Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Neurologist tomorrow

Jul 20, 2016 4:45 PM

Hi guys,
It's been a few days since I've posted, mainly because I've been so sleepy from those antibiotics. Sorry, my bad. I need to ask for something that I don't normally ask for. I've talked to some of you quite a bit, so you might know what's going on. I was diagnosed with pseudotumor cerebri back in March of this past year. Well, had an emergency appointment with the neurologist in June which showed the pressure in my eyes has gone up tremendously. It seems as though each time we go up on the Diamox dose that my body seems to get adjusted to it so quickly. It almost feels as though something else needs to happen. So, I have my BIG appointment with neurology again tomorrow morning at 10:00 am. I'm asking if you guys can send me some good vibes. I've been debating the merits of asking for a referral to a neurosurgeon so we can discuss options at this point. I'm getting really frustrated and angry because I'm still getting headaches and eye pressure/pain pretty much every day and I feel like my concerns are NOT being taken seriously at this point. Heaven forbid, I don't want to have to have a shunt put in, but if worse comes to worse, then so be it. I'm beyond tired with it. Sorry, I needed to get that out before it came out in a nasty way tomorrow. I'm pretty sure it will come out that way tomorrow as well, but it helps for me to get it out!!!!

Jul 20, 2016 4:59 PM

Hugs. Positive thoughts and energy being sent your way.

Jul 20, 2016 6:26 PM

Amanda, I think it would be a good idea to discuss all options. Ask for the referral or a second opinion, if the doc doesn't seem helpful or that he's listening. I know you've been through a lot the last 18-24 months. Hugs love & prayers that this appt will be beneficial in many ways! 🙂💕🙏🌸

Jul 20, 2016 11:04 PM

Agree, absolutely get the referral for neurosurg so you can get a consultation. I have found that they have a very different knowledge base than neurologists. Good luck!

Jul 21, 2016 5:55 AM

Flappys, even if we are not dealing with the spinal issues at this point, a neurosurgeon would still be a good idea?

Jul 21, 2016 8:35 AM

I think so. I'd been going to Ortho surgeons on my spine for 4 years, to no avail. When the neurosurgeon saw my cervical spine issues, he's wasted no time. He's very upset at the others docs for dismissing me so.

Jul 21, 2016 10:11 AM

Okay, so right now, the plan is to do another spinal tap(Wednesday morning at 11:30) visual field testing on the 8th of August and follow up with neuro on the 30th of August for a follow up appointment to see how I am doing and to discuss a possible shunt placement at that time.

Jul 21, 2016 11:06 AM

You'll be in my most positive thought. 🌻💐

Jul 22, 2016 7:19 AM

Having a bit of a rough morning. Woke up feeling really nauseous this morning about 3:30. Settled back down to sleep for a few hours. Still woke up feeling incredibly nauseous. No appetite at all. Food doesn't even look good at this point, but am still putting away fluids. This is common with pseudotumor, so I know it will go away after the spinal tap is done.

Jul 23, 2016 11:38 PM

Please keep us updated. Hope it goes as well as possible. I Know it can be quite painful, and difficult along with stressful... No words but I trust this community understands.

Ready to start relieving your pain?

Join Community