I still am experiencing vision issues just like you, and have not found any solutions. If I do I’ll make sure I let you know
Hi I had a question for you I believe you mentioned that your double vision occurs even when just looking with one eye is the double image you see above the actual image and if so if you place two fingers on your eyebrow and push down does that help correct the image?
@Jester my double vision happens in both eyes now & it makes words appear holographic often. They danced around the page so I can’t tell if it’s more vertical or horizontal. During the eye exam when my convergence insufficiency was discovered, the letters moved like those big floppy balloons you often see near car dealerships to grab your attention. He captured an image of my eyes & showed me that they drift apart in opposite directions. Closing one eye doesn’t help & I tried what you suggested but it doesn’t help either. I’ve had bad vision my whole life so I’m already far and near sighted with astigmatism. I’ve been wearing prisms for over 5 years now & my vision is worsening more rapidly. I can’t wait to see the neuro opthamologist on the 12th! I’ve been waiting about 3 months!
@Jester I’ve been on gabapentin for 3 or 4 years 300 mg 3x day. I stopped for a short time in the middle because I didn’t think it was doing anything but found out quickly that it was! My neurologist has me on sertraline (zoloft) to see if it will help calm some nerves down. I’ve been taking it about 2 1/2 weeks now & so far, I’ve been able to sleep without waking at 2 or 3am in agony! She said it could be 4 to 6 weeks before I see the full effect.
Are your doctors doing anything about your syrinx? I imagine that would cause severe pain! I haven’t had a full spine MRI but they don’t see one in my c-spine thankfully! I have enough pain without any extra & I understand crying from overwhelming pain. How long have you been on gabapentin?
Hi Jester,
I have Chiari and a huge syrinx that’s almost the length of my spinal cord. How are you doing since surgery? I’m about to have surgery I’m scared.
Hey RoXy,
Welcome to Ben’s Friends.
I haven’t seen Jester around for a while, but they may get a reminder msg of your response.
You state your syrinx is almost the length of your spinal cord. Can I ask, what is the measurement?
I can assure you that feeling of being scared is normal, let’s face it, we’re talking about brain surgery here and luckily not many people ever need to experience what it’s like as a patient.
I’ve required a few neurosurgeries over the years but I still have that fear each and every time, it never gets any easier.
Personally, I had to get to a point of acceptance that it was all outside of my control. I was handing all of that control over to the medicos and for a control freak like me, that was difficult. But the reality of it all was that once they anaesthetised me, lights out. I had no control.
Now, some recommendations for you:
-
Be Kind to Yourself.- You could come through all of this really well, but on the off chance that this is not the case, just be prepared to start any recovery slowly, NO, I mean S.L.O.W.L.Y.
-
Listen to your Body.- Your body will give you signs, listen to the signs. They maybe subtle, initially, but ignore them and those symptoms will multiply. Ignore them further and you can do yourself a major injury.
-
Don’t Compare.- When it comes to neurosurgery everybody’s experiences are unique. Some people seem to come through it all relatively unaffected, almost rejuvenated. Where as for others ongoing symptoms can be an issue.
I say all of this because I didn’t and I kick myself everyday for it. In the first instance I tried to compare my recovery with others. Sort of like ‘Well, if they can, then so can I…’ so I pushed myself to recover, I pushed too hard too soon. My body was telling me to stop, I ignored the signs. Telling myself I was building stamina and ended back in hospital needing further surgery. DON’T DO THAT.
This recovery thing can be a long slow process. How long? As long as it takes. But the more you push it, the longer the recovery. Some days I can be OK, some days I can be highly symptomatic, but then some days are just like OMG symptomatic. I never really can tell. I have to be prepared to manage whatever arises.
Please do keep us updated on how it all goes.
Merl from the Modsupport Team
Thank You for your encouraging words and advice. I haven’t had surgery yet but in the process of getting the last testing for the surgeon before we set the date. I was searching for people with similar syrinxes to see how there recovering but people get off the boards and don’t reply back.
Yes, it can be a bit like that sometimes, people sometimes come on here to ask questions. Then once they have the info they vanish, which is a bit disappointing because, as you have found, trying to locate people in exactly the same position as you can be VERY difficult.
My suggestion here is that you start your own ‘new topic’, then others browsing through will see it as a new post and respond from there.
Merl from the Modsupport Team
HI have you had surgery? Im new to the platform and my son has a large syrinx.