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Old 11-26-2012, 07:28 AM   #1
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CSF leak? MRI & Dr.still no clear answers

Hello Fellow Leakers, I'm sure there are a number of you out there that may be able to shed some light on an ongoing problem I've had.
Long story short:
Had a pain pump implanted in '06-developed a CSF leak. After 3 blood patches & one year of leaking, I had it repaired (and a L4-5 fusion).
Last month I had the pain pump removed. Developed a large amount of fluid in my back & when I went to get my staples removed my neurosurgeon drained it out. Within one hour the fluid came back.
Next day, I went into surgery to fix the leak (Dr's surgical notes said it was a puncture)
My PM Dr. ordered an MRI with/without contrast. Here's what it reads:
There is a 4.1X6.7X0.8 cm fluid collection w/in the soft tissues dorsal to the L3 level. A 7mm focus demonstrating fluid signal intensity is seen within the epidural space dorsally at L2-L3 level. (that's where the pain pump catheter was at) While no definite communication with the aforementioned soft tissue fluid collection is appreciated, a track does extend from the superficial collection toward the spinal canal, suggesting the sequela of CSF leak and/or post surgical seroma.
Impression states the opposite: No direct intrathecal is appreciated as detailed above.
Is it me or does this MRI contradict itself??? Sent films to my neurosurgeon, he responded with "It could still be a leak-it could heal itself & suggested a blood patch. (which I had previously asked him about-he said they don't work!
I still have fluid at the site of the incision and it spreads over to the right side of my back, pressing on the sciatic nerve. Still not able to walk much. AND, I don't have headaches-and did NOT have headaches even before the second surgery (the puncture) I guess you could say I'm not a "normal CSF leaker"!!!! Any insight greatly appreciated!!!!

 
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Old 11-26-2012, 07:42 AM   #2
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Re: CSF leak? MRI & Dr.still no clear answers

I think I would try the blood patch. They sometimes say they don't work after surgery but I had a leak and the blood patch did work, after surgery. What do you have to lose? Be sure not to take aspirin, blood thinners or any antiinflammatories for several days before and after the patch, as they interefere with platelet function and can make the patch ineffective. Check with your Dr about this if you are on blood thinners.

 
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Old 11-26-2012, 09:45 AM   #3
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Re: CSF leak? MRI & Dr.still no clear answers

What was the cause of your leak,if you don't mind me asking?? Do you recall what the Dr. used to seal up your leak during surgery??
Thanks for responding!!! I'll do the BP if the new neuro thinks it's needed. I just never had any luck with them in the past. Kind of skeptical…

 
Old 11-26-2012, 04:09 PM   #4
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Re: CSF leak? MRI & Dr.still no clear answers

Hi lginfl, I agree that MRI ambiguous, I had 3 CSF leaks after surgery, fixed with fat or fascial grafts. Maybe ladybud or someone will know. Why do leaks happen? Was it my dr or my particular body, the way i heal or a combination? I have wanted to know this for years. Greatly appreciate any info that anyone has about how, why this happens? lginfl, i hope that it heals without anymore intervention of any kind. Glad you are having it checked by 2nd opinion neurosurgeon, hopefully he will find solution. Thank you, gmak

 
Old 11-26-2012, 06:26 PM   #5
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Re: CSF leak? MRI & Dr.still no clear answers

CSF leaks occur for several reasons. During spinal surgery, the surgeon is working on bone that is right against the dura, the covering of the spinal canal that encases the fluid. It can be very thin in some people, making it more prone to injury. Think of the thin skin that encases a sausage. If an instrument or bone fragment, which can be sharp, knicks the dura, a leak can result. An individual's healing process can be faulty, not letting the dura heal, or the hole can be so big, it cannot heal. If the dura is abraded, like a scraped knee, that can leave a large oozing surface that the fluid breaks through, much like thin ice breaking apart. The fluid is under pressure, which makes healing hard, like trying to hold back the water flowing out of a hose. Blood vessels that get cut and leak have platelets and clotting factors in the blood to close the hole with a clot. There are no such safeguards in the spinal fluid to prevent the leak from continuing. The way a blood patch works is the hole in dura is covered by blood, which then clots over the hole, and the clot is very gradually absorbed while the dura underneath it heals. That is why platelet inhibitors, which keep the blood from clotting, absolutely must be avoided for several days before and after a blood patch. My husband had a huge CSF leak after back surgery from a surgeon caused abrasion that suddenly broke open, never healed, and required another surgery using fat and fascia to cover the large abrasion. He had a fluid filled sac the size of a grapefruit on his back, and literally turned grey every time he raised his head off the pillow. He was totally bedridden for 6 weeks before the surgeon would admit there was a problem. Infuriating! His ego was at stake because he knew it was his fault. I hope you get a good result and get well soon!

 
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Old 11-26-2012, 07:44 PM   #6
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Re: CSF leak? MRI & Dr.still no clear answers

Dear ladybud, Oh my goodness! I had a CSF leak from my original injury. I never understood how fragments of exploded discs rubbed holes in dura until now. Over & over every surgery, i leaked. NS describes my dura as denuded. Like sewing wet tissue. In bed after fat grafts, three months everytime, so the pressure wouldnt raise in CSF against newly patched dura. Once, for weeks to wait for abraded dura to become a single hole because my dura couldnt support a large graft to cover many tiny holes that were spread out, this was a fascial graft. So, when a recent PMNS told me to get SCS & i said my dura had problems, i had the OR reports on my lap, his reply was Im sure your dura is fine, ma'am. I was right in thinking, "Get me out of here!" Thank you, ladybud more than thanks can say really. You have helped me beyond anything i could have imagined. Not just here but so many, many times. God bless you, gmak

Last edited by gmak; 11-26-2012 at 07:52 PM. Reason: typos

 
Old 11-27-2012, 11:52 AM   #7
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Re: CSF leak? MRI & Dr.still no clear answers

Thank you!!! You sound like a very informed person and I greatly appreciate your input! I see a neurosurgeon soon but don't think he'll be the one to do a blood patch. Doesn't that require an anesthesiologist? My prior PM doc did them in his office but I'm not in that area anymore. Not sure about my current PM doc. Hopefully that's all that needs to be done this time. I totally can feel for your husband as I just underwent the same surgery. I had a huge lump in my back about the size of a roll of quarters. Mind you I only weigh 100 lbs so it stuck out. I wish my last neuro would have used the fascia and fat as yours did (and GMAK's too). Maybe I wouldn't still be leaking now. God Bless!!!

 
Old 11-27-2012, 12:13 PM   #8
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Re: CSF leak? MRI & Dr.still no clear answers

Dear lginfl, I dont think it takes a PM/anes to do a blood patch. NS can do them. Even ob's can do them. I could be mistaken. The body is a miraculous creation. Ive heard of MANY leaks that are caught inside eventually burst open incision to let CSF drain. Could be that you arent having spinal headaches b/c you are staying hydrated. Glad to know your not in "trouble". Its a relief to hear you are just in limbo, even though you want a fix yesterday! lol Keep updating here b/c( im going to start saying por que) you are in precarious situ & hearing your progress is comforting. Thank you, gmak

 
Old 11-27-2012, 12:32 PM   #9
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Re: CSF leak? MRI & Dr.still no clear answers

The blood patches are usually done by anesthesiologists who are pain management docs too. I hope it works for you!!!

 
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Old 11-27-2012, 01:06 PM   #10
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Re: CSF leak? MRI & Dr.still no clear answers

I just called my PM office and they do blood patches. I guess he wants me to see neuro before he decides to do it. With all the waiting time to see the neuro., the swelling at the incision has gone down tremendously!! I hope the fluid is just left over and it's healing!!! That's what I'm hoping and praying for! Can't wait to be done with this chapter in my life!!! Mentally I've moved on, physically; working on it. Thanks again!!!

 
Old 11-27-2012, 01:49 PM   #11
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Re: CSF leak? MRI & Dr.still no clear answers

Dear lginfl, Thats great! Hopefully, by the time you see NS surgery will not be even needed! Nor a blood patch. Thanks for updating!! gmak

Last edited by gmak; 11-27-2012 at 01:50 PM. Reason: typo, work from 9" screen!

 
Old 12-03-2012, 11:37 AM   #12
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Re: CSF leak? MRI & Dr.still no clear answers

Wednesday the 5th, will hopefully get some answers. Hope the new neuro won't want another MRI. My mom said with all the ones I've had in past and present, I may start to "glow" at night. HMMM, makes you wonder what all that stuff can do to you.

 
Old 12-10-2012, 09:11 AM   #13
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Re: CSF leak? MRI & Dr.still no clear answers

UPDATE!!! New neuro says it's definitely NOT a leak!!!! I tried to get him to waver or test him and he just kept telling me and showing me on the MRI's that there is no way this is a CSF leak!!!! I asked him if I could give him a hug & he said absolutely!!! I am finally free!!!! THANK GOD!!! And God Bless all who have helped me & prayed for this nightmare to end!

Last edited by moderator2; 12-10-2012 at 05:09 PM.

 
Old 12-13-2012, 07:26 PM   #14
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Re: CSF leak? MRI & Dr.still no clear answers

Quote:
Originally Posted by lginfl View Post
UPDATE!!! New neuro says it's definitely NOT a leak!!!! I tried to get him to waver or test him and he just kept telling me and showing me on the MRI's that there is no way this is a CSF leak!!!! I asked him if I could give him a hug & he said absolutely!!! I am finally free!!!! THANK GOD!!! And God Bless all who have helped me & prayed for this nightmare to end!
Hi lginfl, So happy that that ordeal is finally over for you. Saw something on news that some connectors in pump when not aligned right & not clicked into place that the medicine can drip out & forms medicine filled pocket. Just so glad not CSF. Thank you for updating!

 
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