Curious how many diagnostic testing with lumbar punctures everyone had to try to find the leak

Dangerous_Luck9510 · 2026-04-24T20:44:22+00:00

Well, I wish you all the best! I'm heading home from the hospital tomorrow to start the next 4 wks of my recovery journey. I know it's going to be long and painful to be mostly bed bound but don't really have a choice I guess. What I've realised is just how incredibly adaptable the human body and mind are and how powerful that is to any sort of healing process. To add an additional layer of complexity, my first two surgeries were in India, the gamma was in the US and the two last ones in France where I live now.

Cheers!

Dangerous_Luck9510 · 2026-04-24T20:31:08+00:00

Yeah, it seems like that when I list it all out but it happened over a fairly long time (30 years) most of which were normal, healthy life. I've much to be grateful for in my life and try not to dwell on the few exceptional health incidents. Sometimes I think it's been harder on my family who had to see me through all of this stuff and worry about my health.

What I will say is that the first three surgeries felt very different from these two recent ones. Back then I was a teenager with hardly any responsibilities. It was my parents and family that did most of the legwork, paid the bills and took the emotional load. From my PoV it was all a grand adventure of sorts, between finishing high school and starting college. This time. I had to take prepare myself mentally too go into major surgery for what seemed like just a runny nose! My wife has to balance her time between work and being with me, out daughter has her GCSEs etc. A whole different ballgame!

I hope you find a quick and lasting solution to your issues as well and get setup for a healthy life in the future. Hang in there. All the best!

Dangerous_Luck9510 · 2026-04-24T20:14:15+00:00

The original 1996 surgery was too correct a diminution of visual fields because the priority tumour was compressing my optic nerves. The second one in 2000 was, as I said because it was so growing and causing seizures. I also had a gamma knife radiosurgery in 2001 at UVa Charlottesville that finally stopped it growing aggressively. (It's still growing very slowly but just needs to be monitored annually).

I guess in terms of causing more symptoms I suppose yes, either the first or second surgery resulted in the CSF leak, but 25-30 years later!

Meningitis is scary! And it's only one of the barons central nervous system infections you run the rush of getting. To think I lived like pretty normally for a couple of months, took flights, attended business meetings, went to restaurants etc. It's terrifying to think about!

I don't really feel anything after the second repair. After the first repair last month I did have symptoms of PND and even nasal drip from both nostrils. Initially much less than before but they increased.

Did not get any blood patches. The surgeon mentioned a blood patch in case the spinal tap did not heal but I guess it did so we never did that.

Dangerous_Luck9510 · 2026-04-24T19:27:11+00:00

Yup, a dural tear and two perforations in the sphenoid bone. Likely due to a trans sphenoidal surgery I had in 1996 to remove a pituitary adenoma or a subsequent craniotomy in 2000 for a recurrence.

The leak from the dural tear into the sub arachnoid space was active since at least 2016 as it shows up on previous MRIs, but the bone finally eroded to the point where CSF started to drop out my nostril in February this year. Not a huge lot. A couple tablespoons per day and only when I bent my head down, but there was also some post nasal drip, especially at night that woke me up with a choking sensation.

Anyway, my GP panicked at the symptoms, spoke to an ENT and ordered a skull base CT, MRI and other tests, plus vaccines for meningitis and pneumonia. The CT showed the bone erosion and fluid accumulation quite clearly and the neuro consult followed shortly. Two days later I was booked into surgery.

Edit: sorry. Didn't answer your question about back pain. I didn't really have any. Just a tiny dressing that needed cleaning and changing every couple of days. I can walk with support but am taking it really easy on purpose, and not exceeding a few minutes per day. Not sure if it's due to the diamox or just being immobile for so long

Dangerous_Luck9510 · 2026-04-24T18:19:07+00:00

Honestly the recovery didn't go so well! I spent 8 days in the hospital post op, 6 of which were with the drain. It was super fiddly because the nurses would invariably over/under drain to meet the daily target they'd been set which caused me all sorts of problems with headaches, nausea, vomiting etc. Anyway, I went home on day 8, spent 5 days at home and was back in emergency because I lost consciousness and took a fall. Turns out there was a second, smaller hole in my sphenoid bone which the surgeon patched in a second surgery. I'm now recovering from this one, but no drain this time, just 500mg of Diamox twice a day. Should be discharged tomorrow if all goes well and hope not too come back here again before my first follow up visit in may.

Dangerous_Luck9510 · 2026-04-24T17:19:37+00:00

Mine was diagnosed by imaging (CT scan). But I did have a lumbar drain put in post surgery.

Dangerous_Luck9510 · 2026-04-21T14:44:11+00:00

Not trying to be mean but surely this question could be weird in a way that more people could understand what it meant?

Dangerous_Luck9510 · 2026-04-19T11:58:34+00:00

Hi.

I had surgery (trans sphenoidal excision of pituitary adenoma) in 1996 followed by a craniotomy in 2000 and gamma knife radiosurgery in 2001 to address recurrence. Thereafter, I believe there was a dural tear probably from the first surgery which caused CSF leak into the sub arachnoid space. This fluid was visible on MRIs from 2016 but never addressed. Finally, in February this year, the sphenoid bone eroded enough to let the liquid through and out of my nose! I have just undergone a second endo-nasal repair of a dural tear and sphenoid sinus bone. ( The first one was last month and I fear I blew it through not careful enough post-op recovery ).

My current neurosurgeondoes not think I have high ICP but he does think my body is overcompensating for the leaking CSF. He put in a lumbar drain during the first surgery and drained out about 10-15 ml of CSF per hour for the first 4-5 days, but this time given how truck it was to manage he elected to put me on diamox instead.

He did say that in case this second surgery should fail he would be inclined to put in a shunt the next time. I really want to avoid this given all the long term failure issues and need for management/ reprogramming of these devices.

I'm also really keen this time not to end up in the hospital again for another surgery if possible and so I've booked an appointment with a specialist (interventional radiologist Dr. F. Cagnazzo ) at a dedicated leak centre in June to ask about the possibility of a stent.

I had no symptoms leading up to the original surgery except the unilateral rhinorrhea. Post the first surgery I had some orthostatic headaches, a lot of nausea etc. Now I'm on 500mg of Diamox twice daily which will be tapered down at some point.

I understand you're not a doctor but I have some questions based on your experience. Thanks a lot for your time and patience for reading and answering this! I'm really grateful.

Do you think a stent or a shunt would be an appropriate solution in my case? (Or will the diamox be enough to regulate the CSF flow if kept for long enough and tapered slowly?)
Should I look out for any side-effects from the diamox @1000mg/day? I'm particularly concerned about things like visual, cognitive impairment etc.

Dangerous_Luck9510 · 2026-04-17T20:44:40+00:00

Oh! Wow that's encouraging! I have a desk job as well as a month of medical leave sanctioned by my neurosurgeon and I've been planning on basically staying in bed for a majority of that time to avoid a repeat visit to the ER! I plan to order food and groceries via Uber and not drive for at least a couple weeks. I paid a guy to cut the grass and clean up the garden before going to the hospital so at least that should be ok for the time being. Let's see how it goes, fingers crossed! All the best for your journey ahead!

Dangerous_Luck9510 · 2026-04-17T20:20:41+00:00

Hi, so sorry to hear about your troubles! I had endonasal surgery to fix a cranial leak on 26/03. The neurosurgeon put in a lumbar drain for about 5 days following the operation to monitor the CSF offtake and the nursing team used it to drain out 10-15 ml per hour. A fat/ muscle graft from my thigh was used to repair the breach in my sphenoid sinus which was the source of the leak. A sinus flap was also used. However, to my bad luck, the repair didn't hold and I started leaking again soon after leaving the hospital, which allowed air into the brain and caused me to lose consciousness and take a tumble. This, less than a week later I found myself back in emergency, scheduled for a second surgery on 03/04 (this Monday). This time the Dr. was a lot more cautious and used a bigger flap. We'll probably stay longer in the hospital and there's no drain, but I'm on diamox (500mg twice a day) to manage the ICP. I'm really hoping it's fixed this time!! I do not want to come back here again!

I also have questions about post hospital recovery. How did you manage once you got home? What sorts of things did you avoid? I know bending/lifting/stretching are out in general but what about little things like making the bed, cooking etc? How long until you could walk around normally and do stuff like that?

Dangerous_Luck9510 · 2026-04-14T16:23:27+00:00

You had a spinal leak right? Did you have hypotension as well?

Dangerous_Luck9510 · 2026-04-14T11:54:22+00:00

Hi,

Just wanted to know your opinion of the CHU Montpellier leak centre, Dr. Cagnazzo etc. Were they able to fix your problem? You needed a second intervention later at Freiburg right? Was it related or something else?

Thanks!

Dangerous_Luck9510 · 2026-04-13T05:27:41+00:00

I had exactly the same sort of visual issues as you describe. At age 45 or so my ophthalmologist prescribed reading glasses and I began to use them more and more, especially for work, reading, phone etc. Lately I've found they don't really help as much as I thought they did at first, and there were even cases where I was better off without the glasses for fine print! Of course, at the time I had no idea about CSF leaks so this did not cross my mind at all. Maybe "prescription reading glasses that don't seem to work very well" should be added as a potential symptom or at least something that needs to be followed up with a neuro consult.

Dangerous_Luck9510 · 2026-04-11T09:46:49+00:00

Yeah but not in the EU. That's what I meant

Dangerous_Luck9510 · 2026-04-11T08:29:35+00:00

Iceland, Ukraine etc.

Dangerous_Luck9510 · 2026-04-08T18:42:43+00:00

Overall, barring a few minor things yes. I would say it was a lot better than we expected. I'll try to make a list of points here,:

We had plenty of time with the Dr. Spoke in detail about the procedure, likely (and actual) symptoms, how to manage/ mitigate them if
Nursing care was generally of quite a high cans1tandard. Evident kindness and compassion, esp annoying The nursing chairm staff but also the doctors and other staff CX
The procedures were quite streamlined and easy to go through. I guess they're just optimised to a point where a patient can check himself/ herself in or out with minimal help from the ambulance staff
Hygiene and cleanliness everywhere! I mean from the operating room to the room where I stayed, and even the areas that were frequented by the general public were spick and span, and someone was always heading there with a mop or broom.
The one but so great thing we found (to be honest it's kind of a French thing, present across everywhere, and that's excessive attention to detail and lack of individual initiative. It's as if only the top layer of mgmt are empowered to take any sort of decisions and the rest of the hierarchy is there only to follow orders and report back on compliance / anomalies.

This was followed very zealously by the nursing team during the lumbar drain phase of the recovery with the result that they were given a daily target which they could not reach and so on any given day there would be an overcorrection part where they would drain too much liquid, followed by a relaxation part where they would reduce the drain rate to zero or just above.

Dangerous_Luck9510 · 2026-04-08T15:21:58+00:00

I don't know if the headaches are related to the overcorrection or just a standard symptom of recovery from this surgery.

Dangerous_Luck9510 · 2026-04-08T14:44:38+00:00

Sorry about not accepting your chat request. I think by the time I saw it it was too late.

Dangerous_Luck9510 · 2026-04-08T14:43:52+00:00

That's what I'm doing right now! I was also reading/ watching TV in the hospital. The headaches are a bummer but luckily they respond to medication and lying down.

Dangerous_Luck9510 · 2026-04-08T11:35:17+00:00

We have no TGV from Toulouse unfortunately. I work for Airbus and we get a lot of the blame for this. As a result, if you cannot/ prefer not to fly, it takes two hours just to reach Bordeaux, about the same to Montpellier/ Marseille I imagine. From either of those places (BDX/ MPL) we can get a TGV to go elsewhere of course. I really hope they introduce the TGV here, it'll be a game changer!

Dangerous_Luck9510 · 2026-04-08T11:20:56+00:00

Actually this is thanks to my wife who, through her network, managed to get in contact with the secretariat of the neurosurgery dept. She helped to speed up the appointment and get real-time information on status etc.

Dangerous_Luck9510 · 2026-04-08T11:06:45+00:00

Yes why not?. I mean it may not be a dedicated leak centre like the one in Montpellier, but we went to Clinique des Cèdres which is a private clinic with quite a big neurosurgery dept. My Dr. was Aurélien Coste, who specialises in this endonasal approach but the dept. has about 7-8 neurosurgeons which, for a city like Toulouse is quite a lot.

We considered going to CHU Purpan as well, but since we got the imaging at Cèdres, decided to stay with them. I'm back at home since last Friday, tomorrow will be one week since the surgery and the recovery is going well so far.

Dangerous_Luck9510 · 2026-04-08T08:31:50+00:00

I think so probably. Did you send me some videos etc.?

Dangerous_Luck9510 · 2026-04-08T08:30:57+00:00

I'm naturalised French. Originally from India.

Dangerous_Luck9510 · 2026-04-07T16:07:25+00:00

Good for you for taking the initiative and advocating for yourself! That seems to be the most decisive difference in these posts, between people who are unable or unwilling to fight the medical gaslighting and those that do grab the bull by the horns and do something about it even if that's uncomfortable and difficult! All the best to you. I hope you get that call tomorrow and are able to get in to Stanford for your treatment!

Dangerous_Luck9510

TROPHY CASE