Damb that’s rough. I almost feel awkward liking that post. Just because he went to school for 9 years or whatever doesn’t mean he knows your body better than you. They’re not the only neurologist out there. Hope you can find one that has more than three minutes to listen to their patient. Don’t they teach bedside manner to these doctors anymore?
1 Like
So sorry to hear that. I hope you find a new doctor soon.
3 Likes
Hope you find a new doctor soon!
3 Likes
Another health update for September 7th, 2017:
Good news and bad news!
I saw my neurologist yesterday to go over my MRI and what our next step was. We already knew they didn’t really find anything on my MRI other than a cyst they sent me to an ENT surgeon to get removed. He showed me and my parents the MRI, and my brain is beautiful and healthy. This is wonderful news – except that it means we still don’t have an answer about what’s causing my vision issues.
We spoke to him about my muscle jerks, which have completely stopped as of a few days ago. He believes that it was caused by the Topamax, as we suspected, but he did an EEG (which I was unintentionally sleep-deprived for) and confirmed that it is not seizures! When he explained what was probably the cause, my mom and I felt very dumb. Topamax can cause a potassium deficiency and a potassium deficiency can cause muscle jerks. I can’t believe my mom and I didn’t think of a potassium deficiency in all our research. (Why the Maxalt stopped the jerks, however, I have no idea.) He said I am very sensitive to Topamax, so it was good that I stopped taking it and that he wasn’t going to give me something else in its place because he didn’t want to have me on another pill I have to take everyday.
Now, back to the MRI: he very much agrees with the ENT surgeon that the cyst in my posterior nasopharynx should be removed ASAP but that it isn’t the cause of my symptoms. He showed me the cyst, and boy, oh boy, it is HUGE. I did some research on Tornwaldt’s cysts (which is what it is), and the largest I saw mentioned was 8mm. My cyst is a whopping 15mm. It is mostly on my left side, but it is also a bit on my right, and its width is probably greater than 15mm. Getting it removed should offer me some kind of relief – having something that big has got to be messing with me somehow. I keep forgetting to call the ENT office back though to schedule my surgery, but at the earliest it would happen the week after next as I have a procedure scheduled next week.
So, since my neurologist saw nothing on my MRI, he believes that there is a good possibility that the visual issues aren’t neurological and that my ophthalmologist perhaps missed something. He recommend that I get a second opinion. However, he is going to do one my test, just to really rule out any possible neurological cause. So on the 13th, I’m getting a spinal tap, and I am dreading it. They are going to look at the pressure of my spinal fluid – this will tell us if I have a pseudotumor cerebri. (If you recall, pseudotumor was mentioned by my ophthalmologist as a probable cause for my vision issues.) The way he talked, however, made it seem like he didn’t expect to find anything.
Honestly? I hope it comes back positive for a pseudotumor because then we’ll know what the cause for my vision issues is and we can move on to treating it. If it doesn’t show anything, we have to go back to the beginning, and then who knows when we’ll figure this out? With my vision worsening every week, we really don’t have any time to waste.
I got very upset at receiving no answers at my appointment yesterday, so my parents calmed me down and outlined our current plan.
We will get the spinal tap done next week. If that yields nothing, we focus on getting the cyst removed. If that doesn’t help (which it probably won’t), we focus on seeing another ophthalmologist. If he doesn’t find anything, we then find another neurologist.
I feel good about our plan, but I really hope we don’t have to go through all of those steps. Time is really of the essence here.
TL;DR
- My brain is totally fine.
- I’m having a spinal tap next week to check my spinal fluid pressure.
- We are no closer to an answer.
- The muscle jerks have completely stopped.
- The muscle jerks were not seizures & I don’t have epilepsy.
- My cyst is gigantic but most likely isn’t really causing me any issues.
Boy, oh boy, I can’t wait until the updates I post on here are game updates rather than health ones, haha.
46 Likes
I understand the need for caution among physicians as any mistake can lead to lawsuits. I am having this same struggle with my son’s developmental pediatrician.
Hopefully answers will come for you soon, even though the process itself can be annoying.
1 Like
Oh man… those dam things HURT!!!
I am glad that overall, despite the bad news, you are generally okay. I hope things get better for you soon!
1 Like
Hi
Don’t afraid, i had spinal tap for eyes problems and i didn’t hurt at all because i had a good doctor.and more without anesthesic…
But it was negative i keep searching…
I understand you completly but be brave !
Also love your story 
1 Like
I’d dare say your brain is bloody fine indeed. 
Best of luck and get well soon. 
1 Like
Hope the spinal tap went OK. From what I know of them, they don’t look fun at all.
1 Like
Oh jeez they are not…
I hope all is going well (or better at least).
1 Like
Update September 15, 2017:
So my spinal tap was on the 13th, and it went really, really well! They gave me Valium and Demerol before the procedure, which was really nice, and then an extremely smart and very funny doctor came in and explained the procedure in-depth because I mentioned I like to understand things. Turns out that the information you find on spinal taps on the internet is fairly outdated, at least for my city’s hospital. (My city is very tech-y, so we get a lot of cool stuff, medical and otherwise.)
He explained that I don’t have to move around and the actual duration of having the needle in my spine can be anywhere from a few minutes to about fifteen minutes. They numbed the area with lidocaine (which was really the most objectively painful part, and it wasn’t that bad) and then used an X-Ray to look at my spine and find the gaps in my vertebrae that they’ll insert the needle through, using the X-Ray to guide the needle. They made sure to set it up so I could watch the X-Ray on the monitor. I wound up not watching because I was laying (very comfortably) on my stomach and had my head on a fluffy pillow.
As soon as he put the needle in, however, I felt super weird. There was pressure and a little bit of a sharp stick (very minor compared to the shots of lidocaine and Demerol), and I guess that got into my head without me realizing it. I felt unbelievably lightheaded, my legs felt very weird, and I got extremely nauseated. The nice doctor from earlier (who didn’t perform the actual procedure yet I’m pretty sure he was the superior of the guy who did) held my hand, patted my head, and got me wet washcloths as he talked me through it. He told me that I was hyperventilating (which I didn’t think I was, but I was very out of it) and that was causing the weirdness. What was really cool was that they changed the angle of the table I was on to raise my upper-half and lower my legs so that my legs would have better bloodflow and therefore oxygen. It worked.
The needle was in my spine for maybe five minutes, and they kept me very much informed of how long it would take. They were also super understanding when I kept mumbled “Hurry” into my pillow, haha. As soon as the needle was pulled out, I felt better. In about two minutes, I was completely back to normal and honestly felt pretty great (that was the Demerol, I think).
They took me back to my “room” – it was more of an alcove with a curtain and a TV – where my mom was waiting. I had to lie flat on my back for an hour to apply pressure to where they inserted the needle (which was a 22 gauge, by the way, so not too big). They had me drink a lot of sweet tea (because I’m in the South) to replenish my fluids and then made sure I could use the bathroom before I left. They gave me instructions to drink a lot and move very little and that my family had to treat me like a queen. They wheeled me out to my mom’s car who then picked up some Mexican food for me. Aside from those five minutes with the needle in my spine, it was actually a pretty good day.
I didn’t get a headache or nausea, and the reason for that has to do with how they performed the spinal tap. Because they used an X-Ray, they were able to be far more precise, which allowed them to use a smaller needle and a more comfortable position for the patient (me). Using a smaller needle meant that I didn’t have to lie on my back for quite so long as people had to in the past because less pressure needed to be applied to keep the spine from leaking. A spinal leak is generally what causes the headaches and nausea after a spinal tap, and while it’s not serious, it’s something that does need to be fixed.
They explained all this and more to me before the procedure, and I thought it was fascinating. I’m not sure if other places are doing spinal taps like this, but this should hopefully become the new standard. I had minimal pain afterwards, just a little soreness the next day that has already passed. Really, all that’s going on is that I still feel a little out of it, but that might just be because of the weather.
Anyway, we don’t have the results yet, but we should have them early next week. I might check back in when I get them or I might wait until after my surgery on the 20th. These updates are so long, I feel weird writing so much when it’s not about my game.
45 Likes
No need to feel weird we are happy to know about your well being.
7 Likes
I’m glad the expirence with this doctor felt a lot better!
3 Likes
Wait a cotton picking minute… Soft cushion, beverage… Why does that sound so–
…oh. 
(Do hope they didn’t turn up there…)
Delighted to hear it went well and that you got a good doctor. Here’s to good results too! 
4 Likes
I’m glad your health is getting better! After your surgery, I’m sure you’ll feel better than ever! Keep taking good care of yourself 
1 Like
That’s great to hear. i hope that the surgery would end up that great as well.
1 Like
Will the MC see his siblings again? Are any of them smart enough not to blame the MC for his/her mother’s sins?
3 Likes
I hope you ok we all care for you
2 Likes