Update - I Might Have A Csf Leak

[princessmk]

Hi Everyone,

Just when I finally started to participate on the DINET board, I was hit with some new symptoms (and a slew of doctor appointments and tests) . . .

Basically, about a month ago I experienced a severe squeezing pain in the back of my head that was only relieved by lying flat. Being upright or movement would make it worse. It came on suddenly and lingered for a few days and left. It has occured several more times since then. It is completely different then my typical migraines and much worse. The same day the head pain started, I noticed my nose was leaking a clear watery run/drip out of one side only. This has continued for over a month so far and is aggravated by being upright, bending, laughing etc... - just like the head pain. Also, I've been experiencing ear fullness, pressure, and popping. These are all new symptoms for me.

I just saw an ENT and the doctor is highly suspicious of a cranial CSF leak (cerebrospinal fluid leak) This is where the fluid that surrounds your brain (and spine) leaks through a tear/hole somewhere in the dura (the protective sac around the brain/spine) They are currently running some tests and scans to investigate.

I have already contacted my primary POTS doctor and he wants me go to a large hospital (Mayo etc...) if I have to get surgery to repair.

I just wanted to tell everyone because I'm starting a new journey and have lots of waiting, appointments, tests, and "unknowns" ahead of me. Right now, I'm trying to take one day at time and trust God with all of those "unknowns."

On a lighter note, I do find it somewhat humorous why I can't just "have a cold" when I go to the doctor instead of something "rare" or "strange" ha I'm sure you all understand that feeling!

I also wanted to see if anyone else here has had a CSF leak? I would appreciate your help. And I will keep everyone updated. Thanks for reading.

[Chaos]

Good luck to you as you explore this new path. Never a dull moment with all of this, is there?

At least you didn't get the "it's all in your head" line this time like so many of us do. Oh Wait! It might be all in your head (literally) this time. But seriously, I'm glad the ENT is checking this out.

Haven't had personal experience with a CFS leak but have talked to enough people who've had one to know it's not fun and the pain is really intense.

Keeping you in my thoughts and prayers!! Please keep us posted.

[issie]

Hi Everyone,

Just when I finally started to participate on the DINET board, I was hit with some new symptoms (and a slew of doctor appointments and tests) . . .

Basically, about a month ago I experienced a severe squeezing pain in the back of my head that was only relieved by lying flat. Being upright or movement would make it worse. It came on suddenly and lingered for a few days and left. It has occured several more times since then. It is completely different then my typical migraines and much worse. The same day the head pain started, I noticed my nose was leaking a clear watery run/drip out of one side only. This has continued for over a month so far and is aggravated by being upright, bending, laughing etc... - just like the head pain. Also, I've been experiencing ear fullness, pressure, and popping. These are all new symptoms for me.

I just saw an ENT and the doctor is highly suspicious of a cranial CSF leak (cerebrospinal fluid leak) This is where the fluid that surrounds your brain (and spine) leaks through a tear/hole somewhere in the dura (the protective sac around the brain/spine) They are currently running some tests and scans to investigate.

I have already contacted my primary POTS doctor and he wants me go to a large hospital (Mayo etc...) if I have to get surgery to repair.

I just wanted to tell everyone because I'm starting a new journey and have lots of waiting, appointments, tests, and "unknowns" ahead of me. Right now, I'm trying to take one day at time and trust God with all of those "unknowns."

On a lighter note, I do find it somewhat humorous why I can't just "have a cold" when I go to the doctor instead of something "rare" or "strange" ha I'm sure you all understand that feeling!

I also wanted to see if anyone else here has had a CSF leak? I would appreciate your help. And I will keep everyone updated. Thanks for reading.

Hey merryberry,

I suggested that back on July 12th -- to hurry and get to the doctor because when you first posted about this it sounded like a spinal leak. Hope all goes well. Don't need to mess around with this.

Issie

[TXPOTS]

I was worked up thoroughly for a CSF leak before my POTS diagnosis. Both conditions can produce severe orthostatic headaches, along with other similar symptoms. A MRI with contrast can look for meningeal enhancement, which is present in 80% of patients with a CSF leak. If they can locate the source of the leak, it may be surgically repaired. In my case, I did not have a leak. I learned this after multiple MRIs, myelograms, blood patches, and traveling across the country to 2 CSF leak experts. Finally, I was diagnosed with OI, along with low aldosterone and diabetes insipidus. The orthostatic headaches and neck pain continue on a daily basis, but at least I have the correct diagnosis now. There is an article by a CSF leak expert at Mayo, Dr. Mokri that details orthostatic headaches without the presence of a leak in patients with POTS. Patients with POTS are often chronically dehydrated which can result in low spinal pressure, producing a low CSF headache without a leak. Good luck. I hope the source of your problems is a leak that can be easily located and repaired. I had a CSF leak by an overly aggressive epidural during childbirth. It was immediately fixed by a blood patch. Yes, the symptoms of a CSF leak and POTS are similar.

[potsgirl]

Good luck, Merryberry!

I had a spinal tap about 10 years ago and had a leak from it, and it was the worst pain of my life. They finally had to do a 'blood patch' to fix it, and after that I felt much better. For a couple of days, though, it was rough going, and I was flat on my back. I hope you don't have to go through the same thing I did. If you do have a leak, though, the sooner you get it fixed, the better! Get your rear-end in there, and let us know how it goes.

[princessmk]

Chaos - Yes, I am so grateful the ENT has been so thorough and willing to think outside the box. Before I was DXd with POTS, I got the "its all in your head" for almost two years! I laughed at your "this time it is all in my head"! Thanks for the thoughts and prayers!

Hi Issie - Your so right!!! As soon as I typed this post, I remembered that I posted awhile back, so I went back and read it . . . and there was your post about a CSF leak! You would think we would get honorary degrees for all the research and medical knowledge up our sleeves huh? Thank you for caring and for your help.

TXPOTS - Wow. I'm sorry - you have been through a lot - I'm glad they finally figured out the right DX though. I did not know that POTS could cause such severe orthostatic headaches . . . but since POTS causes severe orthstatic everything else, it makes sense. I actually would have probably chalked all the symptoms up to POTS if it wasn't for my crazy nose leaking out of one side for almost 5 weeks now. I will look that article up. Thanks for sharing your experience and the info!

potsgirl - Yes, that is how my headaches have felt - the worst head pain I've ever had. I'm sorry you had to go through that. Thank you for you well wishes. I laughed at your "get your rear-end in there" advice. As a POTSY, who has been through the medical wringer many-a-time, I am (understandably) hestitant to go any doctor or ER unless I absolutely HAVE to . . . like if my nose is dripping brain fluid

I'm not meaning to sound too "uppity" Overall, this has been difficult physically and emotionally. And just earlier today I had a friend say something very hurtful about my new medical problem So I needed a good laugh and it's so nice to come on this board and talk with understanding people!!