Showing posts with label Cholesteatoma. Show all posts
Showing posts with label Cholesteatoma. Show all posts

Wednesday, September 10, 2014

Recovery

As you all know, I had my surgery on September 4th (so, last week). It went well, albeit longer than anticipated. Mom, Annalea and I drove down to UVA at 4am as I had to check in by 5:30am. We got there, mom and I were taken back fairly quickly, and then we waited. I, of course had to pee and I wasn't allowed go till I was offered a pregnancy test, since I am of child-bearing age. Understandable, but we were so confused as to why I had to wait (and get in my gown first), till it was all cleared up. The 'robe-type-thing' was actually rather comfortable. I don't know if they have a one-size-fits-all or if they just make them larger than needed so they blow out like a balloon when filled with hot air, but it overlapped in the back and had lots of little places to attach the tube for blowing hot air into the gown. I think it's called 'Bear Paws' or something like that.

For those who have been fortunate enough to never "see" the inside of an OR, the reason for this is they have to keep the room chilled - bright lights, clothing layers (for the doctors, nurses, etc) and temperature requirements for certain equipment - so, unconscious, inert body = opportunities for dangerously low core temperatures. Thus, the hot air robe.

Next: The Waiting Game - and IV (I spent most of my time waiting trying to warm up the back of my left hand - I figured, surgery on right side? IV in left hand. And I'm dehydrated, cold and anxious - have fun trying to stick a needle in my veins...). The IV went in the first time, but why numb the hand? It doesn't work. Just say, 'this is going to hurt a little' and get on with it.

Next: 20 Questions (often the same) from multiple people. "When was the last time you ate?" "Drank?" "Took medication?" "What's your name? DOB?" "What surgery are you having done today?"
I saw a regular PACU nurse (recovery room), the anesthesiologist resident (who did most of the explaining of what would happen in the next hour or so), an ENT resident, Dr. Kesser and another ENT resident,  one of two of the OR nurses, and I think that's it.

So, this is what I was told would happen, by the anesthesiologist resident (who's from Germany and who's girlfriend is from France - or at least studied in France). When they get ready to take me back, they would push a 'cocktail' into the IV (my IV had lots of ports to they could 'push' or insert meds without having to stick me again) that would make me feel a bit woozy. Then, they would wheel me back to the OR and get me situated on the table and push the anesthesia. After I was asleep, they would put the breathing tube down my throat and get started.

Dr. Kesser told us he thought the surgery would take about 4 to 4.5 hours. We knew the OR was booked for 6.5 hours just in case (the nurse had told us that earlier).

Well, I remember the 'cocktail' and mom leaving, and vaguely remember them getting my bed ready to roll out of the room, and then __________________________ nothing. Nada. No descriptions of the inside of the OR I'm afraid. Oh, well. It's not like I haven't seen the inside of one before - just been, you know, 11 years.

First memory after surgery:
"Oh sweetie, your really sweating. Do you want to change to a cotton gown?" Head nod and a possible mumbled "yes" but not really sure. Don't remember how she switched gowns, or if there was anyone else in the room. Oh well. "Do you want us to bring your mom and sister back?" "Yeah."
Lots of other conversations happened and apparently I was a lot more talkative than normal, but I don't remember most of it. I do remember hearing my surgery had been 8 hours long. So, just about double the time. Apparently I did really well (mom kept getting updates from the OR nurse every couple of hours) and Dr. Kesser felt he could get all of the Cholesteatoma and do reconstructive surgery all at one go. So, that took a bit more time. Also, he opened up my Mastoid bone area, which is where I had cholesteatoma before, to check it out (it was fine, so Dr. Lee did a good job with the first surgery). That proved a bit more difficult than normal because of the way the blood vessel I have going through there is positioned. So, that took more time.

I spent 4 hours in the recovery room, though it did not feel nearly that long. At first, I did well. Then I started feeling nauseated and dizzy, so they pushed some more pain meds and something to help with the nausea. I wanted to go home, but they did talk about having me stay the night (that's apparently the norm for 8 hour surgeries). I knew the hospital bill would already be a lot and didn't want it to be any more than necessary. And, I didn't want to spend the night in the hospital. I knew I would be more comfortable at home, with mom (who's a nurse). After things settled down a bit, they unhooked everything from me and I dressed (with help) and was wheeled to the bathroom. After successfully navigating the bathroom on my own, my IV port was removed and I was discharged.

Due to my unsettled stomach, we were given some barf bags (ingenious little things) for the car. They are composed of a plastic ring around the top of a long narrow sack, with a little overhanging rim that has little notches cut out of it. So, when you puke, you just twist it off and hook it in a notch and, Tada! Spill proof. I did throw up once in the way home, but thanks to the meds I was given, it wasn't acidic.  That was quite a relief, I must admit.

My first night home, I slept in bed with lots of pillows propping me up. All the other nights and days have been spent in the recliner. Mom took the pressure bandage off from around my head on Friday afternoon. I have a little brush burn line across my forehead from that. Sunday I got my first shower since Wednesday night. Mom helped because I have to keep a cup over my ear to prevent getting my bandages wet. Sunday night was awful. I had been doing a bit better during the day, but had more trouble falling asleep. I did fall asleep sometime after 12am and was awoken by pain around 4:30. I took a pain pill and tried to relax to relieve pressure build-up in my ear and across my cheekbones and ridge of my nose. It didn't work. I tried laying down in bed. Didn't work either. I got a cold, damp washcloth. No help. I tried to cry to relieve the pressure, but physically was unable to cry. I finally knocked on mom's door at 5:45ish and started bawling. That helped quite a bit. Mom stayed on the couch the rest of the night and I finally got some restful sleep.

Yesterday went better again. I'm actually starting to feel bored. And not sleep so long in the mornings after breakfast. I slept in bed last night (with just a little elevation). And now I'm writing this up.

I have an appointment on Friday and will know more after that, but right now, because he was able to do reconstructive surgery, Dr. Kesser believes I may be able to just have a CT scan in 9-12 months rather than a follow-up surgery :) We'll just have to wait and see...

Tuesday, August 19, 2014

Negligence... Sorry

Well, it's been over two months since my last post - and I apologize for that. Admittedly, though I may not have had time the 10 days or so after Michelle left, I have had time since returning to the States that could have been spent posting here. Oh well. The task seemed daunting and rather than just committing to one post a day, I ignored my blog completely. So, I do still need to finish writing about my travel time with Michelle, but that will have to wait for another day. No, this post is an update about my cholesteatoma.

On July 25th I had an appointment with Dr. Kesser at the ENT clinic with the University of Virgina (or UVA). It went really well. I feel positive about his experience and expertise and hope to make a full recovery. He was able to use my CT scans, which was a great relief, meaning I didn't have to have any more testing done before scheduling a surgery, and I now understand what I'm looking at in the images. Woot! Essentially, the Cholesteatoma is throughout my mastoid bone and has filled the space behind my eardrum, encompassing the three little hearing bones. Thankfully, it looks as if the growth has not spread to my cochlea and there is a nice thick layer of bone between the growth and my brain.

Surgery is set for the 4th and the procedure will be much like my previous one - though a bit more intensive, as the growth is more widespread.

How I understand the process of my surgery:

-incision made behind ear and ear flipped over to the front.
-remove eardrum (which has a puncture anyway)
-clean out cholesteatoma (not sure how all this will be done), avoiding the facial nerve and nerve connected to taste buds if possible
-inspect hearing bones: clean and replace if damage allows, permanently remove if damage too severe
-create a tissue graft from incision behind ear to replace eardrum
- pack ear canal and replace ear, closing off incision
-bandage outer ear

Then, 9-12 months later I'll have a routine follow-up surgery to check for new growth. If there is no new growth, and if the hearing bones had to be removed, Dr. Kesser would perform reconstructive surgery and put in a prosthetic in place of the bones.

All in all, there is a possibility of decreased hearing for 9-12 months but the prognosis is positive and it would not be permanent. Unless the surgery is botched or the growth has spread to the cochlea since the CT scan - then it is a possibility, but not probable with the known evidence.



Tuesday, April 15, 2014

Upcoming decisions - a blessing in disguise?

As some of you have heard, from myself and my parents, I had an ear doctor's appointment this past Friday to go over my scans. Diagnosis: cholesteatoma (which we knew) and immediate surgery. As in, if you can't get the surgery in France within the next few weeks, you have to go home now - you can't wait till the mid/end of June. Not what we were expecting.
Now, everything was in French, so I may have missed things or understood things incorrectly, but my understanding is that the urgency is due to the growth being so near my facial nerves. The cholesteatoma is also right behind my ear drum, causing my loss of hearing. So, I have an appointment this Friday with a specialist and will find out more details (better estimation of cost, treatment options, pre and post care, etc). Right now the base price of the operation would be around 2,000 euros and the hospital stay 1,000 euros per day (up to three days). Specific costs will depend on what all will be necessary to remove the growth and hospital accommodations. I had purchased travel insurance for my year in France, and it should cover everything, but there is always the chance of it being denied when I actually send in the claim. (Oh, by the way, if I were a French citizen, I wouldn't have to spend a dime...)

I think we have decided to have the surgery in France because I have no network set up in the States so I probably wouldn't be able to get a surgery for awhile if I came back. Also, there are many very skilled specialists for this type of surgery in all the major cities in France. Furthermore, the ear doctor I have gone to here is personal friends with one of these top level specialists and he is sending me to this person (and calling him personally to ask him to 'take me under his wing').

With all of these unexpected developments, my trip plans with Michelle have been put on hold - hopefully just until I know when I'll have to have check-ups and if it's okay for me to travel (I know I can't travel by plane for 6-8 weeks, but there are buses and trains - they just take more time). I want to try to do everything (or at least most things) that we were talking of doing (as does Michelle, I'm sure), but I do have to say I've got some pretty amazing friends - when I talked to her about all of this, her reply was, "Don't worry about it. If we can only travel around France, that's fine. And if you can't get the surgery till after I get there and I just take care of you the whole time, that's fine too." Again, I hope neither of these are the case, but you never know.

Mom and dad are trying to figure out if mom can come over (or if that money goes to the surgery in case insurance doesn't end up covering it). It would be nice to have her, but at least I've got Mimi here. Much better than not having any family at all... and she's such a wonderful aunt :)

Well, I've got to head out here in a few minutes. I'll try to keep you all updated on the developments as I get more details.