Hi all...
I thought i would post here my first post-surgery email to friends and family. I sent it only yesterday...
This followed regular updates from my hubbie post surgery. I thought some of you might be interested in a long read.
BTW - i do seem to have some hearing still on the left side. I wonder if it will improve a bit still? It seems better today than 2 weeks ago?!
More soon...
Trish
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dearest friends and family...
i am sorry it has taken me so long to get out this email... at least Fabian was in touch in the early days.
so i am doing pretty well considering... right now my key complaints are an eye that won't close and double vision. my mouth (lips really) is without movement on the left side, not attractive (and tough to eat a sandwich) but compared to eye issues, this seems minor at this point.my dazzling smile is gone (ok, i liked it) but should return once the facial nerve recovers from the trauma. this can take many months, a long slow recovery, but the doctors seemed confident that i will recover in good time. in the meantime, i have to put drops in my eyes (i think the tearing function is also affected) and since i cannot blink my eye is prone to drying out. right now i am wearing a horrible black patch (prirate style) because the does not seem to be such a thing as an eye patch that looks nice (or at least not black). the patch protects my eye (from Cali!) and blocks out vision on the left which eliminates the double vision. i have started to tape my eye closed at night which i think will help a lot to ease eye strain. i did see an opthamologist last week, but she was not very helpful so i am hoping to find another one soon. i understand there may be some kind of temporary eye weight that i can use til the eye closes on its own. i need to rest my eye a lot during the day... and the only way to keep the left eye closed is to close the right one and manually close the left. as soon as the right opens, pop, so does the left. it's quite annoying and a little sore, but this is a very common side effect from this surgery so i was mentally prepared to deal with this. basically it looks like i had a stroke, but thankfully i did not.
i am pretty sure i am deaf in the left ear, which was also very likely and as many of you, my hearing was not great in that ear anyway... a symptom of the tumor. this was the case for several years now. i also had/have tinnitus which is a kind of noise/ringing in the left ear. i actually think this might be a little better than before. i understand that many people who have this surgery actually end up deaf and get bad tinitus, which seems really unfair. i will adjust to the hearing issue, but will probably not be frequently night clubs etc where it is really noisy. luckily i have had my fill of these over the years!
ok, so for the good news... i am feeling quite fine, although i do rest a lot during the day and have the luxury as i am off work indefinitely, at least until my eye issues resolve enough that i can sit in front of the computer and drive a car! the doctors had said to plan for 3 months, and that i might have balance issues (the tumor was on the left balance nerve, which they cut when they remove the tumor). while the first few days in hospital i was dizzy and couldn't even roll over in bed without getting the spins, this seems to have totally resolved so this is good news. i had very little pain associated with the surgery or recovery. Of course i was on pain killers for a few days, and got sent home with a big bottle of percasets (sp?) but i took a few of those (even though advils do the trick) and the last one made me feel so light headed and sick i have sworn off them. i am not suffering from headaches which i understand can be a problem for people, and just take the odd advil or two if i feel any thing at all. i am not a pill popper generally but these seem like the times for it. i can now eat OK, the first few days in hospital i was on fluids and then ate yogurt and soft things. more good news, i lost about 8lbs over 7 days in hospital, and NO the tumor did not weigh that much. so i am now even a few pounds below where i was when i got pregs.
the surgery was long as fabian told everyone and i did end up with a sore spot on my hip and some numbness on right trunk. this will fix in time. it does not hurt so i pretty ignore it.
fabian was an angel over these weeks and took good care of cali while i was away. during the first week he would drop my mom (angel #2) off at the hospital, then drop cali to daycare and then go to work. at the end of the day he would get cali, mom, go home, and even came back to see me in the evenings a few nights. he slept in the chair in ICU the first night and held the tray while i vomitted (continously) nothing at all... i guess from the aneasthia (sp?). he stayed another night (in the chair) during the week when i got moved to a private room. despite my rather hideous appearance (cyclops, medussa, 2 staples in my forehead, etc) and lack of hygiene (it was several days before i got a decent wash!) he told me i looked good and was very sweet. even now i am doing much better but still have this half paralysed face and he does not seem phased. he puts eye drops in for me, eye ointment at night, antibots on my incision (which was much cooler before the doctor removed the 40+ staples), and got the bathroom all set up for me (shower chair and hand rail). I had a walker in hospital although i did not leave my bed much and he got me one for home, but i quickly left it in the corner even though i think he thought it was kind of cute. luckily we have a small bungalow so i get around pretty good and can just use the walls is i need to.
I would not have survived the hospital if not for my mom. she stayed two nights with me (second and third, shared room, then private). she has worked in a hospital so she is comfortable in the environment, perhaps a little too much even... the first night she decided the chair was no good and went off and found a pad from a stretcher in the hallway. at one point in the night i woke up and she was snoring. i figured out that she was sleeping on the floor. i didnt realize she was on a thick pad until the morning when the nurses came in and gave her **** (like she cared). she slept well! after 4 days of fluids and jello i was getting hungry and she got them to start bringing me food and brought up things for me from the food court. she helped me get to the bathroom, shower, walk around. around day 6 i was like mom i gotta get outta here they are trying to kill me (lack of food and help to eat, noisy, interruptions all night). i think i was the youngest person on the floor, but we were all in pretty rough shape. i feel bad for anyone going in there without the help of family. i am so grateful. when not on duty with me, mom was home helping with cali and cooking, cleaning laundry. an angel.
i had only a visitors in hospital which was fine as they were not my best days. i did receive many flowers, cards, emails, calls, texts, fruit baskets, books, even clothes for cali !! thank you all for thinking of me during these times. for those of you who said prayers (and i know some of you are well connected!) i thank you too.
my dad and colleen arrived from arizona a week before my surgery and also came to see in hospital and have been close by and have taken me here and there since i have been home.
fabian's parents arrived early last friday morning so they have been so helpful this past week. fabian has had to work and i can't look after cali on my own so they have been helping with her (happily!) and helping around the house. they will be here til July 24 i think. they were expecting warmer weather, but i am sure this will come. they are so happy with little Cali.
speaking of Cali, it was tough to be away from her for a week, but i really need the time for me. fab's brought her to the hospital on saturday and she looked so big and cute. i think she was a little scared of me (not surprisingly) and confused. in a week she became daddy's girl, but i am recovery lost ground fast. she has been sick these past few days (fever, bronchitis, ear infection) and not eating much. she had her 15 month appt on thursday but could not get shots cuz she was sick. she is on antibots now and doing better. never a dull moment. she started walking when i came from hospital and has somehow got even cuter than before. she is sooooo awesome. very spoiled.
what else....
well i am sorry it has taken me so long and there are many people who i owe calls to. i dont have access to the computer during the day and usually by the night i just need to rest my eye.
a few of the people on this list are new friends who i have met on the internet... girls who have had the same type of tumor as i had and have had surgery and/or radiation to deal with it. they and many others on the ANA forum helped me through the months before my surgery... and i am grateful for their wisdom and support in getting through this.
i will meet with the neurosurgeon again in a month and will hopefully be doing a little better by then. i understand he left a bit of the tumor (as we had discussed) as it was too adhered to the facial nerve and there was a real risk of permanent damage (paralysis) if removed it all. the bit that is left may not grow, but if it does, it will be very and i may or may not deal with it down the road. the tumor was actually quite large but did not really present any issues for me (other than hearing loss and tinitus) because it was in the space between my brain and ear canal. They "acoustic neuroma" tumors most often grow in the canal and create many other issues (balance, facial, headaches) before they get too big because they are in a tight space. mine had lots of room to grow! anyway, i feel quite lucky that it was benign, that i was able to have successfully treated by great surgeons, and that despite the issues i am having now, i should recover in good time. again, i am so thankful to fabian and mom and all of you who supported me in one way or another.
i will try to keep in touch better, but won't access this email everyday.
I look forward to hearing from you and hearing how life is going. Well i hope!
many hugs and kisses,
love from Trish, Fabian and Cali superstar angel.
