I forget, have you tried Lasix? It is another med that can work to bring the pressure down. I am very anti-LP. They have a lot of risks and should only be used in emergencies or to buy time for other options to work in my opinion from my research. My nuero had wanted that option as well but I have fought him for about 6 months now successfully. The csf replenishes in a matter of hours for most people so I personally don't see the point in going through the pain or the risk for something that will only help the problem for a few hours. Just my thoughts. Do your research and make the right choice for you.

Honestly, I think I'd seek a second opinion. I can't recall from your other posts why you not being managed by a NO? Do you not have papilledema? I remember you saying you had a lot of visual changes so I would think an NO would be appropriate. I know either specialty can manage PTC but I think most NOs have a higher proportion of their patients with this disorder than your average neuro does. If not I would find a second neuro to see.

It bothers me that he would recommend serial LPs, and potentially two surgeries without trying Diamox. I understand his reasoning, but I think that belief is old school rather than evidence based. Perhaps you could talk to a pharmacist and gather the most current data to present to him.

Serial LPs as a treatment plan is old school, too. That has fallen out of favor with physicians who are up to date on the research. The benefit:risk ratio is just too poor. Since we are constantly producing CSF, the improvements we feel from LPs can just be so transient. If I recall correctly, you felt wonderful after your LP but only for about a day, right?

The surgery may well be appropriate, but it would be great to know you've done everything you can medically first.

Good luck!

No, just say no. I'm sorry that is harsh and bossy and not supportive at all and please do not think I'm being mean - I had waaaay too many lp's and while they would feel good (sometimes, as long as I didnt get a post lp headache) after, it didnt last. There are potential damaging long term effects from having serial taps done - along with the risk of infection. My neurosurgeon actually described my brain like a sponge, with each lp it was (in his analogy) the equivalent of squeezing the sponge - after that happens so many times the sponge wears down, it isn't the same anymore.

Again, I apologize for being bossy or not helpful - that isn't my intention - I just don't want anyone to go through the extra pain.

Iham601, my doc will not let me take Lasix. I don't understand his reasoning behind it. He says I am to you to mess up my kidneys.

RN, I did feel wonderful after my LP but he refuses to try me on Diamox even though I told him about people who are allergic to sulfa drugs can typically take Diamox. Instead he just increased my morning dosage of keppra to try to get me through the bad afternoon headache that I feel behind my eyes.

Loveyalots, this is like my 12th LP... my sponge that your describing probably needs replacing lol

I would personally try to get a second opinion on the medicine route before going for any form of invasive route including surgeries or LPs but that is me. Lasix can be harsh on your kidneys and it can take them time to adjust but staying a little in the over hydrated side helps to safe guard your kidneys. My kidneys initially had some minor issues with the Lasix according to lab work when I first started on it but as I learned the right hydration levels and my kidneys had time to adjust that has gone away according to my last labs. My doc still watches my labs closely and I am sure if my kidneys get weird again would pull me from Lasix. I can't take Diamox due to sensitivities to it.

I think you need a new neuro.
his ideas are really behind the times and are not serving you.
you deserve a trial of Diamox, which is hard on your kidneys just as Lasix is, so....??? you have a serious illness and there are always risks and benefits and right now you need to get your ICP down more than you need to worry about a theoretical risk to your kidneys. and after so many LPs, what about the risk of Chiari to continue this when it is absolutely pointless? you would have to have them every other day for them to do anything.
if you need to do something for your eyes then it should be done ASAP and serial LPs are unlikely to help because they don't last long enough. you need a good neuroophthalmologist to determine whether the LP you just had made any difference with your eyes and how long it lasted to be able to say that might do anything. the NO will probably put you on the Diamox. or do the ONSF now. if you feel better after sleeping upright, then you need to consider treating sleep apnea to see if that will make things even better. what if it's all that and you don't need drugs or surgery?

Please...........listen to everyone on this. I had a significant hindbrain herniation that was initially diagnosed as Chiari. Painful isnt the word for this type of HA, this pain is the worse. I think I planned my suicide during a 6 day event about 4 years ago. Oxycodone dont even touch that pain!

It's time to talk with a PHARMACIST about the risks and rewards of Diamox. They can explain why there is rarely a reaction among people who have sulfa allergies. Basically, sulfa antibiotics and non-antibiotics have a different chemical structure:
http://www.medscape.com/viewarticle/482766_4


As for the possible reactions themselves, please see this research study: http://www.ncbi.nlm.nih.gov/pubmed/15234289

I have a sulfa allergy and I'm doing just fine on Diamox. To be sure my doctors started me at a very low dose and increased it very slowly. No allergic reaction.

Standing applause on that one Sea. Please take what she linked to your neuro or NO, send it via fax or email and demand it to be sent to your current pharmacy and inclide their phone and fax, tell em you anticipate it by the end of business day. I would.

Sorry, that sounded so bossy.

I tried so hard explaining in detail everything yall have explained about the allergy to sulfa / Diamox to my neuro... yesterday. He stands firm that he isn't starting this med.. So, I am have printed and going to my pharmacist to look at it and explain to me better and I am taking my mom bc a lot people to do not tell her no and she can be another advocate for me too. I believe yall. Sometime I wish I could take yall with me to my appointments. IT SURE WOULD HELP!!!

He is back on his kick of me needing to lose weight. I'm not huge. I agree I could drop some weight but I don't even meet the requirements for weight lose surgery. My entire family eats healthy and my mom asked me tonight what else can we cut from your diet to help you. we sat down trying to figure it out. We read an article that is surprising to us. I was dx with PCOS at a very young age.. never really had cysts though. but this article said that sometimes cushings disease can be mistaking for pcos. and cushings can cause PTC? do any of you have cushings?

About 2 years ago I went from a very healthy weight and gained about 80 pounds in 6.5 months. I never gained the weight in my arms or legs just my stomach. have the stretch marks to show all over my stomach/side/back/armpits/chest/ I also have the red face and my face has gotten rounder Just curious if anyone else has had cushings?

Second question: Do I tell my neuro him self I want a second opinion? Or do I tell his office staff? The office he works in has like 8 other neuros in it. If I were to be referred it is highly possibly it would be to one of his team members.

do you also have a "buffalo hump"? you ARE describing the characteristics of Cushings. that weight in your abdominal area will increase central venous pressure and possibly contribute to ICP, but also the weight there will limit your ability to breathe when you lay down, and so again, sleep apnea may be playing a role.
if I were you I would go to an endocrinologist to ask to be evaluated for that; it's not a neuro thing per se. that rapid of a weight gain is definitely a reason to be worked up and thyroid is one consideration also; that is an endocrinology thing.

and I would go to an Allergist with the reference I gave you and get the allergist to recommend to the neuro that Diamox is OK. that will relieve the neuro of the liability he feels in trying Diamox on you. and to both docs I would ask them who they would recommend for a different neuro, and just go. why do you need to ask your current neuro for the referral? call your insurance and tell them you need a different doc and who is on your plan.

My daughter has cushings, she is 5'2 she used to weigh 145 or so, then she gained 100lbs in a year, her spine changed, she has buffalo hump, vision worsed , her perscription in the 4s, she grew man hair, stach, beardo, chest . She was exhausted, crazy, several periods a month, and massive HA. Her primary care Dr. messed around with it for a year until her bp went to dangerous levels. Finally got with the right Drs and she is being treated for it, the damage in the meantime, who knows at this point.

Yes, see an endocrinologist. Maybe some pieces of the puzzle will fall into place! And if there is something going on that an endocrinologist can treat, it could help the weight loss fall into place. And hopefully other symptoms would follow, fingers crossed!

I get it, obtaining a second opinion can feel awkward. Is there another neurologist group in your area you could go to to obtain it, or is there just the one? I would say you don't necessarily need to talk to your neuro about it, though it seems like they keep pretty close tabs on you so perhaps it is an inevitable discussion. So if need be, you can just explain to him that before you make any major decisions about the LPs, surgeries, etc. you want to cross every t and dot every I and obtaining another medical opinion is only prudent. It is the office staff you really need to speak with though as they are the ones who would get you set up to see another md. Though I don't think it's a must that you see a second neuro if you get a NO to manage your care, which personally I think may be even more appropriate.

It sounds like your doctor is clear on his opinion on the Diamox, and while he is entitled to that opinion, I think it is a strong sign that you need to find someone else to manage your care!

It's hard, personally I am a very socially conscious kind of a person so the awkwardness of that would bother me too. When I first became sick with my fatigue and other symptoms 3 years ago and saw a neuro with a good reputation, I could tell she didn't get it. She was very nice but did not take my symptoms very seriously (which were very major and life altering for me, an otherwise very healthy person who was abruptly unable to think and work and function) I saw her twice and decided I needed a new neuro. The clinic made kind of a big deal about it, apparently patients are not really allowed to switch neurologists for the most part (partly due to the nature of the specialty). I had to insist to the assistant that I wanted a different doctor and was mortified to think that the neurologist who probably thought there was no problem would know I was unhappy with her. But she wasn't serving my needs and I was able to switch to a dr who got it. Granted, he ultimately couldn't help me either but at least I felt I was better cared for. You have to do everything you can to maximize your health and the management of it.