POSTED IN POST TREATMENT ALSO...
I am 3 1/2 weeks post Translab for a 1.4cm left AN done on Mar 19, 2014 at Kaiser San Diego with Cueva and Mastrodomis. The care at Kaiser SD was top notch and I cannot say enough about the care I received while there.
I was diagnosed last May with a 1.4cm left AN and was on Watch and Wait. After my diagnosis, I began to obsess about having a brain tumor and it was consuming me. I spent many hours here on this site and I am grateful to everyone who wrote anything I read because it was helpful to me. I read about Watch and Wait, GK, the different surgeries and decided that I needed to get to the gym to prepare myself for whatever future treatment I decided on so I joined in Dec 2013 and hired a trainer. Best decision EVER. It gave me a sense of control in an otherwise uncontrollable situation. We worked on balance, core and cardio and I felt better than I have in years and I realized my balance was worse than I thought.
In Jan, I looked at my husbands school schedule and emailed my doctor letting him know I was wanting to do surgery in Mar. Within 2 hours I had a call from Cueva. He asked if I was sure I wanted to do surgery and was very understanding for the reason why I wanted it OUT. Even though my tumor was small, I had lost 90% hearing, it was touching my brain stem, I had tinnitus, some dizziness and weird facial sensations on the left. Plus the fatigue was horrible which did improve some with the trainer.
My reasons for wanting it out was I am going to be 55 in June and my husband is 64. 5 years to us is very different than if were weer 34 and 44 and we are in pretty good shape at this point aside from my AN. This tumor is NEVER going to get smaller and I felt why wait? Wait for what? For it to grow and make things worse. I know some of you feel differently but FOR ME this is what I was working through.
We left for San Diego (3 hours away) on Sunday, Mar 16 and set up our RV at Santa Fe RV Park which was reasonable at $267 for the week. We spent Monday on the Midway Museum which was cool, had a nice early dinner spent Monday evening and Tues morning relaxing. Our son joined us Tues for my pre-op in the early afternoon and I was able to ask as many questions as I wanted. My family was also present and asked some questions.
I was first case and arrived Wednesday, Mar 19 at 5:30am. I was checked in, waited until they brought me back to the holding room. They had me change into the gown, started an IV, and had only my husband visit before they took me to surgery. In holding, the Anesthesiologist came in and introduced herself and I instantly felt comfortable with her. I was given a little cocktail in the IV to relax me which was nice because it was at this moment that I had to submit and put ALL of my trust and belief in these people. I remember going into the surgery room, telling everyone Thank You for helping me and the mask being put over my face. Nighty, night.
I was in surgery for 6 hours, moved to recovery for 5 hours and then to ICU. When In ICU, opening my eyes made me dizzy and vomit but I knew that was going to happen. The docs must have been asking me to smile and blink in recovery because once in ICU, my family tells me I was saying, "Look at this" and me making faces at them.
The tumor had grown around my facial nerve but they were able to completely remove it because it was so small. I did have my facial lines and wrinkles which is a good sign according to the Dr's. I had a crooked smile, crooked frown, weak smooch and weak eye blink on left. I had a dressing on my head but it did not wrap all the way around my head.
I spent the night in ICU starting on ice chips then water. I vomited quite a bit and am not sure if it was all of the drugs or being dizzy. I was given juice and jello and vomited that up too. After a few hours, everything started to stay down and I was feeling better. My nurses in ICU were wonderful... but I can't remember her name or face.
Thurs am I was transferred to a regular floor. There, I asked that my Foley not be taken out until I could at least transfer to a commode by my bed. Once I did that with help, it was removed. My 2 sisters tell me that when they visited, I asked the nurse to stand me and they did. I held my sister's and nurse's hand then asked them to let go, shifted my weight side to side a few seconds then said I was tired and sat down. I then told the nurse I was going to need a walker for walking later. I got back to bed and rested.
I was on Morphine through the IV, Norco every 4 hours, Phenegren suppositories for the dizziness and nausea every 6 hours (a must have), eye drops every hour, colace once a day. My pain was fairly controlled but it was still bad. I got up to walk a few times a day everyday with a walker going further each time. My two sons, husband, 2 sisters and 2 dear friends visited me Thurs at different times.
The post op care at Kaiser San Diego was the best I have ever had. I wanted for nothing. The nurses just came in and told me they needed to put in eye drops, suppositories, check my blood sugars, give me insulin, give me Heprin, put my leg pumps on, asked me how my pain was, did I want pain meds and I waited not one second. If you are not a diabetic your sugars are going to go up due to the steroids. Mine went up to 191. I took pictures of myself with my dressing on my head so I can try to remember things.
I am sure the docs came in to see me Thursday but I don't remember much. On Friday, Cueva came in at 6am, removed the dressing, told me I could shower and shampoo/rinse (YEAH) and released me from the hospital. I took pictures of my head so I could see how much they shaved which was less than expected. My husband came to pick me up about 11 and we went back to the RV where we stayed until Sunday afternoon. We had my cell phone set with alarms for all of the different meds to be given at the prescribed time. That was very helpful for my husband. I walked in the RV to and from the bathroom, showered, sat up, laid down and slept a lot.
Traveling home 3 hours was trying as my head pain got worse. I went to the couch as soon as we got home and stayed there walking to and from the bathroom with a walker I had already. My balance was way off and well as my overall endurance.
My 21 year old son came home from a friends house about 11pm. At 11.30pm, my son and husband were hovering over me asking me is I was ok and shaking my shoulders. Apparently, I was sitting on the couch and began to breath and make weird noises, my eyes were open and my speech was slurred. I was able to snap out of it 20 seconds or so later then 5 minutes later, I did it again. They thought it is was a seizure but I don't remember any of this and it scared the hell out of my family. My husband called Kaiser who wanted to talk to me. I was able to respond appropriately on the phone to Kaiser but was advised to go to our local ER.
My husband, son and I arrived at our local ER midnight, I was taken back quickly, given a CT then we waited and waited and waited. I was now in a lot of head pain and was given Dilautid IV. A few hours later, given some more but this did not help. In the mean time, arrangements were made for me to be transferred to Kaiser Fontana by ambulance. At 4:30 am I sent my husband and son home knowing I was going to Kaiser Fontana.
Once there, my head was about to explode and all I could do is hold my head and repeat how much my head hurt over and over and over. I got another IV Dilautid and all this did was let me sleep for about 30 minutes. Then the pain just kept on and kept on. The Kaiser ER Dr.did a CT scan, talked with Cueva who said there was no need for me to be admitted. After many hours of being in the ER and the ER Dr. no being comfortable discharging me because of my pain, he repeated the CT again, called in a Head and Neck Surgeon to come and evaluate me. A bright, young female Dr. came and who refers her AN pts to Cueva and Mastrodimos, had seen my scans, thought they looked clear and said the meds I was getting is not what I should be getting. She stated that 3 to5 days post op is when people have the most skull pain and I was on day 4. She suggested we try Percocete pills and within an hour, I had level 3 pain and was ready to go home. That was the magic medicine and by day7 post op, I was nearly pain free at home.
Over the next few weeks I was up everyday, napped very little, transitioned to a cane in the home and now I am now I only use my cane out in public. I returned to Cueva and Mastrodimos for staple removal 10 days post op which was not painful at all and after discussing my EPISODE at home, the thought was I did not have a seizure but was an episode of passing out. I took more pictures of my incision for me to see which helps.
My dizziness is still pretty bad and I cannot even think of driving yet. My face is way better with just a slight unequal smile, I am not using the eye drops anymore, my incision is well healed and I spend the day alone as my husband went back to work Mar 31. I can go out and do some things but just cannot drive as my vision on my left is more blurred. I hope to get that checked out soon.
In preparing for my needs after surgery, I bought a regular single point cane (Rite Aide), already had a walker, got a shower stool to sit on and a suction cup hand grip(amazon.com or Bed Bath and Beyond) to hold onto in the shower. You have to put the hand grip on tile or glass for it to work right. Just looking up and shaking my head to rinse the shampoo out made me swirl. I still (3 weeks out) sit on the stool and hold the had grip for showering.
I am 100% deaf in my left ear and fell that TIN CAN sound is gone which is less annoying. I will persue a hearing device later down the road but want to heal first. The kind female Dr at Kaiser Fontana does them and I will certainly go back to her when I am ready.
My going to the gym and trainer was the best thing I did for myself to prepare for my surgery. I want to go back next week and plan to cont at the gym for my well being and will have 4 more visits with the trainer then be on my own. Psychologically, I am not putting a timeline on my return to work. I cannot be dizzy and drive and that's that. The liablity is too great and if I need another month, so be it. As soon as my dressing was removed, I would wash my hands and gently move my incision to free up scar tissue several times a day.
I hope my story is helpful and you are able to gain something from this post. Message me if you have any other questions that I may help you with but this site is a God Send. Use it, ask questions, research, cry, yell and ride the emotional roller coaster because it's part of the journey.
Thank You for reading my story,
Pamm
