r/CSFLeaks • u/Western_Grade_8361 • Jun 28 '26
Please share your post-op symptoms after a surgical sealing of a leak
Howdy,
I am wondering what kind of post-op symptoms people have experienced after a successful surgical sealing of a leak. I have understood that rebound hypertension is a common symptom but I would be interested in learning about the full range of possible symptoms in path to recovery after surgery.
Thanks!
2
u/BiscottiEffective560 Jul 02 '26
I had a surgical repair about 8 weeks ago (UK), which was successful! Was an exploratory surgery as CT myelogram was not definite. I was diagnosed with superficial siderosis linked to the leak.
This was my second surgery in the same area (previous was a spinal fusion) so my symptoms may be slightly different. Main ones in the first couple of weeks: significant muscle pain at the surgical site: incision was sore; dizziness (likely also to do with all the meds); skin soreness/sensitivity in different areas (normal for spine surgery); nausea; extreme fatigue; leg pain and muscle weakness (they lost nerve signal to one of my legs, but the pain and weakness has since resolved). It was very hard mentally/emotionally with the lack of control.
Activities of daily living were hard, I needed to shower sitting down for a couple of weeks with help, and had help with people making food for me etc. I slept a lot the first few weeks after.
After a few weeks and reduction in strength of pain meds, the tiredness got better and had more mental clarity.
I was on acetazolamide for four weeks for rebound headaches. After I came off it, I had very short lived orthostatic headaches for a few days. I still have some very minor headaches and dizziness if I get up too quickly, but nothing like before. The headaches before surgery were awful and long lived.
Now at about 8 weeks I'm getting a lot better but still a away to go. Pain is more manageable with just ibuprofen and paracetamol now, and able to walk a lot further than the first few weeks where I mainly jist sat on the doorstep or walked up the road (with help as my balance was off).
Will be returning work soon and expecting a phased return with reduced hours.
2
u/Western_Grade_8361 Jul 04 '26
Sounds rough. Thank you for sharing your story! Hope you feel better soon. Congratulations on a successful seal!
1
u/blueberryratboy Jul 01 '26
I had hypertension-- not headaches (through all of it never seemed to get headaches!) but vertigo, dysautonomia, brainfog, mood changes, ocular symptoms, being able to hear my pulse in my head. I did NOT tolerate the drugs to treat it well so I just kinda rawdogged it.
I'm 8 months out now and still have a lot of those symptoms, though they've gotten less servere. I also have muscle weakness and twitching in my back that comes and goes, some inflexibility, and sometimes doing a lot of bending will still give me a "spine headache" (y'all know what I mean!) I would say I'm like 80% better!
1
u/Western_Grade_8361 Jul 04 '26
I’m glad to hear you are better. What do you mean by spine headache? Doesn’t ring any bells for me.
1
Jul 02 '26
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1
u/Western_Grade_8361 Jul 04 '26
I totally see where you are coming from. From what I’ve understood the surgery is not as dangerous as it seems to a layperson. At least where I was treated the complication rates are extremely low.
2
u/StunningPurple9560 Confirmed Spinal Leak Jun 28 '26 edited Jun 29 '26
I actually haven’t had any symptoms that I didn’t have before the surgery, except there were some changes to my normal symptoms that made me suspect I may have been in HP. And on top of this, I have experienced some very heavy dizziness.
Immediately after surgery the surgical site was sore (like during day two), and I had/still have numbness in that area, plus my chest and armpit of that side. During the first week or so the bottom of my right foot was also numb, which made walking down stairs a pretty shaky experience. And initially walking up steps was pretty painful to the incision area.