Glad to hear that! I have an appointment in a week. I'm a couple hours away, but I've heard it's worth it!

Question: what tests did they do when you were referred? I'm scheduled for an MRI with and without contrast, and MRA with and without contrast, as wall as a NP test (nanoparticle? to test the blood brain barrier? Not sure).

It seems a little excessive considering they have all of my MRIs and MRVs already. Thoughts?

I am glad you have an appointment there!!!

When I first saw them, I was admitted into the hospital directly from another one (transferred from an emergency room to Hopkins stroke and brain floor) so I did not go through all those tests. I had an LP done under x-ray, so the new surgeon could get my pressure reading, and once the result was back, my shunt was turned up the highest it went. He did not run all kinds of tests on me then because he already knew that my shunt was malfunctioning. I did, however, have a Shunt Patency Test (Nuclear study) done in January, a month after I met him. Once my pressure was back and he knew I was so sick because of overdraining (my ventricles could not be seen on the scans, they were completely collapsed), he told me to lie flat (do you know how boring that gets?!?) until I had the anti-siphoning device was implanted. I was unable to get up and go for all sorts of tests. I could not roll over without vomiting...getting up to pee, I would vomit at the same time as peeing! (sorry that is gross, I know!) I was in bed all day, every day.

The tests I had BEFORE that, not just with Hopkins but my old surgeon as well, were MRI, CT, Nuclear, X-ray, blood, etc. I have been through it all.

Last week, I had another MRI (my neuroLOGIST set it up) with contrast and was scheduled for another nuclear study, but when my neurologist met with me after the MRI to reset my shunt (back to the setting it was before the MRI screwed with it!), he told me that since I felt so great and I had no headaches, if my MRI films looked good, he did not see a reason to do the nuclear scan...and so he looked at them (went over them and showed me everything and explained it to me as he went along...that was so nice of him!)

Do you have a shunt already? When were you diagnosed with PTC?

Hopkins is a fantastic group of neurosurgeons and neurologists that specialize in PTC. Who are you scheduled to see, if you know? I will try to give you as much information as I can! Oh and the eye doctors are pretty fantastic, too! They come from Wilmer (an eye center) that is connected to Hopkins and they are really good. I hope you have as amazing of an experience as I did! Without them, I would not have even a sliver of my life back!

Heather

So glad to read your post. My daughter, who was diagnosed in 2009, has started the appointment process for the clinic at Johns Hopkins.. Waiting for her neurologist to fax medical records. How long did you wait for an appointment. Woould it help to call again. She has had headaches daily for the past 3 years and she is getting very down.

Heather: You've had quite a long road with IIH, haven't you? Thanks for your answers! I am nervous and excited at the same time. It seems (from what you've said) that the doctors are very diligent, which is awesome. I've had IIH for 5 years now. No shunt- have tried Diamox, Octreotide and Topamax, none of which worked like they should have. I'm very interested to see what their ideas/solution will be! I will definitely update you.

Mommacass: Have you filled out all of the paperwork from Hopkins? If you call, they'll either send you a big folder of paperwork, or tell you how to download it from their site. It's basically medical history, pain scales, medication charts, etc. That paperwork & the medical records will be reviewed. They say that within 2 weeks of reading the records, you'll be contacted for an appointments. I wouldn't keep calling Hopkins, I'd keep calling the neurologist! They should have those papers faxed over within a few days, and anything longer is just laziness. You can also request to get the records yourself, which they have to comply with (I'd call the office and say you need the records right away, and they'll go from there). Once I got all the paperwork in, it went very fast. I would do it soon though, because I've heard they don't have any open appts until late September. Give my best to your daughter- I know how hard it is!

I was referred to Hopkins in November 2011 and, because I was constantly in the ER having to be given pretty much IV fluids and nausea medicine (and my potassium was always low...my body was twitchy for years and I found out from them giving me IV potassium drips that that was the cause! I now take OTC potassium whenever I feel twitches starting and my body calms right down!) so when I went to our ER, five minutes from here, in December 2011, the doctor decided that since I told her I was waiting to be scheduled with Hopkins, she would call and see if they would take me up on the neuro brain tumor/stroke floor and they did and I was transferred. I never saw my surgeon in an actual appointment at his office until after my last surgery in February because I have no insurance...his team saw me in the ER and ran all the tests necessary through there whenever I went. So I am not exactly sure...I do know that yes, you do get paperwork and your current doctors have to fax records before they see you. I would call again if you have waited a little bit. I am ALWAYS persistent when I am waiting for an appointment anywhere! It pays off.

I also waited about two months before I saw my new neurologist. I saw my neurosurgeon the last time (have not needed him since, yay!) in March and in May I saw my new neurologist. Trust me, they are WELL worth the wait!!!

Please, both of you, keep me updated! If there is anything I can pass on to you, I sure will!!

MC2010 -- oh my! I cannot even imagine having this for five years before any major action was taken!!! I spent the entire first year of having this incapacitate me with my neurologist telling me I was "stressed" and that was too frustrating then! We believe I have had this for a while longer, I just did not think my headaches were anything...I just thought I had them like everyone else in my family. I was not aware that something was different until it effected my eyes and that was the worst feeling!

Is there any particular reason they have not talked about a shunt with you? I am very curious...I have seen many people do not want the brain surgery, but it really is not as bad as you would think!! And when it gets situated, assuming that it does, it is so worth it. If they bring it up with you, are you open to the surgery? I am also not sure how long of a wait they have when scheduling you for surgery. I was scheduled on a Monday, in surgery on a Friday, but it was not a brain surgery. It took just as long, but it was when they cut in my chest and went beneath my collarbone to place my anti-siphoning device on my shunt catheter...it regulates the outflow of my shunt as mine would just drain way too much, overdrain, whenever I sat up even the slightest bit. Apparently gravity pulled it out of me! lol

Again, please keep me updated! I am very interested!!

Thank you both for getting back to me. My daughter filled out a demographic sheet but there was no mention of a packet for her to fill out. We will look into this. a September appointment would be great, the first time we contacted them we were told that the earliest appointment would be january.
I willl keep you updated. Everyone on this lsite is so helpful. God Bless you all.

Do you know if the neurologist has faxed the records over yet? I would check back and ask them to let you know...the sooner you know, the better and quicker she can get in! How old is your daughter? When I was diagnosed in 2010, it was pretty much just my mom and I. I never got on my computer because I felt so miserable (my mom always says she knows when I feel good - I am on the computer then!) so my mom looked up things about PTC and we only found a limited amount...nothing like this group! It is fantastic, but I did not find it while I was in so much pain!

My daughter is 31 and has been back home this past year. She had worked for Disney in Orlando but in June after a year medical leave she had to resign. Her Neurologist has recommended a shunt and after researching Dr.s and hospitals Johns Hopkins name is at the top of the list. Would like to ltry the Stents first if she fits the profile. Its been a long 3 years as she tried twice to go back to work but each time the headaches would get worse and she would have to go on medical leave. She is hoping that Hopkins will be able to help her get her life back.

I am so sorry that she has to go through this!! It is such a terrible, debilitating disease...

I got so lucky. I did not do any research before I had anything done. Once I was diagnosed, in August 2010, it was a quick road to having my shunt put in! My first surgeon trained with my surgeon now at Hopkins, but he did not have as much experience with PTC and so it was a bumpy road before I got to Hopkins.

Hopkins should be able to help her get, if not all, a good bit of her life back. I would not be able to even sit up without their help now. So I am most definitely a fan! Not only because of how they have helped me, but because they were so kind, and took such time to explain things to me. And listen! And with knowing I have both PTC and seizures, they only took on one problem at a time; PTC first, now that that has calmed down, we are taking on my seizures. Doing this assured me that they were really looking at what they should be at the time.

Whenever you find out any names, if you mention them to me, I may be able to tell you about the doctor! :)

I was refered to Mayo and then through this group was told to go to John Hopkins...so that is what I am going to do.I have to wait until next spring, I am so busy right now, I just do not have time to deal with this...I did call my neuro and let him know about it though and will get him the information. I thought I would fax it to him; but it says you have to pay 500$ to have them look at your records...I have the encephalecele and need it fixed. Among other issues. :)

What?!?! Where did you see that you have to pay $500 to have them look at your records! I am shocked to hear that...I have never heard it! I don't think it would be an out-of-area thing because people come from all over the US, and world, to Hopkins!

I am so sorry you have to wait that long! It is terrible...but when you get to them, it will be worth it!

I sound like I should be promoting them or something...maybe they should put me on their payroll! Haha :)

Let me know where you got the $500 from???

Thanks!
Heather

http://www.hopkinsmedicine.org/second_opinion/neuro/

???

Ohh, I see. That is not where I was looking yesterday! I never had to pay that and they were my second opinion...I wonder if it had something to do with me first being seen by them inpatient, not outpatient. I am not sure! I would definitely call and check up on that cost first thing!

It may be a little different in the particular CSF Disorders clinic, but again, I am not 100% sure! I am really curious to find out about that, though! If it had cost me that much, I never would have gotten my help...scary thought...