I am new to this site and would love to hear if anyone has had experience with some of the recovery issues I am facing - mostly with my vision and jaw. Here's my situation:
I just had a meningioma (9x13x13 mm) removed from my left fronto-temporal on August 9th followed by a second surgery the next day because I lost vision in my left eye. My tumor was encasing my carotid artery, near my optic nerve, and to quote my neurology report "predominantly outside the cavernous sinus involving the lateral wall and in the clinoidal area."
The good news is that my neurosurgeon says he believes he got everything! Also, I am getting stronger each day, able to for walks, and my headaches are minimal most of the time.
There are a couple of challenging things, however:
The first is that as noted, I ended up initially blind in my left eye. They did the emergency second surgery and didn't see anything wrong with my eye/optic nerve but they slit the maniskas open to give it more space, took bone out of my eye socket orbit, and cleared fatty tissue around my eyeball to relieve pressure on my optic nerve.
I am now fortunately regaining sight little by little. :) I still have double vision and it's like my left eye is wearing two sets of sunglasses and everything looks pixelated but I can see what's around me now which is fantastic. I expected some droopy eye and double vision but the loss of sight was quite scary and frankly, still is. Given that I am improving I am remaining hopeful that this will continue and I will have at least close to normal sight at some point.
Has anyone experienced something like this?
The second thing that I'm curious about is that I am am having an issue with my left jaw. It can only open a little bit without pain. Basically, anything bigger than a raspberry is tricky to eat. I know it's pretty normal to have numbness in the left half of my face (feels like I'm wearing a helmet) and healing scars in the incisions, exhaustion, etc., but the jaw is something that seems a bit odd.
Has anyone heard of that before?
Thanks for any help! Hope this isn't too long of a post.
Im glad you are doing better!
I had the same sugery for the same thing basically....only on my right temporal lobe , behind my eye.
I had droopy eye feeling for probably a year or more, but it waned. I still get it....the feeling that its drooping anyway, especially when I am overtired and/or its warm out.
My jaw was tight too because of the muscle they snip to do that surgery. Mine loosed up I guess over a period of maybe 4-6 months(?)
I still have vision issues, but I can see, so I'm not complaining.....trust me. I see spots on inside of periphial vision once in awhile
You are still very early in healing process so please give it more time and you will see some improvments!
I've had two biopsies done now. The first was a needle biopsy that was performed this past February and the second was an open biopsy performed about a month ago. I haven't had any vision issues, but my first biopsy did give me some jaw issues. For it, a horizontal one inch incision was made just above my right ear and this is where the bore hole was drilled so the NS could insert the needle into the tumor in my right mesial temporal parietal lobe. After the surgery, I had a lot of discomfort and pain with my jaw and as you are experiencing, I think it's because of the location of where the incision was made which cut into my primary jaw muscle. I could not really open my mouth all that much similar to what you described for the first couple of weeks and was on a soft foods only diet as I could not really chew anything. The soft foods only diet lasted for about 3-4 weeks and I gradually eased back into eating regular foods. It took awhile to be relatively pain free (about 6 weeks). Even when I could start eating normal foods again, my jaw was never the same and never had the same range of motion like it did pre-surgery. I was able to eat most foods pain free, but eating certain things like a hamburger or really thick sandwiches where I had to open my mouth somewhat wide was a bit difficult and brought some discomfort to my jaw. Also, eating hard chewy foods also brought some discomfort to the right side of my jaw.
Surprisingly and fortunately, I've had less jaw issues after my craniotomy to resect the same tumor in my right mesial temporal parietal lobe. I am not sure why that is, as the incision for the craniotomy also covers the same area where the prior incision was made. Anyway, over time, the pain in my jaw did go away for the most part and I was able to eat most foods without much discomfort or no discomfort at all. Like most things I suppose, it just needed some time to heal.
Hi John, Wendy, Beth and Amanda,
Thanks so much for your replies. It is really helpful just knowing that I'm not alone and that my challenges are part of the healing process. Wendy & John, I really appreciate the details you gave in your own experiences. You are very generous.
I spoke with my neurosurgeon (Harborview/UW in Washington) yesterday -- he called to check on me -- and he also told me that the jaw issue was normal. He gave me a couple of exercises to do -- use a plastic spoon and gently press inside my mouth to strech my jaw; and hold my chin and move my jaw side to side. He also was so happy with my progress on my eye that he thinks I will recover fully over time :). It is so strange to be thankful that I have double vision but I am... apparently it means that my eyes are starting to work together. Next week I see the neuro-opthamologist, get a follow up MRI and see my neuro-surgeon so it feels good to be moving forward.
I am still resting and slowly getting back into work a little. I find I have to be so mindful not to get sucked back in when I know I need to stay focused on my recovery first and foremost. The thing that really keeps me smiling the most is getting out for walks with my husband and dog!
Thanks again for your responses!
Hi Jan. It's really nice that you're optimistic. I am working on that; and my life is improving. Anyway, 1st, you're not alone with the double vision. I don't have it, but numerous members on here do. You might want to start a forum question w/ "double vision" as the title.
About your jaw pain, is it possible that you're grinding your teeth or that you have TMJ? Perhaps you might want to go to a dentist.
Anyway, good luck.