What is this gap! Gap at back sinuses or sphenoid. Clear gap in bone and fluid has filled left sphenoid sinus. It won’t let me post the picture but clear gap in bone. Why did it take 20 months to get a thin slice CT.
Howdy all. My wife and co-parent has what we now know to be a CSF leak, and has essentially been bedbound since November. One of the things we became aware of was the tracking app to help in dealing with doctors, but it's only available on iphones, which neither of us has.
Instead of waiting, I decided to make one for her, and she's running it now. This isn't meant as a promotion (I don't even know how to make it available on the app store), I just want to see if his is something that might help fellow non-apple folk.
At the moment it tracks symptoms, treatments, medications (both daily and one-offs) and tasks completed (daily wins help her feel like she's accomplished things), and can export everything onto a graph that one can forward to a medical professional.
If you use android, is this something that would be useful? Any suggestions for features you might want?
For the last year I had have all the symptoms of a spinal leak. It was so bad that I was starting to become bed ridden. Headaches, needing to pass out, heavy eyes, fast heart rate and feeling awful. Went to the ER and had a cat scan. They didnt see anything. Well 8 days ago I got food poisoning and threw up with such force that I felt a sharp pop in the upper part of my back. I suddenly felt numb from my chest up and had severe pain for 5 minutes. It then went away and just felt sore. Well the next morning I felt oddly good. Well here it is 8 days later I still feel good. I havent had one symptom at all other then my left shoulder and neck is really sore. I havent started any new meds to change anything. The last 3 days I have been in situations that usually put me on my ass but I felt fine. Im so confused.
Hi!
What essentials did you use after your spinal blood patch while you recovered? Links are super appreciated! What items did you buy but then find unnecessary? I have a suspected sacral CSF leak.
I will have family assistance for the first 5 days, but after that I may be on my own to go about life haha (no roommates).
Tips for grocery shopping as well for the first 3 months after the lay flat period? Lots of bags with only a few items in each bag? I was thinking of storing a folding wagon in my apartment and taking it to my car to transport the groceries inside. Going to buy some slip-on shoes, but worried about putting on socks!
It seems like it could be very hard to be on my own and avoid all the things I’m supposed to avoid (bending to put away dishes, doing laundry, etc).
Thanks so much!
…just to hear of peoples’ experiences with this. I’m trying to figure out if I’m pressure-instable or what’s going on.
I’ve had slow but steady improvement after a blood patch 15 weeks ago, but a few days ago I suddenly felt a new kind of pressure in my nose and forehead while seated in a hot shower (hot showers usually make me feel a bit better). It got worse when I lay down, so stayed up for a while. Eventually (I did try some dandelion tea) I could lie down to sleep with a high pillow. Next day I couldn’t take what’s in recent weeks has been my daily walk (and I’ve felt good walking too) without that head pressure returning and increasing. It came on too when I read aloud for my child… It’s joined by a hard-to-define hollowness in both ears (different from my previous ear fullness or ear chills). It comes and goes, like two days ago I couldn’t determine if up or down or half-way reclined was better and I ended up just vomiting and hurting and miserable. After that my regular ear fullness was back with a vengeance the next time I was up, but the new pressure returned later. When it’s there, it builds up over a few minutes when I lie down, or when I try to walk, but after my walk I can feel it sort-of lessening if I stay up, and when it’s been there in the evening and I’ve started the night sleeping on an incline, I’ve been able to switch to fully flat later during the night… my usual low-pressure symptoms have been decreasing over weeks but they’re not fully gone yet, just milder and less constant. But I feel like I’ve taken a turn for the worse - why can’t I enjoy my walks all of a sudden? - and I can’t tell why.
Hello everyone!
I had to have a blood patch done after I delivered my baby due to a mistake made while attempting to place an epidural (they ended up having to do a spinal catheter for the remainder of my labor). While I was in labor, I was in severe pain in my head, neck and shoulders. While they were doing the blood patch I had extreme pain in my head.. which I was told was normal. It’s now day 4 and I am still in a lot of pain. My neck is super stiff and painful. I was only told to take Tylenol and Motrin and apply heat as needed. These only help to a certain extent and I still have some type of pain and stiffness. Is this normal? What else can I do to help alleviate it?
I have 2 kids (ages 4 and 2) and a newborn and even though my husband has been a huge help I will need to be better by next week due to him only being able to take off for about a week.
I had a Lumbar puncture in emergency 4days ago. No complication happened during the procedure and I was told to stay laying down for 2 hours afterwards. Doctors downplayed recovery a lot and said after laying down for 2 hours I would be fine. I did this and then sat up for the remaining time . I was on heavy pain killers and nerve blockers so at the time was feeling fine. Was also given a lot of nurofen. Since coming home on day 3 I started to feel super nauseous and blurry vision when standing . Only thing that would help would be laying down. Since then On Day 4 , vision and nausea got better. Although know I feel like I have a headache a slight blurriness when standing. Whenever I stand or sit I have blocked ears , and can hear myself breathing a talking, I do have a slight headache but it’s not as bad as my ears . Only Any recommendations or suggestions on what to do.
Did this happen to anyone else? Finally food tasted good again and I was ravenous. I gained a couple pounds. Before , i was so sick I was just eating toddler food like squeezable yogurt and rice crackers. Now I have a HUGE appetite. I haven’t had an appetite like this since I was a teenager !
Getting a second blood patch next week cause all the symptoms didn’t go away yet
Abstract Objective: To determine the frequency of multiple spinal CSF leaks in a recent group of patients with spontaneous intracranial hypotension (SIH) who were investigated with digital subtraction myelography (DSM).
Methods: This observational study was conducted using data from a prospectively maintained data base of patients who meet the International Classification of Headache Disorders, third edition, criteria for SIH. The patient population consisted of a consecutive group of 745 patients with SIH who underwent DSM between March 2009 and February 2020. Based on the results of DSM, participants were classified according to the type and number of spinal CSF leaks.
Results: Among 398 patients with SIH and extradural CSF on spinal imaging, multiplicity of CSF leaks was observed in none of 291 patients with type 1a ventral leaks and in 4 (6.2%) of 65 patients with type 1b (postero-) lateral leaks. Among 97 patients with SIH from spinal CSF-venous fistulas (type 3 leaks) who did not have extradural CSF on spinal imaging, 9 patients (9.3%) had multiple fistulas (p < 0.0001 for comparison between groups). Type 3 and type 1a or 1b CSF leaks coexisted in an additional 5 patients.
Conclusions: Among patients with SIH, multiplicity of CSF leaks was observed radiographically in none of the patients with ventral leaks, in 6% of patients with lateral leaks, and in 9% of patients with CSF-venous fistulas. These results suggest that patients with SIH can be reassured that the occurrence of multiple CSF leaks is negligible to uncommon at most, depending on the type of CSF leak.
Full text at link
I’ve already had four. Looking at the fifth very soon.
I am absolutely certain I have a csf leak in my cervical spine but I am not scheduled for an mri until the 1st, and then won't see the doctor until the 12th. Since a tilt test almost 2 weeks ago I have had an unbearable nauseating headache when upright, it took less than 10 minutes to set in yesterday. Going another few weeks like this before even beginning to talk about fixing it makes me sick thinking about it. Is it worth going to the er and trying to get an mri there and treated faster?
I'm sure I can prove it based on only having orthostatic hypotension when initially standing. This is caused by blood flowing to the vessels in the brain to take up the space that is no longer occupied by the csf. This is also why the headache doesn't go away without being supine for hours. It's much easier for the blood to occupy space in the vessels than it is to refill the csf.
I'm worried about sounding like a crazy person going into the er and telling them what to do or getting them to take me seriously.
Update: no dice, ct fine, can't do mri through the er.
Hi there, if Adhesive arachnoiditis is suspected, would a blood patch for a potential leak just cause more damage? I’m worried to make my situation worse but also don’t want to risk leaving a leak untreated if there is one.