ANA Discussion Forum
General Category => AN Issues => Topic started by: Mark241 on November 28, 2010, 01:47:44 am
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Hello everyone. I'm new to this great site, but not to AN. Short version, right 3.5 cm AN removed retrosigmod Nov 06 at Barrows. Had a 3.2 cm menningioma removed from my C1, C2 in Jan 06 with no problems. The An however, has been a nightmare. Began leaking 2 weeks post-op from the incision site. I was stitched backup which lasted for a couple months. The leak began again intermittently for the next 2-3 months. Then a surgical screw came out of the site. I had surgery at U of New Mexico hospital, where I live near. The neurosurgeon there said it was a bone infection and not csf. So i was on a pic line for 8 weeks. I began leaking again about 6 months after that. I went through another surgery, where they resealed my mastoid bone, still be living it was an infection, even though my blood work was fine, and i wasn't placed on antibiotics afterward. 6 months after that I leaked again. I got back in touch with my ENT at Barrows, who ordered a technetium bone scan, the results of that showed no infection. So I just came back from Barrows last week. My new neurosurgeon, said it was a csf leak, and wants me back there in a few weeks to place an LP shunt. Hind sites 20 20 , anyone out there had an LP shunt? Please no horror stories, I've lived that long enough. Thanks
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Mark .....
Welcome to this forum and WOW, what a nightmare you have been living. For the newbies, what you are going through is very unusual and extremely rare.
I did not have a CSF leak, nor an LP shunt so I cannot comment on that. Perhaps someone can shed some light on this for you with posts coming along. I know Kathy (currently on the forum) has been through a similar nightmare of the incision not healing, PICC line, etc. so hopefully she will see this and comment.
Just wanted to say you have my thoughts and prayers that this shunt will be the answer to complete healing soon.
Clarice
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Hi Mark,
Sorry I can't chime in either about the CSF leaks, you poor guy :'( trust me you will get lots of sympathy here, because we know it is NO fun dealing with life's new punches.
The LP shunt will help if it is indeed recurring CSF leaks. An easy procedure/surgery I believe, but others will chime in.
Hang in there, bud.
Maureen
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Hi Mark,
I have an LP shunt implanted after my first surgery in 1988. It was a very easy procedure. The shunt has been an absolute miracle allowing me to finally heal months after surgery took place. It is still there, lasted me over 20 years and went through two pregnancies. The scars were closed using plastic surgery techniques and are totally invisible by now.
I was told by the implanting surgeon that shunts actually have an expiration date. He has never seen one working after 10 years. So, mine is most likely not working anymore.
LP is the easiest shunt to have, followed by VP (ventricular-peritoneal) one.
So, don't worry, go for your LP shunt and finally forget about your AN!
Eve
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Wow! Thanks so much for the replies! Especially the success of your shunt, that really gives me hope!
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Set for the LP shunt on Jan 4th at Barrows, kinda lookin forward to it, thanks' to all of your responses. I'll let ya know how it goes. Thanks' again.
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Good luck on the fourth, finally an end to your leak!
Liz
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Well had the LP shunt placed! The surgery took about 45 minutes, and only an over night stay. The only annoying symptom is headaches while standing or walking. These are called low CSF headaches, I would have them when I was having serious csf drainage. My Doctor said they should clear up in a week or two. Other than that, just the slight pain at the incision sites. Hoping this all works out. Thanks for the encouragement, Mark.
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Mark ~
Alright! Congratulations on getting the LP shunt and putting an end to the CSF leaks. I trust your doctor will be proven correct regarding the headaches disappearing after a few weeks. That makes sense. Please post any updates, as they may occur. Thanks.
Jim
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Did you have the shunt place at Barrows or at UNM? I live in Albuquerque and am also dealing with my AN, but I am doing all of my follow-up now with doctors through Presbyterian. If you are interested in talking with me, let me know. I had a very bad experience with my doctors and my surgery at Barrows and I would never go back there (not the hospital, but my surgeon), but everyone's experience is different.
I hope that you are feeling better now,
Tonya
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That's great, Mark. I just saw this thread for the first time and understood a little more of your history now. Are you done with treatments for now? I hope the headaches go away soon, and I'm glad that you are encouraged.
keri
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Good luck with your recovery. Hopefully your headaches will go away.
Bell
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Headaches are just about gone, maybe a slight one early in the day. And the incisions seem to be healing nicely, most of all no leak!
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Whew!! Heave a very big sigh of relief! Hope everything continues to go your way :) You certainly deserve it, after all this time.
Priscilla
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Very good news indeed. Thanks for sharing.
Kenneth
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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
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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.
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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...
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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.
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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
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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.
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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.
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Cool! Never hoid of such a thing.....