Epidural Blood Patch - Success!
TL;DR: Blood patch worked. Still feeling achy back and mild high-pressure headaches but I’m back to living life and I’m so grateful for all your well wishes and advice along the way. I wish you all a speedy recovery from this monster of an injury.Update to the update - Right after posting this I suffered a two day migraine unlike I've had before. Full on nausea, head pounding (top), light and noise sensitivity. Dr. had prescribed prednisone to try to combat the rebound headaches she was calling migraines so I started those yesterday. Just to note that recovery is not completely linear. Still in good spirits and doing better every day, but sometimes there are set backs or roadblocks. I guess this post did jinx things a bit lol. Long story not so short: I've been so nervous to write this post thinking that I would be tempting fate to say that yes, it worked! I looked for success stories or what symptoms to expect before my Epidural Blood Patch (EBP) and found a few but not many. I know once people heal that they're less likely to continue posting. I hope future folks can benefit from this post!I started getting headaches a few weeks after the birth of my daughter, but I didn’t have an epidural, so they think it was just the trauma of labor (not that it was especially traumatic or bad, it was actually great!). Leak symptoms started slowly. A quick headache when I stood up or sat up in the morning, but it dissipated quickly. Six months later, the headaches were becoming more frequent, longer lasting, and more intense. I started keeping a headache journal and realize it was happening every day. I went to my GP and she thought it sounded like a CSF leak so she referred me to a neurologist who said the same thing and ordered a MRI. I saw the neurologist on a Friday and the following Tuesday something must have happened because it was like the flood gates opened and the headache was so intense and would not stop unless I laid down. I was convinced I was dying so I had my husband pick me up from work and drive me to the ER.The ER did a CT scan and confirmed that I wasn't dying. The two doctors I saw in the ER also mentioned a CSF leak. I feel grateful that so many doctors knew about leaks and diagnosed me quickly. Hindsight being 20/20, the ER offered to admit me so they could do the MRI but it would have taken 2 or 3 days. I had an infant at home and didn't think I could do that. If I had just stayed in the hospital, they would have done the MRI which showed brain sagging, maybe done the CT myelogram or maybe just given me a blind blood patch. I wish I had stayed but I didn't. I went home when they confirmed that I wasn't dying, and I waited a week for my MRI which confirmed I was leaking. Then I waited another week for my CT myelogram to confirm where the leak was. THEN I waited two long weeks for my targeted blood patch. I'm a bit salty because they could have done it a week earlier but because of administrative bullshit, they didn't.So 5.5 weeks from ER to EBP. I was bed bound the whole time save for a few minutes usually in the middle of the day. My symptoms were bad in the morning, eased slightly mid-day once I ate food with salt and main lined coffee, then were bad again at night. I would wake up with a headache even while laying down. It was the worst right before my CT myelogram. My vision went wonky and everything sounded auto-tuned. The CT myelogram actually made my symptoms better, probably because they injected some volume into my spine.I was so nervous to get my EBP even though everyone on here said it wasn't that bad, and they were right! That being said, I didn't know what a needle in the spine felt like before the CT myelogram but when I did, I definitely didn't want to do it again!The morning of the EBP I couldn't eat or drink, so no coffee. I went into the building hunched completely over, nearly crawling and almost crying from the pain. They finally got me laying down and I was so nervous but they didn't want to give me any medications. I know a lot of other places do twilight sleep or sedatives but not my place. Local numbing agent and that's it! I was shaking like a leaf from being cold, nervous, and in so much pain, but when they finally stuck me I was able to focus and stop shaking. They needed to add more numbing agent because at one point I yelled out "oww, I feel it, is the needle in my spine?!" and the doctor was like no, we're not there yet, it's just in your back, and he added more numbing. It was better after that but it was such an icky feeling, but not as icky as when they finally pushed the needle through to the epidural space. My doctor must have needed some serious muscles to do it. The only way I can describe it is it felt like he was pushing an air compressor pin through a tire. It was such a strange feeling and I hope to never have to repeat it but the benefits are nothing short of miraculous.My doctor wanted me to sit up after 30 minutes. I told them I wanted to lay completely flat for 2 hours. They started propping the bed up slowly every few minutes but I told them it didn't feel good so they mostly just let me rest. After about 1.5 hours I got up and was feeling stiff and sore but not terrible head pain! I carefully went home (in good spirits) and laid flat for 2 days except for short trips to the bathroom. About 72 hours after the EBP I was still so sore and exhausted but I could sit up and stand up for short periods of time without a lot of pain. Tylenol (not ibuprofen) helped ease the back pain. The first week after the EBP was rough, pain wise. There was still some wonky headache symptoms and I was terrified the patch didn't work or it would pop and I'd be right back to square one, but that didn't happen. It continued to improve slowly. I read that you should measure progress in week over week instead of day over day and that helped put it in perspective. I was better the second week than I was the first week and by the third week I was feeling better than I had been the second week, so definitely progress! I had good days and bad days though. It wasn't completely linear.My doctor told me there were no restrictions and that I just shouldn't start cross fit the day after the EBP. LOL terrible advice. He also said I could go back to work the next day. Yeah, no. He agreed to write me a note keeping me out of work for a week. I went back 1 week after the EBP but I was in bad shape. I knew from reading other people's experience that it wouldn't be a complete 100% back to normal feeling, especially after leaking for months. Maybe if you have a lumbar puncture that causes a leak then you get a EBP the next week, maybe then you can bounce back quickly. If you've been bed bound for two months, there’s no way you’re jumping right back into being upright for 8 hours straight.It's been 7 full weeks since the EBP and I’m feeling mostly back to my old self. My back aches and I get headaches every day but nothing like before. I still need to watch my salt intake and I cut out all caffeine. I recently cut out alcohol and I think that helped keep the high-pressure symptoms at bay. I was very careful about bending, lifting, and twisting the first 3-4 weeks. Then I started holding my daughter (about 23 pounds). Around 5/6 weeks I started picking her up from the ground. Only this week have I started feeling somewhat ok with putting her down in the crib (which is harder than up). I feel a lot of head pressure when I do so I still do that sparingly. I started going to physical therapy and that’s been helping the achy back. They do these pressure point holds on the back of my head that have improved the headaches too! I’m on the mend, and I’m looking forward to a productive spring. If I remember correctly from the slide show posted to the CSF website about post-EBP restriction recommendations, it takes 6-8 weeks post-EBP before you can start bending, lifting, twisting, then a full 3 months before you’re “out of the woods” and it can take a full year before you’re recovered. That seems to track.I know I’m lucky. I’m lucky the doctors knew what they were looking at. I’m lucky the MRI showed brain sagging. I’m lucky they could pinpoint the leak and I’m lucky the EBP worked (and stuck ::knocks on wood::). We don’t know why this happened. Hopefully, I just won the bad luck lottery, and it was an anomaly that will never happen again. I’m visiting a rheumatologist later this month to help rule out any sort of genetic disorders that might have led to this. That’s all I can do. That, and get on with life! I'm rooting for every single one of you. Hang in there!
13 Comments - Posted Jan 08
CSF leak with POTS, hESD…
Hi, I’m recently diagnosed with POTS and hESD- not yet confirmed by geneticist but three specialists agree. I’ve been dealing with severe ear pain which migrates into Trigeminal neuralgia like pain, which is what I’ve presumed was going on fir the past 18months... I have a bunch of other symptoms as well; fluid draining from ears and nose, stiff painful neck/spine, weakness, headaches and severe pain (10/10 on pain scale) on standing or being upright for much time. Its gradually improving, at least the super severe pain piece as long as I stay 100% horizontal. After checking my ears and talking about all my symptoms my primary thinks it’s most likely a CSF leak. I was referred to a neuro-surgeon and am waiting to hear back. I’m wondering what to expect for recovery and treatment? Also, is there anything my primary dr can prescribe/do to help until I get this fixed? I’m specifically wondering if IV fluids would be helpful. I’m drinking 7-8QUARTS of water with “Liquid IV” electrolyte mix PER DAY. It helps but I’m thinking actual IV fluid might be better? I’m hopeful that a blood patch will help resolve this and I’ll get back to rehab and strengthening again! I’m generally optimistic and in the stage of being glad to have some answers (re:EDS) after years of being ill and gaslit. I’ve mostly stuck to the self healing/healthy eating track…which my body chose for me, lol, as I don’t tolerate mainstream processed foods. So I’m going to try to keep my Rose colored glasses on and stay positive about the CSF leak- knowledge is power!
1 Comments - Posted Jul 29
Traveling to Duke for treatment
I'm scheduled with Dr. Grey at Duke for May 1st and 2nd for an LP, CT-Mylogram, and blood patch. I will be flying alone and then a friend will meet me there to help me once I arrive. Is there anything I should know about travel, hotel, food, and what to expect from my appointments and recovery?
2 Comments - Posted Apr 13
Success Story: Conservative treatment.
I joined this forum in early 2019 and this is my first post here. Sorry for the length. I planned to be brief but oh well.. when writing this.. I guess this turned out to be some kind of therapy for myself also.. Finally letting things out.I wanted to share my story as I remember myself desperately trying to find stories about recovery to give me some hope when the world had collapsed. I know that many of these forums about health problems are biased with people not doing well but at least for me it was very important to find some evidence that someone really recovered. It was december 2018. I was traveling abroad with my family. I was 37 and also a person who had never had any headaches except minor ones occasionally when hungover. One day I developed a headache and first I thought it was due to the wine I had consumed the previous night. The headache did not pass during the day but I really didn't pay that much attention to it. Probably because I spent most of the day on the couch and went to sleep in the evening. The next day I woke up and the headache was still there.. and it was a bit worse than the previous day but I could still function. Towards afternoon it started to be pretty bad and I took some ibuprofen but it didn't really help. Around 18:00 I was in a restaurant having dinner with my family and the headache had grown so bad that at some point I had to leave and go lie down. As soon as I reached the hotel room and went to bed, the headache was instantly gone and when I stood up it came back. I did some googling and in 15 minutes I had ruled out all the major conditions causing headache and found 100% matching condition -> spontaneous intracranial hypotension.My spouse arrived from the restaurant and before I got to tell her about my self diagnosis she had already called a cab for me and we went to hospital. The doctor there did some neurological tests and they also took CT of my brain and although he didn't know what was going on he knew that something was wrong and he couldn't send me back in that condition. Instead they took me in to the hospital for further investigation. At that time the headache had intensified to the point that I spent all the time lying down and could barely walk to the room where I was about to spend the following night. Next day the condition had gotten even worse. When lying down I felt pretty normal but just trying to sit for a few seconds gave me so horrible pain that I thought I was gonna die. I was screaming in pain in just 5 seconds in sitting position. Really the headache was something I had never experienced in my life. I was given two shots of some pain medication injected into back of my head but those did not help at all. Only lying down instantly took the pain away. They took magnetic image of my brain and the next day I got the diagnosis. It did not show in the magnetic image either but the neurologist said she was 100% sure about the condition and told me about the possibility to try "blind blood patches" (which I had already googled at that time myself also). I wasn't too happy about the idea of the procedure done somewhere else than in my home country so I skipped that option and we chose the conservative method: Just lying down and hoping for the best. I could try blood patches later if I wanted the doctor said. I spent 14 days in hospital just lying down (except for toilet visits, which were painful but somehow I managed) and towards the end of that hospital period I had learned that coffee alleviated the symptoms a bit and with coffee in my system I could sit for 10 minutes so I could quickly eat before the headache made me to lie down again. Mentally I was devastated. My kids were in primary school age that time and they were really worried also. They came to see me every day at the hospital but they did not quite understand the situation. No one did. The fight or die -phase started to fade away and the depression sneaked in. I had googled tons of scientific articles and various other sources about the condition. I was so worried about the future. Mostly related to that I wouldn't be able to be there for the kids normally. I had learned that there were people who had been lying down for decades. I was so afraid that the condition would last forever and no one could help me. I craved for success stories but even though I found some I never quite got the feeling that many would improve. I was hospitalized in my home country and suddenly when lying down I also developed Vertigo. It was a scary experience at the first time. As soon as the nurses saw me walking they sent me home and told that the vertigo was not related to my other symptoms but instead it was because of tense shoulders because I work in IT business (I've never had tense shoulders/neck). During the following weeks I started to develop new symptoms:* Back pain in upper spine* Painful scalp (Washing hair was too much sometimes)* Neck pain* The Lhermitte's Sign (Lasted only for a few days luckily)* Severe tinnitus. Some days the tinnitus was so loud that there were days that I could not watch TV because I just didn't hear what they were talking there. Tinnitus was always worse after walking or staying up and better in the morning. * Occasionally I had nausea. The nausea was bad especially in the evenings but I never threw up.* I was hyper sensitive to sounds. For example I could not stand knives and forks hitting the plate. It was way too loud and kinda hurt my ears. Sometimes I had to ask people to talk to me whispering (no kidding). When it was minus degrees outside and I was walking there I could actually hear the minus degrees. May sound crazy but the trees and fences for example make high pitched noise when they are frozen and there is slight wind. Normally you just don't hear it.* The headache slowly changed so that it was not that much related to staying up or lying down. Instead the headache started to be more constant but at the same time the intensity of the pain was going down and about 3 months later I was able to get back to work. The coffee would help always. At some point I noticed that the time without headache was actually growing.* VERTIGO. That was the most debilitating symptom. I would get severe vertigo attacks. Sometimes lasting up to one minute, sometimes just under one second. They would come randomly.. even when lying down. Afterwards I would feel dizzy for hours/days/weeks and sometimes I had to be on sick leave because of vertigo. There were days when I had to have someone to walk me to places in case the vertigo attack would happen and I would fall down.When lying in hospital abroad I always had the idea that when I was back home I would get some treatment as I thought the healthcare is pretty decent in my country. How wrong was I at the time. Here the doctors refused to agree with the diagnosis because the condition was so rare. They told me that I had tense shoulders and stress at work. The symptoms listed above was nothing to them and it was really hard to challenge them because the symptoms made me feel so miserable. At the time I was desperate and already started planning reaching out some hospitals abroad like Mayo Clinic and thought of selling my apartment just to be able to get the diagnosis and then some treatment. But then.. finally maybe after 3 months living with the horrible symptoms above and dozens of visits to doctors they finally ditched the tension neck theory and scanned my spine. They immediately came to the same conclusion that there was/had been a CSF leak. Something that they should have done in the first place in my opinion. The diagnosis didn't help that much though as they couldn't see the exact spot and they really didn't know how to help me. During the past few weeks there had been some improvement and they suggested to just give it a time. No blood patch as there was a chance that it would bring new problems. I decided to give it a time. Even though things were not ok I realized that if I put all my symptoms to a timeline I really had improved. I was back at work and I could do more than just lie down.Slowly I got better and I never took the blood patch. During the summer the headaches subsided and would notify me promptly only if I coughed, sneezed or bent down to pick up something. These would trigger a throbbing headache for a minute or so but that was it. Tinnitus got better as the time went by. It did not disappear completely but got so much better that I rarely pay attention to it nowadays. Nausea, back pain, sensitivity to sounds disappeared. There have been some periods of vertigo/dizziness during the past 2 years but I cannot be 100% sure if those are even related to CSF leak. At least the maneuvers for BPV have helped when it happens. The symptoms just slowly disappeared and the last CSF leak related headache feeling was about a year from the onset of symptoms. For the 2 years after the onset I was quite careful with physical activity. Only swimming and cycling at first but slowly I increased the amount and intensity of exercise and I've been able to get back to my normal activities like doing sports and lifting weights. I don't have the guts to do super heavy weight leg press or deadlift still but I don't mind. I've got my life back.I hope that this would give hope to someone who just got here and doesn't know what to expect. Sometimes just taking it easy might be enough.
9 Comments - Posted Nov 01
Leaker's wife- help!
Hello all. I've been reading through posts and so happy to have this community to find information on such a rare disorder. My husband was diagnosed with a spontaneous csf leak on November 23rd. He had a CT myelogram and blood patch done on the 27th. He suffers from severe positional head pain and double vision. While the patch allowed him to be able to stand now (versus laying flat for weeks prior to diagnosis), he still has constant pain and double vision. He will go in on Friday January 10th for a 2nd blood patch.My question is this: I am not a patient person and I just want my husband to feel better. What kind of timeline can we expect for his recovery? If this patch doesn't help, are there other treatments that we should pursue? Also, does anyone know of a test that can determine if/where a leak is still present that is NOT a CT myelogram? We aren't sure that our doctors are very familiar with this condition. I have loads of follow up questions, but would appreciate any feedback from experienced leakers. Thank you!
5 Comments - Posted Jan 06
A CSF LEAK? HELP! IM SCARED :(
Hi! So I am not sure if this is a leak?Im a 21 year old girl. I had a traumatic spinal tap 1/13/2020. I had post headache and all, the dizziness, the head pounding; whole 9 yards for about 2 weeks. They gave me no instructions in the ER, didn’t tell me to lay down or anything so I didn’t know what to do. I kind of just rested and waiting for symptoms to subside. Did not get a blood patch. (I should’ve lol but doctors didn’t acknowledge it) I did develop POTS like symptoms AFTER the spinal tap/ the hospital visit. Just the fast heart rate while standing. About a month after I started getting ringing in my right ear, my back was still sore, my headache is gone, but there’s pressure in my ears when I stand, muffled. The ringing has improved overtime. (It’s been about 2 months since LP) But really most of the symptoms go away when I lay down obviously. (The ringing didn’t at first but now I barely hear it, it’s more pressure now) I was recently diagnosed with Lyme disease so I had tingling over my body prior to the hospital but now I’m thinking it could be a CSF leak? Current symptoms AFTER THE LP:-head pressure when I sit/stand (No pain but pain later in the day) -muffle hearing when I sit/stand (no pain)-I feel like there’s fluid in my ears? But it’s relived when I lay down -rarely any headaches -POTS like symptoms upon standing (fast heart rate)-ringing in my right ear (high pitched but has gone down in volume to almost nothing) -sore back -twitching/tingling sensations (I thought this was lyme related) -recently I feel like my ears will be wet but they aren’t? It’s jus wax? (Which is super weird) Is it possible to be leaking without the throbbing headache? I had all of leak symptoms for about two weeks and the headache and everything cleared up. No more light sensitivity etc. I do have a weird pressure when I stand in my head and over my ears but it doesn’t really hurt. Sometimes I’ll get a lil headache but usually no pain at all. My back is still sore in the area, About 1-3 pain wise. Is this the road to recovery or an ongoing leak? I really could use advice.Does it take months for symptoms to improve? Or can I still have a leak? I don’t have EDS or any other disorder. I had no problems expect Lyme related prior to this. I never had problems with my spine or anything EVER since my LP I’m going to a UC neurosurgeon in wc Ohio on Monday. I am a kid who advocated for my own health this whole time. I don’t play with my spine. But I just wanted to know what everyone on here thought I should do or what this could be? I feel like it could be a small leak? Or I read chronic leakers have no headaches? Please help :(
25 Comments - Posted Mar 14
Recovery from blood patch
Hi, I’ve just had a blood patch on Monday after discovering 3 leaks on the cervical spine. Since the patch, I’ve been getting headaches while laying down, and I’m unsure why. I wanted to ask how does this process usually go for people as I’m trying to figure out what to expect. I am also seeing recommendations to stay off vitamins? (I take probiotics, calcium with vitamin D3, fish oil and biotin, should I stop?). Thanks for sharing your experiences.
10 Comments - Posted Jun 19