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…

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4 thoughts on “Answers… maybe? Hopefully…

  1. Goodness!! Good to know that there’s no tumor! Terrible about the interpreter! Is there a way to report to the company that this happened? I would do so in a heartbeat! That definitely could have been awful had you been given the wrong medication! Thank God for CIs on that one!
    -Isabella

  2. Thought I’d chime in here.
    I have Idiopathic Intracranial Hypertension….
    My case is not very severe. If you have the Benign type, they they can find a reason and get rid of it….not so with the idiopathic…it literally means of unknown origin. More women have it than men, most are a bit overweight….I wasn’t when I was diagnosed, I am now.

    I simply take a diuretic called Diamox for it. I notice it sometimes, but for the most part it’s under control.

    Please don’t be afraid of the Lumbar Puncture….it’s really not a big deal. They normally do them under a CT scan now, so they know exactly where they are going….it’s neat to watch on the screen..like a moving x-ray. They numb the area before inserting the needle into your lumbar area. It just feels like a little pressure. You are on your side, and you have to be still and quite while the test is going on. My husband says it looks kind of like a rain gauge, the fluid (that looks like water) comes out and rises in that gauge, where it stops is your CSF pressure.

    If you have any questions….I’m a bit of a strange case because they thought I had low CSF for a long time, come to find out it was going high and blowing out places in my spinal column…they thought I just had leaks. Once they started treating the high pressure, it’s been much much better.
    But anyway…you are welcome to email me. apicnicwithants (at) gmail (dot) com (it’s listed on my blog, so no big secret…it’s my blog only email address.)

    Good luck!
    I’m pulling for you….I hope it’s something they can treat and it will go away!
    but IIH is manageable.
    wendy

  3. PS….sorry i haven’t been around for a while. I’ve had a rough few months. I hope your second CI is doing well. I read that you were having pain at the site..that the magnets aren’t too tight…and even when it’s off it hurts sometimes.
    Mine too! and I haven’t gotten a good answer. i was told my head was tender and I’d get used to it…we’ll see. Ummmm, since July?

    anyway…email me if you’d like.
    I know you do have the address, but it’s there for you above.

    good luck!
    wendy

  4. Pingback: Adventures of a Deaf Adult | How the time passes, a new year

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