Hmmm does seem pretty quick? what was your last pressure reading and how much diamox are you up to now? (you on anything else with it?)

Ok, to start off I have a shunt so I speak with that experience.

First off, if you don't feel comfortable with a shunt, then ask 10 million questions. A second opinion is highly recommended, and make sure you feel comfortable with the doctor. Chances are, you will be seeing them for the long term (even if just to check the shunt yearly).

The NO will probably be more cautious about recommending shunt surgery. Instead, they (at least in my opinion) will be more looking at ONSF, if any surgery at all is recommended. If you do not have Paps, or your vision has not been affected yet, they will be more likely to encourage you to wait for any procedure. As was recently mentioned, some NOs see IIH as a headache problem, especially if no Paps are seen.

I don't remember how long you have been dealing with this. If you are unsure, keep asking questions until you feel comfortable with your treatment plan. Shunts are not a win situation for everyone, and they do fail. In my experience, the shunt worked for six weeks amazingly. After that, almost all my symptoms came back, plus a few. Now I have the head pain plus have just recently started falling. However, there are people who get a shunt and then feel amazing for years. You just don't find them usually online looking for answers and support.

Hoping you find answers soon,
Kristena

:) let's see if I can remember, I was diagnosed in early April; couldn't get into a neurologist until late April, early May. I do have paps which is more pronounced on the right than the left. I was (prior to diagnosis) on 1200 mg of Ibuprofen and the neuro doc wanted me off that so she started me on an increasing dose of Diamox. I am now at 1000mg per day. (500 mg in the am and then 500 mg in the pm) I am struggling like hell with the side effects. The ibuprofen seemed to do a better job for me at keeping the headaches at bay. I have now had several headaches that wake me in the middle of the night and now I am starting to have more symptoms on the left: ear pain, eye pain and sore throat. (I had that on the right too along with jaw pain and pulsitle tinnitus.) I have had dizzy spells too and spots in my vision.
My opening pressure was 25 but again I was on 1200mg of ibuprofen and I think that was helping the inflammation but my neuro doc thinks I'm crazy.....my platelets are elevated (also a sign of inflammation in the body.)
I don't know what to think of it all. I have several allergies, including different foods (bananas, watermelon, walnuts,and others right now I can't remember and hubby isn't much help tonight) I am allergic to different meds....I had one anaphylatic episode when I was 38 and carry an epi pen now.
I just don't get it....I will be happy if the NO does a sleep study on me though because the neuro doc wouldn't.

Aim,

I had severe papilledema (grade 5 both eyes) and an opening pressure of 46, but it wasn't until I was able to get my dosage of Diamox to at least 2,000mgs daily that the swelling subsided and IIH side effects began to ease up.

I think it's only fair that your doctors should at least get you to an appropriate level of Diamox before they make any big decisions on surgery. I know for me personally, 1000mgs just wouldn't have made the difference unfortunately.

Also, as for the sleep study. Sometimes if I can't get a referral from a specialist, I will ask my primary care physician and they always refer me. That could be worth a shot if you have a family doctor you are seeing.

I hope your visit with the NO goes well! Good luck! You will be in my thoughts and prayers.

-Amethyst

Hi AimHigh: I agree with Lovely in that the NO convo needs to focus on ONSF rather than shunt at this point. I'd think they'd certainly increase your Diamox and add a Topamax or Lasix, too, before shunting. I can't remember if you're already on Topamax or not (or as Mary calls it, Dopamax). The issue is to save your eyes, which ONSF has a better chance of doing than a shunt with your pressure of 25 and your neuro's reticence to treating until you've hit 30 (expletive).

However if the convo does move to shunting, absolutely get a 2nd and/or 3rd opinion. I, too, can speak from experience having had 3 VP shunts, all of which failed and made me worse. I do not have paps, tho. One of the key shunting questions is "are my ventricles big enough to sustain a VP shunt?" or "how does an LP shunt work to preclude hindbrain herniation?" Adjustable valves and anti-siphons are only moderately effective either way. If you would like more questions to ask, I'm sure we'll all chime in with dozens.

When do you have your appointment? Sending all good luck and fingers crossed for you. Hooray for getting to an NO!!

Glad to hear you are being sent to an NO.

I too think it's a bit premature to jump to shunt. I am guessing the neuro may be talking about it early since you are having such a hard time on the Diamox? Diamox is the ideal med for many of us to use if at all possible, you may do better on it with time as your body acclimates. It's hard to be sure if the symptoms you describe are Diamox side effects or if some of them may be your IIH evolving? If your vision tolerates waiting, it would be nicer to be able to give the Diamox time and/or try alternative meds to keep your pressure under control.

I agree with the suggestion of contacting your PCP for the sleep study order, perhaps you could point out other suspicions for sleep disorder in addition to IIH, such as daytime sleepiness, snoring, etc that would help to persuade.

Since you are a sensitive/allergic kind of person, like so many of us - have you ever done an elimination diet to look at the large food triggers, such as gluten, casein, etc.? I had no indication that I was sensitive to gluten before I did one. Just a thought, it could help with your inflammation too.

GL, hope you like the NO!

Yep yep really agree with all the above - but maybe they just want to think out all the potential options but i agree that it is far too early to be seriously talking shunts.

I know you are still struggling with the diamox but its still relatively early days. It was like a switch for me when i hit 1.5g diamox (but i am also on 100g topamax) there are also so many other drugs and combinations - that should be tried and dis-guarded before surgery - unless you are at imminent risk of going blind (not that trying drugs that do work is a fun process I grant you, but neither is brain surgery)

Anyway it doesnt hurt to get as much info as possible, so good luck at your appointment :) just dont let anyone start firmly suggesting any courses of action you are not happy with :)

When she started talking about sending me to someone for the shunt....I put up a timeout sign with my hands. She did not like the fact that I wanted a second opinion and I told her I wanted to see an NO in GR, MI. It's a drive for me but I already knew who I wanted to see. She said, "oh you want a second opinion?" I said yes. She sent me on my way and I am happy with this decision. If I don't like this new dr, I have options to go to Layfayette, IN to the NO there who is affiliated with my old hospital in Indianapolis or I can go to OSU. Which is a hike but at this point I am ready to fix this.

As for the sleep study, I don't want it to be done at this little hospital. I need to have it done at a big hospital where they recognize hypopnea not just apnea and snoring as an obstruction.....which is another whole discussion lol

My meds started 6 weeks ago and she started me on 250mg once a day for 3 weeks and then the slow climb each week of increasing by 250mg until I reached 1000mg per day. (500mg in the am; 500mg in the pm) I start week 7 today. She never adjusted my meds otherwise. I actually picked her because she was from Indiana :P being a Hoosier myself I am just disappointed because I never felt comfortable with her.

My paps is grade 3 on the right and 1 on the left.

I am now starting to have increasing symptoms on the left. (eye pain, ear pain and sore throat) which I had in the beginning on the right. The spots in my right eye are not as frequent and my pressures in my eyes are normal. So the shunt would be for the headaches not the vision. I agree with the ONSF being the first thing, but my headaches are in the middle of the night....i awoke at 12:30 am to a major headache and I dry heaved once. (I was just removed from ibuprofen and on low dosage diamox) I was up until 2:30 and had to get up at 6:30am this headache and lack of sleep caused me to have some crazy cognitive issues that morning. I couldn't sink my thumbs together to do neonatal compressions to pass the mega code. In neonatal resuscitation the preferred method is your thumbs side by side with hands around the babies sides. (in infant CPR you can use 2 fingers but not neonatal)

I am happy to be moving on. My appt is July 3rd and the scheduler told me to expect to be there for several hours.....which tells me that he will look at my eyes.....want to do an LP and blah blah blah :( or they over book and I will be in the waiting room for 2 hours before seeing the doctor.
Either way I will take my mp3 player and listen to calming music :D Thank you everyone for the help....this stuff just seems so scary. I couldn't do it without your support.
Blessings, Aim

oh aim i had some mad bad headaches in the middle of the night even on 1g of diamox. felt like someone had whacked the top of my head with with giant metal spoon - weird description lol but so much pain, plenty of sobbing into the pillow not knowing what to do with my self for hours and loads of knock on effect - my neuros would never consider shunting for pain control but then we know how bad my neuros were -so lets not go one extreme to the other.

but like i said it was like a switch was thrown when i hit 1.5g, for me that was the threshold. AND i have always been on 100g topamax all along as well. I dont think you are having that many drug symptoms? I think that you are struggling without the brufen (I did too when i kidneys when bad and i couldnt take NSAIDs) i think your pressure is still too high and your symptoms are IIH and chronic pain - nausea, dry heaving, sore throat, lack of sleep, cognitive (IIH also) - i would ask about some intermediate pain control (you tried all the gababpentin and amatryptaline etc?) and ask about adding in a small dose of topamax - well before you think shunts for pain control.

Anyway hope the head is behaving its self at the moment. xx

all of this just s-cks the big one (sigh) as it seems worse now than before when I was on the ibuprofen....way worse. Asking for prayers since I am going to try to drive to Indianapolis tomorrow and its about a 5 to 5 1/2 hour drive. I am hoping I can do this. My kids really want to go home to see their friends.....and hubby is down there this week on business so we are trying to kill 2 birds with one stone.
I hope everyone has a wonderful weekend and blessings, Aim

Good luck tomorrow, Aimhigh...will be thinking of you and hoping beyond hope that it's a GOOD day! :)