Multiple surgerys for Chiari advice

I dont often reply in here, however this email caught my eye as the word Syrinx appeared in it, and alot of the posts in here dont have that complication attatched.

My 15yo son was born with abnormalities around his neck , and has several fused verterbrae.

He had Decompression surgery July 2016 as the syrinx in his spine had shown signs of increasing in size a little. He didnt have any symptoms. For us this was almost elective surgery, but was offensive in nature. The surgery appeared to go well to relive flow of fluid around the base of the skull. We were sent home within 48 hours, and he started to become very very sick. The support we received to be honest was appalling as our Dr had gone on Holidays before the surgery, and in Australia many of them dont provide mobile numbers to paitents, which I believe for serious situations as brain and heart surgery should be mandatory. Anyway thats another matter.

We eventually took him back to Hospital after a day or so of not getting better. He was found to have developed hydrocephalus. Perhaps it was just his brain being swollen and the new flow of things......so they provided sterroids which made him feel better instantly, and apparently helped a little with the fluid. However, after a few days in Hospital the Dr that was attending him (one of Brisbanes most arrogant and respected Neurosurgeons) that he was needing to have a shunt put in. My wife and I said "how long for?" He said it will be lifetime. At this time, our Dr was still on holidays, and this was a bloody harrowing time. We ended up waiting for him to return, which was the next day, and in the meantime, I read of all the stories about Shunt revisions etc...and it was now tortue for my wife and I...... Anyway, out surgeos said that he would consider doing a Endoscopic third ventriculostomy before a shunt....it may not work, but there was a chance, and if it were his kid, he would do that, rather than have a shunt for life.

My son was so brave this entire tim, but hearing this was the first time he cried. We all did, I was a mess, as in theory he didnt need to have the initial decompression surgery, as it wasnt a pushing matter. Whilst he had the final say in the matter, of course we said we thought it a good idea before.

So he had the surgery. MRI didnt show a "tell tale" sign it had worked, which was a thin black line of fluid going thru the hole.....but aparently you cant always see that. We spent a little more time in there, and he appeared stable. The Hydro didnt appear to be getting worse. So we were sent home again. My son improved evey day (still had some bad days).... Then after a few days at home he told us that when he lay down, that he developed an egg sized lump at the site of the hole of the ETV. He showed us. This was totally soul destroying, as it possibly meant the Hydro hadnt resceded, even though he felt great. We contacted the hospital (had our freaking Dr call us when he could) and he said bring him back in, as we may need to put a shunt in now. I cannot tell you how we felt. I am not a religious person at all, but over those months, I prayed many times. Of course you have to brave for your kid!

Anyway, we took him back in, and the Neuros (final year) intern saw us first, and said it may not be bad.....he actually said he had seen this before. So our son went and had another MRI, the Intern came in and said...news we werent expecting.......and blow me AWAY, it showed the Hydro had almost gone! And the Syrinx was now much smaller. Then the Neurosurgeon came in and said he couldnt tell still if the EVT was working as there still wasnt a slither of black on the MRI or CT scan......and that maybe the fluid had found a new way by itself. We were discharged the next day.....and as we were driving away my wife said "That was the WORST HOLIDAY EVER".....we all laughed.

Anyway, 6 months later he had his first follow up MRI, and it didnt show what we had hoped with the Syrinx.....it was still there. So we have another followup in 12 months.

Anyway, thats my story.....not sure what you can take away from that. I have mixed feelings about the entire situation. My son is now healthy, and some of the tightness and neck pain he had before the surgery (muscluar) has gone away, and I guess we can hope that the Syrinx, even if it never goes away, atleast is never a threat to become larger.

Good luck with your situation....I feel for you both, and families.

There is always a chance that everything will come good, even in the darkest of places.

Sorry I don't have any knowledge.  Go to Chiari U.K. On Facebook.