Adventure at the Dentists

The same day I had my left CI activate, I also made a visit to… the dentist. If there is one thing I’m scared of, its dentists. I had called ahead a week and scheduled the appointment, informed them I would need an ASL interpreter, and was told that would be no problem. Making the call was hard for me, and I was imagining how difficult it would be actually going. With my CI’s, although I can hear and understand fairly well, when I am nervous, upset, scared, hurt or otherwise indisposed, my comprehension goes from good to absolutely pitiful. For this reason I needed and wanted an ASL interpreter.

 

I was able to muster the courage to go to the dentist, it was only because a friend of mine was going with me. When I arrived, signed in, I was then informed, there would be no ASL interpreter for the first visit… because… “there was no communication” in that first visit. Not only was I scared, but now… I was livid. The one thing I was counting on to make this visit at least a little bearable was that I was finally going to be able to understand what was said, 100%… That didn’t happen. The dentist was a jerk, he talked down to me like I was a child, I only understood about 30-50% of what was said… and that was only because my friend was helping me. I decided to show him why an ASL interpreter was necessary, I turned my voice off, and started just signing, he looked petrified. He told me that they didn’t schedule interpreters for this appointment because about 50% of them didn’t happen. I informed him of other options than a live interpreter for appointments where they don’t know if it is going to happen, such as VRI from companies like Purple or ZVRS. Then I got xrays that hurt like heck and scheduled a second appointment to review. I was mad, and I was very close to not going back.

 

When I talked with my partner, who had visited this office, I was told, I saw the wrong doctor… so I called and changed the appointment to the right dentist, and hoped for the best. I told them I would REQUIRE an ASL interpreter, and informed them of the law.

 

Well, Monday I went, and… there WAS an interpreter… I have to say being able to take my Cis off, and not having to hear the drill like I did before my hearing took a complete nose dive, and not wearing my hearing aids during the appointment to attempt to understand, but being able to SEE what was said… made the appointment much much less evil. I have to go back and have a bit more done, but I finally got my front tooth fixed I damaged when I was young, it seems it was damaged to the point where it needed a root canal.

 

I have to say… it wasn’t as bad as I had thought. The best thing was being able to understand everything, and STILL be in complete silence. When I didn’t have to use my HA’s to attempt to understand what was being said while he was in my mouth, but instead could take my CI’s off and see everything that is being said, I felt much more comfortable.

 

I have another appointment next Thursday… and thankfully with this dentist at Comfort Dental, Dr. Abe Miller, was nothing like this… which is how I picture all dentists.

 

Surgery… Again

Sorry this is so late, but Its been a crazy month.

I had left revision surgery on Nov 14, 2013. Surgery was scheduled for 11 AM, and I had to be at the hospital at 9AM. This surgery was with a different doctor, and there were some very noticeable differences, but I’m getting ahead of myself.

I arrived at the hospital at 9AM, when I arrived, there were two interpreters there for me, one was sent home as there was no need for two. Both interpreters were very nice, the one who stayed was about 6 months Pregnant. Inserting my IV was much easier, and even though they put it on my hand, it was much better than any of the surgeries I have had in the past. They asked me questions about sleep apnea this time, and oddly, measured my head for research they are doing.

The time leading up to the surgery was very easy, and relaxed. I had very few questions for my surgeon, because I’ve been through this before. They wheeled me back, and I fell asleep instantly (a talent of mine, even without the sleep medicine). The next thing I remember was not being able to breath, signing” I can’t breathe, I can’t breathe” and being very upset by it. No one could understand me, so I started yelling “I can’t breathe, I can’t breathe” they held my hands down, and I kept screaming, fighting them the whole time. My surgeon called this… “Waking up like a tiger” and looking back logic tells me I could breathe because I was yelling, but logic + waking up from surgery do not equal reality. I also remember being very thirsty, and them not allowing me anything to drink, because I had already vomited a few times. Finally I was given ice chips, and… vomited again. At this point, it wasn’t worth it, and I went back to sleep. I was in so much pain, they gave me as much pain medication as possible, and it didn’t even make a dent. They ended up giving me morphine, which made me so cold.

KaciMy mom eventually informed me that if they couldn’t get my pain under control, they were going to have to keep me overnight… this was something I was 100% against, so even though I was in so much pain, I lied… I told the my pain was a 3 on a scale of 1-10… when really it was at least 2x that. They let me go home, and I was given 3 medications. 1. antibiotic, 2.  Pain medication, 3. Anti-nausea medication (my least favorite, but helpful… it was a suppository, so not fun to use). My head was also wrapped up, and I was given Kaci the Koala!!!

Right After Surgery

Right After Surgery

I went home and slept, watched TV shows on Netflix, and slept more. Both my mom and my love were there to help me after surgery, which was so wonderful. 2 days later, Nov 16th, was my 25th birthday. We went to my loves aunts house for “Fake Thanksgiving” and played cards. It was fun, exhausting, but fun. Her aunt made me a rice crispy treat cake (I can’t eat gluten) and it was wonderful and so very sweet.

I was able to take my bandage off the morning of my birthday, and that was a huge relief. They didn’t shave much hair compared with my other surgeon, and there were also no stitches, but it was glued and steristripped together. When the bandage came off, I felt much better… but was a little sad I couldn’t see the progress of my head healing. I was also very swollen, my head was a little oddly shaped for a few days.

no bandage

I had thought about going back to work on Monday… but that plan didn’t pan out. I went back Tuesday, and was a little wobbly (This time I was a little dizzy after surgery… but I did expect this, even though my other surgeries I have not been dizzy).  The sterristripps kept trying to come off, so I had to get some extra to try to reinforce it. Everyone at work was wonderful about everything, and while I was gone, they knew not to expect as much as had been the standard of service.

I was happy I was able to shower on my own this surgery, because of the sterristrips and the glue instead of stitches, which made me feel much better. I had post op on Nov 25th, as well as activation. My surgeon removed the sterri strips and this is what he found! He said it looked perfect. Such a smaller incision than last time. Next up… activation.Tape Gone

back to square one?

Back to square one?

So… I had my spinal tap yesterday, and let me just say… Huston, I think we have found a new form of torture… Let me start with that…

So… when I originally made my appointment, It was for 8:15, by the time it came time for the appointment, I had to check in at 7:30. I was told I had to be there for 4 hours, although the actual spinal tap would only take 15 minutes in the room. I got there after driving 30 minutes to the hospital… When I got there I had to check in with reception, well… there was no interpreter there. I am not a happy person when I do not have an interpreter… if you don’t believe me, look at my first CI surgery. I kept reminding myself that it would take some time before I was done checking in, and the interpreter had to be there by then… right? I’m thankful for my CI’s for the admission piece, as well as my amazing Love who helped me understand what was being said. I finish checking in, and signing the patient bill of rights, (which clearly stated that I was allowed an interpreter!) and the woman who was doing my admissions was going to call the agency to ensure that I actually had an interpreter who was coming. Right before she called, she looked behind me and there was a lady standing there, she was asked if she was waiting to check in (you have to sign a paper), and she said no she is an interpreter, and that made me happy.

After check in, we waited to be called back, and… I went from no interpreters to two! A guy showed up, said he was an interpreter (he saw us signing I believe, my love, myself and my interpreter) here for me… apparently there was a little miscommunication. Neither of them were upset, my partner asked what would happen in this situation, and they both answered one of them would leave, but they would still get paid. Well, then someone came out and said something about needing a hospital interpreter… so it seemed as if I would end up having 3… well, that was a miscommunication too… they wanted to talk about letting one of the interpreters go home… so I had one, and she was very nice.

They got me in the back, and made my Love stay out while they get the IV in, I think the reason for that was because one of the questions they asked me was “do you feel safe in your home, are you being abused” and they don’t expect an answer that is honest with another member of your family there. Well, I finally asked if she could come see me, they said yes. I waited another 10 minutes, and she wasn’t there… they were supposed to get her already, but the nurse got distracted. I refused to be brought back into the room until I was able to see my love, because I needed to see her. I was brought back into the room, and… there was construction… loud noisy construction, in a room where they see patients… with lights flickering, and everything… it was scary. So… being me, I decided… I’ll just take my implants off! This solved that issue… but why in the world would they have construction in a room where they will be seeing patients?

Well, as soon as I got back into the room, I had to pee like none other, again and again and again… literally, I went to the bathroom 5 times from the time I got into the room where they actually do the spinal tap. Well… the doctor came in, and started explaining to me what was going to happen, she was going to numb my back, which was going to be the worst part of the whole procedure… and yes… it sucked but it was not the worst part of the procedure… that had to be between her hitting my bone, and me feeling it, or when the local was starting to wear off, so I could feel her putting the needle into my back. After many, I mean like 4 or 5 attempts, she was finally able to get spinal fluid.

She was confused though, because my doctor believed I had IIH (Idiopathic Intercranial Hypertension) or too much pressure due to excess spinal fluid, and my spinal pressure was low. I’m not sure what this is going to mean about my diagnosis… but I’m frustrated, back to square one and had to lay down all yesterday, flat except to go to the bathroom and to eat… We will see what the doctor says tomorrow when I call, because they are closed on today…

Answers… maybe? Hopefully…

So yesterday I went to the neuro-opthamologist, a specialist who is a medical doctor and specializes in the optic nerve and is sort of a cross between a normal opthamologist and a neurologist. By golly… this was a long appointment…

It started out by them doing tests… taking pictures and measurements of my optic nerve. They had a decent time doing it with my right eye… I was suppose to follow around a blue light so they could get different measurements of my eye. The only times they had trouble is when that blue dot would disappear… because it went behind one of my black floaters. Then they did the left eye, apparently I was trying to focus too much, because they had a very hard time getting the measurements from that eye.

Vision Field Test

Vision Field Test

After that I had a vision field test. which is where you put your head into the contraption to the left, have one eye covered by an eye patch and press a button every time you see a light flash. This tests for blind spots. Blind spots are normal… just not very large ones or very many… my left eye Vision Field Test looked mostly normal (I will post pictures of the results once I get them in paper), I had one slightly larger than normal blind spot. Now the right looked almost like a patient with glaucoma. I had a huge blind spot… that covered almost half of my eye…

I think this is what it is... it bounces up and down on your eye

I think this is what it is… it bounces up and down on your eye

The Vision Field Test then prompted me to have a pressure test… you know that one where they blow a burst of air into your eye? I hate that one… and after 20 minutes and MANY failed attempts… (thank you eyes for automatically closing when the air comes out)… the decided that my eyes were not cooperating… so they needed to do it in a different way. At this point… they put numbing eye drops in my eyes… and put this.. thing on  my eye. It bounced up and down… measuring the pressure. This also took forever… because you have to be still… and my eyes aren’t really fans of having ANYTHING touch them.

After that test I did a light refraction test. Which is very easy… you just sit there and look at a house as it goes in and out of focus. After that… I waited to see the actual doctor.

The first time I saw him (I saw him 2x yesterday), he ran tests on my neurological condition… seeing if things were brighter on one side, if I had the same amount of strength on both sides, asking me questions which I saw no point to… such as “Do you have any issues speaking” I looked at him like he was CRAZY… and signed Deaf… which confused the interpreter (more on her later…). He at that point told me he wanted to start me on a 3 day course of IV steroids… then 10 days of prednisone that tapers down to almost nothing because he believed I had what is called optic neuritis. This term basically means that one of my optic nerves is swollen. It can be caused by many things, including high blood pressure (mine was perfect thank you very much… even with my head feeling like it was going to explode), spinal meningitus, or… even MS. He also wanted blood work done, to rule out things like thyroid issues. He then decided he wanted to run one more test…

two electrodes in the front... one in the back

two electrodes in the front… one in the back

This last test is called a Visual Evoked Potential test. Basically you have two electrodes placed at the front of your head, and one in the back. It measures how long it takes the visual stimulation to go into your head, as well as how much you are getting.

After this test, he said he wanted to see me again… he had made some changes as to what he believes is happening. He came in and explained the abnormalities to me. His first thought, the optic neuritis, I didn’t quite fit after he reviewed everything… the information from my previous doctor and the new tests. He said that with optic neuritis, normally it is only one optic nerve that is swollen… both of mine are. He also said it was odd that my left eye isn’t having as many issues as my right… although the headache is normally centered right behind the left eye, and slightly to the middle. After reviewing all of the information, he decided to change the diagnosis… from something that doesn’t sound too scary, but has some very nasty causes to it… to something that sounds… scary. He changed the diagnosis to pseudotumor ceribri (PTC), also known as Idiopathic intracranial hypertension (IIH) or benign intracranial hypertension (BIH).

this is what will go in my back...

this is what will go in my back…

Basically this means… I do not have a brain tumor… but all of my symptoms are pointing to a brain tumor. This is caused by increased spinal fluid around my brain, putting pressure on my brain and giving me the symptoms of a brain tumor… without the actual tumor. This is good he said… because we can treat it. It also isn’t linked with MS!! But… what this does mean is I will be having a spinal tap or a lumbar puncture. This will do a few things.

#1. It will measure the pressure of my spinal fluid

#2. It will relieve some of the pressure. hopefully making the awful headaches go away and will either cause my vision to become stable or improve.

#3. It will allow them to test the Cerebral Spinal Fluid (CSF).

Now the question is when? When will this happen? I’m not sure. I have to wait for them to call me, to tell me when they have available. I’m not looking forward to the spinal tap… I think only crazy people would… but I am looking forward to having some relief.

Now… about the interpreter…

I can’t say how thankful I was to have my implants yesterday… I couldn’t nearly understand everything the doctor or nurses were saying… but I am 100% certain she misinterpreted what I said… to the point I went voice on. I have no clue how this lady can STILL be a Certified interpreter… let alone a medically certified interpreter.

#1. This lady took forever to even start interpreting… and when she did… it was all too literal interpreting. and way more fingerspelling than is strictly necessary… telling me she didn’t understand the meanings of the words…

#2. when the doctor asked me if I was allergic to any medication, i finger spelled doxycycline, she looked at me like I was crazy… then said TETRACYCLINE… d vs t… they don’t look the same… there was not a single t in the word I spelled… so… I corrected her by speaking…

#3. I don’t discriminate against age… I don’t discriminate against abilities or what some would call disabilities… but this lady… she honestly needs to retire from being an interpreter… she was seriously… 80 or 85. She admitted to me she also has vision problems, and she also has hearing loss and couldn’t quite 100% of the time understand the doctor… THEN STOP BEING AN INTERPRETER… WHERE PEOPLE RELY ON YOUR ABILITY TO UNDERSTAND AND INTERPRET… This could have been a life or death situation… and what if I hadn’t understood that she said the wrong antibiotic that I am allergic to… and what if he gave me doxycycline instead… I appreciate she was probably a really good interpreter in the past… but she isn’t now… she needs to retire… and the company who hired her (A&A Languages) needs to not send her out on any more jobs… this could have been BAD…

Thankfully I don’t think she will be taking any more jobs for this doctor… because I could see her mentally freaking out, and attempting to (and failing at) spelling the words coming out of his mouth.

She also told me that the condition has 3 names, and broke it up as such. 1. Pseudo 2.Tumor 3.Ceribria (as she had spelled it)… no… wrong wrong wrong. the doctor said he would write them down for me… and those three names were… 1. pseudotumor ceribri 2. Idiopathic intracranial hypertension 3. benign intracranial hypertension.

I have decided… if I see her again… I am going to run in the other direction…