Thanks for this! Having my patch tomorrow, and this was just what I needed to watch.

Just wanted to contribute to your comment section. Thanks for posting your experience. I wish I would have found your video prior to my patch, they definitely down played this experience. I'm on day 3 and very sore!

Really grateful to have someone’s perspective of this before I go in for mine. Thanks so much, really!

@DizzyDazeofLynnea

6 жыл бұрын

It's not comfortable, but it's worth it! Let me know how yours goes!

You are awesome, thanks for sharing. i hope your feeling well! God speed

This calmed me a lot! Did testing for clinical trials back in March which required a catheter to be in my spine for 24 hrs. Still having headaches now in July and on my way to get patched up! I am immediately sent home afterwards though, so that should be interesting. It's so scary how little you're able to do when one of those headache "spikes" hit you so a lot is on the line haha

My wife just had a MVD and now this is a possibility. Thank you.

Thank u for this video, I'll be having a epidural blood patch done in 2 days

I've had 2 failed blood patches, resulting in muscle wastage in my left leg, with knee and hip pain, still have low pressure headache, I'm due to see my neurologist on the 1st September, the anaesthetist hit something on the second attempt this procedure is called a blind blood patch here in the UK. There is always a risk to any procedure, good idea to have the doctor explain and tell you what and when they are doing, unfortunately for me I also caught covid whilst in hospital.

Thx for info. You provided much more info than I was given. I have a CSF leak from lumbar puncture 9 days ago to check pressure & test fluid due to spontaneous intracranial hypertension. blood patch was recommended but because I’m on Coumadin, I need to be off the anti-blood clotting med again for 5 days prior to surgery. I think that if I had been given more info about recovery prior to my lumbar puncture, my recovery would have been different.

@blessing6096

Жыл бұрын

Same here I had a lumbar puncture to test for the sane reasons on Monday and been experiencing severe migraines ever since now in the hospital possible csf leak getting a blood patch in the morning hopefully it works

Had mylogram 5 days ago and I have had a terrible headache constantly since the procedure. Going tomorrow to ER for Blood Patch. I hope to never need another mylogram. Thank you for your video.

@amysho2192

Жыл бұрын

So sorry to hear. Hugs to you. I regret ever getting my spinal tap. On my 2nd blood patch. My head pains are so sharp and consistent. And now I have light sensitivity too...didn't have it before! But hey, it's just day 1.

good guide. did you tried any foods to solve it? does it work

Dang girl you're a warrior

I'm having a blood patch done tomorrow, and I'm terrified.

What about fibrin glue ? Know its used at Duke leak program.

Damn girl you are brave.

Hey if an epidural steroid injection caused your leak ? Typically during the arduous L5 procedure I'm guessing. There something available new without patches at all.

Have you been tested for Lupus? Wow I think that I might have possible leaks ...

How have you been since this video?

I am having one in two weeks did it hurt?

Thank you just had mine done I was worried about the after.. My back is tight and sore... But it's better than the migraine I got from the spinal tap 😭

@jweafer4883

3 жыл бұрын

How long did your headaches last from the spinal tap?

@raenavanschoiack110

3 жыл бұрын

@@jweafer4883 i had to get a blood patch... Then it took about a week to go away 😭.. But the doc said more I drink the more my fluid will fill back up around my brain...

@jweafer4883

3 жыл бұрын

@@raenavanschoiack110 thanks for the reply yeah it’s been a week since I got the spinal tap and still have much less severe headaches than a week ago but just letting it run it’s course I suppose hopefully just be ok in a few days time

@raenavanschoiack110

3 жыл бұрын

@@jweafer4883 I'll pray for you... They told me to eat chocolate and drink mountain dew.... But mine was the worst migraine I ever had in my life... I was sick.. Shaking.. Couldn't walk.. Dizzy... I even cried.. I felt like I was going to die... After the blood patch took me a few more days to get right... And I did everything they told me to do... Best luck to you hope your headache goes away ❤

@Stealth_Rider91

2 жыл бұрын

@@raenavanschoiack110 Please pray for me. My name is Nick. I'm having the same issue as the person above you. I got my lumbar puncture 6 days ago because I got the headache from Covid and I'm still having severe headaches.

I might have to get this done. I'm so terrified. I've already been through so much 😮‍💨 Kudos for getting through it. I dunno if I can but I'm suffering.

@amysho2192

Жыл бұрын

Hope it went OK if you did it!!

I'm having my first blood patch after having a screw go into my spinal canal. They did a graft during surgery but have continued to leak 1cm of fluid each week since. I'll having to fly from Hawaii to CA to have this done. Were you admitted into the hospital the first day? How long before they discovered you needed another blood patch?

@DizzyDazeofLynnea

Жыл бұрын

For Blood Patches it was a same day procedure. Since I didn't live in the area I was having them done in I usually stayed in a hotel for a minimum of 24 hrs post procedure so that we were close in case something went wrong. Mostly it was to make sure that patch took before going back home. I had a unique case were my leak was due to a venous plexus issue so I had patches every one to two months until I eventually had surgery in 2020. If you are coming from Hawaii they may offer to have you stay the night but I am not sure. I do recommend hunkering down for a few days afterwards. Hope this helps

Wow thank you! I just had a 2nd blood patch today (but in lumbar) and wow you really explained things so well! I didn't understand why I was instructed to lie down. Do you think it's OK to sleep on my stomach?, I may have EDS, so it would make sense that it didn't take the first time and that I had the spinalntap leak. I am happy to hear if someone else who had tinnitis. I am having very sharp head pains while laying down...stabbing pains in right temple and forehead areas. Ouch! I am so scared I didn't permanent damage. My back huts SO bad if I move my legs or back. I'm a big baby too. Haha.

@DizzyDazeofLynnea

Жыл бұрын

Sorry for my late reply. Believe it or not pain in the temples and forehead is actually indicative of positive CSF pressure, so it sounds like as of the time you wrote this, your patch was holding. Crossing my fingers for you that it was successful. If you have to have another one in the future, I know that I slept on my stomach before because it still kept my spine in line, so I would say it is up to the discretion of you and your doctor. The back pain you are experiencing is also unfortunately normal. The epidural space of your spine is not meant to have blood/ and/or/ fibrin in there so it can irritate the nerves, but they should calm down with time. Hope this helps!

@susanyoung8449

Жыл бұрын

How do you know of the patch dislodged??

@amysho2192

Жыл бұрын

​@@DizzyDazeofLynneathanks for that info about blood or fibrin irritating the nerves. It's been 6 months now since that blood patch and I still have severe back pain. It changed my entire life. They have no clue why my back hurts. Nobody has told me anything. They won't answer my questions about the sharp pains and spasms I have beside my injection site... It's been slowly spreading around to my sides and is even starting to go into the front. Idk how much more damage will be done. I cannot even stand more than a couple minutes due to the pain days. Pain is almost all I can think about. On a positive note, at least the leak was stopped. But I would really like to message you. I have questions you may be knowledgeable about. I had an EMG and in my leg muscle, it picked up radiculopathy from L3/L4. I asked my physiatrist about it and he said that since my MRI was fine, that the radiculopathy is from an old injury. (But I have never had any back pain in my life til the blood patch incident.) The physiatrist works for the same medical group as the doctor who oversaw my blood patches. I wonder if they try to cover for each other? I'm super confused and I just want to either get better or get information and documentation in case I need surgery or have to get on disability. I cannot work like this.

@HanieletNickle

8 ай бұрын

@@amysho2192 may i know where is. Your leak? And how many blood patches did they do before the symptoms got resolved?

And why are you standing if you're going to have another blood patch?

You are a warrior a queen only us leakers know how this feels. I cry myself to sleep everyday. I cry all the time no one believes me my parents plan on not helping me anymore i am scared. My bf is all i have left and the lord. I have evidence of my leak on my Channel.

@catherinenelson4162

3 жыл бұрын

Who is your Doctor? What medical facility? Yes, I'm asking for myself. I'm quite sure I can't get this done in my state. Thank you for posting this.

@animallover8779

3 жыл бұрын

@@catherinenelson4162 I went to the hospital said I was fine went to several places said I was fine but I am sure I am leaking I even have it on video.

@animallover8779

3 жыл бұрын

I am planning on showing them the video of me leaking but they won't let me

@animallover8779

3 жыл бұрын

I switched doctors like 5 or six times. I am tired of being this way.

@animallover8779

3 жыл бұрын

@@catherinenelson4162 they treat these things at cedars sinai or duke they are both in california depends if its cranial or spinal. If it is spinal it's duke and cranial cedars sinai. There are other places but those too are the best.

😖 dang LP to find a leak causes a leak? I hear it often. I'm still scared

@Traceyi1000

5 жыл бұрын

I was supposed to have a blood patch today and was too sick to get to the hospital. Had LP last Wednesday and having horrible headache.

how bad are headaches and what if your back doesn't hurt as much. I'm scared and don't know if I need a blood patch..helpp!!!

@DizzyDazeofLynnea

4 жыл бұрын

Everyone's symptoms and pain levels are different. For me, pain is one of my primary leaker symptoms, usual ranging on average about 7 to 8 out of 10 on a pain scale, but not everyone is this way. I also experience neurological symptoms that indicate I am leaking. I would speak with your doctor and discuss your symptoms in order to determine whether or not you need a patch. On the bright side if you are in need of a patch and it works, you will feel MUCH better!

A huge problem on leak channels. Comment's are turned off typically. It makes the doctors seem like liar's.

I get a medication through lumbar puncture every 4 months, and more often than not I have gotten a headache afterwards. I haven't had to have a blood patch yet, but thank you for sharing. How are you functioning with the pain? I'm okay lying down, but after sitting up for awhile I start having a hard time.

@DizzyDazeofLynnea

5 жыл бұрын

My I ask why you have these injections. My best guess would be you leaking a bit after the procedure before it seals itself and heals over. I function because I have too. I am to driven to sit down and take it more often than not so often I push myself slightly beyond my limits in order to accomplish a goal. That being said, if my pain starts to become overwhelming I usually take Gabapentin and Ibuprofen. I only take opiod pain medication if I am truly at the end of my rope, pain tolerance wise, due to the fact I have watch more than one of my family members become addicted to them, so I am very wary about taking them.

@CourtneyFrazer

5 жыл бұрын

@@DizzyDazeofLynnea I have SMA type 3, so the injections help to stop the progression of the disease.

@DizzyDazeofLynnea

5 жыл бұрын

@@CourtneyFrazer OUCH.

@CourtneyFrazer

5 жыл бұрын

@@DizzyDazeofLynnea Do you work with your condition if you don't mind me asking? My biggest concern is the time I have to take off work when a headache hits after the procedure

@DizzyDazeofLynnea

5 жыл бұрын

@@CourtneyFrazer I do work, and yes it can be stressful trying to cover time off. A lot of the time I will try switch days with someone (their thursday for my monday, etc). That way the shift is covered and I don't lose money. I also would use my personal leave or sick leave as medical leave. Recently I was applicable for FMLA (Family and Medical Leave Act) at my place of work so I don't have to worry about missing work as much, although I still do to a point. FMLA gives you protection by law (can't fire you because of your disability, etc) I have worked with my HR department to provide me with reasonable accomidations. If you are working or are interested in working I would definitely see if your workplace can provide you with similar services.

I had a myelogram done 11/16/2020 and blood patch done 11/19/2020at the hospital they didn’t give me any antibiotics pain pills nor muscle relaxer and I’ve been in severe pain I h can’t even stand up str8.

@sharonmakuyahundi.kappich8613

2 жыл бұрын

Sorry

@MRIDDLE72

2 жыл бұрын

Hey miss, how you doing? I just had patch done and I feel horrible. My back and neck are shot

@nequanaross425

2 жыл бұрын

@@MRIDDLE72 I’m sorry I’m late seeing this. I was in bed all day that day. It helped but that pain after was so bad.

@nequanaross425

2 жыл бұрын

@@MRIDDLE72 Hello sorry I’m late replying, I’m ok I goes to pain management in August hopefully that helps but I been to different doctors nothing has helped they want prescribe me any strong pain pills bc to many pple abuse them for other purposes. But hopefully pain management gives me some relief. I hope you get better bc I know your pain all to well.

Are you also hyper flexible?? It’s crazy how many get Pots with CSF leaks

@HanieletNickle

9 ай бұрын

My pots symptoms started after lumbar puncture 😢 done w 2 blood patch still the symptoms was not resolve wondering how many blood patch do i need before the pots symptoms go away😢

Where did you have your procedure done? I also had a spontaneous CSF leak caused by connective tissue disorder and have had 3 patches

@DizzyDazeofLynnea

6 жыл бұрын

Kelly Cotter I have mine done at Stanford Medical

@kellyc9304

6 жыл бұрын

Dizzy Daze of Lynnea Have you recovered?

@DizzyDazeofLynnea

6 жыл бұрын

From my Leaks? Unfortunately, no. My symptoms have improved but I am still actively leaking. My spine is being as stubborn as I am 😜 I have two more patches scheduled in June and July

@kellyc9304

6 жыл бұрын

Dizzy Daze of Lynnea wow...i hope they work! That's a long way out. How did you know your leak was still active?

@DizzyDazeofLynnea

6 жыл бұрын

Symptoms. Still have moderate to severe pain in my neck and between my shoulders, still have tomorrow in my ears, Dysautonomia continues to cause more issues than it used to, still have memory problems 😉

Do you think marijuana use would affect this ? Thanks in advance

@DizzyDazeofLynnea

5 жыл бұрын

In what way and for what purpose? Would marijauna affect the pain level post-patch, or for the leaks in general? I don't know. I work in a profession where I am randomly drug tested, and since I have Dysautonomia and occasionaly have episodes at work, I get drug tested more than most XD Although marijauna is legal in my state, it is still not legal within healthcare, although it depends on the astablishment. I work in a hospital, so I am not allowed to have the opportunity to see if it helps. That being said, I do have a person in my life who suffers from severe nerve pain and suffers some similar symptoms to mine, and they have reported it makes a world of a difference.

I had one before and they used blood from my arm

@DizzyDazeofLynnea

5 жыл бұрын

My left arm is useless because my vein is covered by my tenson, which is why they use the EJ, which I've learned since making the video is not all that common. I should put a note on the video about that..... thank you for bringing it to my attention!

@kevyanaeast4059

Жыл бұрын

Did it work ?

Never get a spinal tap it has ruined my life

@kempfamilytelevision2139

3 жыл бұрын

Are you still having side effects because I have to have one done

@Deadtrees15

3 жыл бұрын

Kemp Family Television my coordination is off and I have a pinched nerve in my leg. Occasional hearing loss. My head is heavy and I’m tired a lot.

@Deadtrees15

3 жыл бұрын

The back and head pain is indescribable. The numbing meds don’t work.

@Deadtrees15

3 жыл бұрын

Kemp Family Television also make sure they do it with an xray

@Arsonloke

3 жыл бұрын

It ruined my wifes life she had one a year ago and has never been the same

Thank you so much for this. I go in for my 2nd blood patch under fluroscopy today. Im so scared:(

@DizzyDazeofLynnea

6 жыл бұрын

Blood patches are no fun, but if they fix the leak, it’s worth it. My next patch will be at the end of March. You got this!! Sending good vibes your way, and let me know how it goes!

@Kimberlyelayyne

6 жыл бұрын

Dizzy Daze of Lynnea i just have some vertigo. Did you have that?? Thank you!

@DizzyDazeofLynnea

6 жыл бұрын

Kimberly Elayyne I did have vertigo after my first blood patch for sure. I didn’t notice it as much after my second on but I think everyone is different.

Wow this is so interesting! I had a CSF leak caused by an emergency LP and had a blood patch yesterday in hospital. I was kept in bed for 2 hours and then was told to sit up and stay up! Im in so much pain

@DizzyDazeofLynnea

5 жыл бұрын

What in the world were they thinking? Did they say why they wanted you to remain upright? Most hospitals recommend you lie flat for a minimum of 24 hrs post patch in order to let the patch set up, usually lying flat for two hrs (likely at the hospital) and then spending the remainder of the day in bed, resting. Stanford is even stricter than that, with 2hrs lying down in the hospital, and another 72 hr bed rest period after that. I hope the pain eases up soon. In my experience, the worst of the blood patching pain eases up after 3 or so days. If you are still experiencing severe pain in your neck or between your shoulders after a few weeks it is likely the patch failed. According to Stanford guidelines, patients or most likely to experience the full results of the patch 4- 6 weeks post-patch. In short, follow your gut. Hopefully this patch works, but if it doesn't keep pushing! Hang in there!

@Traceyi1000

5 жыл бұрын

Good Lord how are you doing?

Does it hurts im scare

@DizzyDazeofLynnea

6 жыл бұрын

I would not say that it is incredibley comfortable, but in comparison to my CT myelogram, it is a breeze. For me the most painful part is the needle in my neck, but they may not do that for you. My left arm doesn't have any usable veins, so in your case you may just get IVs in both arms. They will be giving you several different medications that really help with the process, including anti-anxiety medication, and pain medication, both of which help you relax during the patch. For me, when they are performing the blood patch, I can feel firm pressure in my back, but because of the pain medication, I don't feel any pain. After the blood patches, I don't usually take pain medication because I am more sore than anything else. They DID prescribe me pain medication and nausea medication so I wouldn't worry too much about access to pain control. Everyone has different pain tolerances, but it my opinion, it isn't fun, but it shouldn't be incredibley painful. I've made videos on the last two patches I've had, under the names "Blood Patch" & "Blood Patch and the First 72 Hours", which shows footage of me right after both procedures, so maybe watching them will ease some of your fears? You are completely within your rights to be afraid. I still get a little scared and anxious before each one, despite the fact I've had the procedure done twice. I remind myself that its worth it and I will feel better, which helps me get through it. You will do great!

I have a leak and still not helped the doctors keep telling me its anxiety and depression and I take antidepressants and anxiety meds

@DizzyDazeofLynnea

4 жыл бұрын

Yeaaaa they tried to do that to me too. Told me depression was the reason I was developing a limp. Keep pushing and don't be afraid to switch doctors or go to hospitals farther away that stay under your insurance umbrella

@animallover8779

4 жыл бұрын

@@DizzyDazeofLynnea I already feel like my brain is going to dry out my parents wont helpn me either. I will keep pushing

@DizzyDazeofLynnea

4 жыл бұрын

I'm sorry. 😞Unsupportive parents make everything harder. How did you find out you had a leak?

@animallover8779

4 жыл бұрын

@@DizzyDazeofLynnea I dont have it confirmed but I show symtopms of a leak and cant do anything rn. My mom is very ill rn and feels similar sytomps but she has a broken back. I cant find anyone to help me in my town they tell me I am crazy and the doctors keep fighting with me and laugh at my face. I am so done with everything not to mention my bf cheating on me. Said I cant please him anymore so he cheated. I am still seeking treatment for my leak. I cry and try not think about it.

@DizzyDazeofLynnea

4 жыл бұрын

@@animallover8779 If he can not act like an adult, then you are better off without him. Cheating is unacceptable and you are better of without him. I live in a small town and they didn't believe me either. If your parents won't help unfortunately will likely have to do the legwork on your own. Do what you can to get refered to someone with experience in CSF leaks, so your research and don't be afraid to bring print outs of official scientific articles to back up your argument

Can you be unconscious?

@DizzyDazeofLynnea

2 жыл бұрын

I myself have never completely lost consciousness, except on the tilt table test but I do know of people who loss consciousness every time

Listening to aill this makes me feel nails on chalkboad!!!had to quit in the first couple minutes.

@rosaliewolicki4102

2 жыл бұрын

Isn't there an easier procedure than a blood patch?