Headaches and Intracranial Hypertension

What IH can do:

http://www.dailymail.co.uk/news/article-1269482/Young-mother-goes-blind-doctors-diagnose-deadly-brain-condition-headache--SIX-times.html

Not every person with IH will develop pappiledema (swollen optic nerves)--an indicator of IH.

Cheryl

New YouTube video on treating children with IH:

https://www.youtube.com/watch?v=V6W848ZqRhs

Cheryl

Poor girl. 19.
Wouldn't it have been a clue that something was really going wrong when her mother had to move in with her?
Surely when her Mum decided this was warranted, they would have gone further?

It's unreal how many people tell me that their doctors have said that they can't possibly have IIH because they don't have papilledema. This makes me so angry! The only test that can definitively diagnose or rule it out is a spinal tap/lumbar puncture. It's so awful what happened to that young lady.

Teri

Teri, I had to wonder about the YouTube video I shared.

So they're discussing IH, and the doc is looking at an MRI. Don't you find that misleading? He's not going to find IH on an MRI! And how many people would think that an MRI is the diagnostic test to find IH from that video (and from Ohio State even)!

Ah, they should have showed him looking in someone's eyes, looking for pappiledema...

As my friend said, they were just trying to make him look "busy and professional."

LOL.

Cheryl

Cheryl,

I just commented on the vidoe on YouTube. They SHOULD have shown a lumbar puncture if they wanted to be accurate. IIH can show on an MRI, but it doesn't always. It doesn't show unless the pressure is really, really high.

As for Ohio State, some of their departments are better than others. I had eye surgery there, and I will NEVER go there for eye surgery again. The surgery I had will have to be repeated in a few years, and I'll drive the eight hours to Philadelphia instead of the two to Ohio State because I had such a horrible experience there.

I want to thank you for sharing both the news story and the video. I feel a new article coming on.

Teri

Anna's Mom wrote:Teri, I had to wonder about the YouTube video I shared.

So they're discussing IH, and the doc is looking at an MRI. Don't you find that misleading? He's not going to find IH on an MRI! And how many people would think that an MRI is the diagnostic test to find IH from that video (and from Ohio State even)!

Ah, they should have showed him looking in someone's eyes, looking for pappiledema...

As my friend said, they were just trying to make him look "busy and professional."

LOL.

Cheryl

Teri,

That leads me to a question. What do you do when the only specialist in your area can't help any more? I'm not to this point but it's something I've wondered about and if I would get there, what do you do next?

That's a tough situation. Unfortunately, the only answer I have for it is to move on to a new specialist, even if you have to travel to do so.

What I've seen work well in a couple of cases takes the cooperation of the specialist who can't help any more and the new one. I'm going to use Dr. Krusz as an example because I see him work this way so often. People travel from all over to see him, and he fully understands the problems with travel, expense, and having your specialist so far away. When patients travel a long distance to see him, he prefers that they have a specialist or at least a neurologist close to home who is willing to work with him. He sees the patient for an initial visit and assessment, talks with the patient to come up with a treatment plan, and starts the treatment. He then needs the local doctor to follow his treatment plan if the patient needs IV infusions or other help between appointments with him. He still sees the patients periodically, but traveling to him for visits is less frequent when there's a local doctor to work with him.

There simply aren't enough specialists. When I first needed a specialist, I had to take two days for each appointment and get my husband to drive me the eight hours each direction to Philly. We finally have a couple of Migraine specialists in West Virginia, but I'd still have to drive a couple of hours to see one of them.

Teri

HeelerLady wrote:Teri,

That leads me to a question. What do you do when the only specialist in your area can't help any more? I'm not to this point but it's something I've wondered about and if I would get there, what do you do next?

Teri, I didn't know about IH showing up on an MRI (in cases of super high pressure).

It is disheartening when doctors scoff at doing LP's. I know LP's are not pleasant, and there is concern for causing a CSF leak (which can become chronic CSF leaking). I understand the invasive nature of LP's.

But how many cases of IH are being missed because doctors refuse to do LP's?

Especially HA doctors! I know of instances where patients asked for an LP, and the HA doc said no.

Shoot, we've even been told NO by neurosurgeons (more than one)!!!

Cheryl

I hear you, Cheryl. I find it frightening how many doctors actually believe that you can't have IIH unless you have papilledema.

Here's my new mantra: The person with the most at stake gets to be in charge. When it comes to our health, that's us, not the doctors. The problem is that we have to depend on the doctors to know what they're talking about and help us make good decisions.

I asked Dr. Young a couple of years ago if he thought IIH was really all that rare, because my hypothesis was that it was being underdiagnosed. He said he tends to agree.

It just shouldn't be this difficult.

Teri

Anna's Mom wrote:Teri, I didn't know about IH showing up on an MRI (in cases of super high pressure).

It is disheartening when doctors scoff at doing LP's. I know LP's are not pleasant, and there is concern for causing a CSF leak (which can become chronic CSF leaking). I understand the invasive nature of LP's.

But how many cases of IH are being missed because doctors refuse to do LP's?

Especially HA doctors! I know of instances where patients asked for an LP, and the HA doc said no.

Shoot, we've even been told NO by neurosurgeons (more than one)!!!

Cheryl

Teri, the worst doctors we have ever seen for IH...Mayo Clinic

Cheryl

Please excuse my ignorance on this, but will an optometrist be able to assess whether one has IH or papilledema? Or, is a neurologist the only person who can do this?

Sometimes it seems we have to have a whole troup of specialists to diagnose and treat the migraines and the various accompanying symptoms. Wouldn't it be nice if they could all be in one place and not scattered across the country (at least for those of us in rural areas, anyway)?

An optometrist may or may not be able to assess for papilledema. Depends on the optometrist. An ophthalmologist would be better. BUT, remember that checking for papilledema is NOT adequate to rule out IH. That takes a spinal tap/lumbar puncture.

Teri

tecky wrote:Please excuse my ignorance on this, but will an optometrist be able to assess whether one has IH or papilledema? Or, is a neurologist the only person who can do this?

Sometimes it seems we have to have a whole troup of specialists to diagnose and treat the migraines and the various accompanying symptoms. Wouldn't it be nice if they could all be in one place and not scattered across the country (at least for those of us in rural areas, anyway)?

I would add, a lumbar puncture that is done properly. Things can go wrong, and the results can be inaccurate.

Plus, one LP may not tell the whole story.

Anna had an LP at Mayo, and her pressure was 9. She had intracranial pressure monitoring two months later, and her pressure was 0. 9 pressure is considered normal pressure, but 0 is not normal.

Cheryl

Excellent that this story is currently on AOL News! Now many more people will become aware of and learn about IH/PTC:

http://www.aolhealth.com/2010/05/05/phantom-tumors-a-growing-painful-epidemic-in-children/?ncid=webmaildl1

Cheryl

Really good article, Cheryl. Nice to know something is being done.

Hi Cheryl-

I truly hope that things are going better with Anna. I have been unable to log in lately because work has been so rediculously busy and we have been having a tough time at home.

Thank you so much for sharing all of your information on the forum regarding IH. Friday Dr W performed another LP on Crystal and it was a much more painful experience than the first one. A nerve was hit and overall the pain in her baclk was unbearable. He is starting to bring up shunting as well as weekly spinal taps as an option.

On the bright side, he is testing Crystal for a whole bunch of things. The girl in his lab was a bit overwhelmed with how many ways she needed to prepare the spimal fluid and blood and said that this was the most in-depth and thurough testing that she has ever seen on a patient!

Thank you so much for referring us to him. He is so proactive and really takes the time to listen.

Crystal's opening pressure was 20.8 and closing pressure was 11.8 bringing her pain level from a 7 to a 4. We are going to follow up with him in two weeks for the results.

You and Anna are always on my mind and in my prayers.