I am 7 weeks post-op and see my neurosurgeon this Friday morning. For as long as I can remember (since surgery) the back of my head has been sensitive to touch, tender, a bit swollen. I'm not sure how long but I've noticed it's puffy and swollen back there, I can feel along the shape of my head, then I get to a part along the back where it juts out and there is a lump. For the past week or so I've noticed this lump to change sizes, sometimes it's bigger, sometimes it's smaller. Today it is particularly big and alarmed me so I started googling different things and it got me worried again about a CSF leak which I've already been told I should be experiencing headaches with a leak, and I am not. I actually feel pretty decent lately! My neck and upper back have been sore, but this lump on the back of my head is scaring me. I don't want a shunt or 2nd surgery, but this lump feels like it's just full of fluid, I've even had other people feel it and they agree it feels like fluid.
Any ideas what it could be - any similar experiences during post-op? Thanks!
It does sound like it could be a leak. Not everyone has headaches. I don't have headaches and I have a large leak, now @10 wks post=op. A communicating leak can change size, mine does. My NS advised to remain upright, even sleeping upright. Its now getting smaller so I do have hope it will resolve without any further surgery. My NS is a chiari specialist and he says they almost all resolve without any intervention. Be sure to post an update after you see your NS, take care.
Oh geez, see that's what I'm worried about, a month ago at the doc's I mentioned a leak because I was having some of the symptoms like runny nose and nausea and major headaches. Now I'm feeling pretty good but my runny nose is pretty constant, I had a minor back of the head headache last night and an all-over headache today but it's not bad at all, I took an oxycodone and a muscle relaxer and it was gone in a half hour.
I hope like Adria, they don't need to do anything because my sister's wedding is on the 31st! I need to dye my hair!! Lol.
Susasn - what did they do for yours? Mine too is sticking out but if i touch my chin to my chest it goes flat...you can still touch it though and feel it's all squishy.
Please let us know what your NS says at your appointment tomorrow. Meds did help my daughter for the time being but I’m worrying that the fluid will come back once the meds are stopped. The meds might be worth a shot since you’re only 7 weeks postoperative. Good luck!
I'm going to the NS today at 4, last night I had horrible headaches and pain and then this morning it hurt SO bad to sit up. Sure signs of a leak, I'm so scared of what they're gonna do :( My mom was freaking out and said I need to call the doc TODAY and they fit me in the only place they could. I'll let you know what happens.
He agreed it looks like a leak and I'm having an MRI tomorrow. He said the solution is to go in and repair.
I'm concerned because I'm a bridesmaid in my sister's wedding on August 31st :(
But I am hearing that repairing is the best solution over other options and I feel really bad today. He didn't say anything about staying in a specific position, laying down feels best, but it makes sense to sit upright so the fluid doesn't pool.
Sorry to hear this, hope you don't have to have another surgery ! Mine is getting smaller, the NS said by staying upright gravity will move it down to the neck then the brain can no longer communicate and the excess fluid will absorb into the neck tissue. Without the pull from the pseudo the leak will seal itself. This is whats happening to me, the fluid moved down in the back of my neck and now it's much smaller. I hope it keeps going this way.
I have to agree with adia that sometimes watchful waiting can resolve a pseudo. As long as you feel ok it is probably wise to stay as upright as you can. Sometimes meds that suppress CSF production for a short time can reduce pressure and allow healing, as in my daughter’s case. Her fluid buildup was “giant sized” and caused many severe symptoms…we were ready for the repair surgery. We wanted it fixed right then! However the team of doctors talked us down and convinced us to try the meds and staying upright, saying most leaks reseal on their own. Happily the pseudo has pretty much disappeared and just like adia said it went from the back of her head to lower on her neck. Aida, do you notice a dent where the swelling used to be?
In any case we are happy to hear that the leak has resolved in many of other Chiari warriors, either through surgery or not.
I just read your post. You need to call your neurosurgeon this morning and let them know exactly what you described with your symptoms. You may need to be seen sooner. Love and prayers for you. Mary Lou