Hey, I'm in St. Louis, too! Yay Imos! If you don't mind me asking, do you see a regular neuro or a neuro-opt, and if it's the latter do you have a good rec? I've been seeing just a neuro and I'm pretty over due for an eye exam, haven't had one since my diagnosis. I've been thinking I should switch to a two in one to make life easier but I really hate finding new doctors!

Im on a once a year maintenance visit with NO, Dr. Banks Sheppard at Wash U. If you call there only see hom cause Dr Vanstavern is an ass, onept, and pure rude and lazy!
I dont waste mt time with any neuro here, anything you need Dr. Shep takes care of it. He's awesome, funny, amd truly cares.
Im putting out other fires with health, going to balamce disorder center at end of month for suspected ataxia. Just visited immunology/allergy identified food allergies and a crap load of intolerances. Im doing these last things because I wanna go back to work. Going stir crazy, but the balance issues are problematic.
Are u able to work?
Im here in Affton, maybe we could get together sometime if you want.

Soccer, sorry I hijacked your topic.

SG - fluoroscopy is a radiology technique where they can visualize exactly where to put the LP needle. it is usually done by an interventional radiologist/neuroradiologist, in an Xray department.

if you have a cough, you don't want to have an LP because coughing is a valsalva that could falsely elevate your opening pressure.
if you have nasal congestion, it will increase your sleep apnea, or even cause it if you don't have it at baseline. the sleep apnea will raise your baseline ICP. if you have been worse lately it's because of the cold. it just depends on whether you want to make sure they get a positive reading or not, whether you put off the LP until your congestion has cleared. your doc probably won't connect any dots besides with your cough. the most accurate reading will be if you wait til your nasal congestion is gone for a few days. I'm concerned that your pressures may have been borderline in the past and that's why the confusion. might be better to get the LP now so your ICP is a little higher and less confusing for the docs.

there's evidence that papilledema can be caused by ICP spikes that occur only during apneas at night, with normal opening pressures while awake. but your docs may not be aware of that research. I hope this is making sense.
well the take home lesson is you should have a sleep study as part of your evaluation.

Mary;
OK it sounds like this scalene block is a diagnostic test to determine how critical the alteration of blood flow is in your brachial plexus. I don't know why a side effect would be dizziness. if there is a surgical procedure to fix this, I am very intrigued to see if that would fix your IIH. because it ought to improve / reduce resistance in the venous system that is distal to your brain/skull.

Sophiasmom, interesting stuff! It's been nice to read your thoughts on the teeth/jaw alignment and CVP. I love the nerds playing football example.

Soccergirl, my ICP goes up when I have a bad cold. As sophiasmom said, perhaps you SHOULD go ahead with the LP even knowing that, given how dense the docs have been with getting you diagnosed having your ICP a bit more elevated than it might otherwise be isn't a bad thing. I doubt it would give you a false diagnosis. I think it is really poor that that ER doc who had to change his scrubs diagnosed you with complex migraine. While I am no migraine expert, I can't imagine why that would explain an elevated OP. Ridiculous.

My NO recommends that after an LP while you are lying flat on your back, you make a fist and place it under you, between the site of the LP and the bed, to apply additional pressure over the site and decrease the chances of complication. She told me to do that (switching fists from time to time of course) for an hour. Good luck!

Thanks Sopsmom, I will give em a call back just to ask some more questions. Interesting thing is when I avoid certain foods the swelling in the clavical, arm, and underarm are gone, so is the pain? The surgeon looked at me like a moron when I told him this.

Mary that is really interesting. I suspect that the barrier problem we were discussing is something that is systemic. meaning, if something is giving you leaky gut because your intestine is leaking, that is probably leaking thru and affecting the barriers in your brain, skin, lungs, etc. why not in your lymph? these barriers are in all of our blood vessels. recall the stats that 77% of us with IIH have peripheral edema (in the legs). that is a sign of peripheral leaky barriers. so maybe whatever you are eating is affecting the barrier, causing more leakage from your lymphatics around your axilla, leading to that swelling. what you are describing is what people experience after an axillary dissection for breast cancer. point that out to your doc.

now this raises a particular point. is it this swelling that is causing the venous hypertension in that area? if you have surgery, is that going to fix it? if it's really a barrier problem, a problem more at a cellular level with your lymphatics? you know that diet plays a huge role for you.

well I really think that in IIH the problem is two fold. it's the anatomy, but it's also a barrier problem (leading to brain edema). which is what I am talking about here with your shoulder. maybe fixing both is the only way to cure. if you fix the anatomical problem, maybe the barrier problem becomes less significant. that's what I've found. but you know what I think contributes largely to the barrier problem.......
OSA of course, lol.

SOOOOO.......
if you had jaw surgery and fixed your OSA and fixed your forward head posture, would that address both pieces to this? the anatomy that causes your shoulder anatomy to pinch the brachial plexus, and the OSA that perpetuates the barrier problem?

my peripheral edema is largely gone after jaw surgery....

hope you know I'm just brainstorming and connecting dots. hope it was helpful.

Hey sophiasmom want to come vacation in Colorado and explain some of your theory to my nuero on the 27th??? Lol I am fitting every last piece of it except haven't had the sleep study to prove the OSA but from what you have sent me, my own research, and as you say being human we will assume I have it. Complete with dx of Schuman's kyphosis at 14 yo that the curvature has only gotten worse. Right before my IIH dx I saw a chiropractor who dx degenerative disc and from those films I saw both lumbar and cervical curves are severely exaggerated at this point, yes I am a hunch back to who ever it was who posted that comment. I am sure all of those issues play havoc on air way as I am a mouth breather and after reading dr hang's info on tounge crowding deffinetly have issues there and on csf flow. Now for the trick of explaining all of this to my doc in away that he'll understand and investigate with me.

Thanks sg for letting us use your intro to brainstorm.

Thanks everyone for the replies. I've had many LPs in the past. I have mentally blocked them out bc I've several bad experiences so I do not recall all the things I need to know. I just wanted to get the positive right now and that is what yall have given me. I'm just ready for some relief and this state of fogginess to go AWAY. I'm suppose to be starting a new job. So after the LP and I go home how many days before I can go back to work? I should probably give my manager a heads up. I just do not know how to break the ice to him. It's kind of strange bc if I get admitted to the hospital it would be to his floor and his nurses taking care of me bc I just got hired onto the nuero floor which wasn't really my pick. I don't like to work necessarily where I might have to be admitted.

I would schedule it Thursday, you "should be" ok by Monday that is you take all those days in between to lay flat, load up on fluids including caffiene. As far as your boss, lets be positive at this point that support will be given, understanding, THE LAW OBSERVED, and maybe will spark his interests to help you. Maybe while your delivering the news you can get some great tips from them.

Sounds like a plan. I should hear from scheduling dept tomorrow. I will keep yall posted. Thanks for all the support. :)