?CSF leak

[ombrerose4]

Well I saw my neurotologist today for my post op BAHA visit and told him how my headaches had returned a few weeks after the BOTOX injections. After ordering and listening to the headache tapes from the symposium, (as suggested by a few of you), I was able to present him with a list of questions regarding the possible cause of my headaches. He feels the most likely possibility is CSF leak(s). he said it may show up on my mri, which is next weds. as a low sitting brain. If not I would need to have a spinal tap to confirm a diagnosis. He was going to email my neurosurgeon and let him know what was going on. So on weds. I will have my mri, see my neurosurgeon and maybe have an answer. My headaches were getting alittle better (less severe and only every other day), instead of 2x's a day and being horrible when I started seeing the chiropractor a couple of weeks ago. But I missed all of last week due to the snow and my school schedule and those nasty headaches were worse than ever. So I just hope there is an answer and something can be done because I can't live like this. I will let you know how it goes.

[Jim Scott]

Hi, Lauren ~

The possibility of a CSF leak sounds plausible and certainly would cause headaches.  A drain can alleviate that leak - if it exists - and would likely reduce and eventually eliminate your excruciating headaches.  We'll look forward  (with you) to learning the results of your MRI scan and doctor's opinion.  I hope and pray you'll find an answer and a solution. 

Jim

[ombrerose4]

I had a 5 mos. post op MRI today (was the 3 mos. MRI delayed because I had one 6 wks post op due to headaches). The good news is there is no sign of any tumor regrowth or inflammation. My neurosurgeon said my brain looks healthy, hooray! The bad news is there was no definitive signs of CSF leak on the MRI, which doesn't mean I don't have one. After spending alot of time discussing my headache symptoms with my doc, he does believe it is probably a CSF leak. To test this theory he wants me to chronicle my headaches for the next 2 days and he wants me to rest and sleep with no pillows under my head but with lots of pillows under my legs. So I tried that this afternoon when I came home with a blasting headache. My headache pain definitely improved in that position (from a 7 to a 3 in pain scale), although it did not go away conmpletely. This basically confirms a CSF leak/low CSF pressure. So in the meanwhile I have scheduled a consultation with a Dr. Stelian Serban, a pain management specialist at Mt. Sinai who performs the blood patch procedure which is the treatment for CSF leaks. I see him next Friday and will hope to schedule the procedure asap. In the meanwhile I can still hope that these headaches will mysteriously disappear. I am so thankful for the listening and respect I receive from my doctor, Joshua Bederson, and his NP Lisa. They are genuinely concerned that I am still having these headaches and did not dismiss my claims in any way. So will follow up with everyone after my consult next week. And thank you all for being, there willing to share everyone's good and bad days.

[Jim Scott]

Lauren ~

Although I'm glad that your MRI scan results were good (no tumor), I'm sorry you're still struggling with headaches.  I'm delighted to learn that your doctor is attentive, compassionate and helpful as you attempt to locate their cause (likely a CSF leak) and find a solution (the blood patch procedure).  Although optimistically hoping for a miracle (spontaneous remission of the headaches) is admirable, moving forward with a medical solution is very practical.  I look forward to your first headache-free post! 

Jim