Getting ready to commit to surgery

[NEbluebells]

I think I will just make a series of posts by topics, rather than try and do a chronological summary.

Here goes -

Waking up
The first thing a remember upon waking was that my throat hurt (6 on a 10 scale), I couldn't open my eyes without going into a total spin and that my fingers were slightly twitching. I have no recollection of what the ICU looked like, but I do know my very kind doctor was right there next to me when I woke up (I recognized his voice) and there were two wonderful nurses touching my arms and I could tell were very near to my body.  One nurse gave me some apple juice, which felt so nice and cool on my throat but I immediately threw it up.  Then the twitching became very bad in my hands.  The twitching was from low potassium. I seem to remember one of the nice nurses telling me that because they have to make sure you are urinating, they give you diuretics during surgery and sometimes your potassium can go low.  Well, after I threw up, my arms did start to shake and they held my arms down and put a new iv in my right arm and put potassium into my arm there. That hurt a little (maybe a 5 on the 10 scale).  It also left my entire fore arm black and blue.  They also had more potassium in the normal line through the iv port.  They said they had to do it slowly to make sure my heart didn't get injured from too quickly administering it. They kept asking if I wanted my husband and dad to come in and visit.  I actually did not want to see them. I only wanted ice packs...all over my body.  Really weird. And that is pretty much all I remember of the ICU.  My hubby and dad did (apparently) visit me in the ICU, but I don't remember them coming or talking to them. Overall, I will say my pain was never above an 8 on the 10 scale and I really don't think it was that high except for the whole potassium thing that made me crazy anxious. I'd give ICU a 7 on the 10 pain scale over all.  Also, the nurses were really all super nice.  It's like they were all there just making sure I was ok, they let me have as many ice packs and ice chips as I wanted. You could totally tell they knew what they were doing (even though I had my eyes closed the entire time - I never saw their faces, but they were all angels.) They took out my catheter (which also didn't hurt, although I was vomiting so badly, I got the impression that I was forcing it out with my wretching).  But like I said, overall it was not nearly as bad as it could have been. I had my gall bladder removed 4 yrs ago and waking up from that was at least 50 times worse than the translab.

[NEbluebells]

Tylenol
So, perhaps this is a stupid post, but for those that may be less familiar with drugs (like me), I wish I would have known about tylenol BEFORE my surgery. Even though tylenol is an OTC, it's super dangerous and you have to make sure you know what you are doing.  Tylenol comes in different tablet forms.  I had anxiety about swallowing pills after surgery.  And there are so many pills to swallow after surgery, and you are so tired and it's hard to keep track of things. I had these crazy thoughts that I would choke on the pills.  So, if you are going to have surgery, i would recommend finding coated Tylenol pills - they make swallowing them much easier.  Also, there is a limit of how much tylenol you can take in a 24 hour period - I think it's 3000mg.  In the hospital I was taking 2 325 mg tablets, every 3 or 4 hours, but when I got discharged I only had 500mg tablets from the pharmacy and it required some amazing mental effort to figure out how to space the tylenols correctly. My hubby thought I was crazy about this, but I'm just sharing my story.  It was super stressful. If I had to do it over again, I would have gone on amazon before i flew out for surgery and found 100mg coated tylenols and bought 1000 of them for pain management for the first week after surgery. Now, at 12 days post op, it's not a big deal because I just take the 500 mg with my coffee at breakfast, mid afternoon, and at bedtime and i'm good to go. However, 6-10 days post op i was counting the minutes when I was about 30 mins before my scheduled dosage was due.

[NEbluebells]

Hair
I have hair that is quite long (about to the middle of my back).  As I have mentioned before, I was on the verge of a nervous breakdown as my surgery date approached, and post-op hair care was the LEAST of my worries. Having come through on the other side, I wished I would have taken the time to get a chin length bob done on my hair prior to surgery. It would have made things so much easier. As it was, they shaved very little, but all just looks a mess. It is also coming out in HUGE clumps, I would expect as a result of all the steroids/anesthesia/stress. It is just all super gross. Also, they give you a type of ointment/like neosporin to put on your sutures. And it gets everywhere. As in the entire left side of my head looks like a grease slick. 

I was able to wash my hair at 7 days post op, but even at 12 days post op, I still can't get all the vasoline-like gunk out of my hair.  Its all just super gross.  I got my stitches out at day 11 and will fly home day 14 post op.  I think I'll continue having to rock the bed head look for another couple of weeks.  I am too afraid to go to the salon. Mostly it's germs I fear, but also the thought of laying my head back to have my hairdresser wash it makes me scared of some type of spinal fluid leak. The doctor said I can wash it, just make sure to dry it with a blow dryer completely, it just seems like so much effort than what I want/can extend on something as stupid as hair.

[NEbluebells]

Packing
Again, I really missed the boat when I packed. For a 14 day trip I brought one pair of pants. No shorts, no skirts, no jeans. Literally one pair of pants that were not pjs. As I mentioned before I really thought I was not going to wake up! Here is my list if you go to the House:
1. Coated tylenol in the smallest dosage you can find (lots and lots of them - you take 3000mg/day)
2. Miralax and/or Colace - try experimenting with this well before the surgery - pretty much everyone tells you not to strain during a BM and you will live in fear of stroking out on the toilet.
3. A wide tooth comb
4. Some kind of detangler/conditioner for after surgery
5. Biotene mouth spray, even if you don't get dry mouth from the surgery, California is dryer than most places and the mouth spray is amazing
6. Soft tissues because you may be so overwhelmed by all the beauty of the world that you just burst in to tears of joy from being alive
7. A pill box
8. pencil/pen and paper - I had to write down every pill I took bc I couldn't remember which ones I had taken and which ones were due, etc. this helped
9. soft socks - my feet were so cold and I loved my blanket and soft socks my coworkers sent me with
10. Sunglasses
11. Refresh single drop tears. These eye drops are amazing and I love them
12. Hair dryer - you have to blow dry your hair after you wash it
13. two cups to help you brush your teeth.  You put one cup under your chin and spit into the first cup, then you sip water from the other cup and spit that back into the cup under your chin.  It works brilliantly and you won't but extra cranial pressure on your head from leaning over the sink.
14. Very small tooth brush, it's hard to open your mouth after surgery, so bring a nice small headed tooth brush
15. Watch
16. Cell phone (the light is really handy)
17. We ended up buying a blender while we were here...yes, that is crazy i know but my hubby (bless his heart) took an uber to Macy's and picked up a nutribullet and a bunch of fruit and veggies from Whole Foods that is about 5 miles from the House.  The food at St. Vincent was not that great and when he showed up in my room with a blended peach, kale and mango smoothie it was the best thing I had ever tasted. (see item number 2 for more info)
18. A small bottle of Ibprofen - the blood post surgery pools in your legs and back of your spinal chord, this causes really bad stiffness and it hurts alot to walk (this happened for me at days 6-9 post op). Motrin was recommended (my wonderful dr gave me the heads up this may occur - which it did, so I was well prepared with the Motrin, and it took the edge off. I would estimate that pain was much more than I anticipated and I would have been scared about it, had he not mentioned it to me before it happened. Just one more great thing about the House - it's like they anticipate everything and are totally cool and calm and collected.
19. An ear plug for your good ear - not sure why this works so well, but I have an ear plug I got at a hunting supply store for folks that shoot guns - they were kind of on the pricey side, but it works very well - it helps in keeping everything "balanced".  Again, I'm not sure why hearing less on one side makes SSD on the other side easier, but it does.  Make sure you bring a plug for your good ear - I use my all the time and I think it must be keeping me from getting headaches.

[NEbluebells]

Convalescence
Yet another wonderful thing about coming to the House for me is that I got some mandatory convalescence! We had originally booked our entire time at St. Vincent. St. Vincent was very convenient and quiet and nice, however I was doing well and I could tell my hubby really wanted a change of scenery and at post op day 8 we found a bed and breakfast in one of the coastal cities in LA. We are 4 blocks from the ocean in a quiet subdivision. It's basically a room in house that two retired teachers live in and make some extra money doing it.  It was about 15% more than St. Vincent, but they also make us breakfast every morning.  It is just heaven. We walk as much as we can, but don't over due it. At post op day 10 (Sat) I over did it by walking almost 1 mile and it took about 12 hours with complete rest and tylenol to recover.  I haven't made that mistake again - just nice and easy. I wonder if that is what is making my recovery so enjoyable is that it's almost like a vacation - I'm not back to my "normal" life - no kids to take care of, no job to do (although I have called in to the office a few times just to check in), no housework.  It may be prolonging the "honeymoon" phase of recovery, but it's all well worth it.  If you come to the House, I highly encourage trying to get an air B&B in a coast community (I'd be happy to recommend this one, but it's on the market and I believe they have an offer on it already). Also, don't bother with renting a car - just use Uber, it has also been wonderful and cheap for everything we need.  We went back to the House yesterday to get my stitches out and it was $20 each way via Uber - about 50 min drive each way.

[NEbluebells]

Dizziness
Well, I am still very dizzy.  I don't know really much what else to say about this but that on the bright side it is NOT accompanied by any nausea. Prior to the surgery I'd never had JUST dizziness, only dizzy and nausea together. I think I always figured they went hand in hand. I am very happy to report that I do not feel nausea now ever. And for that I am eternally grateful of - vomiting would be horrible and I feel like I live in fear of something catastrophic happening...and if I vomited, it would somehow cause a fluid leak or rupture or fall or something.  So for now, I am happy to just have dizziness. However with that being said, it takes a lot out of you. When I wake up before breakfast, it's the worst.  The longer you lay down, the worse it is, and you have to get yourself pumped up to awaken your vestibular system in the morning (at least that's how I look at it). Prior to surgery I have always been a morning person and enjoy waking up, for the most part.  Waking up now is not enjoyable and takes some self-coaching.  Once I get going, it gets much, much better, but I feel like I walk so gingerly and carefully. It takes a lot more effort and I think it's mostly because I fear falling and cracking my head open (again fearing catastrophe). I walk around the house by myself no problem and into the back yard, but haven't done a trip around the block yet by myself.  I have an appt with a vestibular physical therapist scheduled for 6 Jun in NE and expect to work with them for a bit.  I am lucky bc I have neighbors and my hubby works at the same place as I do, so I'm not even that worried about driving vs. returning to work - I think returning to work is much more feasible/less of an obstacle than the idea of returning to driving.  I think I'd be find to return to work at the 4 week mark, but I don't know that I feel that I'd be driving at the 4 week mark - we'd have to see. In fact, as far as work, if I didn't have small kids at home, i'd probably be back to work after memorial day (as I feel now).  However, I am intimidated by all the energy demands of going back to "mom duty" and expect that will take MUCH more effort than just going to work would. I think that is my single scariest thought because needy children don't tend to understand that mom needs to rest

[NEbluebells]

True SSD
Prior to surgery I only had about 30% word recognition on my AN side. It had suddenly disappeared about 18 months prior to diagnosis (originally thought I lost it due to an ear infection that later turned out to be caused by my AN). Post surgery, all the hearing is gone.  It's a bit weird and I bet it would be really hard and annoying if you had perfect or at least good hearing and lost it in the tranlab, but I've been adjusting to this for quite sometime.  It is still annoying, but I think I'm lucky that I had a head start with compensating.  I do feel like it's more of an "other people's problem" thing.  Like it's my hubby and kids that probably feel more frustrated having to repeat themselves all the time than me. I feel a bit left out of the loop and miss nuances, and a bit self conscious, like I'm mis-hearing people or talking too loudly. I also feel quite lopsided, with both the hearing gone and the balance nerve, i feel like that commercial from the 80s with the people who need a V8 - like they are all slanted.  Also, eating cereal is the worst. It is SO LOUD inside your head when you crunch down.  I'm pretty sure I'll never eat cereal again, which will be ok, I have found that I really enjoy poached eggs instead.

[Greece Lover]

Glad we are in a similar spot in the dizziness. I have done some walks around the block by myself, taking it slow. It will get better!

[NEbluebells]

Fear of Catastrophe

So here is maybe where the sunshine fades a bit - at least temporarily - I can go to complete terror at the drop of a pin and suddenly I fear that my life will catastrophically dissolve and I will die. For example, tonight we were getting ready to go out to dinner and I felt something dripping down my throat.  We called the doctor (again, House lets you call their doc and he gets paged and then will call you back and you trouble shoot from there - please if you are reading this and considering coming to the House, I just cannot say enough good things about the entire support I've gotten - this is the absolutely best place on the planet). 

Anyways, back to the drainage.  I am terrified.  My face is ghost white, I am convinced this is the catastrophe that has been awaiting us, that this is, in fact, the end and I will soon die. Dr talks us through the whole thing, suggests some positions to see if it is cerebral spinal fluid leak...it doesn't appear to be at first glance, probably more likely seasonal allergies. If it were a leak when I put my head over it should run like a faucet.  No faucet nose drainage which is a very good sign. Hubby dutifully goes off to pharmacy to get some type of prescription nasal spray that will eliminate any post nasal drip so we can see if the drainage goes away.  I will be going back to check in with the fellows tomorrow at the clinic first thing.

While typing this now (1 hr post panic attack) I realize that it probably is all just allergies, not that I am having a CSF leak/will need a lumbar drain/it will become infected/I will die of meningitis/leave my children motherless. That I should be so lucky that this may just allergies. So this is the type of mental trip that makes this experience crushing. I have no idea when this crazy anxiety will end - but it is by far the worst part of the whole ordeal - you just realize how incredibly fragile life is, over and over and over again. And it is humbling and overwhelming.  This whole thing takes a big level of mental stamina. By far the fear of complete catastrophe is the worst bi-product of this whole experience (for me). I just don't know if (or when) you ever stop worrying. I am trying to look at this as an opportunity to deepen my relationship with God and a spiritual journey - that seems to help maintain perspective, as much as possible anyways.

[NEbluebells]

Greece - have you had any luck finding a vestibular therapist in your area? My son had some sensory issues when he was little and we did OT with emphasis on vestibular therapy and it worked wonders for him...I'm planning on doing some when I get back but wondering if there are any options where you live? I'm impressed you are brave enough to venture around without support - I'm too scared to fall! Building up my confidence, though!

[InnerGrace]

I truly appreciate this detailed update of what you went thru during recovery!!!!!  I am having my surgery this Monday... and I'm doing everything in my power to keep the freaking out at bay!!!  I don't want my girls to see how crazy nervous I am.. cause I have many thoughts like you!!!    And the post op recovery.. my sister is staying with me for atleast a week..(I'm starting to think maybe 2 might be better).....and I told her yesterday, we were at the hospital all day for my pre op testing, and I told her that I was probably going to drive her crazy with every little sniffle or wetness I felt anywhere!  lol    Glad to see you are doing so well!!!  You are an encouragement!!! 

[Greece Lover]

NEBluebells,

I have a pt appointment tomorrow. We have a great PT school at the university where I teach. Let me know if you want me to ask for a rec for where you live. The head of the school is a vestibular specialist and knows a lot of people.

Your post about fear of catastrophe really resonates with me. This has been the hardest part for me. Same thing happened to me with the drainage. Several times. I refuse to let myself sneeze or cough or eat anything that might upset my stomach so I don't vomit. Last week I had terrible chills with a low fever. Spent two days in bed sure something terrible was happening. Doc said a low fever can happen and shouldn't be worried about. It actually still hasn't gone away, but I'm trying not to think about it.

For me the emotional, cognitive side has been the most difficult. Now I'm having some facial weakness, which is better to focus on because it's not life threatening. 

We are going to Wisconsin for a long weekend at the Wisconsin dells leaving Friday. Kids deserve it, but I'm kinda freaked out to leave home too.

Thanks for all your thoughts here. It's really helpful to go though this at the same time as someone else.

[Greece Lover]

I truly appreciate this detailed update of what you went thru during recovery!!!!!  I am having my surgery this Monday... and I'm doing everything in my power to keep the freaking out at bay!!!  I don't want my girls to see how crazy nervous I am.. cause I have many thoughts like you!!!    And the post op recovery.. my sister is staying with me for atleast a week..(I'm starting to think maybe 2 might be better).....and I told her yesterday, we were at the hospital all day for my pre op testing, and I told her that I was probably going to drive her crazy with every little sniffle or wetness I felt anywhere!  lol    Glad to see you are doing so well!!!  You are an encouragement!!! 

Innergrace: good luck. Stay positive. It's really hard with the kids. The night before my surgery my boys (5& cried a lot. But I think it's ok not to hide all the emotion from them.  2 weeks from your sister, if she can swing it, might b a good idea!

[researcher]

NEbluebells, thank you so much for detailing your journey. You have a nice talent for writing. I was getting upset and crying every day after my AN surgery. My husband didn't know what to do. I just told him that I needed to have a little cry once a day. That statement was helpful for him and for me.

Regarding vestibular therapy, here is a website to consider. http://vestibular.org/

Hope you enjoy your time at the beach. Take care.