Fluid Leak - anyone else?

Did the doctors do a lyme check? 

Just wondering. 

Blessings,

Ginnia

Yeah I believe they did the CT test that you mention above. Yes, it's very frustrating. My doc's MA asked "did you want to make an appointment to come back in?" Uh, what would that accomplish? Obviously she can't find the leak and she preaches to me about lying flat on my back for a few weeks which isn't reasonable. I have a job and a life. I want to try to patch too. The radiologist said those work in most people, even if they can't find the location of the leak. I'm just tired of my head throbbing every day and feeling dizzy and light headed all the time. Not lifting and trying to take it easy is NOT something I am good at!!!

And no, no lyme testing.

Angel,
It does sound like a CSF leak. Go back to the doc who did the lumbar puncture & get a blood patch (the doc should have records of what level he did the puncture at -- it doesn't need to be exact, but it does need to be close to where the actual hole is -- within a level or two). Make sure they use enough blood. Too often I get shorted. The ones that usually did the trick for me were 20cc's of blood. Maybe it would be a different number for you, but there is a range & it's better, if they can get enough blood from your arm, to give you the top amount in your range.

The headaches always went away completely within a day after I got the blood patches. Don't get up too quickly after they give you the patch & also you should plan to lie down for the rest of the day after the blood patch. It will work better that way.

feel better soon,
frances

For more information, you might also try googling 'spinal headache' or 'postdural puncture headache'.

Follow your doctor's instructions, but I was told no exercise. Drink lots of water & caffeine, if that helps. Whenever you have a chance, lie down. If the epidural was in your low back, probably the most comfortable position will be curled up on your side. Otherwise, you can put several pillows under your legs & sleep on your back. As it was explained to me, the more you move, the more stress it puts on the wound & the less likely it is to heal.

I really don't get what the deal with your doctors is. They should consider this urgent & get you in right away. There are people who have developed serious complications from dural punctures & typically doctors who cause them want to take care of it asap. It is rare to develop any serious problems, but really, why risk it at all when the solution is so simple. Sometimes the puncture does heal on its own, but I think it's like almost half of people who get them need a blood patch to recover. Like I said, it really should be the doctor who did the dural puncture who treats you with the blood patch. You have a much higher chance of him finding the right place the first time than if you get a different doctor to do it. If need be, it can even be done in an ER (though that would be my last choice). I just think it's extremely cruel that they know what the problem is, what the cause is, where the problem is located & what needs to be done to treat it, yet they are telling you to wait.

Blood patches are very, very simple procedures. It only takes maybe 10 minutes top to complete. All they do is take a very sterile needle & draw blood from your arm (like for a CBC, but with extra sterility precautions). Then, they take it & attach it to a long, thin needle & inject it into your back. They might massage it for a few seconds. Then you lie down for 30-60 minutes (my doc lets me lie in the dark, which helps me out). Someone else should drive you home & you rest flat on your back in the dark for the remainder of the day -- after a couple days, you can go back to your normal activities, including working out. If possible, it would be ideal to do it under flouroscopy to make sure they get the right place, but that's not necessary. Either way, I think you need to really push your doctors to treat you sooner rather than later. I would be hopping mad & threatening to sue (& I don't say that lightly) if they gave me the run around like they've given you.

take care,
frances

Angel,
I'm not sure whether you could get an infection at this point. I wouldn't think so, but I don't know for sure. Again, I would recommend against the exercise, especially since your doc is recommending bed rest. I didn't follow my doc's instructions the one time & I was in horrible shape. I participated in a fire drill at work, even though I felt like my head was going to explode -- 10 flights of stairs to the ground floor. There is a very rare complication that can result from dural punctures -- cerebral venous thrombosis. It is a type of stroke that can happen when an air bubble from a dural puncture crosses into the veins in the head. It's really very, very rare, but that and other complications can result from the puncture wound and in certain cases when left untreated result in death. They can do a venogram to diagnose & it's treatable & completely reversible, but still it just makes no sense to me why someone would want to risk it.

Maybe with your medical history it is too much of a risk to to the blood patch? The only real risk of doing a blood patch is infection, so perhaps your UC is the reason they don't want to do the blood patch. If that's the case, I guess I could understand, but I still think you should get a second opinion. I really think it is unnecessarily risky for you to be exercising without getting the puncture treated. There are a few other less common treatments for postdural puncture headaches that don't risk infection. Perhaps you could try one of those.

You sound like an active person & so am I, but I just know how dangerously close I came to having a stroke last fall b/c I was too stubborn to rest (going to work/a little yoga, & then a simple fire drill nearly did me in); I would hate to see you go through the same thing. Eventually, I collapsed at work & was forced to rest 24/7 until the air bubble went away. The only meds that helped the PDPH at all were high doses of narcotics, but I couldn't take too many of those b/c part of the treatment is to increase fluids and narcotics are dehydrating. So mostly it was just really miserable, but at least I am alive. If you have any other options, I would humbly suggest trying whatever options are available to you to treat it before it gets worse.

take care,
frances

Wow - no, I won't risk it. I see her again Monday so we'll discuss it. She's actually never mentioned the blood patch but the doc she's been consulting who did my lumbar puncture last week told me I should consider it and discuss it with her. I imagine she'll be on board with the idea but it's hard to say. I will get a second opinion if she refuses to consider it.

Rooster they're thinking it's spontaneous. Having an autoimmune disease you stop questionning anything. I got shingles last year and I'm 34 years old. I did have a serious respiratory thing late last year - I could have done something while coughing. And I exercise so maybe I pushed myself a little too hard. I also teach Sunday school at church and sometimes get put in the toddler room where I am lifing one and two toddlers at a time. (Not anymore of course.) Hard to tell with me!

Thanks Rooster and Frances - you guys have been very helpful. Now if I can just wait til Monday!!! I know you guys know how difficult each and every day is when your head is pounding 24/7. On the weekends now all I want to do is lie flat so I can feel decent for awhile. If she is agreeable I will try to get her to make it happen sooner than later.