New Daily Persistent Headache Support Group

Long story short I've had NDPH for 5 1/2 years. I've gone through all of the testing and tried all the meds. Two surgeries and lots lots more. There has never been any negative finding on anything-nor has anything helped.

I've been working with my current doctor talking about various pain problems that I have. I suggested that a CSF leak could explain all of them. I had a cisternogram before, but it came back negative.

After agreeing to a request I had to get the cisternogram done my doctor called the neuroradiologist and set it up.

I had the LP, indium injection, and scans done on monday.

SIDE NOTE: I had a very bad reaction to the indium and was in the ER and hospital overnight-worst pain of my life.

For the cisternogram I also had pledgets in my nose.

The scan came back negative BUT the pledgets were positive for the radioisotope.

So...I have confirmed CSF leakage in both sides of my nose (cribiform plate maybe...).

Of course this is a problem-but it can be fixed. I've gone 5 1/2 years not knowing what caused my headache. Now I know. I don't think the full impact of this has hit me yet, but its the first time in years I've layed in bed thinking that this mighta ctually be gone soon. I don't remember what it feels like not to have a headache.

There are no gaurentees, but for the first time the doctors have told me they have something to work with.

Congratulations! That is such great news to finally find out what has been the cause of the headache. I have had a constant headache (NDPH) for 14 months. I am still trying to find the cause of mine. Good luck & I hope it is gone soon.

Kim

I am not familiar with all these terms but I think the jest of it is that you have found a problem that hopefully is the source of your pain and can be fixed! I am so glad you did your homework and persevered. It is really in our hands isn't it? We can't just depend on the doctors to do it all. At least that is the way it is with these headaches. Congratulations and keep us posted.

Mine started in 2004 and I have gone through just about every test I possibly could. In fact, I had a cisternogram before just like I did this monday. I pushed to have it repeated because it was the only thing that made sense. Also, I just started trying to get tests done again because the pain has got a bit worse (including pain down into my arms).

When the test was done this time I demanded I have pledgets placed in my nose. Its not uncommon to have a leak and still be unable to see any problems on these scans. My scan did come back normal but they found the radioisotope in the pledgets (positive test).

I'll have to do some more testing to try and localize the leaks BUT the surgery to fix it shouldn't be very invasive and should be, at the least, moderately successful.

That is wonderful! You finally have proved your suspicions correct and have something that there are actually treatments for. I had never heard of a cisternogram so I had to look it up. Please keep us updated on how they locate the leaks and what exactly they do to fix them (I am interested since I don't know much about what they actually do about CSF leaks). I hope this will be the beginning of your recovery!

That is wonderful to hear! Hopefully now you will be able to get relief! Just even knowing the cause can sometimes give you some piece of mind.

Thank you for sharing your courageous story. We all live in such pain. So, when someone who has battled this chronic illness finds a cause we are overjoyed and we feel a collective sense of relief.

Please keep us informed of your progress.

take care,

MJ

I will definately keep everyone updated on the progress of this. My understanding is that the prognosis varies quite a bit.

So the leaks are somewhere up in my nose. Cribiform plate or frontal sinuses...maybe. If they can localize the leaks the next step is finding the right doctor to do the job. Depending on where the leaks are they will take an intra or extracranial approach. I'm assuming it would be extracranial because it can be accessed through my nose.

Even if I opt out of the surgery (maybe if it is too risky) I now know what is causing all of the pain. That means alot to me. After 5 1/2 years I have been past the point of hoping for it to go away. This definately hit me by suprise.

Best

Tim

Tim,

Are you aware of the Braintalk neurology forums? They have a great forum for "leakers." Here it is:

http://brain.hastypastry.net/forums/forumdisplay.php?f=126

You can spend days and days there, reading about leaks. There are two types of leaks: cranial leaks and spinal leaks. The treatments vary a lot.

If you look at the above site, be sure you read the top two threads on the page. Some success stories and some good advice. And you can post your questions there.

I am friends with several "leakers" because my daughter had two leaks, due to her Chiari/shunt surgeries. She is now in high pressure.

Spinal fluid leaks are often a VERY difficult problem. And they are often overlooked, as a cause of severe headaches.

Best wishes! Cheryl

Tim, what symptoms of your headache made you suspect a CSF leak?