Fluid Leak - anyone else?

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AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/23/2009 5:23 PM (GMT -6)   
Here is the shortest version I can do - horrible headaches, every day. Doc put me on migraine medication. Didn't help. Had me take migraine + 1 vicodin - didn't help. Then had me take migraine + 2 Vicodins. Didn't help. Referred me to a neurologist. Immediately suspected CFS leak. Had me lie flat - headache went away. Ran CT's, MRI's, cisternogram with dye, and just last week a nuclear cisternogram - all negative. The doc who did my lumbar puncture this past time said that he sees a few of these a year, usually young females such as myself. He told me to ask my doc about doing a patch just to see if it will work. I also have weird symptoms like dizziness, having trouble coming up with the right word when talking, bouts of nausea, not walking in a straight line... Just weird things. The headache itself has not gone away - it's been here for several months now. I did take my doc's advice a few weeks ago and took 5 days off work and laid flat in my bed all day and all night. For a day afterwards my head did not hurt but the headache came back the following day. When I lie on my back I get relief quickly. The only other thing I can think of is that I have a spot on my back, right along the spine that hurts. The pain isn't persistent. It comes and hurts really bad, then goes away like it was never there. For the past few days it's hurt really bad. Yesterday it was hurting and I couldn't stay on my feet very long b/c I felt like I was on a roller coaster. sad
 
Any thoughts? I feel like I'm losing my mind but I know I'm not!!! Could this possibly be a spinal thing that might require a doc who looks at those types of things?
 
Thanks
34 year old female, Diagnosed Ulcerative Colitis 5 years ago
Current Meds: Remicade every 6 weeks, Prevacid, Lialda, Lexapro (anxiety), Synthroid, Symbalta, Sustenex, Iron, vitamins, Fish Oil
 


Ginnia
Regular Member


Date Joined Nov 2008
Total Posts : 48
   Posted 3/23/2009 8:46 PM (GMT -6)   
Did the doctors do a lyme check? 
Just wondering. 
Blessings,
Ginnia

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 3/25/2009 5:20 AM (GMT -6)   
Sounds like a leak to me. I have had a leak for 4 months now. I can relate to the other "weird" symptoms that you get. Don't get discourage by negative results on test they often can't find the leak. Have you ever had a CT myleogram done? I think it is different than a cisternogram. I am thinking about getting a blood patch done, I hope it works. Bed rest, fluids, and caffeine usually help heal these things with plenty of bed rest. Also no bending twisting or lifting anything over 5 lbs, seriously. This is an extremely fustrating condition but hang in there. Its not life threatening or anything just very painful. Here is a forum strictly for leakers that may help you get more info. Let me know if I can help in any way with info/questions.

"CSF Leakers" Forum: http://brain.hastypastry.net/forums/forumdisplay.php?f=126
"God won't take me to what he can't take me through"


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/25/2009 7:38 AM (GMT -6)   
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!!! tongue
 
And no, no lyme testing.
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 3/25/2009 10:43 AM (GMT -6)   
Yeah it sucks, well at least your docs know what it is. a lot of people ,have headaches their whole life and never get a diagnoses. I have heard that blood patch is effective in about 2/3rds of patients so that is pretty good odds. Be well
"God won't take me to what he can't take me through"


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2312
   Posted 3/25/2009 11:25 AM (GMT -6)   
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

AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/25/2009 11:41 AM (GMT -6)   
Thanks to you all for your help - I have a call into my neurologist to discuss the patch. It's got to be a leak - I have no pain when I am lying flat. And it's good to know that the other symptoms (tremors, short term memory loss, trouble finding the words I want to use, dizzy, vertigo, blurred vision, etc) aren't in my head. It's good to know there are others and that you can feel better!!! Thanks again!!!
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2312
   Posted 3/25/2009 12:53 PM (GMT -6)   
For more information, you might also try googling 'spinal headache' or 'postdural puncture headache'.

AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/25/2009 2:36 PM (GMT -6)   
One more question - I know lifting is out. In fact she told me nothing over 2 lbs (my purse alone was more than that!!!) I've behaved and made changes to accomodate not lifting nor bending over. How about exercise? I have to take a Vicodin or two in order to do so, but I'd like to do a little bit on my wii fit each night. If I stay away from anything too strenuous and no bending over do you think that is OK? (ie how much have you been told you can do safely?)

Frances - Trust me I've googled and googled and googled. I got more from this forum and the recommended forum above than I have from any educational site. It's just good to know there are others who go through this and truly know how to handle it.

Thanks again!
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2312
   Posted 3/25/2009 6:26 PM (GMT -6)   
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

AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/25/2009 7:34 PM (GMT -6)   
Thanks Frances - that is good information. That is what I am worried about - getting an infection. What I didn't say is that I am on Remicade for Ulcerative Colitis and that medications takes your immune system down so I am at even greater risk. It worries me. My back has been hurting so I doubt I'll feel like getting any exercise anyway. Sigh. I actually like my doc a lot but I do think she is being unreasonable suggesting I lie flat on my back 24/7 rather than doing a patch and seeing if it will work. As you know this pain is debilitating and makes life pretty rough. Well thanks again.
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2312
   Posted 3/25/2009 8:58 PM (GMT -6)   
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

Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 3/26/2009 4:12 AM (GMT -6)   
Is you leak spontaneous or traumatic?
"God won't take me to what he can't take me through"


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/26/2009 6:44 AM (GMT -6)   
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!
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Rooster427
Regular Member


Date Joined Feb 2009
Total Posts : 56
   Posted 3/26/2009 7:16 AM (GMT -6)   
Thats what I have. Spontaneous leaks are different than traumatic. Traumatic can be alot worse but are much easier to fix (because it usually soobvious there is a problem). I would get a blood patch if they think its a leak, there is lttle risk involbed and your HA could be gone completely!!
"God won't take me to what he can't take me through"


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 3/26/2009 7:21 AM (GMT -6)   
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.
34 year old female, Diagnosed Ulcerative Colitis 2003,
Current Meds: Remicade every 6 weeks, Prevacid, Lexapro (anxiety), Synthroid, Canasa 
 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2312
   Posted 3/26/2009 10:09 AM (GMT -6)   
Angel,
I guess I was confused. Did your headache start before or after the lumbar puncture? If it started after the lumbar puncture, it can be fixed with a blood patch.

If it had been going on for quite some time & this was your first LP, then it would be like finding a needle in a haystack to try & do a blood patch. The blood patch needs to be within 1-2 levels of the tear or it will not do any good. LP's & epidurals can cause headaches resulting from the fluid leak, but the symptoms would on-set within a couple hours to a couple days after the procedure. They can last for a very long time, but if the headache onset is not at all associated with one of those procedures, I would say that Rooster could really be much more help to you that I can. He is 100% right to say that the dangers I mentioned are associated with trauma from an LP or epidural & not with slow leaks.

I'm not really sure what to recommend to you to treat a slow leak that occurred naturally, but will definitely say an extra prayer for you on Monday. One thing that I'm not sure if it would help is cranio-sacral therapy. It might be something you could look into. It is a type of very gentle massage that helps regulate the CSF pressure. I have had it for Chiari & for PDPH and it did help me some with those, but I'm not sure about spontaneous leaks. Something to consider at least.

best wishes,
frances
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