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On Oct 26th my husband was decompressed for chiari 1 with a duroplasty being done. Things went really well and he was out of hospital within 48 hours.
One month after getting home he looked down and heard a pop, within a couple days he hd a large pocket of fluid at the back of his neck. We returned to the hospital and were told that they thought it was a pocket of fluid filling the space (sorry forget the name) and that it would go away, they did a CT and couldn't find anything that would indicate a leak. Over the next few months the pocket of fluid got bigger and we names him Henry, he was monitored until jan when they decided that this was not going away and there must be a leak so surgery was needed again.
On Feb 22nd he went in for surgery to have the duroplasty patch redone to hopefully fix the leak and at the same time they moved tissue to fill the open space that the fluid had created as now there was a large space were the fluid was building.
Within 12 hours of surgery Henry returned and we were back to step one. The doctors decided they needed to take him back to surgery and re-do the duroplasty patch and do a procedure that was a trapezius flap flip so that they were filling the space and putting pressure against the skull to put pressure on the area without interfering the decompression to hopefully make the patch hold this time.
He had this surgery March 8 and he came out of surgery cut from the middle of his head to the bottom of the shoulder blade and in a lot of pain recovery was very slow and painful and he lost a small amount of mobility in his left arm. We spent 20 days in hospital from Feb 22nd until March 14th with a spinal drain and 2 JP drains in his back. On march 14th they took the spinal drain out and let him come home with the two JP drains, things were going ok but there was a large amount of output, we had questioned if this could be spinal fluid leaking again and were told they didn't think so but a seroma due to the trapezius movement and the large empty space this left in the back.
On Apr 3rd one of his JP drains clogged and had to be removed, this resulted in there being only 1 left and there being a large amount of drainage from the one tube. Second week of Apr he started to present with pressure headaches again so the doctors sent away a sample of his fluid to see if there was CSF in it, this test was going to take 2 weeks to come back as it had to be sent off site but the doctors were still optimistic that this was not CSF but in fact a large sermoa. On Apr 14th the second one clogged and had to be removed which left no drains. Within a week he had a large pocket of fluid on his back that had to be drained with needle drainage twice a week for 2 weeks, The rest of us would think this would be very uncomfortable but he has limited feeling in this left side on his back due to the last surgery so for him he felt nothing.
On Apr 26th he got the test results back and it was confirmed that it was in fact CSF, this was very frustrating for us but in some ways a relief as we then knew once it was fixed the pressure headache that he had had for the last 2 weeks consistently was going to go away once this was fixed as the doctors were starting to talk chronic pain and he didn't want to have to cross that bridge. Even though he has had complications the chronic pain and numbness went away with the decompression surgery so chronic pain wasn't words he wanted to hear.
He now has to have 2 more surgeries one to again fix the leak and one to scrape the film that has been created in the back from having CSF fluid in the back, they are going to try to do both at once but are not sure they are able to do so. The doctors are now starting to think he over produces CSF so this is putting pressure on the patch and making it let go. We are pretty sure the next surgery will involve a shunt as they had warned us of this when he had the last surgery.
May 5th he had an MRI to determine where he is leaking CSF so that his plastics doctor (this is who moved the trapezius muscle) and his Nero surgeon can put together a plan of action. We expect a call within the next few weeks with a surgery date and a plan of action and then we will start this process all over again
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