari Malformation I, 12 mm long.
I’ve been to 5 neurosurgeons this year and finally decided on a surgeon and a date. I’m concerned about having surgery but I know its necessary because every surgeon says my Chiari is severe with limited brain flow.
I am really worried about how to handle the pain level and my nerves before surgery and afterwards. Does anyone have advice on pre-op and post-op? Especially when I am terrified of needles and hospitals!
I’m sure I can speak for everyone to say that you’re in our thoughts and prayers. With that said maybe you need to find a happy zone in your brain where you can have happy thoughts or whatever it is that helps keep your mind of the scariness of it all. Wishing you the best.
The really really positive thing is that they seem to know what is wrong and are getting it fixed.
Pre-OP: The worst thing would be having to drink the nasty high-calory immune boosting drink for five days prior to surgery. Second worst is the soap they want you to scrub all over for two days prior to surgery. Day of surgery- You will be getting an IV in your arm- This is to input the anesthesia which makes you unconscious. After they do that, you don’t feel a thing.
Post-OP: Was fine. I don’t recall much pain. If I felt pain, I had a pushbutton
pain dispenser in my hand all the time. Had ice packs on my neck. Be prepared to have a swollen lip after having your face pushed into a hole and a tube down your throat. So after 5 hours surgery, you lip gets swollen from being squished. Also, you’ll probably feel nauseous. Request Zofran or something to deal with that otherwise you won’t feel like eating. They won’t let you out of the hospital until you are eating, peeing and all on your own. They usually take out the catheter after a day or so. When you are ready to eat, go for soft foods- jello, pudding, apple sauce. You’ll have trouble chewing hard chicken sandwiches, etc. You probably won’t remember a lot about your hospital stay because of the drugs you are on.
Home: Make sure you get a prescription for dissolvable under your tongue Zofran. I had a really hard time eating because I was always nauseous. And plan to take it easy, relax, watch lots of TV and don’t do too much. YOU’VE JUST HAD MAJOR BRAIN SURGERY, So stay in bed. Biggest thing I recall was how tired all my muscles were in legs and arms. I had a walker to get around with at home, which was great!!! Plan to have someone stay with you the first day or so (that’s what my doctor requested).
Thank you Lindy1 for all your help and advice! I really appreciate it a lot and the way you talk about it makes me have more confidence going into it. Never thought about having swollen lips, thanks for the tip. Also didn’t realize how nauseas you can get afterwards, great ideas on the certain medications.
One question–how painful are the needles? I have rolling veins and it takes 2 or 3 times to find my vein. Also I have passed out in front of them as well. Any advice…
Second question–Do they give you an extra IV to prevent infections?
You’re welcome!! IV’s are usually painful when they first put in, but don’t hurt much after. Stock up on painkillers- Tylenol w/codeine, Tramadol; Naproxin Sodium. Let them know about the fainting.
I don’t know if there is an antibiotic in one of the IV’s. I had one for Saline (to keep you hydrated); one for painkillers; Another one may be for a different painkiller. I also had an IV where they administered my own drugs because I couldn’t swallow pills.
My symptoms are migraines, lightheaded, pressure constantly on my whole head & face, dizziness, tinnitus, cant bend over without feeling lightheaded, weakness in arms in legs, limp on left leg, TMJ (will get migraines without sleeping with a splint and retainer),tingling and burning on fingers/arms/legs/toes, blurry vision, had double vision a couple times while driving for a few seconds, breathing difficulty while sitting too long & body becomes weak quick,
facial numbness/weakness on left side of face, hard swallowing at times, stomach pains at times, itchy scalp but sometimes its my scalp psoriasis autoimmune disorder on lower back of my head, sharp pains on left side of temples, lower back pain (from scoliosis), the list can go on.
The crazy thing is I was supper athletic my whole life, played sports, did high intense workouts, and always into nutrition and eating healthy. I had to stop pretty much everything I did except for the eating healthy part.
What are your symptoms and how do you deal with them?
Blistex Lip balm called: Lip Therapy. I used a whole tube on my swollen dried out lips! Made me think that my decision not to get injections of collagen was a good one.
I had my surgery June 2015. My SCF flow had stopped and I was having drop attacks. My recovery was not easy, so take it one day at a time, it will be worth it when you are recovered.Everyone’s journey is vastly different. Expect it to take months, not weeks. I did not feel decent for a year so do not be surprised. I was in the hospital for 4 days and needed a walker for a couple of weeks. I was very nauseous so do not be surprised at that. They will give you pain meds so don’t worry too much about the pain, plus worrying does not help!!
Everyone told me to make sure I had medecine for bowel movements. Make sure you are not discharged without that!!! Very important!
Do not focus on the present, focus on a few months down the road, that will really help your recovery. Know it WiLL get better.
I had two IV’s in each arm. So I’m guessing 1- Saline, 1-dicotin, 1- Fentanyl, 1- inject my meds. Plus i got diabetes shots in stomach.
But they didn’t bother me much as I had lots of painkillers. Except to feel really bummed out when they release you and take away the pushbutton. Also, it’s a bit of a shock to go home and have no body to nurse you. Sadly, my husband is not a good nurse!
I had a 8mm herniation and had chiair surgery in 1997. I thought it was corny for the docs and physical therapists when they would say, " have a positive attitude" or try
"meditation" . I know now that it would have helped a lot if I had done those things as I do now and they help very much. I know my can do attitude and a determined mind and personality helped me to survive a lot of odds that the doctors say I am a medical miracle. I don’t see it that way, I just took one minute, hour, day at a time and did what I had to do to make it through that time. Perseverance will help you so much. Good Luck. Keep us posted as to how you are doing.
Barbara
I will be 2 weeks post op on Nov 7. I was so very scared to have this surgery. I put it off as long as I could. I was 12mm and had 2 syrinx and my CSF was blocked. The first 10 days were really rough. I won’t lie. My surgery lasted 3 hours. I did not have a swollen face like they warned me I would. I also didn’t take any pre surgery immune boosts or anything. I imagine each surgeon and center is different. I had my surgery at University of Washington. My surgeon was amazing. She used my own scalp for the graft/patch. The pain was intense after. It is like a very severe case of whiplash. But I will tell you I have not had any Chiari symptoms since the surgery. That was instant for me. I had self administered Duladid in the hospital. I was in ICU for 24 hours then moved to a regular private room. I was released on day 3 as I was up and walking and all body functions were working. That was their measure for my release. I also didn’t lose any hair. I really made use of the ice packs they sent me home with. I would make sure you are on top of you pain. Don’t let it catch you off guard. I was sent home with plenty of anti nausea meds, pain meds for a week, and a muscle relaxer. I stopped pain meds at day 6 and kept up with the muscle relaxer through day 8. I am walking about 15 minutes a day and really listening to my body and Dr advice. I have my post op follow up tomorrow morning. I am getting a little ansty and feeling good at day 13. Pain is minimal - just a very stiff neck, a little spasm now and then. It is really important to make sure you keep very well hydrated and keep up your protein intake. And rest and sleep and be sure to walk a little bit every so often after surgery. My team gave me a nutrition plan to follow both pre op and post op and put me on a supplement called Blood Builder. Ask lots of questions and hang in there. I am so very glad I went through the surgery. I have had Chiari my entire life. The issues started showing up 7 years ago. I am 53.
I woke with 4 IV’s. I started with 1 and then the rest were added before surgery. Maybe your team can do that for you as well? Ask, I have massive anxiety over getting IV’s.
Lindy1, thanks for the IV listing, didn’t realize how many IV’s it takes. Now I’m prepared!
Also, thanks for the heads up on the going home part. Sorry you didn’t have a good nurse to go home too.
Thank you Barbara, for the advice with having a positive attitude, meditation, and sharing your story!! Really appreciate it and your positive attitude! I’ll keep you posted!
