4 year csf leak

[Amplified2000]

I'm going to try this again.. I had posted this during the forum upgrade and it got lost in the shuffle.

I have been experiencing headaches since my AN surgery in 3/10.. I had a CSF leak post-op that required re-admission to the hospital and was treated with a CSF drain in the lower lumbar area. That helped the CSF leak in the head to close up but afterwards I was still having the same sort of low CSF headaches so they treated me for a leak in the lower lumbar area as well (blood patches). Ever since then I still haven't felt right, I feel like there is fluid in my ear.. get pressure popping noises all the time and still have headaches but the Dr's all say there is no leak.

My question to you is what were your symptoms and what not that led you to this treatment.. how did they discover this long term CSF leak? I'm just hoping that your story can maybe help shed some light on my current situation..

Thanks,

Kevin

[Mark241]

It began about a month after my AN surgery. Leak from the incision site, clear to a bloody discharge. Then it would heal for awhile, then a surgical screw came out of the site. They removed my cranial plate, and found a low grade bone infection. So I was on a picc line for 8 weeks. It cleared up again, until I took a plane flight. I had massive pain behind my eye, then discharge again from the incision site, and yes fullness in the ear. I had a revision of the incision again, and again leaked about 5 months after. My former Neurosurgeon refused to believe it was a CSF, given the time, and that he said he checked the area. I went back to Barrows where my original surgery had taken place. I met my new Surgeon, who after looking at a multitude of MRI and CTs said it was a CSF. My CSF was filling my mastoid, given that at times my body would heal the area, he placed the LP shunt in hopes that it would relive the pressure enough for my body to heal it for good. I cant really say that fullness is a sign of CSF or just the AN surgery. I'M just praying very hard that this is going to correct it, if not, the next step is mastoid obliteration, which I would prefer to avoid. I have a MRI on wed to check the area, hope my story helps.     

[Crazycat]

Hello Mark,

It is interesting that you have the LP or Lumbar-Peritoneal shunt. Due to the enormity of my growth (no pun intended :-) I was given a PV or Ventriculo-Peritoneal shunt.

It seems that the difference is the location of the device and where the catheter is snaked or run down to the abdomen. In your case, the L refers to "lumbar" meaning that the tube is run down along or through the spine. Is this what you have?

My shunt is located on the forward crown of my forehead with the short end of the catheter dipping into huge hole drilled through my skull. The indented hole (see "trepanning"), together with the tight, sausage-like skin covered balloon makes me look like a Frankenstein monster. LOL!!! No matter. I'm now 53 and well beyond caring about what people think about my appearance even though I religiously take good care of myself.

What interests me is why they installed a shunt that runs down the length of your spine rather than like what I have: My catheter runs back across the right ride of my head, over my temple, down the side of my neck, across my right pectoral muscle and into my abdomen. This method seems much less dangerous and invasive than having it run down the spine. Why did they do this? I mean all AN growths occur in the same location, either on the left or right side. My complaint is that they could have situated the balloon of the shunt further back on my head where I still have enough hair to cover it.

I've never had any problems with my shunt other than the day after it was installed. While still in the hospital, it had somehow become dislodged and I had to be rushed back into surgery the next morning for a reinstall. I became very ill that first night with projectile vomiting.

There was a time that I suspected that I may have had a CSF leak and went to see my Neurotologist, Dr. McKenna at Mass Eye & Ear in Boston. He ran me through a few simple tests and rightfully concluded that a CSF leak was not the case.

Hope things work out well for you...

[Amplified2000]

It began about a month after my AN surgery. Leak from the incision site, clear to a bloody discharge. Then it would heal for awhile, then a surgical screw came out of the site. They removed my cranial plate, and found a low grade bone infection. So I was on a picc line for 8 weeks. It cleared up again, until I took a plane flight. I had massive pain behind my eye, then discharge again from the incision site, and yes fullness in the ear. I had a revision of the incision again, and again leaked about 5 months after. My former Neurosurgeon refused to believe it was a CSF, given the time, and that he said he checked the area. I went back to Barrows where my original surgery had taken place. I met my new Surgeon, who after looking at a multitude of MRI and CTs said it was a CSF. My CSF was filling my mastoid, given that at times my body would heal the area, he placed the LP shunt in hopes that it would relive the pressure enough for my body to heal it for good. I cant really say that fullness is a sign of CSF or just the AN surgery. I'M just praying very hard that this is going to correct it, if not, the next step is mastoid obliteration, which I would prefer to avoid. I have a MRI on wed to check the area, hope my story helps.     

That does help quite a bit, thank you. I haven't had the same issues as you in regards to discharge from the incision site but I was recently treated for an infection in the mastoid region and some of the scans showed a fluid buildup in that area (I already had a mastoidectamy on that side from a previous tumor so there is a lot of empty space). The doctors are calling it a benign fluid collection but I can't get past the possibility that there is still a CSF leak going on. I've also had some pain in the general area of the surgery, around where the plate is that I didn't have in 8 months following my removal.

I had my AN removed at House and I live in IL so working with local doctors has proven a bit troublesome and I'm not sure I could pull off a trip back to House anytime soon as I exhausted  my FMLA leave time with my AN removal. My current ENT who does also specialize in AN's is convinced there is no CSF leak because he doesn't see any fluid collection in the ear itself.. your story has me inclined to seek another opinion.

[Mark241]

Hey Crazycat, ya the LP starts around the L3 area, connected to a small valve that releases CSF into a catheter that is placed  around my side to my lower stomach(Internal). This was chosen over the VP because I never experienced high csf pressure, or the headaches that go with it, and is more easily removed if need be. Still to early to tell if its' going to work out, my Doc wanted to try this before having to go into the same area for a third time. 

Amplified2000, I would get a second if I were you, and I was. The local surgeon I had always said it wasn't csf, and opened me up twice. He insisted it was a bone infection, my friend who is a ENT at Barrows, ordered a technetium (sp) scan, and showed no bone infection. I shoulda went back to Arizona when I had problems, but I really couldn't afford it then. Your FMLA time is supposed to be on a rotating calender from the first time you used it not on a calender year. I was our labor union president for quite awhile, and not that I am an expert at FMLA, but I have quite a bit of knowledge with it. All of the radiologist reports said it was csf, I would read yours and see if that's what they think. Good Luck

[Crazycat]

Oh, so the LP shunt is removable? Is part of it internal? I'm stuck with mine for life, whether I need it or not. And I don't think I do, now that the tumor has been debulked and out of the way.

I never had headaches from CSF pressure, only equilibrium problems. The shunt had to be installed to alleviate that pressure before the tumor resection and it helped enormously. There was one month in-between the shunt installation and the tumor resection and I could feel the difference, although it wasn't apparent at first.

I was in great shape going into it, trail running 5 miles a day through the woods. I kept going until I literally couldn't put one foot in front of the other. Two weeks after the shunt install, I was running four miles a day on paved roads. I remembered the doctor telling me that I'd be feeling much better after the shunt was in and he was right!

The tumor resection was a bear however. 15.5 hours in surgery with two weeks in the hospital and another week in a rehab hospital. I came out of it with my head feeling like a helium balloon stuck against the ceiling in a weightless environment: no sense of up, down, left or right, total left-side deafness, roaring tinnitus, left-side facial numbness and total double vision that required wearing an eye patch for several months afterward. I dropped a lot of weight; mostly muscle mass and developed a moon face from all the damned steroids they'd pumped into me. My metabolism had also been sabotaged. I definitely emerged from the ordeal a different person—physically as well as psychologically—than I had been going into it. And to think that this may have been only one of a long line of health challenges we could be facing as we get older!

I was a good illustrator with beautiful, flowing penmanship. Not anymore. The tumor was so big it compressed my brain and short-circuited my left-side abilities—I'm left-handed. I was a professional musician. That went out the window as well. If losing my hearing was enough of a nightmare, losing the dexterity in my left hand that made playing such a joy was even worse.

But conversely (and ironically), other truly good and positive things came out of the experience that wouldn't have happened had I never gone through it; and, by virtue of that alone I wouldn't want to change anything. It has been a growth experience in every sense of the word.

[Mark241]

Ya its' all internal, the Doc said if everything goes well, he can remove in in 8 to 12 months', or just leave it in, I'm more inclined to remove it, guess its' just a differant watch and wait.

[Crazycat]

Cool! Never hoid of such a thing.....