CSF Fluid build-up?

[Zinnia]

Hi there,

I'm hoping to get some advice from others. I'm currently 9 weeks post-op after a 1.7x1.3 AN removal using the retro approach. They were able to get the entire tumor out and I lost my balance nerves and hearing on my right side. I started having major headaches at about 5 wks that have gradually become more and more constant, along with my balance worsening as opposed to getting better. I have three small children so I thought it was from doing too much but I finally got it checked out on the advice of my PT. I had an MRI last week that showed a build-up of CSF fluid around the incision area. I meet with my neurosurgeon today to discuss options but from the brief conversation I had with his PA on Friday leads me to believe they will recommend surgery. Has anyone else experienced this? Has anyone had the fluid drain on it's own? I'd love any feedback from others who have been in this situation.

Thank you kindly in advance for any insight or advice!

All the best,
Edie

[Jim Scott]

Hi, Edie ~

I'm sorry to learn of your complications following AN surgery.  However, CSF leaks are not unknown.  AN surgery patients can and do experience them.  I'm not a doctor but to my knowledge, a drain is usually inserted and the incision site is re-closed.  Your doctor can give you a more detailed explanation.  This is not a major surgery and usually remedies the CSF problem.

Please try to update us as you address this.  Thanks.

Jim

[Zinnia]

Thank you for your response, Jim. I really appreciate it. I was hoping there wouldn't be any complications, of course, but now that I'm here I just want to get it resolved. I must say, I'm a bit paranoid since learning of the build-up so I'm hoping we can get it taken care of sooner than later. I will post an update after I meet with my neurosurgeon today.

Thanks again for your kind response.

[Zinnia]

So I met with my neurosurgeon and he wasn't worried about the fluid in and of itself. However, when we discussed my headaches and pressure he decided to do a lumbar puncture to see if there was elevated intercranial pressure. I guess the normal range is 10-15 and mine is at 23. He wants to try steroids for a week to try and reduce any inflammation that may be causing the pressure and buildup. If that doesn't work he will put in a shunt.

I feel okay albeit a bit bewildered. It's not at all what I expected this far into my recovery and I can't help wondering if it was me doing too much, a surgical error or just bad luck. I guess it's somewhat irrelevant at this point. At any rate, I'm glad to have a plan in place although I would welcome any more advice or perspective of others who may have experienced something similar. I'm especially curious about how and if a shunt affects daily life.

Thanks in advance.

[Crazycat]

Zinnia,

I had a big problem with CSF and hydrocephalus but it was taken care of before the tumor resection. The shunt installation took place one month before the tumor resection. Excess fluid puts pressure on the brain and compromises equilibrium.

I'm a runner. When I was jogging downhill (before the shunt surgery) I could not stop running or even slow down unless I grabbed on to something like a sapling or a street sign to break my forward momentum; I'd stagger around like a drunk and could not, for the life of me, walk a straight line. If I stopped short on a downward incline even when walking, I'd start to fall forward and could not stop from falling flat on my face.  Also, my hand writing deteriorated (I'm left-handed). Although I was still very sick and not out of the woods yet—after the shunt surgery and during the month in-between the main event surgery—I noticed a dramatic improvement in my gait. I was more sure-footed.

I still have the shunt and will have it the rest of my life. It doesn't hurt at all. However, the appearance of a shunt can be rather unnerving. I have this weird protrusion under the skin on the crest of my forehead with the indentation of a hole drilled through my skull and a catheter that runs across the side of my head, down the side of my neck, across my right pectoral, that disappears into the abdominal cavity where the fluid is absorbed. My hairline has receded which doesn't help. If you have a full head of hair you'll have no problem hiding it. This sounds a lot worse than it really is.

That you have CSF build-up after the tumor has been removed seems unusual. Hopefully it will be taken care of without additional surgery.

Best regards.....

[william5822]

Zinnia..
I can only tell you from our experience recently.
My husband is 7 weeks post op. On the 10th of January we met with the neurosurgeon and I questioned a small "squishy" area at his incision. He was not concerned. 2 days later I come home from work and he had a HUGE goose egg of swelling at the incision site. I immediately emailed and called the surgeon. They explained it was a CSF leak and he was really not concerned at this time. He said the body would soak up the fluid on its own and that there were still lots of healing time needed inside the head/brain and that these can happen. We just had to watch him for fevers or external leaking. I'm excited to say that 5 days later it was all gone! YEAH! I almost think he did too much at one time because on the 10th the surgeon removed his restrictions at home. of course he thought that meant he could do anything and everything!

hang in there. I think the unknown is what worries us the most but so far things are going okay here. Just a few bumps along the way.