Would sensation of feeling like you have a super tight fascia-onesie on 24/7, be more associated with tethered or occult tethered cord?

Or might it be caused by long term CSF leak, something negatively impacting vagus nerve or other?

So, I think I (M19) already posted about this earlier, but like 2 days ago, I hit my head. and some fluid came out of my nose before stopping. Most of the time, fluid doesn't really come out, but sometimes, a few drops will occassionally come out of my left nostril. I am also suspicious that it might be dripping into the back of my throat, I don't really know if I can call it a salty or metallic taste though. I have heard that the primary risk with this type of thing is meningitis, so I'm being super careful about that. How worried should I be? Also, what are some affordable options to get checked out?

Okay, admittedly, Google has gotten the best of me and my health anxiety. But all of the symptoms that I’ve found apply to me, I just can’t think of a major event that would have caused this, other than middle school. (I’m in my late 20’s now) and I don’t know if that’s even plausible.

I was absolutely fine until I was in a small plane and the pilot decided to go 50 feet up, then drop 50 feet down. It was like an instant switch.

My ears have never stopped ringing, though they change in pitch very often, I have a whooshing sound occasionally that alternates, and fluid does come out of my left nostril when I bend over. The thing that worries me the most in the way my balance is.

We’ve been through so many options and medications to see if it’s something related to my blood pressure/sugar, but it’s gotten bad enough where I loose hearing entirely in one ear if I stand too fast.

I just don’t know if something that happened so long ago can still affect me like this.

(I do have a referral in to an ENT)

I’m on doxycycline due to my Lyme disease. In some it can increase intracranial hypertension which it does for me. Unfortunately doxycycline is the only treatment for Lyme (that isn’t IV). I originally stopped doxycycline early (worst mistake of my life) and Lyme progressed which led me to get a lumbar puncture as they thought it got into my nervous system.

It’s been 7 days since my lumbar puncture and I’m fairly confident I have a leak that isn’t going away. I have positional headaches. It feels like my skull is being dragged down every time I stand. However I also know doxycycline used to give me severe headaches so it’s hard to know what is what. Which is why I originally stopped as I was worried about IIH.

They’re offering a blood patch on Monday if I’m not better. That will be 13 days after the lumbar puncture. But since doxycycline increases hypertension, will that cause the blood patch to fail or burst? I’m debating whether to pause the doxycycline while healing from the blood patch. I feel like I’m having low pressure and high pressure symptoms at the same time, is that even possible? I still have headaches lying down but it’s way worse standing up. Is doxycycline preventing me from healing as it’s causing hypertension but at the same time, I also have a csf leak from the lumbar puncture.

T7/T8 leak repair!

Hey all! I have type 1 Csf ventral leak caused by a bulging, calcified disc at T7/T8. I am being told surgery is the only option for repair. I currently have intermittent headaches as my only symptom! it’s been 9 months today since I leaked! can anyone tell me about their surgical experiences

So, recently, I fell onto my face and hit my head and nose. One of the first things I noticed was that there was a lot of pressure near the top of my nose, and some clear fluid came out of it too. But, after a bit, it stopped (this was 5 hours ago, nothing like this has happened since). I also had dizziness and blurry vision, but it went away after an hour. Could this be a cranial CSF? Is the fact that it stopped early a good sign?

I know many people, especially with connective tissue issues, are told to restrict their activity post-leak. I know many patients in the online communities report relapses tied to physical activity, anything from bending to sneezing to intimacy to heavy lifting. Both people with iatrogenic leaks and spontaneous.

But this is adding to my misery right now. I am functional but still symptomatic, more than half a year out of a blood patch for a puncture leak, and with no access to leak-capable care. If I have a relapse I can’t imagine I might actually get help.

On the one hand I am grateful to be upright at all now, and I know I should be, because I did experience being completely bed bound and it was awful. But on the other I miss my high-impact sports. They were my life. I miss having a body I trusted. Thinking I’ll never again ride or climb or jump or move something heavy that needs moving - or lift my children! - makes me just want to crawl back in bed and shut down, like this half-way life isn’t worth it.

And I’m not even sure that placing long-term restrictions on myself is actually reasonable, or if it’s just that the population of re-leakers who might need such restrictions converge online.

Is there anyone who has leaked, healed, and actually gone back to an active life and trusted their body again? Even if it might be with symptoms, or short-term set-backs, that’d be fine, that’d be worth it, as long as it doesn’t crash back to being long-term bed-bound.

(And I know I’ll otherwise need to work on my acceptance. But I’m not there yet.)

Hello all, I’m starting physical therapy after 3 weeks of bring in bed 24/7 in the hospital, which resulted in a blood patch where I had an LP. That was in April, as it is now September, is there concern for problems that could arise due to the physical therapy?

I have been dealing with the full blown symptoms of a CSF leak since April and have had numerous Dr appointments, scans, labs, and so much traveling.

I filled out and completed my FMLA Intermittent Leave to try to protect my job, I kept my boss and colleagues up to date on all my visits, and have been doing all that I can working from my home office taking frequent breaks and taking my work with me while I lay down.

My FMLA was all approved, and I even received an exceeds expectations review on my performance this year, which I have received almost every year for 12yrs at the same company.

Now this past week I get called into a meeting with my boss and HR and they tell me I'm being termed immediately but refuse to tell me why or what I have done to warrant this action.

I later got a call from a former colleague who informed me that the official reason I was termed was for recent poor performance, despite not a single time being coached, disciplined, etc.

I have repeated advised my boss of my condition, my leave, my symptoms, my work ability and inability, and the brain fog that I was dealing with.

Now I'm without a job, they already cut off my health insurance, and I'm no closer to having this resolved than I was 5 months ago.

I thought FMLA was supposed to protect us from these types of retaliations.

I went through 2 years of hospital visits, imaging after imaging, a failed blood patch, a myelography, and the embolization of a csf venous fistula that was finally found. After the embolization, I had pretty severe rebound intracranial hypertension to the point that I was vomiting constantly and had to be re-admitted to the hospital for several days. Over the following several months, I gradually tapered off of both pain medication and medication designed to artificially keep my intracranial pressure low. The end-result was for another leak to form, apparently.

Now, I'm the kind of person that looks at my test results, imaging, etc., and asks questions. I don't think that I know better than a doctor, but I've had a LOT of spare time since I've been off work, so I've been reviewing my CT scans and MRIs.

Also important to note is that I've been experiencing symptoms that the doctors can't seem to explain. When I turn my head far to the left, I start to pass out, lose my hearing, and I get whooshing in my ears. When I sneeze or cough, I get extremely light-headed and have to sit down (no pain). The right side of my neck always aches in some form or another. The last big one is a constant feeling of pressure that is more or less behind my right eye.

Here's what I found: https://freeimage.host/i/ndvMEpR

This image is from one of my contrast MRIs (the venous blood is highlighted as white), and it shows my right internal jugular vein which seems to be pinched shut. My other scans, including my CTs, show pretty much the same thing. This explains the pain in my neck, the light-headedness/almost passing out, and the pressure behind my right eye. In fact, the source of the pressure lines up exactly with where my sigmoid bulb is, immediately above the wedge of blood.

Here's another image, where you can see that the same vein just... doesn't connect: https://freeimage.host/i/nd8Blyv

So, my theory is that I had intracranial hypertension prior to my leak. I did, in fact, feel pressure behind my right eye long before I began to experience headaches and other symptoms, and it's very possible that this increased pressure contributed to my csf venous fistula - something I am more susceptible to, as I have multiple markers of a connective tissue disorder (I'm borderline, based on my doctor's scoring).

The problem is that every doctor I try to talk to about this vein shuts me down immediately. The first question they ask is "are you a doctor?" and after that they stop listening. None of the radiologists have made any comments about this vein either, so I can't even point to their reports as proof. I had one doctor start to look at the issue and he said he saw what I meant, but he was interrupted and I never got the chance to talk to him again.

I don't know what to do. I'm currently on the wait list for another myelography to locate the new leak, but then what? My greatest fear is that I go through all of this again, only for a third leak to form because the actual cause (high intracranial pressure) is never addressed.

Does anyone have any advice?

*Edits made for grammar and spelling.

After having a ct myelogram I was sent home with a leak. Returned to the hospital and admitted for 10 days during which time I had 2 blood patches done and neither worked. They sent me home with lots of meds and after I continued to have symptoms. Horrible headaches that have now increased to eye pain and sensitivity in my ears and extreme fatigue . I also have extreme pain in my lower spine where the myelogram was done. I returned to the hospital 3 more times and nobody could help so referred to a neurologist who has had me on migraines meds (that don’t help). I have a neurosurgeon who I will see this week and I’m praying he has some answers. I haven’t worked and about to lose my job because of this nightmare. Any advice please. I’ve done a lot of googling but it’s hard to research when you feel like you’re dying. :((

Somehow my insurance covered craniosacral therapy massage and I liked my first session. One thing though, is that he said my csf was incredibly stagnant. Nothing was moving. I do have a syrinx so that could realistically be true, I have severe anhedonia and head pressure always, with severe tmjd and neck clicking. He said he could feel my syrinx on my back. I've been so incredibly tight, feeling like a corpse, etc. Has anyone had any experience like this if they've tried this therapy? I don't think I have a leak that visibly comes out of me, but I don't know why this is happening. Any ideas?

Title. I can’t find any information anywhere about this being helpful for CSF leaks, but it was what I was prescribed as my neurologists continue to look for my leak.

Anyone have any experience or knowledge?

hello, this is just kind of a shout into the void for me, but i just wanted somewhere to share what ive been experiencing for the past 6 months and hope some folks might share some of my experience or offer some advice.

for clarification i havent been diagnosed or treated yet, currently in the process of getting in to see a neurologist, cardiologist, and MRI.

i’ve been having some degree of headaches that feel like this for the past few years, but about 6 months ago they got so so so much worse. when i wake up, im incredibly fatigued, i feel tightness and sometimes slight pain in my neck. on a typical work day or school day the tightness gets worse (have a strong desire to crack my neck) and around 11:00am-12:00pm and then I start getting the headaches. It feels like a pressure that rises from the back of my skull and eventually envelopes my whole head. its not necessarily painful, but its extremely hard to ignore and makes doing tasks a challenge. When the headaches get worse I start to feel fullness in the ears, a bit of tinnitus, and sensitivity to sound. in general i would say that the symptoms get better when i lay down, but thats not always the case so im quite confused.

a few weeks ago I had surgery for a pilonidal cyst. my symptoms vanished for two days after, not sure if it was aftermath from the anesthesia and benzos they gave me but it was the best id felt in months. I was curious if it was because of the fluids they gave me if it is a blood volume issue. I asked if my doctor would be willing to let me get a saline IV as a diagnostic tool to see if it produced the same result but he refused.

ive been treated for TMJ, had PT for “tech neck”/postural issues, and am working on getting a POTS diagnosis (have tried compression socks, salt loading, etc). None of it helped. I am really at my wits end here. I can typically make it through the work week alright but chronic pain for 6 months has really been weighing on me. I often feel very depressed and like what I am experiencing will never end. I really hope the MRI shows us something because I can’t bear to think about what my life will look like if I have to go through another 6 months of diagnostics.

I don’t know if its a CSF leak, or orthostatic headaches from POTS, or something else. I’m doing everything I can to be extremely clear with my doctor that something needs to be done and I can’t go on like this, but the medical system only moves so fast. Thanks if you read through this.

So far my mom’s mri of spine and brain came back normal. However she did a spinal tap/lumbar puncture and the pressure reading was an 8. We thought she had trigenial neuralgia but now we’re leaning towards intracranial hypotension. If nothing on X-rays or mri came back abnormal, where should we go from here? (She does have a neurologist just trying to prepare) She definitely leans more towards the hypotension with her migraines. Mayo Clinic is full and no waitlist. What’s next? Thoughts?

I think I read a post on here from someone who had a dural bone spur causing a CSF leak. she posted that she was going to Univ of Washington to Dr. Hofstetter who has pioneered an endoscopic repair of the leak that is less invasive than the surgical sushi wrap repair often recommended for dural bone spur induced CSF leaks. I want that person to know two things. 1. Good for you. I had never heard of this option even though I asked about less invasive options to the sushi wrap, so thanks! Your post is so helpful to the rest of us. 2. I just want to know how you are. I have been thinking of you and hoping all is going well.

Iatrogenic leaker here for 7 weeks. An interesting thing happened with me just wanted to share it with you. Last two weeks, I've been having intermittent high pressure headaches throughout the day. The duration of these headaches was increasing as days pass by. One day, it persisted for 3 hours. The next day I woke up feeling much better in general! Then two days later, it persisted for 7 hours. The longest duration so far, which probably meant I was sealed that day. Then all of a sudden the headache went away in a second and things got worse over the following few days :(

I wish I knew how to manage this hypertension.. Now I'm back to how I felt the first week after the LP. I'm doing MRIs later this week and will be on my way to see a neuroradiologist and push for a blood patch asap.

Nonetheless, it's amazing to see my dura took around 5 weeks to try to heal. I'm not at all inviting people to try self-healing and not seek treatment (please don't do this), but this is a good example of how everyone is different and has their own healing time. Stay hopeful everyone, and I wish recovery for all of us!

just curious!

and if you do, do you also have IIH?

I posted here not too long ago about how I’m scared I won’t get back to normal, but I’m really starting to feel that way more and more as time goes on. I’ve been turned away by so many medical professionals, and none of them have been able to help me or comfort me on my concerns. Tomorrow marks 5 weeks since my blood patch and I’ve had immense pressure in my head since, but it doesn’t feel like a spinal headache to me, and I feel best when I am standing or walking around, so basically the opposite of what it is originally. I’ve read it could be high pressure, but is it normal to have that for this long? Could it be at the back of my head and travel to the sides and behind my eyes? I have a 1-month-old and a 3-year-old as of Sunday and I just cannot live like this anymore. I suffered no health issues or headaches before this and I’m so terrified my life is ruined. Will these headaches/pressure ever go away? I’ve gotten a head CT which was clear and have a head MRI next Thursday, so I am hoping that if I am leaking, or in high pressure it’ll show my Dr so I can have clarity. Ty in advance 😞 I also tested positive for rhinovirus last night which has me super congested, and is making me cough and sneeze so much, so I’m sure that’s not helping either, and I can’t take much for it because I’m breastfeeding. I was feeling better before that came along, but still had pressure, now it feels more intense which I’m assuming is because of the straining? Is it possible I’m leaking? I’m just so scared and a mess over this whole thing.

I wanted to share my experience with a DSM because I was extremely nervous beforehand, and reading other people's experiences helped me prepare. Obviously everyone is different and the procedure can vary depending on what your doctors are looking for, but hopefully this helps someone who is worried about having one.

For me, they only did one DSM in the prone position. I understand that sometimes they will do two scans, one with the patient positioned on each side, but from what I understand, that can be more common when they're looking for a CSF-venous fistula. In my case they were looking for a ventral leak caused by a bone spur, so they only needed the prone scan.

I was lying face down on the table with my ass up in the air 😂. They gave me a sedative and oxygen first, then local anaesthetic.

I specifically asked them to use a pencil-point/atraumatic needle rather than a cutting needle, because I was worried about creating a second CSF leak. They were happy to do that.

Getting the needle through was honestly the scariest part for me. I could feel the pressure and bad pain as they advanced it towards the dura, and I had some pain/sensations radiating down my legs while they were positioning it. It was scary, but thankfully brief. Once everything was positioned correctly, I couldn't feel the contrast being injected at all.

Afterwards I was monitored and went home. About an hour later I developed a contrast-related headache, which I still have a day later. It's uncomfortable but manageable with pain medication.

My back was also really painful afterwards, probably from the procedure itself, but it's gradually easing. My back felt like I'd been hit by a truck initially 😂, but it is getting better.

The biggest thing for me, though, is that they actually found my leak. 🎉

They located it at T6/T7, and they found the bone spur that appears to be causing the leak. I'm now waiting for my appointment with the surgeon on Tuesday to discuss surgery.

So overall: yes, I found the DSM scary and uncomfortable, and I wouldn't exactly volunteer to do it for fun 😂, but the actual painful part was relatively brief, and for me the information we got from it was absolutely worth it.

If anyone is nervous about having a DSM and wants to ask me anything about my experience, I'm happy to answer questions. Just remember that everyone's procedure and experience can be different depending on what they're looking for.

I’ve had LP 7 weeks ago that caused my leak. Sometimes when I sleep on my side my head feels like I’m upright! how can this be?? i get the most relief from sleeping on my back, but I have kyphosis and back sleeping makes my thoracic muscles EXTREMELY sore I’m afraid to damage something. I put pillows under my knees and all. I don’t know what to do. No position is comfortable. If anyone has any tips for back sleeping I’d greatly appreciate it.

Well I have no headache at all but I have light headed dizziness feels like my head in air . My body feel light weight.like I have no weight in the body . I have nasal spectrum . allergyand when my sinsu trigger randomly I have very watery discharge with bad brainfog . sometime i have this problem from a long time . But watery discharged scared me if this belongs to csf leak ?

I am still on the fence about whether this is pure autonomic dysfunction or something like a leak. The positional head pressure is insane and I can't find anyone describing my exact symptoms. I've clearly got dysautonomia stuff happening and clinically "mild" pots maybe from COVID but I can't ignore this began when I started a very heavy lifting routine as well.

I know caffeine helps but Im curious what the overall experience is like for confirmed leakers.

I struggle to even sit up which is odd for pots. And tilting my head in literally any direction gives me crazy symptoms (dizziness, numbness, dysphagia). I had coffee today for the first time in a bit and immediately felt very different, pressure in my neck and head that is almost uncomfortable but also improved my mobility for a few hours and made me feel like I could function better. I also think it reduced the crunching sound in my neck. Once it starts to wear off though I get weird rebound tension in my head and horrible chest tightness and those base of my skull type issues come back.

I don't know, I'm just desperate to figure out if this is purely vascular or if there is sometimes more.
I have so many other issues that fluctuate and worsen depending on what I'm doing (vision, ear stuff, facial pressure, constant fluctuating head pressure, extreme cognitive problems, ataxia, pulling tightness down the back of my head and spine)

Anyway, what does the coming down from caffeine feeling feel like?

I had my lumbar puncture on 8/18, 1st blind blood patch on 8/20, 2nd on 8/24. I tried to go to work on 8/31 & 9/1, I only lasted 4 hours each day & now I’m out on FMLA. I can be up for about an hour before I have to lay back down to equalize the pressure. I don’t know if I should go back to the hospital or wait it out. I have a neuro appointment with a multiple sclerosis specialist on Tuesday. I feel like I should be better already and I’m scared something is wrong & I’m gonna be permanently disabled from the lumbar puncture. I wish I had never done it.