Update and How Are My Fellow Ear-Leakers?

[Edward]

Hi Fellow Leakers,

Looks like the old message board is a little quiet these days. I just wanted to let you folks know that I recently saw Dr. Mokri at Mayo. I found him to be a very thorough doctor and a nice gentleman. He has scheduled me to have a cisternogram in a couple of months to see if we can find the leak into my ears. I continue to have problems with fluid oozing into both ears and it has been over five months since my closed head injury. But at least now I feel like I am making some progress as far as my medical care goes.

I am wondering how the rest of you are doing (particularly you "Ear Leakers"). Jim, how are you? GingerLox - have you had your test yet? I know there may be one or two new EarLeakers here too so it would be great to hear from you too. And not to leave anyone else out, but how is everyone else doing? This forum really helps me gain some support and reminds me that I am not in this alone so it would be great to hear from you.

Have a great day....Ed.
:D

[GingerLox]

Hello Ed..............I'm sorry I haven't answered lately, I've been a bit under the weather. I am so anxious to hear more about your visit with Mokri. Why in the world is he waiting 2 months to do a cisternogram on you? Mine was done within days of seeing him. What did they think about the fluid in the ears? That was the part of my problem that they couldn't wrap their minds around. They wouldn't believe there was fluid there when there was no hole in the tympanic membrane. They did the cisternogram based on the fact that there was fluid coming out of my nose. Hopefully, they have been educated on the subject since I last saw them. I am glad that they are going to help you. Do you feel better about your situation? Did you see the neurosurgeon yet? I am wondering what happened in Jim's situation where they wouldn't see him because of previous injury. Mayo always keeps me guessing!

Believe it or not, I am still waiting on my local Doc, that I continue to love, to make arrangements for my testing. I'm ready to call again to put a "little bug in their ear"! Pun intended!!!!!!!!!

If Mokri is open now to the possibility of fluid in the ear, I may end up back there for another shot...........pun not intended!!!!!!!!!!

Be well..........GingerLox

[Edward]

Hello GingerLox,

Actually, it was not Dr. Mokri's choice to wait that long. It is just how the scheduling worked out because I will also be having some other appointments there at the same time (including seeing a neurosurgeon) and they needed to get everything scheduled together. As far as the fluid in my ears, he definitely thought this was suggestive enough of a CSF leak that a cisternogram was warranted. I do feel better that now I at least have a definite plan of action. My biggest concern of course is that I have the leak but they will not be able to find it. That would be really depressing.

Sorry to hear you have been under the weather. I hope you are feeling some better.

-Ed.

[jimc]

Hi Ed, my leak seemed to close again after being active for several weeks, but last week, it reopened again. I've been spending a lot of time in the horizontal position the last week, as I always do when I'm actively leaking. Finally starting to feel a little better the last day or two, but I'm still tasting CSF most of the time. Am trying to be very careful to avoid any kind of strain so the leak can maybe heal again.

Jim

[Edward]

Hi Jim,

Thanks for checking in. I'm glad to hear that you are making some progress. I am curious about a couple things though - so when the leak heals are your symptoms totally gone at those times? And how long has it been between your last surgery to correct the problem and now?

-Ed.

[jimc]

Ed, unfortunately, my symptoms are never totally gone. I always feel like someone whacked me on the head recently with a 2x4. It's just a matter of how many minutes it seems like since I was whacked. When I'm really leaking, it feels like I just got hit. When the leak is healed, it feels like I got hit 5-10 minutes ago.

It doesn't seem to take much to reopen the leak. The other day, I sneezed twice and it reopened.

I had surgery in early November to remove the LP shunt. My third and last craniotomy was in March, 2006.

[Edward]

Thanks for the information Jim. I was hoping that when you were healed you actually felt normal also. So, I wonder how those of us who have problems with persistent leaks, ever really know if we have healed completely.

Sorry to hear of your vision problems too. I hope they can get to the bottom of this. Please keep us posted.

-Ed.

[suebear6]

Just found this site. Had a BAD epidural during delivery of a baby on 3/2/07. 2 punctures and delivered the baby before it ever took effect. Got the headache 2 days later and what I thought was a cold with ear infection. I thought I coughed so hard and so much that I pulled the muscles in my neck. Then I lost my hearing for 2 1/2 weeks.

Finally did a bloodpatch after 45 days. Seemed to work for a week or so then ended up in the ER with a massive headache. Did a 2nd blood patch, worked somewhat but the headache has now changed into a constant headache. Can't take drugs because I am breastfeeding the baby.

Having tremendous earaches now (although they see nothing when the look in my ears). I was feeling draining awhile back, but now it reminds me more of the little bubble in a carpenter's level, the liquid just shifts as opposed to running/oozing. Having balance problems and shooting ear pains when I turn my head or bend.

The seasick headache has been replaced by a constant headache. Have a constant, dull aching ear and get shooting pains when I change positions.

Have any of you experienced anything similar? Am awaiting insurance approval for a cistern test and another MRI (1st MRI of the brain was negative, as was CT and EEG). Haven't done much research on CSF leaks as I have 4 kids under the age of 5. I spend my days on the sofa and had to hire someone to keep my kids alive until this resolves. I am exhausted from being in pain for so long. Am I an ear leaker?

Have a previous neck/spine injury from a car accident 14 years ago and a brachial plexus injury (nerve damages to the right arm rendering it mostly useless). Don't know if that contributed to this newest problem or not. Any advice on treatments that worked when the blood patches have not resolved things?

Thanks!

[LauraL840]

Couple things I've been mulling over on your post for you to think about...

Ask Dr. Mokri to do a CT myelogram and CT post myelogram http://www.csmc.edu/9658.htmlon the same day they do your radionuclide cisternogram. The RNC requires a LP to inject radioisotope and they can inject the myelogram dye at the same time.

Since the two imaging materials are compatible, they can save you an LP and do two good studies at once ... but they have to schedule them! So it would be wise to contact him in advance of appointment to see if he concurs.

ALSO, when they do the imaging for the RNC they will do a 4 or 6 hour image ... part of the CT post myelogram CAN include a 4 or 6 hour image as well which may be useful (can show where dye is escaping). The importance for the CT post (after) myelogram is that if you don't actively leak DURING the 5 or 10 minutes they perform the CT, you'll have a negative result. However with the POST myelogram CT image, they look to see if the dye has left the dura. You'll want the CT post myelogram image to be cranial, cervical, thoracic, and lumbar.

All of these imaging studies are done lying down .... it's pretty well known that most active leaking occurs when a person is standing and active, not lying down! We convinced Mike's doc to let him move around A LOT after injecting the dye. They had him roll around a lot on the table to mix the imaging materials, but allowed him to Valsalva, sit, stand and bend over, etc. You should have SEEN the look on the CT technician when he came into the hall and saw Mike standing! He about fell out, put a 'halt' on the test until he could talk to the neuroradiologist (who was speaking to Mike 2 minutes earlier while Mike was sitting on the gurney). He said we might have 'blown' the study ... then he came back two minutes later and said it was OK. ;) LOL Personally I think that both the CT and the CT post should be done lying and standing if possible.

Are there 'things' or activities that you KNOW encourage your leak? If there are I would discuss with Mokri about doing those things after the contrast injection.

Regarding your ears leaking fluid.... with the RNC they should place pledgets in your sinuses to collect any fluids ... After seeing the pledgets, I don't know if they could easily be placed into the ear canal (perhaps if there's a pediatric size?), but I'd also ask Dr. Mokri if he intends to use pledgets and if so, could he look into the possibility of placing them in your ear canals. They'll be placed for 4-6 hours depending on your 2nd RNC images and then removed and tested. This link talks about RNC information ... I found it helpful. http://www.csmc.edu/9662.html

Mike did not have a CT post myelogram done - I hadn't come across it (as an option) until the night he'd had the CT done and I had to make sure the doc was ordering both the CTM along with the RNC because the best info I could get from consensus on the board and online was that both tests really were necessary in our case! RNC is great for identifying that there IS indeed a leak, but not so good at identifying a site. CTM is much better for finding a location. Neither test is 100% accurate at finding a leak, many people leak and their tests are negative. My husband is one of those people. Having both tests negative was VERY depressing (which you mentioned) and we felt very hopeless. Even his neuro was baffled at the negative findings. I will pray that you leak like a stuck pig when they do your test!

So a little update on how he's doing... after all the imaging results were negative, they were prepared to release him (they'd finished the 7 days of DHE-45 which did nothing for the headache), and have him call to set up another EBP. I was about in tears... he'd been there for SEVEN days in hospital and they were going to send him home in the same shape he came in! I asked for them to arrange an EBP while we were there ... after all, we were INPATIENT in a major university hospital setting where they could easily get this done same day! They did. His headache resolved within minutes of receiving 20ccs blood between L2-3! The docs were 'high-fiving' each other! So now, we're 3 days post patch and he's still HA free! We're optimistic that healing is taking place where it's needed and that when we reach the 2 week / 3 week post patch mark we will still be headache free!

My prayers will be the same for you! Please keep us posted!

[Edward]

Hello Sue and Laura,

Thanks for you comments Laura. Actually this was an older message of mine that got bumped back up because Sue was looking for comments on potential ear leakage. I have already seen Dr. Mokri and had my cisternogram with pledgets and was negative. Well, the cisternogram was negative but when they reviewed my ct-scan they could see one of the leak sites but it was supposedly not leaking at the time they did the cisternogram (hence no proof of an active leak). But I know it is still leaking.

Sue, it sounds like you are doing the right things as far as the cisternogram and the MRI. Please keep us posted as to what you find.

Best wishes....Ed.