if you have papilledema you need to see an ophthalmologist immediately and get followed and treated. your PCP is incompetent if they have not sent you to ophtho, and so is your optometrist. I would also recommend seeing a neurologist which is the specialist to see first if you didn't have papilledema, although you should see both. 27 is definitely elevated.
yes you should try to lose weight, and I would also recommend getting tested for obstructive sleep apnea.

so, get a new PCP. it's pretty sad if you can diagnose yourself better than your doctor, and an online forum can give you better advice for management. wow.

I agree with Sophiasmom06. You need to see two specialists a Neurologist and NeuroOphthalmologist. If they don’t have a NeuroOphthalmologist then you need to at least see a Ophthalmologist on a regular basis until the Papilledema is resolved. If your PCP doesn’t have enough sense to refer you to the right doctors then you definitely need a new one. Good luck!

I’m sorry I also meant to mention your vision is truly at stake here when papilledema is involved. I almost went blind and still had 20/20 vision. When you have papilledema it’s basically the CSF choking your optic nerves and it kills them. Sometimes you don’t notice any actual visual symptoms except subtle dimming of your vision or noticing that when you see a bright light you get blinded by it and it takes longer to wear off. A good test it to close one eye focus on your finger in front of you and move it around, you’ll notice that the tip or whole finger is chopped off or disappears. That’s vision loss because of the swelling. They can tell the severity by doing the visual field test and taking pictures of your optic nerves and there are a couple other tests they do but I can’t remember the name of them that is why you absolutely have to see a Ophthalmologist on the regular.

Thank you guys! I feel bad second-guessing the doctor... but thank goodness for the internet or I feel this would have gone unchecked!! I really feel the need to write a letter to her practice stating that she did NOT provide due diligence in my case. Honestly, it was like she didn't even care.... more like a "what do you want from me now"... attitude.

I am searching this week for new doctors!!

maybe wait until you make sure you didn't have any vision loss. send her the notes from your ophthalmologist which should make her feel like an idiot, regardless of what they say about it. but if you have vision loss and she delayed your care, then that's a big deal and you could report that to the medical board. I am so sick of docs with this attitude.

the thing is that your DOCTOR should be on the phone getting you in with ophthalmology weeks ago. you should not have to wait for a new patient appointment which will take who knows how long, you should have your doctor paving the way and saying no you need to see my patient tomorrow, they have papilledema! how long ago was the pap diagnosed? normally how it goes is pap is treated like an EMERGENCY. they send you to ER to get your LP and MRI, and to see ophthalmology immediately. so the other question is why the optometrist didn't send you to ER? with pap the most important thing is to immediately rule out a brain tumor. if they didn't treat it like that, they were negligent.

Yeah....

Aug 4th: went to urgent care for a migraine and seeing spots, let them know I had also had daily headaches for about 6 weeks, they told me I was fine and to maybe go see an eye dr to have my vision checked.

Sep 5th: Waited several weeks for new patient appt. Optometrist found pappilodema, said to see PCP for possible tumor/IIH

Sep 7th: PCP visit. I relayed all of the eye dr information (literally gave her the printout). She appeared to be diagnosing me with regular hypertension. She wasnt acting like she was registering the "intracranial" information. I corrected her and requested MRI after she said "we can do whatever you want" like what I was suggesting was potentially unnecessary.

Sept 11th: MRI and MRA. Normal results. PCP said to follow up in a month and eat healthier to reduce blood pressure. I thought maybe reducing my BP would also reduce my head pressure so I went with it. Hell, doctors know more than I do, right?


Oct 8th: PCP visit. Normal blood pressure. She asked what I wanted to do next since I had normal blood pressure. I said the eye dr said to do an LP, and I asked if she thought that also? She said to go back to eye dr. At this point I began seriously researching things and wondering if she was incompetent.

Oct 19th: Optometist visit. He said I def needed an LP but he couldn't order it as he was not an MD. I called my PCP and ordered the LP per the eye dr.

Oct 23rd: LP with 27 cm h2o opening pressure. My PCP said via the online portal that the results looked normal. I requested an appt for this upcoming Friday 11/2 to discuss my "normal" results and what to do next.

So I guess we are closing in on 3 months since the initial appt, with no official diagnosis yet. We will see what happens on Friday. After finding this page I'm very motivated to start over with a different group of doctors.

I would definitely suggest a neurologist at this point, your eye doctor can refer you. Send or take all of your records with you as they will want to know all of it. If you become skeptical of neurologist go ahead and ask for referral of a neuro surgeon. While I was going through figuring out what was going on I seen many specialists and did have incompetent ones as well, they don’t like to be called out for it. My surgeon is the best! Even if you don’t have to have a shunt placed they will help you with treatment.

Yes what Sophiasmom06 said Papilledema should be treated like a Emergency! My PCP kept putting off my headaches and dizziness then I started having the dimming vision and my PCP was like I can’t help you with that and said you need to go to the optometrist (didn’t even send me to Ophthalmologist). So I go to my Optometrist (not affiliated with the hospital, little family owned clinic) and the optometrist was like you have Papilledema and retinal hemorrhaging you need to go to the ER now and I am calling your doctor to get you directly admitted. My optometrist did all that and I was admitted to the hospital overnight where I had all the tests done to rule out brain tumor or hemorrhage. I got a Neurologist and neuroophthalmologist and started treatment that same day. I also got a new PCP after that because she never listened to me. Everyone is dropping the ball on you and you are the one suffering. I believe you can ask for a obudsmand at the hospital to get you the care you need. No one is following the standard of care for treatment for you. I hope you start treatment soon! Good luck!

I would report your PCP to the medical board. lay it out just like you laid it out to us. this is blatant incompetence. she is completely clueless and has put you at risk. you should have had the LP and treatment starting nearly 3 months ago. if you can't get into ophthalmology next week then call your PCP and demand they get you in. you could threaten to sue but no point threatening because if you have lost vision you definitely could sue. that doctor is dangerous. what if you had a brain tumor and she didn't get the MRI (which she only got because you asked for it), and you herniated and died? if she cannot recognize that papilledema is an emergency then she should not be practicing medicine. and I'm a doctor. (IIH does not lead to herniation, but can cause blindness.)

the optometrist also, should have sent you to ER. if you had been seen in ER for pap then the right things would have happened, bypassing your PCP.

As we navigate the road towards healing our IIH I think we all have come across incompetence.
I have had my share of incompetent doctors the latest was a radiology resident who couldn't find the correct placing for an LP under floroscopy! It was my most painful LP and it was my 12th in two years! Then I asked him what the opening pressure was and he told me he didn't do it yet he's still collect fluid for testing!! I told my neurologist about it and I hope he followed up on it.
I see a Neurologist and a Neuro-Ophthalmologist. I also have lupus so I see a Rhuematologist as well. I almost never see my PCP,

oh wow, that resident was a dolt!

Cbradio, I feel your pain! So sorry you had to go thru that, its bad enough dealing with the IIH and doctors that don't really have a clue. Did they put you on Diamox? Hang in there. I also get a lot of my info from here too