Years of Searching for Spinal Leak
Hey guys. I've posted here before and promised to come back with an update. Here's the letter I just sent to all the doctors (about 15) I've seen in the last year. I'm posting this to encourage everyone who is inspired and struggling so there is hope and please don't give up! "Years of searching for a diagnosis - Spontaneous Spontaneous Leakage?" This letter is addressed to my neurologist, but is intended to update all doctors who have tried to discover my diagnosis. All the doctors who have treated me in the last year are interested in an update. Please forward this to the doctor marked CC at the end of this document and place a copy in my file at your clinic. If you think this might be useful in future diagnoses, please let radiologists and neuroradiologists who are reading your patients' scans know. Hello Dr. from the Duke University Spinal Leakage Treatment Center. Since this provider is not networked with my insurance company, that's saying something! Many doctors from different specialties have tried to help me and I don't want to minimize their contribution and support, so I am copying all of them in this letter to thank them and recognize their efforts. Here is an update from October 2021: Brief summary of my symptoms: Oct 7, 2021 - Oct 28, 2022 - After a 10 hour drive (not driving) Severe onset of a debilitating positional headache starting at the base of the skull and radiating to the head and behind the eyes, extreme pressure in the ears, severe tinnitus, hearing loss, vision loss, sensitivity to light, dizziness, lightheadedness, nausea, neck and shoulder pain/burning with a constant "pull" (the brain felt like it was going to be pulled down on my shoulders), heavy head - when upright, head feels like it weighs 50 pounds, bad taste in mouth literally melting licorice, biscuits in liquid, vomiting, ear throbbing before bed and lastly , but not least, cognitive problems. Bedridden for the first 2 months with these symptoms and the last year without work - no walking or sitting for more than a few hours, no driving and long naps. He was diagnosed with migraine after 2 visits to the emergency room and 3 days of hospitalization. The second diagnosis 3 weeks after the onset of illness was Cervicalgia and Occipital Neuralgia. Lying down was the only thing that relieved the headache - all other problems remained. Prescription and over-the-counter medications to treat my symptoms: Advil/Duexis/Tylenol/Tizanidin/Tramadol/Divalproex/Meclizine/Promethazine/Prochlorperzine/*Butalbital-Acetamn-Caff *Note: I am not someone who takes medication for anything, and even though i was treated like a drug addict by every hospital i only took these meds for no more than 3-5 days as they didn't help and just kept me sleeping in bed. * This medication (Butalbital-Acetamn-Caff*) helped with the headaches and I was worried about taking too much of each medication so I only took it for severe headaches. Since I was taking this drug regularly, it's important to note that the Johns Hopkins spine department wouldn't let me join the program! myelogram plus biopsies) and visits from 10 different doctors from Virginia and Florida (3 different neurologists, 3 radiologists, 2 anesthesiologists and 2 neurosurgeons) I was accepted into the spinal leak program at Duke University, NC and accepted through insurance. On October 31, 2022, Duke doctors performed a myelogram and found the spinal leak in the T9 nerve root area and promptly repaired it with a targeted patch of blood mixed with fibrin glue! I am 3 months after the procedure on January 30, 2023. There is severe limitation, no bending, lifting or twisting, but at least I am not bedridden! While not 100% better, I have high hopes that within 6 months my ringing in the ears and various pressure symptoms have completely resolved. My headache is almost gone! Note to neurologist: -Prior to visiting Duke, they told me that although they believe I do NOT have a spinal leak, based on the MRI it shows NO brain sac/drop…. They would take me in and do a myelogram since I didn't have a myelogram in Virginia. If you remember my story, you ordered a myelogram at a facility in Virginia, but the neuroradiologist who was scheduled to perform it called on the day the procedure was scheduled and canceled the appointment because he had evidence of it in my previous MRIs. He didn't want to put me through any other procedures. The problem was that although I saw evidence of the spinal leak, I couldn't pinpoint the exact location. He recommended a blind blood patch to seal the leak. I had 2 blind spots that didn't work. While the doctors who performed the blind blood patches weren't thrilled with the idea of an untargeted blood patch (I wasn't thrilled either, but I was eager to try something), I'm thrilled that the experienced team at Duke performed the myelogram. The MRI showing NO flaccidity is not necessarily the only reason to reject a spontaneous diagnosis of spinal leak because of a debilitating headache. I had all the other symptoms of a spinal leak but no brain sacs... just thought I'd let you know that this might help diagnose other patients. I will have Duke University send my records to your office so you can update them. Thank you again and team for all your help and patience in listening to me and welcoming me to the Duke.
4 Comments - Posted on February 22nd
What can be done to relieve pressure behind the ears and sinuses?
More than the headache, I am constantly tormented by sensations of pressure and pulling behind the ears and sinuses. Does anyone have anything that works for you to alleviate this a bit? It drives me crazy and keeps me from sleeping.
1 Comments - Posted on June 15th
I'm really lost
Some of you may be familiar with my story, but for those of you who aren't, I'm a 28 year old male who developed a leak through a lumbar puncture on August 22nd of this year. On 26.8. patched up (normal blood smear, volume uncertain) and has had a wild ride ever since. I hope someone can shed some light on what is still going on for me as I am now 14 weeks post patch and dealing with so many weird feelings and sensations. At this point, my headaches are no longer my main problem. It's still there, but if it were alone, life would be manageable. My main symptoms now are mostly neurological in nature.1. Random tingling in the feet, back and legs that comes and goes.2. Tingling and tingling mainly in the right foot. Come and go. My foot seems to sleep while driving or sitting at a faster pace than one would expect.3. I get random injections (almost like nerve pain) throughout the day. Again mainly in the feet, legs and back, but I also experience prolonged pain in my hands and especially in the fingers under the nail. You can come and go or stay for a few minutes and no two feel exactly alike.4. Over the past few weeks, I've randomly started having these "gag attacks". I'm not really nauseous, I'm just starting to get this feeling like I'm gagging and sometimes doing. I even dried myself a few times.5. My headaches are very different from before and have changed even more in the last few weeks. It was my most noticeable symptom until recently, but when these other things started to come to the fore, it took a backseat. I still suffer from multiple cranial neuropathies every day and I have noticed that my headaches can get very intense out of nowhere. For example, if I'm awake and lying in bed in a certain way, it can happen in different places and with different intensities when I change positions. It's really hard to set down.6. When I lie down, I feel several twitches in my legs and almost like muscle spasms? I must say that I can stay on my feet all day. I usually get tired and get back and joint pain if I stand in one place too long, but my symptoms don't really have much of a positional aspect at this point. Everything seems so random and confusing. I had an MRI of the skull without contrast and an MRI of the low lumbar spine with contrast, all normal. I also have an MRI with contrast scheduled in two weeks. My doctors have no idea what's going on. Also of note is that I am addicted to opioids and abused them throughout the process. I know it probably doesn't help, but it's the only thing that gives me the breaks I need mentally to forget what I'm going through and get things done. I think I've been on high pressure for at least a while after my patch and if I leak I think it's probably a small slow leak but that's why I'm here. Any insight into what's going on and what I should do about it is more than appreciated.
8 Comments - Posted on Dec 07
Canadians at RIH after a blood draw
Hello everyone, I'm Canadian and I live in the province of Ontario. I had a lumbar puncture from 4 failed epidurals in April. I gave birth on April 3rd and got a spot of blood on the 6th. My symptoms before the blood plug were bradycardia, terrible headache that got better when lying down, dizziness, nausea, tinnitus and photophobia. On day 7 I was back in the hospital in excruciating pain, this time very different from before the patch. They wanted to give me another plaster, but I refused. I had an MRI that showed narrowing of the right transverse sinus, but the neurologist said it was normal and that I should have another EBP. I was discharged on caffeine and oxy pills and told to drink lots of water. I went home and followed these instructions and a few days later my symptoms got worse. My symptoms after the patch were severe frontal headaches when lying down, jaw pain, toothache, pain in my eyes... mainly in my left eye, numbness in my face and pressure build up in my head. This time I was again at a different hospital and they managed to diagnose me with RIH. I was sent home with a prescription for Lyrica. I'm a breastfeeding mom and this whole thing is bringing me down. Two weeks ago, I started experiencing severe pain on the left side of my neck, which is unbearable. I read on the internet that dandelion tea helps with blood pressure, but since I'm breastfeeding I haven't tried it. I went through a high risk pregnancy where I was bedridden for 9 months to have this miracle baby and it's a shame I can't do anything with her. The pain makes me so moody and I'm so down. I did not take Lyrica because of breastfeeding. My biggest problem is nerve pain in my throat, eyes and teeth. Does anyone else have this? How long does it take to fade or disappear?
4 Comments - Posted on May 21st
Neck pain after CSF leak
Hi, I'm new, I thought I'd share my experience with other leakers. 2017 started with a headache. So I had an MRI scan which showed nothing so they blamed it on stress. A few months later I went to the chiropractor (I thought it was a pinched nerve causing the headache) and she said "could be a CSF leak, ask for an MRI with contrast". After that MRI appointment, I was told, "Go to an emergency room." I had a subdural hematoma and spent the next five days in intensive care. The neurologist said that if I hadn't gone to the emergency room, I would have gone into a coma. Not the typical coma, but the one where the body goes into a coma, then comes out, then comes back. I made the bloodstain. Doctors said it was the largest amount of blood they had injected in their career. Today I live with neck pain depending on what I do. Here are some of my symptoms if anyone can relate. 1) The headache was only when I was standing. As soon as I lay down, they were gone (my brain gave out and the pressure caused a dull pain. When I lay down, your brain floats ... the pain disappears)2) my sleep increased to 16 hours a day3) I drove to work , I had mini blackouts that lasted for seconds. Ever feel tired behind the wheel, your eyes are wide open but you can't concentrate? I think that was the start of my coma. Unfortunately, there are no answers on how to go on living after a bloodstain. It can happen again! What's frustrating is when you tell your doctor he's just looking out for you. Is it correct to assume that most doctors are not familiar with this? My advice, don't give up, stick with the doctors, keep asking questions, find another doctor. Today I got back into golf and started doing resistance bands, but I will always have some kind of neck pain. Thank's for your time
6 Comments - Posted on June 1st
Does this sound like a CSF leak in the spinal cord? POTS
Hi everyone, 2 years ago I was driving around and I felt dizzy and felt like I was going to pass out. Later that night I felt very strange and had strange shooting pains in my leg. I went to the emergency room and they gave me meclizine, but it didn't help. I started having extreme brain fog, everything around me started to feel weird. This all started 2 days after I went to the beach with my friends after playing soccer while being hit by huge waves. A few weeks later I had a loud tinnitus and headache. Not sure if it was postural at the time. I had a normal brain MRI and was diagnosed with a migraine. I was dissatisfied with this diagnosis, so a year later I started pushing my doctor even harder and went to Hopkins where the neurologist diagnosed me with POTS. Finally, after all these months, I was diagnosed with an abnormal test! I later realized that this POTS developed because the underlying cause was left untreated. I'm pretty sure POTS wasn't there from day one because I've never had heart palpitations like I do now. The neurologist also noted the CSF leak as one of the differentials when I first described my symptoms. The symptoms I am currently experiencing are loud tinnitus (goes to the right side when I sleep on the right side and goes to the left when I sleep on the left side). Ear popping all day, stiff neck, burning and electric pain in leg, numbness and stiffness in right leg and arm only, brain fog, eye sensitivity to wind, sensitivity to light, strange smelling urine, extreme visual disturbances ( blurred vision, tunnel vision, lights look weird), nasal pressure when sitting (newly started), dizziness when looking up or standing up. Headaches trick me because I don't get them all the time, but when I have one and I lie down they go away. Do all spinal leaks require an orthostatic headache every time you stand up? I was tested twice for Lyme disease and it came back negative. POTS was a great lead and I feel like it limits the possibilities it could be. Given my whiplash history, could my dura mater have been punctured on the beach? Are the symptoms consistent with what could be a CSF leak? I attended a lecture by Dr. Ian Carroll and he said that tinnitus could be the differentiating factor between POTs and CSF leak. Also he said if you have tinnitus without a headache then you should know something is up and I have tinnitus with POTS 24/7. I can barely stand for long periods of time and lying down is the only thing that helps with my symptoms. The numbness goes away when I lie down and most of my symptoms occur when I get up. The only way to get relief is to lie down. Thanks to anyone who is reading this and can help me. I was taking topiramate as one of my medications to diagnose migraines and my condition got worse. I read that topiramate reduces CSF production so I was wondering if that was the reason. My neurologist wants me to do a blood blind spot, but first I want to know if the leak is there. Let me know what you think, thanks a lot.
5 Comments - Posted on February 11th
PLEASE HELP ME! Suspected spontaneous CSF leak in a few years
So my symptoms are kind of weird, I call it morning sickness. When I wake up I feel fine, then I sit up and suddenly feel nauseous, nauseous, gagging, wheezing with severe abdominal pain and gagging cramps. When I lie down, I quickly feel better. It's been like this for 2 years now. Occasionally I have a nostril that drains water as a clear, thin liquid; during this time I have a burning sensation in my face, on the same side between my eye and mouth, in my sinuses or facial bone structures. It feels like someone is driving a red-hot nail when this happens. This happened 3 times in 2 years. The first time lasted for weeks, the second time a day, the third time a day. Weakness in the legs, ringing in the ears sometimes so loud as to make concentration almost impossible, mood swings and mental problems, anger and rage problems once started Cannot calm down, hypersensitivity to anything, hypersensitivity to noise and flashes of light or glare, my vision gets better and worse back and forth, hearing does the same. To this day no one listened to me, I was diagnosed with sinusitis, given choking meds, allergy meds galore - which never helped except for massive doses of pseudoephedrine. Antibiotics and steroids, ibuprofen. I was told I was going crazy, I thought I was going crazy, I was trapped (during the commit my morning sickness showed a new symptom, b4 they gave me all the meds, when I sat down my heart was beating erratically like if it was off and bouncing etc. I have high blood pressure, morning sickness and heart condition (at this time) I have been on psychiatric meds, still no help other than being treated for 4 major misfortunes at this point, I have been resting a lot which has helped the rest, but that was all that helped once i got used to the meds and i didnt sleep the whole time almost everything came back Released from there During all this i would get a job i would start and within 3 months the symptoms would escalate to the unbearable starting very late, wasting days, getting up 3 hours early to get over morning sickness and get married I go to work, keep struggling to get a steroid dose and would get a little better after all after 3-5 months es, I have to stop working, get fired or fired. Cost me 3 good jobs in 2 years. Bed rest during free time, my kids strep are on antibiotics and steroids and all of a sudden they feel better - not good but a little better. Rinse, wash again .... now I'm suffocating and suffocating for so long that I have severe stomach pains. Does this story sound familiar to anyone? I still haven't been diagnosed, I just asked my doctor to listen to me yesterday and set me up for an ENT appointment on March 11th. I hope to make it there. I am slowly starving between nausea, gagging/pulling, plus my esophagus is no longer functioning properly and I can barely eat anything. I hope someone reads this and boom it's the same thing you went through. I'm scared having 4 young kids and 4 grown kids and I'm not sure how much longer I can take it if that's not what's wrong with me and a waste of time that feels very limited right now. 2 years ago I had a Covid test, very rude, but he had just returned to work on disability as well. I had a cervical fusion about 13 years ago, 2 years later it still hadn't fused so 11 years ago they did a corpectomy and put a titanium block with screws in place of the vertebrae, did major surgery on my lower back L3L4 , L4L5, L5S1 DISCECTOMY plus removal of the small bones of the wing of the vertebrae. The first time in 2000, the second time they were there was 12 years ago. n scar tissue removed in another partialectomy in all the same planes as before, I've had numerous concussions and head injuries from this debris, but all were 15 years or more ago. I found a case study online that looked similar to mine, only 1. So I'm afraid I'm wrong and my doctor is wrong. I need more and more tests.
12 Comments - Posted on February 26th
How long did it take you to see results with Diamox?
Hello! I'm curious to know, for those of you taking Diamox, how long did it take before you started to see results/relief from RHP symptoms? My Story in Brief... I was diagnosed with CSF leak in March 2021 (I was told that my MRI should be used in medical schools as a teaching aid as it was a classic case of HIS due to a CSF leak ). my first blood patch in April 2021 which failed (I attribute the failure to the facility I was sent to when they woke me up from anesthesia, made me sit in a wheelchair and told I needed to eat a snack, before I could go home... then told me to lie down for 24 hours). After getting zero relief, researching and researching and learning a lot about bloodstains, I had my second one in May 2021 at another hospital (30cc L2-3), I came home within 72 hours, however the pressure was in my head so big i thought my head was just a bang... i got terrible tinnitus which i still have to this day. About 12 weeks after the second blood patch, the headache started to subside, but it still didn't go away. I continue to get chronic headaches in the back of my neck and stabbing, stabbing pains at the top of my head that are sporadic throughout the day. I repeatedly asked my neurologist for Diamox, but as an eye exam found that my papilla was not elevated, she refused to prescribe Diamox and kept telling me to be patient. I am now 16 weeks after the second blood test and the tinnitus is driving me crazy and the headache is still there so just this week I saw a new neurologist who after a visit prescribed Diamox. I've only been taking it for three days, but I'm curious to know how long it took before other people felt relief from their RHP symptoms. I know my journey only lasted 7 months and others suffered for years but I have to say it was tough... At this point the buzzing is so loud it's probably worse than the headache. Both work 24/7 with no relief but the volume of the tinnitus is driving me crazy. Hope Diamox helps? Thank's for your time!
Melissa Capell Longo
1 Comments - Posted on September 24th
CSF leak, stroke, bloodstains... and finally a resuscitation!
Hello, my name is Paul and I am 52 years old living in Hong Kong. I want to share a story of recovery from one of those very difficult CSF leaks. I had an unfortunate fall down a flight of stairs at the end of November and that may have been the cause of the leak. I had headaches in December and early January that were either misdiagnosed (sinus infection) or just plain undiagnosed (some pain relief here). In early January, I had a stroke, which I consider to be a rarity for a CSF patient. It was caused by the weight of the brain on the brainstem. I struggled with my balance - a bit like getting drunk - and ended up struggling, e.g. Dress up. My wife took me to the hospital on January 6th when I got confused and threw up one morning - I was suffering from a stroke at that stage. The sagging of the brain was accompanied by bleeding in the brain. A subsequent blood patch had the unfortunate effect of changing me from underpressure in the brain to overpressure. Already unresponsive, I got worse - insane when I wasn't just tangled up in my own world. I was almost completely turned off. My wife urged the doctors to act, and eventually, one night, a neurosurgeon performed emergency surgery - he drilled into my head to remove blood clots and relieve pressure. When I woke up in the intensive care unit after the operation on January 11th, I was obviously more sane than before and responding better. I felt like I had hoses everywhere. I remembered very little of my hospital stay - friends would say they visited, but I had no memory, not even a vague recollection. After the operation, the hospital monitored me closely, with either my wife or a paid nurse staying in my room all night. While the blood patch had clearly taken effect, we were all wrong in assuming the leak had been fixed. I was discharged from the hospital on January 27, before the Chinese New Year holiday. The headache returned within a few days. I should have gone back to the hospital *immediately*, but I was hoping the headache hadn't *really* come back - that it was just a temporary hiccup. Accompanying the headache was fresh bleeding into the brain, prompting the neurosurgeon to consider another operation to draw blood. He decided against it and let the bruise slowly dissolve. Another bloodstain seemed to settle things - I felt much better and started sitting up on my elbows in my hospital bed for a while. But then one night I suddenly felt a lot worse and just wanted to lie down and sleep - it clearly didn't work. It really shook my confidence. Even with tests, doctors struggled to be sure of the location of the leak. They decided to try again, another bloodstain, with me lying in a different position on the operating table, face down instead of on my side. The idea was that the injected blood could potentially flow to different areas. It was now February 26th. As usual, I found the first few hours after the patch very painful - I wanted to break the metal rails on the side of the patient trolley and then break the sides of my hospital bed - but the pain relief after that worked well. At least I didn't pass out on the operating table like I did after the previous patch! (That was fear, I guess most people don't worry so much about bloodstains!) The doctors' plan was twofold: talk to specialists in the United States. about new CSF techniques, especially finding leaks when the newer technique didn't work, while he kept me in the hospital for weeks and not getting out of bed. The bed was tilted slightly downwards, my head was lower than my feet. The doctors feared that I would keep my morale high despite the long delays and uncertainties. "Think positively," said the neurosurgeon. I have a history of depression. After the last blood smear, they thought it would be better for me to mentally wait out the horizontal days at home - but that would have been difficult for my wife, leaving her 100% responsible for care including bedpans, bed baths, meals, etc. . ... It wasn't practical either - the elevator in our building wasn't big enough to accommodate someone on a gurney; i.e. There was no way out of the hospital while remaining horizontal. In the hospital, I watched a lot of CNN and Netflix, listened to podcasts and books, and as my body got better, I was able to read books and occasionally write letters. Visits from friends and colleagues were important to get out of your head. The doctor who specializes in bloodstains brought some of his homemade food. My wife visited me daily and found all my different states of mind. The nurses got to know my routines. I was able to make Skype calls to a support group. For the past few weeks, I've focused on training my legs, especially as I've seen my calves shriveled up from months of bed rest. It was fortunate that health insurance covered the costs of my work. Finally, at the end of March, the neurosurgeon sat me up in bed. He said I don't look too good, reflecting my uncertainty as to whether it's really going to work this time. The neurosurgeon had me sit through meals, then sit for long periods of time, then get up shivering and stand at the side of the bed. On March 28th I was discharged from the hospital. I started walking with a cane. At first, my calves hurt and the stairs were a little difficult. Now I'm almost back to normal with a little discomfort in one knee. Doctors said to relax for three months without experiencing strenuous or jerky movements - ie. no gym, no running, and no yoga. walking is fine I'm still free, but I'll be back to my job as a part-time journalist after Easter. The neurosurgeon told me to avoid driving while I had the bruise because of the increased risk of epilepsy. I had tinnitus before I had CSF issues. I think the buzzing got louder due to the problems with the liquor and then decreased in volume. It's omnipresent, but I notice it mostly when it's very quiet, like first thing in the morning. I'm very lucky as it doesn't look like the spill left any lasting effects and it looks like - touch wood - the CSF leak is fixed for now. What a hell of a situation. Even now, when doctors talk about my dura mater's apparent repair, they can't pinpoint exactly what fixed it - ie. how much was the bloodstain and how much was the bed rest. So for those who are struggling with this, please bear with it - you never know when you might get an unexpected cure. It will look like a miracle. * The main doctors in Hong Kong who worked on my case were: Dr. Fan Yiu Wah (neurosurgeon), Dr. Li Chung Ki, Patrick (neurologist) and Dr. Menon M. R. Bhaskar (an expert on bloodstains). A big thank you to these doctors who guided me in my fight!
8 Comments - Posted on Apr 7th
Persistent dizziness and headache after leak repair surgery
Hi everyone, this is my first time writing on this forum. A little over a year ago I had Dr. Schievink at Cedars-Sinai a CSF leak repair operation (T1-T2 laminectomy). (I've had leaking symptoms since April of last year, after a bad fall on a snowboard that triggered the leak.) Since last year's surgery, I've continued to have some persistent and bothersome symptoms: constant dizziness and headaches when I move or sit. my head shake. (As a result, I can no longer walk or do many of the physical activities I enjoyed before the licking. Driving over speed bumps or sharp turns also causes headaches.) My brain MRI returned to normal in the months following the surgery, and a digital subtraction removed it. myelogram from a month ago showed no visible leakage along my spine and normal "opening pressure". Has anyone experienced similar symptoms after leak repair? If yes, how did you deal with it? Fortunately, these symptoms are not debilitating. I consider myself very fortunate that I can still function at about 75% of my "normal" self. I can work and lead a relatively normal life. But I am frustrated, worried and confused by these symptoms persisting. I would 100% return. Was my brain traumatized when it leaked and now I suffer from some sort of brain inflammation or tenderness? I was leaking for six months last year before surgical repair and my brain MRI showed dural thickening and brain hematoma before things normalized after surgery. dr Schievink said he doesn't know the etiology of my current symptoms. He referred me to an endocrinologist, a vestibular system specialist, and a migraine specialist. None found specific problems. The migraine specialist put me on nortriptyline and Namenda, two headache medications that don't seem to have any effect on my symptoms. Any information or advice would be most welcome. thomas
6 Comments - Posted on December 30th
need quick advice.
hope someone looks into this now or soon. I broke my neck and my ear started dripping. Doctors don't believe me. I took samples from the tip of a purple doctor's glove and put them in a test tube that I have here. I put it in the fridge. not enough to do a transfer test. Should I put it in the fridge or freezer and go to the emergency room? happens every day - but this time it was direct cause and effect. Should I wait and get him to an ENT or take care of it tonight. I feel like I'm wasting time in the ER and they just don't believe me anymore. Thoughts? I decided to just go. At least the sample will be in a lab for some update: So I went to the ER to be shown fluid coming out of my ear. Remember it is temporary and positional. an hour and a half later... yes, just one drop. I could put my finger in my ear and the tip of my finger was slightly shiny but then they looked at it and said who cares. I explained that I really wanted to bring them the samples as it had been leaking more than usual and for longer. What I did was I took a purple medical glove and put my finger in my ear and each time cut the finger and put it in a sterile test tube. So I took it to the emergency room to get tested. I know it's not enough, but what the hell. Then they take it out of the ice cream I put in and leave it out! I finally got up and put it back. The whole time I waited for the doctor, I tried desperately to keep it sealed - but it's just not comfortable doing that. It passed a little when he walked in, but not really. In fact, he seemed to believe me more than most doctors. Then the nurse comes in and says she's going to take one of the little pieces of glove and send it to the laboratory. NO!!!!!!! I finally got more than little and she's going to throw it away??? She said that was fine, I could take the rest home! Whole shit! I'm usually not that assertive as they really think I'm crazy BUT not this time. I said in no uncertain terms to send everything to the lab and put it on hold and I would call my neuro and otolaryngology departments on Monday and they would decide what tests to run. Finally I knew it was starting. The discharge order said they ordered a protein CSF and glucose CSF. Question: What else can you run? What can I suggest? What can I ask them to do? I would appreciate some advice. When that happens, my heart races, face goes numb on the left side where the leak is, lump in the back of the head. The doctor even noticed that my blood pressure was very high, as was my heart rate. I was fine until I cracked my neck. Everyone is welcome to think about it here. Johns Hopkins put a "screw" in and I saw it go to -5 but they said it has to go to -10 to show a leak. Problem is, they never let me trigger the leak. They kept telling me to wait until they did their tests - so they took it out and wouldn't let it in. I was so frustrated. From what I've read, the pressure to study in Europe is -5, not -10. Does anyone know if this is true? The other thing is that when I have a leak I have venous hypertension. What I think happens is that the leak lowers the pressure, but the blood rises, so you end up with a kind of neutral - like the negative 5 and not the negative 10. Does that sound right or am I just hoping they'll find something? This whole thing was driving me crazy as they wouldn't let me have it implanted and then said I didn't have a leak. I could have told them that with nothing coming out of my skull. I tried to get them to let go, but the doctor on duty told them to take it off and from there it got worse. Result - they still have no proof. Hope this gives you something. I am uploading some pictures of the gloves that have the liquid that came out of my ear. All opinions will be appreciated.
3 Comments - Posted on Jan 06
How long can a CSF leak last?
How long can a CSF leak last? I apologize for the long post! I'm new to the group and was lucky enough to meet one of the organizers at Headache on the Hill training today. Based on my symptoms and medical history, I know I've had A LOT of CSF leaks over the past 15 years: a brain injury caused by an onstage accident as a CCG pop superhero; a brain injury from the Boston Marathon bombing; altitude changes; To vomit; To sneeze; etc.,. However, the #1 hospitals in US news and World Report magazine continue to enlighten me. I was a professional pop superhero, featured in Rolling Stone magazine, with songs on over 30 CDs internationally. Unfortunately, in late 2006, I had a stage accident that resulted in a head injury and two undiagnosed perilymphatic fistulas in my left ear. It took me six months of sleepless nights, daily vomiting and sheer torture before I finally found a surgeon to help me fix it in 2007. I guess at that time hospitals didn't have MRI scans sensitive enough to detect fistulas in the inner ear. All the doctors looked at my ear, saw my eardrum intact and sent me off for more therapy. My partner has applied for disability on my behalf. Even this doctor lit me gas and told me there was nothing wrong and reported the same thing to the government... After I was so worried about dizziness he refused to take me and get out of our car in fear that I would fall down and sue them! Sadly, although the surgery was supposedly successful, I ended up on Cipro Floxin antibiotic ear drops...which led to several months of nagging headaches, pain, and more of the same CSF leak symptoms. Finally, on one of my now frequent plane trips to the ER, Boston's largest hospital system admitted me and immediately performed a lumbar puncture, assuming I had a brain infection. It is only through my own advocacy and research that I now know that I suffered CSF leakage as a result of this procedure. It pains me to report that I had the worst "rebound headaches" of my life... And now I'm living with severe and chronic migraines. I had no idea what was wrong with me and the hospital acted like they had never heard of anyone having a rebound headache after a lumbar puncture. Instead of checking for cerebrospinal fluid leakage after the hospital admitted me for a week. They seemed to do all sorts of other expensive tests and then concluded that I had post-concussive syndrome and depression. As soon as I was able to eat on the seventh day, they transferred me to another hospital the following weekend! As you can imagine, the difficult ambulance ride to the nearest large Boston rehabilitation hospital made my condition even worse. I couldn't eat anymore... and now I couldn't drink, not even water. I threw up my meds... I showed the nurse all the pills I had in my hand... and was told it was "too bad" and that I would have to wait for the next dose. As if that wasn't enough, they took away the meds I was taking and put all new ones on me when I was admitted to the hospital! At this point, even getting up was too much to bear. The new rehab hospital, instead of believing me, chose to go along with the previous hospital and treat me as if I just had a mental disorder. I spent seven LONG days DEHYDRATING, losing over 10% of my body weight and begging for IV saline. Ex came in and woke me up out of bed only to ask, "How do you feel?" On the seventh day of this torture, I hit him and replied, "I'm in a lot of pain!" He left offended. .as if he were my villain. The doctor referred another doctor for a psychiatric evaluation. He persistently tried to convince me that I had been to psychiatric hospitals several times during my childhood. I was so medicated, desperately ill with what I now know was a CSF leak, malnourished, dehydrated and just plain exhausted... I almost agree with him! I was never admired in a psychiatric hospital and I insisted until he left me alone. I later found out that he used the same unprofessional tactics with my mother in the hallway. Thank God she defended me, explaining: “My daughter was a pure student and a professional musician. She was not a "problem child... in and out of mental hospitals... Eventually I got this saline IV but only because I used the scale in bed to prove I lost less than 40 pounds! By the time the nurse appeared in the port of my vein, they had all passed out from dehydration. Then another nurse tried. And try another nurse. After they all failed and my arm was injured from elbow to wrist, they sent the head nurse... She got mad with me... Like it was my fault! Apparently as punishment, they left the IV in my arm... All day. Eventually, I pulled it out myself so I could go to the bathroom. I barely touched my food the entire day. week as the mere smell of it made me throw up. Doctors told my family, "I'm doing this for attention." They told my partner, "I cried in front of him for attention... and I want him to 'not come back' to make me feel better. " I later found out, when I read the hospital and doctor's notes during my stay there, which they put in my records that I had eaten half or more of every meal during my entire week there. This was nothing more than a blatant lie. ! They were getting ready to fire me because I couldn't do physical therapy and the insurance wouldn't pay for your stay in a rehab hospital if you couldn't do physical therapy. They must have treated me less because I became more aware of everything. The nurses came several times a day and they marked things on a white board on the wall... But they didn't even talk to me, much less touch me. On the last day I realized that they are marking all the things they did for me during this visit: patient bathed; modified, sheets; etc. In reality, they didn't do any of that. In fact, nobody came to clean my room all week. I know this because I was throwing sandwiches around the room to try to get the smell out of me not to vomit. All the food was left on the floor in and around the bin. On my last day, I complained to my parents about the unsanitary conditions. I saw one of the cleaning ladies out in the hall listening to us. That was the only day someone showed up to finally clean it up. When they finally let me go, I still couldn't eat or retain water. Yes, they fired me anyway...thanks to the US health care system and insurance companies! At least at home I could sit still all day and try to heal. At the hospital, there was a constant barrage of people trying to get me to wake up, sit up, do psychotherapy, walk, exercise, do physical therapy. I was so scared, emotionally and physically, but I actually called the lawyer. They told me I was lucky to be alive. But as I lived, I couldn't sue liberal Massachusetts. You said you wouldn't win a case unless the patient died. What kind of health care is this?! To this day, more than 15 years later, I still struggle with the same symptoms... But they come and go, based on the same situations: driving through the mountains of New Hampshire; sneezing attacks; severe vomiting due to migraines; anything that puts pressure on my head. They occurred after I suffered another brain injury from blast trauma from the 4/15/2013 Boston Marathon bombing. that was six years later. Yet the same hospitals that were #1 in US news and World Report magazine lured me in with the same gaslighting... They claimed it was a mental health issue. I was sent home from the ER and told I was "just having a panic attack". I had to fend for myself until 2014 to get a diagnosis of the brain injury I suffered in the bombing along with permanent hearing loss, neck and back injuries. Are you really telling me that the best hospitals in Boston have never heard of blast trauma suffered by our military? My question is... can I still have the same 2007 CSF leak? Or could it be opened multiple times over the years? Or, because I have Connective Tissue Disease, HEDS, Hypermobility, Ehlers-Danlos Syndrome, could I be causing new CFS leaks on a regular basis?
2 Comments - Posted on February 5th
I think I lick again after swinging a golf club.
On April 27, 2020, I received a steroid injection in my cervical spine that punctured my dura mater and caused a spinal leak. About 15 minutes after driving home I felt the pain and thought I was going to pass out. Thank goodness my husband was driving, he practically had to carry me inside when we got home. Last summer I had three bloodstains to seal the leak. The first time the doctor took me out of the office in 15 minutes, he didn't know what he was doing with the post-blood patch protocol. The second patch was about a week later and I asked him if I could lie down for at least an hour. (Did some research and had to find out for myself) Later that summer I fell and learned it was leaking again. I had MRI's and they were negative... no leak or cerebral palsy. But I knew it was leaking and I had all the symptoms so the doctor gave me a third blood sample. I lay down for 1 1/2 hours at that time and it lasted quite a while. 5 months later I'm fine. I could work 12 hours a week. I'm a pastry chef, so now I'm more aware of the heavy lifting and have people helping me more often. I still have pain in my neck and shoulders, so in December 2020 I started seeing a physical therapist twice a week. A week ago I was feeling great, my exercises and traction were helping my neck feel better. I felt like there was hope that I could feel normal again. One of my goals is to one day be able to play golf with my husband again, so after 2 months of PT my therapist said, "Let's swing a club a little bit and see what it feels like." I have the putter on Carefully swing and wiffle golf balls 10 times. No problem... felt great!!! :) The next day I was sore, but I figured that could happen and my muscles could be sore. But over the course of the week I started to develop these symptoms: * Headaches * Pain in the neck that hurts and burns * Constant shoulder pain * Pain in the shoulder blade * Pressure in the head at the temples * Ears popping and ringing * Nausea at times * Pain in the right jaw * Head blurry and unbalanced * tired Nothing helps, tried ibuprofin, muscle relaxant, heat, rest. I think I'm licking again, but maybe just a slow lick. The problem is, I know my neurologist will say, "Oh, your bloodstain should heal. It's probably fine." We'll see what my physiotherapist thinks at my appointment tomorrow, hopefully he can help. However, I'm on the verge of finding a CSF leak specialist, but I don't think the doctors here in Montana don't have a lot of experience with CSF leaks. May I need further MRIs or a CT myelogram and send them to Dr. Schievink @ Cedars-Sinai. Any thoughts? Will I ever be able to play golf again? :(Thanks Melissa
2 Comments - Posted on February 25th
CSF leak after epidural steroid injection (ESI)
Already in May 2017 I suffered a radial rupture in L4 L5 at work. First let me say that I have a very high pain tolerance and have always gone to work sick and in pain. This was possibly the worst pain I've ever felt in my life, not even being able to bend down to get dressed. I had a pain that radiated to my stomach and after a few days I convinced myself that it couldn't be back pain. I thought I had appendicitis! As the daughter of a retired emergency physician, I avoid the ER at all costs. Well, I ended up leaving because the pain was so bad and I was convinced my appendix was going to burst. No appendicitis... The doctors didn't find anything, not even on the CT scan. I was told it was probably a pulled muscle from work. After having about 5 days off due to the long weekend, I dragged myself back to work. I think it took two or three days, I just couldn't do it. My work involves a lot of repetitive bending, twisting, grabbing and lifting up to 50lbs. I reported to Workers Comp (it was a big mistake). I had told my boss about the injury that night, but when I got back to work he had been fired. For about 3 weeks I was sent to a walking clinic, they basically put me on muscle relaxers, steroids and pain meds. Eventually they recommended an MRI as I didn't feel much relief. MRI showed a radial rupture and annular disc protrusion at L4 L5. I knew it wasn't a pulled muscle! I finally get to see an Ortho, at least that's what I thought. I see how this crappy workers compensation system works now. Orthopedics told me it's a muscle strain...but what about the MRI report? It's not a big deal, it's a muscle strain. Here are more muscle relaxers, pain relievers, a tens machine, and lidocaine patches. =( I'm not going to take the meds, they just make me weak and don't relieve my pain. The other stuff doesn't help either. 3 weeks of physical therapy was ordered and it was basically a joke. They've done this to a lot of patients, I got a request for one time change to a new Dr. he seemed a little more understanding. He still didn't acknowledge the MRI results. He offered to try an ESI to see if that would help my pain. Give ESI for muscle strain? Had this procedure at 19 October 2017. Thought I'd give it a try and see if it gave me any relief. The procedure itself wasn't too painful, it was uncomfortable but probably didn't hurt too much it lasted a full 10 minutes and then I was immediately told to slide off the table and stand up. I hadn't even pulled my pants all the way up when they opened the door! the one I touched was in terrible pain, I limped to a seat by the counter but couldn't get up without getting up. I felt like I was about to pass out and throw up. They gave me a glass of water and a sweet to suck on. I was shaking so hard I could barely hold the glass. They told me I wouldn't need someone to drive me after the procedure. I'm glad I have someone. I finally made my way to the elevator and outside to wait for my ride, there was no way I was going home. I had tears streaming down my face from the pain and I was still shaking, people were asking me if I needed an ambulance. Assuming I had reacted badly to the injected steroids, I felt terrible and ended up taking this Monday and Tuesday off. Then I got an email saying I was putting my job on the line because I didn't have a job. I dragged myself to work for the rest of the week and the week after that. I got progressively worse, the severe back pain caused by the injection subsided, but I still had normal back pain. I also had a terrible headache (much worse than usual), tremendous pressure in my head, shaking, numbness in my face, nausea, dizziness, blurred vision, and severe brain fog. I did and forgot weird things. I shouldn't have driven to work, let alone work. I called the PA on duty on a Saturday morning as things seemed to be going downhill. I mentioned the possibility of a CSF leak and he said it was possible and if I got worse I would go to the ER. Well, I didn't want to go to the ER, so I waited until my Thursday follow-up and went to work. At my follow up, the PA spoke with the doctor and agreed that I had a CSF leak and scheduled a blood patch procedure for me on Monday, 6/11/2017. They injected about 16ml of my own blood and some fibrin glue in hopes of sealing the leak. Interestingly, the ESI took about 10 minutes with 2 people, but this procedure had to be performed in a surgical office. I was there for hours and there were about 5-6 people in the room while it was being performed. My headache got better almost immediately, but now I had excruciating pain in the left side of my back at the injection site. I took a week off because I needed to rest for at least 3 days. By Friday, I could barely move and was on my feet for more than 15-20 minutes at a time. I asked the doctor's office for a certificate for another week, just in case. My back pain at the injection site improved, but I could feel the pressure building in my head and I worried that the leak wasn't completely closed. I hope it heals on its own with time. My employer told me that I had missed a lot of work and couldn't come back until I was laid off from my full-time job. I had my follow up with the PA at my doctor's office and they discharged me (what a shock) although I did express concern that the leak was not fully sealed. The idiot actually told me that "if I don't have spinal fluid I don't have to worry". That's not possible! This whole workers' compensation system is a nightmare, these doctors get paid to tell you you're fine, even when you're not. Since the last follow-up I have been able to see the doctor. However, he ruled out that I still have a leak. He tried to blame my symptoms on my chronic headaches. He also said there was nothing he could do about my back pain as the ESI didn't help. I tried to explain to him that I feel like Ozzy Osbourne, at least that's how my brain feels when I sit down for a while. I feel like I have brain damage, the pressure in my head is causing some weird things. I still have most of the symptoms from before the blood patch. The headaches aren't that bad, and I've had chronic headaches before, so I'm used to having headaches. The tremors aren't as bad either, but they still happen when I wake up too late. I certainly don't have much life right now. The work was already harder because of my back injury, but now it's even harder. I think I could have learned to live with the pain in my back, but this is hell. I know and am reminded every day that there are people with worse problems. Things could always be worse. Today is exactly 2 months since I had the ESI that caused my leak. I'm stuck in the workers compensation system and I can't see a doctor with my own insurance. I also cannot afford to pay out of my own pocket. I'm pretty confident it will get better on its own over time. I've read so many people's stories about years of suffering. My heart goes out to you, two months was bad enough! Does anyone have any advice? Have you recovered from an ESI or surgery after a dural puncture? If yes, how long did it take you? Did you have more than one bloodstain or did it heal on its own? I've tried staying hydrated and drinking more caffeine, but it doesn't seem to make a difference. I lay down in my car on my 30 minute break and usually lie down on the couch when I get home. There are things to do around the house, so I force myself to do as much as I can. But there's not much I can do before I have to lie down again. One of the things I find most difficult is that people don't understand. You look fine, so they don't seem to understand how you feel. With Ozzy Osbourne, I tried to give people a taste of what my brain feels like. No offense to Ozzy! =) When I'm not trying to laugh it off, I see dark things in front of me. If you made it to the end...thanks for reading. I'm feeling a little lost and alone at the moment, I need a good kick in the pants! The holidays are coming up and I can't do the things I used to do anymore. Time to suck it up and deal with it I suppose! Happy holidays everyone. Wishing us all healing in 2018. My thoughts and prayers for you and your families.
6 Comments - Posted on December 19th
Need advice or similar stories
I'll try not to make it too long so as not to include all my diary entries and everything. Exactly 6 weeks ago I had to push myself (valsalva) to lift some heavy boxes. That night and the next 2 days I had a headache and a few other telltale symptoms that built up over the course of a few hours until I couldn't take it anymore. Instant relief from flat settling. I found CSF leaks on Google and in this community. I did semi-flat pillow rest for 5 days (before I understood the meaning of horizontal). Then 3 strict bed rest horizontally. I tested it and it lasted 4.5 hours before the headache started and I lay down. Another 5 days of absolute rest. I retested myself and had a great symptom free day while sitting on the couch. They started just before bed, at 2 pm. Very excited about it. He began to live more normally. Still, do it strictly with no bending/twisting/lifting movements. I would lie down for 30 minutes to an hour here and there just preventively so I could live without symptoms. I would go back to work a few hours a day and drive 20 minutes each way. I was really excited to be healing. The symptoms appeared in the afternoon, but they were very mild. Then my symptoms changed. I went back and forth wondering if they were high pressure. Pressure in the ears that doesn't necessarily go away when flat. Sometimes a little pain in the forehead when flat. Pain in the back of the head – mastoids after standing up. For the past 5 days I have been getting these new symptoms earlier in the day. An hour or two after waking up. Pressure in the ears, pain in the back of the neck, mainly. It's increasing, but very slowly. I can stay up and go pretty much all day. I want to lie down at night, but I don't have to. I go to bed in the afternoon to recover from waking up at night. I'll be back Am I going too fast and inhibiting my healing? I want to heal naturally, but I'm worried about compromising the work I've been doing before (Extremely Clean Eating, L-Agrinine, Vitamin C, Magnesium Chloride and Glycinate, Potassium Chloride, etc. every day)
3 Comments - Posted on November 3rd
The tomographic myelogram was interpreted as normal.
Well I had my myelogram done and I have to say it was the most painful experience ever! The needle part wasn't bad, it was the ink itself, my body just didn't react very well to it 😢 So it was quite disheartening to find that it was interpreted as normal after going through so much pain. I have a cistern survey scheduled in a few weeks. I'm not looking forward to it after what happened, but I need answers. I doubt it will show anything at this point. I think I probably have a small, slow but painful leak. I have discussed this with my husband and have decided that once the scans are complete I will have my neurologist refer everything to Dr. S. Cedar or Dr. Carroll at Stanford for expert opinion. I can't go on without answers and I doubt it's just migraines. My headache triggers are A: getting up and moving. My head feels a lot of pressure when standing up, but it disappears when flat B: sitting in a car C: anything related to holding your breath for a few seconds, such as drinking water, brushing your teeth, hiccups D: any kind of incline when going down stairs, going down a hill things that make lying down swimming better I don't think this is typical of migraines and the doctors need to address this fact instead of giving me more pills. Gabapentin helped with some of my weird neurological issues, but it had no effect on my headaches.
14 Comments - Posted on July 12th
No spinal fluid after lumbar puncture?
Lumbar puncture failure? Hey guys. I've been researching CSF leaks and I'm pretty sure I have one. I definitely get the classic positional headaches. Lying down gives a lot of relief. It's especially bad after a day of driving. They get worse as the day goes on. I have neck pain/stiffness, nausea, fatigue, popping in my ears, facial pain, eye pain/burning, back pain, etc. I've had 3 epidurals in childbirth in the past. I have suffered from "migraines" for just over 4 years. I think I used to suffer from migraines, but I'm not sure when it turned into this type of headache. All I know is that they are very different from previous migraines. In the last year they've gotten worse and I've had numbness/tingling in my hands. I saw a neurologist in February and had some tests done, including an MRI of the brain, which was normal. In March I got very sick and ended up in the emergency room. I had a fever of 106.1 and the average was 104 for 5 days. I also had severe headaches other than my usual migraines. They did a CT scan of my head which was normal. (No contrast). 2 Covid tests came back negative. They wanted to do a lumbar puncture to rule out meningitis. The problem was, they couldn't get a single drop of spinal fluid out. They tried 4 times and 2 different doctors tried and got nothing. They just treated the headache and fired me. Is that an opening pressure of 0? Could this be due to a leak?
14 Comments - Posted on Aug 27th
Spontaneous CSF leak due to high pressure
My story is long, so I'll try to keep it as short as possible. I have hEDS that was diagnosed 2.5 years ago after a bloodstain from a CSF leak went really, really bad. The result was a chemical meningitis that turned my arachnoid fire into a blazing inferno. I'm disabled now. I was lucky to be the last patient of Dr. to be the Tennant of the Forest. He diagnosed me with hEDS as well as AA and cauda equina syndrome. I had a total of 4 CSF leaks. The first 3 were all after spinal surgeries.Dr. T told me that my dura mater was tissue paper thin and that spontaneous leaks were to be expected. I'm experiencing this right now. It happened during the landing of a plane on June 30 of this year. The pressure in the cabin caused my eardrums to burst and an overwhelming headache with severe neck pain, loud humming and nausea on both landings that day and descending a high canyon that night. It was terrible. I had no idea what was going on, but within 48 hours I realized I had all the CSF leak symptoms again, as well as increased AA pain. So I'm here thinking about what to do. No way am I getting another bloodstain as I still have terrible PTSD from the experience. I will only heal naturally when possible. I force fluids, caffeine, and lie down as much as I can. I'm wondering if there are any other spontaneous leaks out there that have had their leaks occur while flying in an airplane or traveling to high altitudes?
5 Comments - Posted on July 10th
Is this a CSF leak?
Hello everyone, I am writing on behalf of my partner. Allow me to explain his/our situation because I REALLY need some tips and advice. In February 2020 my partner (then 21 years old, perfectly healthy, exercising and eating right) became very dizzy. He suddenly felt unbalanced, dizzy, a little nauseous and not himself, his symptoms progressed to facial pain, mainly in the eyes and nose, and the first stop was an ENT (this was one of many visits to an ENT) . He started having crippling pains in his head that he could only describe as PRESSURE, like someone was constantly squeezing his head. My partner developed panic disorder because his pain was so severe. These are his symptoms, which have been going on for almost THREE years: * Pain/pressure behind his eyes (and a red rim around his eyes when he gets the pressure) - hurts to read, painful eye movements, sensitivity to light * Facial hypersensitivity , sensitive scalp, and air blowing into the face *Painted palate (along with burning mouth) and burning sensation *Nose pain/congestion/swelling (sunglasses not worn)*Referred pain that seems to start in the neck and in BOTH sides goes to the front of the face (he can no longer wear hats, feels terrible standing in the shower and washing his hair or resting his head on something)* Stiff neck and pain in shoulders shoulders and back of neck and has pain eating (moves throat to relieve pressure)* muscle spasms/cramps behind ear (and also tinnitus), hand, foot, behind eyes sc arms sore (can no longer exercise)* mental confusion, memory problems /concentration, lack of energy/fatigue, depressed Your pain it is worse when driving, walking, drinking cold things, blowing air in the face, taking a shower or when he leans his head on something. We went to EVERY doctor and specialist you can think of and they did countless MRIs and CT scans and everything is clear again. He was misdiagnosed with Lyme disease, developed panic disorder and was so unhappy and in constant pain. He is now being treated by a doctor who thinks he may have a CSF leak but he has had injections in his neck and 2 bloodstains and is still in pain. I just want to know if we're on the right track with the possible CSF leak or if it could be something else. My partner is so young and in so much pain. Please advise. Thank you very much
2 Comments - Posted on Dec 06
What restrictions do you follow after the blood patch?
I am 3 weeks post patch and I feel MUCH better than the pain I felt after my first patch. The first time I felt a lot of pain because of the patch, but this time I am struggling with high and low blood pressure, but my back pain is minimal compared to the nightmare of the first time. When they say no twisting or bending - what does that mean to you? Like big twists/bends OR anything else? I squat instead of bending over when I can (rarely have I started bending over a bit). I have a grabber thing. But I think I'm twisting it a little when checking my blind spot while driving. I want to be careful, but is this only for the "bigger" moves? Like golf, vacuum cleaner, or dishwasher and clothes? I don't know what "I can't do" but I'm ready to get back to my life and my family. Feeling confused and depressed.
3 Comments - Posted on Aug 15th
Any useful advice. CSF leak.
I am in Ireland I suffer from what I believe to be a spinal cord leak. It's so scary that so little is known about csf leaks here! I am entering my 4th month with headaches, tenderness, cerebral palsy, sinus pain, eye pain, blurred vision, nausea, dizziness and mental confusion. I know that 4 months is not enough time compared to the time that some suffer. Mine started after 3 failed attempts with a spinal block during an emergency C-section. Pelvic and had to do general anesthesia. I have a healthy baby boy thank God, but I haven't felt it since that day. The next day I also had a bad chest infection and the flu. I've had a slight nasal drip ever since and I sometimes wonder if it's a cranial leak instead of a spinal leak or both! It's terrible just to guess. No family doctor or neurologist has experience with this. A very stressful situation. I spent weeks in the maternity ward and at Mater Hospital. My MRI and CT scan were normal, but it was a young doctor who read them. He admitted that he has only experienced CSF leaks due to trauma/injury. He said I would pass out and come out of my nose if it was a cerebrospinal fluid leak. He thought I had lost the birth anxiety and migraines. Fortunately, after 5 weeks of my appearance in the ER, the maternity anesthesiologists tried a blood patch, but it didn't work. The next day I tried again to lift my 10lb baby. I was also having an anticoagulant injection to prevent c-section clots so I think it may have stopped working or sealed off. I'm looking for a second blood patch. Prenatal anesthesiologists know a little more than neurologists, but they have never heard of any symptoms other than headaches and ringing in the ears. I have a 4 month old baby and a toddler. I can't take care of her alone. The family is great, but I want my life back. I realize this could be a long journey and I worry that I will never be myself again. Painkillers and lying in bed and on the couch all day are my new normal. My kids keep me going. I am concerned that a consultant at Mater Hospital said that I have no CSF leak because it was not shown on the MRI or CT scan. And that my symptoms weren't leaking cerebrospinal fluid. I'm not even sure if he studied my exams. There must be more people in Ireland with that, right? What medications have you tried? I'm trying a beta blocker. But propanol has not felt any improvement so far. GP is trying some things with me. It treats the symptoms rather than focusing on the leaks. He has never had a CSF leak experience. I guess I'm panicking thinking this will get worse over time if left untreated. I'm a shitty mom because of this. These random symptoms are driving my family crazy. If the anesthetists agree to take another blood sample, I worry about rebound hypertension. I don't think they've ever heard of it and I'm worried about having more pain without medication. Any advice would be helpful. Thank you very much.
4 Comments - Posted on Apr 9th