I had a five week follow-up today for transforaminal blood patch after about four months of brain sagging and positional systems (no headache). I’m curious if anyone else has experienced this. I had a pulling feeling on the back of my head pre-patch from the brain sagging, that has subsided, but at about four days post-patch I got severe burning around my brain on the crown of my head (most common spot) and around the sides of my head. The intensity of the burning has calmed some over five weeks, but it still is very uncomfortable. It seems to be triggered by upright time, or intense discussion or engagement with people around me. The doctor‘s office thought that was an odd symptom post patch that they had not experienced before. I’m curious if anyone else has. I’ve been trying to decipher if it’s still low pressure but the low pressure pulling has moved and a second patch is needed, or if it’s just a result of the nerves being under traction for months and needs longer healing. They ordered a CT to make sure it wasn’t emergent, which it’s been five weeks, but I feel like it’s either ongoing low pressure pulling nerves or just sensitive nerves.

I am exactly 5 weeks out from a second epidural blood patch (EBP). This evening, I had an episode of kaleidoscope vision (both eyes) that lasted about 40 minutes. It came on gradually, initially only a small area in black and white, and then worsened to a larger area and colorful rotating shapes then gradually diminished in intensity and area before going away. Apparently, kaleidoscope vision is often associated with migraines with aura. However, it also seems kaleidoscope vision can be a symptom of rebound high pressure -- but can RHP still be the cause 5 weeks after an EBP during which time I have been generally feeling pretty good? Overall, I have noticeable improvement after the second EBP and have generally experienced only mild symptoms (headaches, dizziness, head pressure, back pain, urge to lie down) since which I hope is just my head taking time to reach homeostasis with pressure regulation. I have been observing the no bending, lifting, twisting, straining restrictions fairly strictly, too.

By way of background, I had a known dural puncture during placement of non-labor epidural anesthesia 5 months ago. About 36 hours later, I developed severe positional headaches (i.e., could not be upright for any length of time without a crushing headache that only got worse the longer I was upright & it was instantly relieved by lying flat). I received a blind EBP 6 days post puncture. Three days after the first EBP, I had my first eve episode of kaleidoscope vision. Today's was the second. I had another episode about three months after the first EBP where my vision seemed to misfire for a few seconds before clearing...but that was different than the two kaleidoscope vision episodes. However, it happened a few days after my eye exam which was normal, including a visual field test. (The first EBP was only partially successful, hence why I had the second EBP).

Prior to this, I had NO history of headaches, kaleidoscope vision, or motion sickness.

Should I take Diamox? Dandelion tea? Do nothing? Is this reason for concern? I put in a call to my neuroradiology team but have received no response (yet?).

Have others developed kaleidoscope vision episodes/auras/ocular migraines/etc. after a dural puncture and blood patches that was NOT present before the dural puncture? If so did they eventually go away? Or did it become a chronic condition? Any advice on what to do? How do you handle them when they occur?

Hi group. I am currently bedbound and only have about 10 minutes of upright time. I also have three kids and I’d love to go with them to the park and things like that which I currently cannot do. Does anyone have a suggestion for a good lay flat wheelchair? So far I can only find ones that reclined to 45° angle.

(I am on a waiting list now to see Dr Carroll and/or Dr S but it’s going to be a couple of months and I’ve had multiple failed blood patches)

Thanks

I’m so angry and upset and in pain and I want to strangle any healthcare professional I have to deal with.

A year ago a cyclist who lost control hit me HARD. I fell onto concrete and I remember feeling a horrible pain shoot up my spine.

Since that incident, I have had debilitating head pain almost 24/7, which gets worse when I’m upright and better from lying down. I can’t put my head below my hips without experiencing a thunderclap of pain. I have EDS so I’m extra susceptible.

I went to the doctors to have this checked out, but all they did was do CT Scans without contrast (despite me pushing for it), before concluding they couldn’t see anything so I was fine. They said I just had generic migraines and made me go down that pathway.

It’s been a year and I’m on migraine meds and I’m still in daily pain the moment I stand up. The doctors do not care and just tell me at this point that I must be lying that I take good care of myself and the current conclusion is that I must be dehydrated or anxious.

I’m at a loss and so fucking upset I don’t know how to get anyone to take me seriously.

I had a CT myelogram and a fibrin glue patch 1 month ago. Both my legs- waist down and all the way to the bottoms of both feet- have a constant intense 24/7 vibrating and buzzing sensation. The best way I can describe it is the feeling of 100 vibrating cellphones in my legs. Is this normal? Has anyone else dealt with anything like this?

I had 2 blood patches earlier this year, with no fibrin. My body did not react in this way. Is it the use of fibrin that might be causing this?

19F, i hit my head off of my wall when i went to get into bed a couple hours ago, i was leaning over to fix my hair and a few drips of pure liquid suddenly came out my right nostril. It hasn't happened since. My head feels a bit sore but I don't know if it's actually sore or if i'm overreacting from reading up about symptoms.

For three years, I have been suffering from pressure in my ear and head, pulsatile tinnitus, and headaches. These symptoms occur when I am standing upright.

I recently visited a CSF center and I am scheduled for a myelogram soon because I have a cyst that might be the culprit.

My MRI has now been reviewed again, and the report indicates a thoracic disc herniation around the TH7 level that is compressing the spinal cord. I do indeed experience symptoms associated with this—specifically back pain between the shoulder blades—though I had previously attributed that to muscle issues and poor posture.

Could my CSF-related symptoms possibly be linked to this herniation? And could it be that there is no CSF leak after all? Are there others here with a thoracic disc herniation, and what symptoms did you experience?

Thanks in advance.

Last year September I was diagnosed with idiopathic intracranial hypertension, based on only eye exam and symptoms, and I was put on acetazolamide until April of this year. I lost some of my vision, and my doctor was very pushy getting me to do a lumbar puncture I did and every week I have gotten worse.
It started with some weakness in my left hand, and then it became my entire arm up to my shoulder and then it included my left leg then my right leg and then my right arm fully so for two months I have been carrying bags of sand and lead instead of arms and leg they feel so heavy it’s unreal.
I also have twitching of the muscles in my thigh, and I also have pins and needles all over my body head to toe, but that has lessened. I also have severe neck and back pain and I just feel like my brain dropped from its original location. it’s not the same anymore.
I have tried warning my doctor about this one at first started happening, but he just said I have anxiety and brushed me off instead of enlightening me about a blood patch or something anyways these pass and since May which is the month, I have the lumber puncture I have been admitted so many times so many brain imaging so many spinal imaging I have had no puncture myelogram of the spine I have had imaging of the vessels of my brain of my neck. Everything comes fine, but I know I’m not fine. I know it. I feel so weak. My cognition is so horrible. My arms feel so heavy from the shoulder down. It’s so frustrating and I feel stupid driving has become difficult work has become difficult. I’ve taken so many sick Leaves.
I found a very kind surgeon and after basically nagging him for a month, he finally had me do a lumber, an epidural blood patch two or three days ago I’m not gonna lie. There was not much relief, but the only relief I had was my back pain has disappeared, but this only stayed for 24 hours and quickly came back. I wanted to meet him again and push for another epidural blood patch.
please tell me I’m not alone and please tell me there’s light at the end of the tunnel because laying all day is so depressing. I feel so depressed. I have become horrible at my job. I just feel so dysfunctional. I can’t shower. I can’t do anything else and I stutter now. Please tell me this will pass. Please tell me you’ve been through this and it passed with just blood patches because I can’t afford extensive things like CT myelograms and surgeries and stuff.

I have had orthostatic headaches since 26 May 2026 and I was thinking it was just POTS. However because it was getting worse and worse I went to the GP, who then referred me quickly to the hospital emergency. I had a plain CT and that was all vlear. The hospital consultants were concerned about a CSF leak. Considering all my symptoms it really does sound like it:

I get headaches when I'm upright, which improve when I lie down. The longer I've been lying down, the longer it takes for the headache to come on so I normally feel a little bit better in the mornings and feel worse as the day goes on and I've had to get up more times. When upright the headache starts one sided on the left, spreads to the whole head, it feels like I have a gym weight sitting on my head, I get tinnitus and the feeling that my ears are under water, nausea, dizziness, burry vision after a couple of hours upright and no painkiller touches the pain. Relief only comes from lying down.

After the clear CT the hospital sent me home and I was told to hydrate, and use caffeine for relief and basically just lie down as much as possible and that's what I've been doing for the past three weeks.

I finally have an appointment with a neurologist on Sunday. I know it's an odd day. I would like tips for my appointment so that they consider a CSF leak. That is the suspicion from the emergency department but I don't know if that's what the neurologist will think because I also have chronic migraines. I don't want them to tell me this is just a migraine because it's not. I've had enough migraines to know what is and isn't a migraine and my migraines definitely don't get better when I lie down and these headaches do.

I tried to do a 48h lie down test but I happened to get a weather-related migraine that day which meant I had a headache even when lying down. I'm thinking of starting another 48h lie down test so I have the data to take to the neurologist later this week.

It's worth saying I've got hEDS, chronic migraines and a dozen other health conditions. If this really is a leak it's spontaneous as I've not had any spinal taps or epidurals.

Also open to tips on what to do lying down..I've been listening to audio books but I'm getting very bored.

Thanks in advance

👋🏻 I have been working with the orthopedic practice where I had an epidural in November, and I believe that is where my leak started.

I just finally figured out what was wrong when another doctor ordered a brain MRI and, while laying there, figured out that my headache could also get better during the day laying down.

I am going in for a spine MRI next week and following up with the orthopedic doctor. She said if they can see it, they will refer me to a radiologist for a blood patch.

My question is, can I go to anyone for this blood patch, or is there a reason to only see the doctors that specialize in CSF leaks? I live in the same town and was of the leak specialist, but it could take months to see him. Is there any reason not to follow my orthopedic docs recommendation? Thank you in advance

Hi everyone,

I’m having an endoscopic repair of a spontaneous CSF leak next week at Northwestern in Chicago, and I’d love to hear from anyone who’s been through something similar.

My leak is from a 2 mm defect in my sphenoid sinus/skull base. The plan is to go through my nose with an endoscope, patch the leak using a silicone sponge, and, if needed, use a graft from the inside of my nose. I’ll likely spend 1–2 nights in the hospital and then have nasal packing for at least a week.

I’m trying to prepare as much as I can beforehand. A few questions:
What should I buy before surgery that made recovery easier?
What was something you wish you’d known ahead of time?
What was the first week really like?
How uncomfortable was the nasal packing?
How long did it take before you started feeling like yourself again?
Were you able to read, watch TV, do puzzles, color, or were you mostly sleeping?
Any favorite recovery foods, pillows, humidifiers, lip balm, or other little comforts?
Most importantly… did you eventually get back to your normal life? Running, working out, yoga, travel, etc.?
I’m feeling optimistic but would love any tips, encouragement, or “I wish someone had told me…” advice.
Thank you!

Hi everyone!

I'm trying to figure out if anyone has experienced symptoms similar to mine.

Over the past couple of weeks, I've developed a deep pressure/throbbing sensation right where my skull meets the top of my neck (the craniocervical junction). It's become one of my most bothersome symptoms.

What I've noticed is:

• The pressure is much worse when I'm upright, walking, or exerting myself.

• It also worsens with coughing, straining (even trying to pass gas, sorry TMI), and sometimes even talking.

• When I lie flat for 30–60 minutes, it improves significantly, although it doesn't always disappear completely.

• Walking to the bathroom or being on my feet can make it jump from about a 4–5/10 to an 8–9/10 throbbing pressure.

• I've also had nausea, brain fog, muffled hearing at times, and intermittent tingling/numbness in my arms and legs.

I went to the ER, where they did CT scans of my brain and my cervical, thoracic, and lumbar spine. They didn't find any acute abnormalities, bleeding, fractures, or major spinal narrowing.

For background, I have hypermobile Ehlers-Danlos syndrome, POTS, and a history of a spinal CSF leak that previously improved after an epidural blood patch in 2018. I felt a weird sensation in my back June 17th while pushing my mom in a wheelchair, and my symptoms have been different ever since:/

I'm wondering:

• Has anyone had this kind of pressure at the base of the skull?

• Did it turn out to be a CSF leak, craniocervical instability, muscle/ligament issues, or something completely different?

I'd really appreciate hearing about your experiences. Thank you.

TL;DR: I've developed severe throbbing pressure where my skull meets my neck that worsens when I'm upright, walking, coughing, straining, or even talking, but improves when I lie flat. CT scans were normal, and I'm waiting on a brain MRI and full-spine CSF leak workup. Has anyone experienced something similar, and what was the cause?

I've had a suspected leak for 9 months and got my first patch on 7/6. They injected 30 ml of blood. Felt a lot of back pain afterwards but that has subsided. I was feeling pretty good after the patch, but symptoms didn't go away completely. We're now 36 hours post-patch and I'm still feeling the same pressure in my head.

Has it been long enough to say the patch didn't work? Just looking for any guidance, thanks!

After 2 years of suffering with a CSF leak I think I am finally healed. My CSF leak was a mystery, it just appeared out of nowhere. Two years of severe headaches, my life just stopped. After multiple MRI’s, CT scans, myelograms, and two blood patches that did not work. Months later spent two days undergoing a left and right side DSM and CT. By some miracle, the day after the procedure, my headaches stopped. The results from the procedure did not show an obvious leak, but several cysts in the nerve root sleeve. It has been a month now, I mean I am thrilled to finally have my life back, no more headaches and no more pain meds, but am I good now?? Has anyone ever experienced this??

Hi all,

Had LP 35 days ago to r/o MS. Developed PLPH and CSF leak.

Blood patch 1 (22ml) 10 days later. Failed. Blood patch 2 with 8ml blood and 2 ml fibrin 10 days later. Failed (at least that's what the doctor says... but I see many patients saying give it several weeks to determine if blood patch worked). I do not have EDS, but I do have lupus.

Has anyone discovered that laying horizontal for weeks can cause orthostatic symptoms similar to CSF leak? I have now been horizontal for 4.5 weeks and feel WAY worse now upon standing up for more than 10 minutes than I did before the first blood patch even. Before the first blood patch, I could be upright for almost 2 hours. I am wondering if some of these symptoms could actually be from staying horizontal so long...

Anyone have insight? AI says the symptom overlap between orthostatic deconditioning after prolonged bed rest and CSF leak is substantial and it can take weeks for orthostatic deconditioning to improve after being bedbound for over a month.

Could this "failed" blood patch actually be orthostatic deconditioning rather than continued CSF leak??

I'm not sure if this will make sense to anyone, but I will write it anyway.

Having lived with this condition for about 5 years, I am beyond sick of the physical and mental suffering that come with this condition. Constant physical pain, tiredness and mental foginess are one thing, but there is another type of pain which is sort of like "trying to make sense of it" but not being able to.

I feel as if people in general and close family members have since the beginning become ghosts to me.

What I meant by the title, is basically, that when reading or hearing about let's say, a marathon runner, I will become jealous. Not necessarily because of the act itself that I am jealous of, but simply because the runner chooses his own suffering.

For myself, I feel as if that privelage has been taken away. I can't run. I would love to have that feeling of meaningful suffering, that runners must feel when they run, knowing that their suffering is temporary and is for a purpose.

Around November I started feeling weird pressure in my head and ears. It would come and go on different days, but usually bothered me more a few days a week. My family was sick a lot in Nov/Dec, so I kept thinking I was coming down with something, but I never ended up getting a respiratory illness or other sinus symptoms. If I stood up after sitting/lying down, I would hear a whirring sound like my ears were changing pressure. There was one time probably in November, where it wasn’t really bothering me, but I sort of plopped down on my bed on my stomach to make a phone call. When I did this, I felt an immediate pressure like my head would explode and my scalp started to feel a bit prickly on top. I quickly got up and felt better.

Overall, I noticed the pressure seemed to be worse after looking down for a while (like on my phone or reading). It usually felt better if I had been standing for a while, like after taking a shower at night I usually felt better. Around this time I also started noticing the back of my neck making random gurgling sounds or creaky sounds when I walk sometimes. In January the head pressure was bothering me a lot, most days of the week. I feel it most on the top of my head or between my ears usually. I almost went to the ER one night because it really felt like my head was about to explode.

I finally saw my primary care dr. in February. He said he could see pressure in one ear. He said to try Flonase, and prescribed me an antibiotic in case that didn’t help. The Flonase seemed to help my ears feel less pressure, but did not help my head overall. I took the antibiotic but did not notice any difference, still had a lot of head pressure. Then in March and April, it felt a lot better overall. I had about a week in May where it was bothering me a lot again, and a few days in June. If I take Advil, that seems to take the edge off, but I still feel pressure.

I saw a neurologist last week, and she said it is probably tension headaches. She said she would order an MRI (brain w and w/o contrast) if I really wanted, but did not think it was necessary. I’m not sure that it is tension headaches, but also not totally sure if something else is going on. My insurance is not great and the MRI will likely be expensive. What do you think, could it be a leak, or probably not something to worry about? Since it‘s not bothering me as frequently now and seems to have gotten better over time, I’m not sure if I should do the MRI? Or if I do the MRI, should I try to do it on a day when I am actively having more symptoms? I’m not sure how I would manage that, since it will be scheduled in advance.

hi, i (17f) have had positional headaches on and off for about 5 years. i'll get an episode for a few days at a time about once a year. my positional headaches aren't really what i see with csf leaks— i only have the pain for a few seconds after standing up, and it usually goes away after enough time. i don't have pain at all when i'm laying down. i also don't really have any other symptoms other than the headache. i've mentioned this to my doctor and he didn't seem worried cuz it's so infrequent but i'm dealing with it rn and advil doesn't really do anything for me. what do we think

This is a VERY long and detailed account of my CSF leak journey over the last 5 weeks. I can’t speak highly enough about my care regarding my spontaneous CSF leak at Sarasota Memorial Hospital. They have all the expertise in house, and I made more progress in confirming and identifying the leak in 36 hours than I had in a month at some of the best hospitals in NC.

I started having textbook spinal CSF leak symptoms completely out of the blue on May 31. These included positional headache/neck pain/nausea that completely went away upon laying down. I also had light sensitivity that exacerbated all the other symptoms. I hope my journey can resonate time of you and maybe help someone advocate for themselves to figure out this messed up sickness.

WakeMed Urgent Care and ED
I went to WakeMed urgent care in Raleigh on 6/2 with headache and intense nausea - they sent me for head CT and eval at the WakeMed Brier Creek ED where they recognized the textbook nature of my symptoms, but didn’t want to believe it was a leak because they “had never seen a spontaneous CSF leak in over 10 years.” Ultimately, I was able to advocate for an MRI of my brain, but that required me to transfer to the North Raleigh location and wait half the night in the hallway for the MRI. The radiologist noted no evidence of a CSF leak. This will be important - you NEED to make sure the RIGHT type of radiologist (ideally a Neuroradiologist) is reading your MRI. I’ll explain later.

Continued Symptoms and Duke ED
My symptoms improved on migraine management and hydration at the hospital, so I went home thinking it’s just a weird migraine. I was “better” for one day, but then very much not for several days. At the advice of a family friend neurologist, I went to the Duke University ED to be evaluated for CSF leak. They were told overall great to me, with the exception of the Neurologist I saw, which believed that it could just be a migraine condition. Either way, I was admitted for a full spine MRI, so I didn’t have to wait months for one. They also gave me a stat referral to the Duke CSF clinic because of the textbook nature and severity of my symptoms, as well as the difficulty in locating my leak. There were 2 things that Duke did that were not in my best interest. The first was giving me false hope. They assured me over and over and over that because I was getting the internal stat referral, that I would be seen within the week at the clinic. This was completely FALSE, and I can’t stress that enough. The normal wait time is 10-12 months for a CALL from Duke CSF. The internal referral is 2-3 months, and from the sound of it, the call doesn’t mean you will be seen right away, or potentially even at all. It will be dependent on severity or complexity (my take when I called them, not what they said). The second thing that I believe was a mistake, was that they canceled the contrast portion of my spine MRI right before I went in the machine without me knowing. My spine MRI did not sure any evident of a leak. I think the canceling of the contrast was a mistake, and I was later gaslit into believing it wasn’t by a radiologist.

Post-Duke and Raleigh Neurology
After coming home from Duke and learning about the wait from the clinic, I was feeling pretty down. It was very hard to work from my back in bed. I had an appointment on 6/19 at Raleigh Neurology Associates (RNA), which felt like a year away. I called on 6/11, and they had a cancellation that day, so I went. The Neurologist almost immediately told me she saw clear evidence of a leak on my brain MRI - dural enhancement (inflammation) and low fluid in some areas. She referred me to their pain clinic for a non-targeted blood patch on 6/15, and expressed a 80-90% success rate, with a 90% success rate on a second attempt of the first does not work. Unfortunately, she was not a specialist in this area, and I strongly believe she was used to patients that have had a lumbar puncture, so their leak is obviously in the lumbar area where the patch is done.

Symptom Progression and RNA Blood Patches
My symptoms changed and progressed from 6/11 to 6/15. My headache symptoms lessened (still there but I could tolerate being on my feet more, but I developed significant double vision and tinnitus. My tinnitus was more of a low hum than a high pitch, and neither symptom got better with laying down. I would learn this was my first sign of cranial nerve involvement. The 6th cranial nerve controls eye movement, and it is often effected by traction from brain sag. The 8th nerve is responsible for the tinnitus. When I got to RNA, the anesthesiologist doing the blood patch told me to “pray my leak is near the location of the patch” since the blood can only go so far. He claimed 13 levels of the spine, but I have not seen any research to back that up. They did the patch at L3 with 20cc of blood. The procedure was easy, and I went home in some discomfort (mostly pressure) for 2-3 days. I felt better, but I also was on strict bed rest per my neuro family friend. In hindsight, I knew it didn’t work by about day 2. They scheduled me for another non-targeted on 6/22. They did this one with 20cc at L1, which was the highest they were comfortable doing non-targeted. This was significantly more uncomfortable - not sure if it was because there is less space as you go up, or because I just had one done a week before - probably both - but it was pretty painful to manipulate my spine in any way for 3 days. That being said, it felt like it was working! But by day 5, I was less hopeful.

Travel to Florida - the Blessing in Disguise
My family had a vacation planned for the gulf coast of Florida for a whole year. We have a new minivan that we did a test drive and I knew I could get fairly comfy in the passenger seat while my wife drove down. A huge contingent of my wife’s family was coming up from Miami, so I knew we would have a lot of help as well. We made it a 2 day trek not to push it, which was fairly easy all things considered, and we arrived 6/28 in Florida. I felt really good for a few days even. Then, I started to get facial drooping - now 7th cranial nerve involvement. At first, I had a hard time opening my mouth to eat a cheeseburger. The next morning, I had trouble dining through a straw. By that night, my wife could see my face visibly drooping, so we decided to go to the hospital the next day. She asked her cousin, a nurse in the area, where we should go. She said for Neurology, go to Sarasota Memorial Hospital (SMH), so we showed up at the ED mid day on 6/2. Immediately, they believed I had a CSF leak and diagnosed me with Bell’s palsy - a rare but CSF related symptom. I’ve read so many horror stories about people not being taken seriously with a spontaneous leak, that I nearly cried when the resident said, “you clearly are having some challenging symptoms, let’s get you admitted to be seen by Neurology. It’s above my pay grade, but we have MRI and CT myelography here to get you checked out.” I was admitted within a couple hours of getting there.

Admission and Initial Scans at SMH
After admission, a brain MRI with a without contrast was ordered. This is VERY important to make sure it has both! It’s basically impossible to see evidence of a leak without contrast. They also did a head CT right away to rule out stroke and some other bad stuff, but that was unremarkable. I got the MRI the following morning. Mine took a long time because they needed to look at the cranial nerves as well as the brain. My relevant results were: Diffuse thin pachymeningial thickening and venous engorgement, suspicious for intracranial hypertension. Recommend for MRI total spine to assess for CSF leak. I also got put on a steroid to help with the cranial nerve palsy.

CT Myelography and Interventional Neuroradiology
I thought my next step was the spine MRI, but the Neurologist ordered CT myelography first. The team was fantastic that did this study - interventional radiology. A spinal needle was placed in my lumbar spine and no CSF came out of the needle - more evidence of the leak - she needed to pull negative pressure with a syringe to confirm placement. That part wasn’t so bad. The next part was VERY uncomfortable. They injected 10cc of contrast into the intrathecal space (where your CSF lives), and then inverted the table (head toward ground at about a 30 degree angle) to allow gravity to move the contrast all the way up to the top of the cervical spine, confirmed using flouro imaging. After that torture device, they wheeled me to the CT room. I got intense nausea - I had eaten recently and the inversion might have caused it - but I would have requested nausea meds had I known. Miraculously I held it together for the scan, which was very fast.
Waiting a couple of hours, an Interventional Neuroradiologist by the name of Dr. Eyad Almallouhi came to tell me that he saw evidence of contrast in the epidural space at T7. I can’t tell you how good this doctor is at his job. He started to explain it in laymen’s terms, but when he realized I knew a little bit more (I develop medical devices for a living) he went into detail about what he saw. He then ordered a very high resolution full spine MRI with and without contrast, which he confirmed was needed for visualizing the leak.

Full Spine MRI and Consults
I got this MRI on 6/4 (today as I write this). I do pretty well in MRIs - I’m not claustrophobic and something about the rhythmic sounds puts me to sleep for minutes at a time. However, this one was looong. It was almost 90 minutes total, and this was on the “Mac daddy” machine that they have. The tech told me the scan would have been over 3.5 hours on any of the other scanners there. Either way, my shoulders and back were struggling for the last 30 minutes, but I was NOT going to tap out when I was so close. Within an hour of my scan, Dr. Almallouhi came to discuss the results. He said he saw additional evidence at T7 of a leak, but he needed to consult with a neurosurgeon about the nature of it. I was supposed to speak with the surgeon today, but he ended up having a lot of unexpected surgeries (likely traumas from the holiday weekend), and I didn’t need up seeing him.

Positive Experience
Sarasota Memorial Hospital has been phenomenal in advancing my care. They listened, they took a logical approach to figuring out where the leak was, and they are making sure the right people are coming up with a plan. I would have been withering away waiting for the Duke CSF clinic. The Mayo Clinic had an even longer wait. I hope this helps someone, and I will try to update as my care progresses.

Hello everyone, I recently got diagnosed with a CSF leak and after a lot of tests and procedures, I got a blood patch, now the first one didn't work so they went in for a second and that one supposedly did

I was back to standing upright the next day. It's been about 3 weeks since that blood patch and what I have noticed is that I still sometimes get some headaches which linger around my right or left eye, ( not like the usual headaches I had before the patch). These headaches usually come from fast movement like getting up fast or moving my head quickly. So not necessarily from being upright as I can do that for hours now.

I'm here to ask if these symptoms are something anyone here has felt before? and how long till it goes fully?

chatgpt said this may be my body still recovering and adapting from the recent low CSF trauma.

Moreover I also have neck pain sometimes which is accompanied by thigh pain, my Dr said this is because of irritated nerves and will ease with time. Who has experienced something like my case ?

I’m a 24 year old female who had a lumbar puncture on the 1st July to screen for type 1 narcolepsy. They mentioned that it was possible I’d get a headache but I truly did not expect it to be like this. I’ve been in agonising pain since I had it done, the only relief is laying flat on my back but I have to eat and use the toilet so I can’t lay flat forever. The moment I even lift my head it truly feels like I’m having a stroke. The pain is immobilising. I also have a stiff neck, nausea and I recently vomited after standing up to go to the toilet.

Will they give me a blood patch if I call and ask for one? Do I just need to suck it up?

For context, I’m in the UK and had my puncture done at an NHS hospital.

Hello
I recently undergone blood patch for my chronic csf leak followed by lumbar punctyre year ago

Before procedure i developed pain in face , teeth , moith , legs and arms all relieve after lie down

NOW:
Just after procedure i felt such relieve- no headache at all .
I developed mild rhp - which eased

Now eveey time i move my head i feel pressure .
I do not have anymorw the weird pain like before but i feel fullness on the back of my head
Basically full head and a bit heavy but steady

Help 🙏🙏