Last week I went to Jefferson University Hospital for a consultation with a neurosurgeon. My neurologist set up the appt. and had requested that I be seen by a doctor who specialized in IIH and/or skull based tumors (i also have fibrous dysplasia of the skull base and they are trying to determine if there is any sort of relationship between the two)
Unfortunately, the scheduling department at the hospital did not do their job and set me up with a neurosurgeon who specializes in the spine. Not even close! His first question to me was why was I there in his clinic? I explained that I was supposed to see a different specialist and that I even called to confirm my appt and double-checked about his area of specialty and was told that this was who I would be seeing.
Needless to say it started out wrong and only got worse. This doctor basically spent less than 30 minutes discrediting what my neurologist had spent a year working to diagnose. He told me that they probably did my lumbar puncture incorrectly. He asked why they even performed it in a hospital when most neurologists would do it in their office. I explained that I was very pleased that they did it in a sterile condition with an x-ray to guide them. He told me they don't need an x-ray because I am "skinny" and they should not have had a problem finding the right placement. He then told me that my pressure reading of 30 cm was only "mildly elevated" and concluded that I probably didn't even have IIH at all. How can he undo my diagnosis after less than a 30 minute conversation? He asked if I had papilledema and when I told him no, he basically said that was confirmation. He said that I didn't fit the "profile" for IIH. I am not obese and I don't have papilledema. I even explained that in my own research of this condition I know that not everyone with IIH is obese, nor do they have to have papilledema.
He was so smug and literally smirked as he told me that I don't have IIH, I almost got up and walked out. I'm not sure how I controlled myself. My husband and I drove 3 hours both ways, paid for gas, interstate tolls, food, and my insurance copay and came home with absolutely no more information than before we'd left.
He had the nerve to suggest we reschedule and make an appt with another neurosurgeon in his practice who specializes in skull based tumors, because at the very least, that was evident in my MRI.
The next day, I e-mailed him to tell him that I would not need to schedule that appointment and that I was very upset with his unprofessional behavior in discrediting my neurologists diagnosis after speaking with me for less than 30 minutes. I even sent him a pdf file of a study of IIH patients who were in 3 groups - those who were obese and had papilledema, those who were not obese but had papilledema and those who were NOT obese and did NOT have papilledema. I suggested he read the article so that he could become more familiar with this condition.
My doctor is now in the process of referring me to another neurosurgeon but I am so frustrated. I did agree to increase my dosage of Diamox to 500 mg. He would like to see me increase it to 1000 but I am not sure I am ready for that. The numbness and tingling are overwhelming at times. And I have ringing in my ears, nausea, lack of appetite, and frequent urination.
What should I do?

I have to say I was completely dumbfounded by this and absolutely steaming mad for you. I don't know what to comment on first, his unprofessional behaviour, his total ignorance, his arrogance or his entire conduct. To sum it all up in a word would be a word not acceptable to use on this site, but I think you know the one I mean.

Well done you for emailing him that study, I would love to have been a fly on the wall when and if he read it. I'm sure this experience will leave a thoroughly nasty taste, but at least you wont be seeing him again, and your doctor has been prudent to refer you to another neurosurgeon, who I hope he finds to have knowledge and experience of patients with IIH.

As to whether or not you should increase your dose of Diamox to the one your Doctor has recommended, is a choice that only you can make I'm afraid, and you need to weigh up the pros and cons of why it would be necessary to follow his advice. I know the side effects can be intolerable. Have you discussed the problems you are having with the side effects with your doctor? The medication we are prescribed for IIH, unfortunately all of them have side effects, so we are in a damned if we do damned if we don't situation.

Have you been able to discuss this with your family and got their feedback on this? It is a big decision to make and discussing it with your family can take away some of the burden on your shoulders, especially when they have seen the effect the medication has had on you. I would also have another chat with your doctor, and ask him if you were to increase your dose, would he be able to give you anything to counteract some of the side effects, such as the nausea.

Other members will have been on this high dose and will I'm sure be able to give you lots of helpful advice and their experience on how it affected them when taking it. I know for myself when I was on that high dose, I was also prescribed something for nausea and also stomach problems which helped, but there was nothing they could do about the tingling and numbness, and the frequent urination was a necessary so they couldn't do anything about that either.

Heidi

:Angry: I've been dealing w/ IIH for almost 15yrs and rare diseases the majority of my life, but I'm still astounded by the unprofessionalism and ignorance of so many "specialists". I'm so sorry you had such a frustrating and disappointing experience..we've all been there, but it's so disheartening! I'm really glad you educated him on IIH and requested another referral. Not everyone would have stood up for themselves but advocacy is soooo important, especially with all the misinformation out there.

It sounds like you've been through a lot, but have a good relationship w/ your neurologist..keep the lines of communication open and hopefully it will all come together soon! Heidi really gave you a lot of good information and suggestions, so all I really need to say is "ditto".

Take care, and keep us posted on your progress!

Julie

Uggghhhh!!!!!!!!!! How incredibly frustrating! :shock: I'm so sorry you had to go through that, sweetie, and I think you did EXACTLY the right thing in sending him that email and attaching the study about IIH!

I'm actually going to be seeing a neuro-opthamologist at UPenn in Philadelphia later this summer who is very knowledgable on IIH. Her name is Dr. Laura Balcer. And there are two others in the department also, Dr. Steve Galleta and Dr. Grant Liu, who are very experienced with IIH -- all are published in studies on the subject, in fact. Not sure where you are in Pennsylvania, but thought I'd throw it out there just in case it might be helpful. I know you said your doctor wants you to see a neurosurgeon though, so these docs might not be the right specialty for what he is seeking for you.

I'm on 1000 mg Diamox, and I do pretty well with it. Of course for me, this was a decrease from 1500 mg which was my original dosage. Some Diamox side effects have gotten better over time as my body has adjusted to the medicine. Have you talked with your doctor about slowly increasing the dosage over time?

Anyway ... sending *big hugs* ... let me know if you have questions or if I can be helpful to you.

Thanks for all of your support and encouragement. I was just so frustrated that a doctor in his profession could be so condescending both to me and my husband, as well as towards my neurologist.
The neurosurgeon did reply to my e-mail and told me that he was very upset that I felt the way I did and that he in no way intended to come across the way I am saying he did. He claims he just wanted me to have all the facts before I entered into anything as severe as a surgical shunt. I don't buy it but at least he made the effort to reply. He told me he was sorry that my visit fell short of my expectations.
It certainly was a lesson learned to not expect someone to have all the answers.

@ Bananasmom - I live in central Pennsylvania so I'm about 3 hours from Philadelphia. Jefferson Hospital is also in Philadelphia. I only recently talked to my neurologist about increasing my dosage of Diamox because I was only taking 375 mg and his goal was to take me to 500 or 1000. I didn't want to increase the dosage until my eventful trip to Philadelphia. I was willing to try it in order to see if a higher dose would alleviate my headaches. Lowering my dosage would be of no benefit right now. It took a while for the side effects to lessen when I was on the lower dosage so I'm hoping that as I increase, the side effects will lessen as my body adjusts. I think it just sucks that we are so limited with choices for medications!

@ Heidi - I did ask my doctor about trying something to alleviate the side effects but he said it is usually a bad idea to start treating the side effects from one drug because then you may have side effects from those drugs. I have lost about 13 pounds in the past 2 months, mostly due to decreased appetite but I was also hoping it would somehow help my headaches since some doctors think even a small percentage of weight loss sometimes help. It didn't help me unfortunately. I am 5'5" and weigh around 135 lb. I have weighed less but that was 10 years ago when I spent 3 days a week at the gym when my kids were in school. Then I went back to school and got my degree in elementary education and became a teacher. I don't have time to work out 3 days a week anymore.
As for my family, I don't think they still quite understand how this condition or the medication affects me. My husband is really trying and is more understanding of when I do have a headache or am tired or fatigued. My mom asks me how I am doing but seems to want me to have a reason or a cause for my condition and has a hard time accepting that there probably isn't a cause, as is true in many cases.
It's such a frustrating journey and I've only just begun. Is this how it will be for the rest of my life? The constant struggle with headaches and adjusting medications?

At the start of my IIH saga, as I like to call it, I felt very much the same as you. I too am 5'5" I wasn't overweight but pregnant, infact after the birth of my daughter I had only actually put on 6lbs and was still in the right weight ratio. As a young Mother at the time, my feelings were exactly like yours are now. My family found it hard to understand and I had no information about it to educate them, only that from my Neurologist who didn't know much about it himself at the time.

I struggled with the side effects the whole time I was on the Diamox, but I managed to function enough to go back to college and then to go on to working full time. I wont say it was easy, but as I was basically on my own I had to teach myself to adapt the best way I could, until I managed a short remission, and when I came out of it I had again go back to the way I'd done things before.

It takes time and trial and error, but you will be able to function and cope a lot better, it just feels like it's a long way off from that right now. Please don't despair you are more capable than you know, but you have to give yourself time to adapt and learn what your IIH body can cope with, which means changing the way you do things and building up to a comfortable level for you.

There is always chance of remission so don't give up hope.

Hi dpope. What a disappointing trip you had. May I suggest that you contact the general manager of Jefferson Hospital. You need to report what occured with the mixup in which doctor you saw. You should not be held responsible to have to pay for the error of a clerk. You were sent to the wrong doctor, in more ways than one :roll: , and to add the insult of having to pay for such abusive is totally immoral. Your hubby was there so he can confirm what took place. Stand your ground and insist that they not balance bill you for anything involving that trip.

I don't understand it. Of all the different specialities there are, why are the vast majority of idiots neurologists? Is that one of the prerequesites of becoming a neurologist? You have to be an uncaring, irrational SOB??

Are you closer to Pitt? to Wilkes Barre? We need to find you a better team of docs. You need a team that will create and execute a plan of action. You need an idea of what to expect next. So, if the Diamox at it's current dose doesn't work, what next? Increase dose? Add another med? Change meds? Will a lumbar drain test be ordered sometime in the future? Is a shunt a consideration? Once you have a better idea of what may be in store for you, the anxiety level will go down, a bunch!

By the way, I was 55 when I got sick with a virus that caused my ICP to go up. Fortunately, my entire team of docs think outside of the box, even our Neurologist, who works with me on pain control. No one else that we know of has ever been treated by getting a shunt for this. But I did, and it is working. So keep searching and I hope that you too will find a great team!