Multiple Sclerosis Community
Spinal headache, failed blood patch, now what?
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Spinal headache, failed blood patch, now what?

Hi all, Got the nasty headache, had a blood patch done on Friday.  Worst thing I have EVER been through, that blood patch.  It was worse than the tap.  Anyway, it did not work. (I am flat on my back as I type this thanks to my trusty laptop and a bunch of pillows.)  What now?  Do I just wait it out?  It's getting pretty old.  I even asked for vicodin, which I never take but the pain is unbearable.  I'm so bummed.  Amy
Related Discussions
33 Comments Post a Comment
Blank
195469_tn?1388326488
Oh Amy,

I am so sorry to hear that you are in the brunt of this LP headache.  Drink alot of fluid and add some caffiene products.  Lay flat as much as possible.  My headache lasted 5 days with the blood patch and eventually my cerebral spinal fluid stablilizied and the headache disppeared.

If you still feel this bad on Monday,  I would call your doctor.

I am SO SORRY and I really do understand how bad you are hurting.  Did you start doing your regular activites too quickly after the tap?  This is what happened to me.  Sometimes things like this remind me that I am NOT wonder woman.

Please take care of yourself.  Prayers going up for you, sweetheart.  I'm here for you.

Heather
Blank
195469_tn?1388326488
I did NOT have a blood patch...I chaulked mine up to doing too much too soon.
Blank
Avatar_f_tn
You are right there for me woman.  I stayed down Mon - thursday; called neuro thursday and had blood patch on Fri.  (Again by "Dr. cute stuff" but by now of course I looked like Mrs. "death on a stick".)  Worst day of headache was saturday, but my pcp said that had nothing to do with the patch.  The tap was easy; I will never ever do a blood patch again.  Love to you, Amy
Blank
147426_tn?1317269232
The headache will eventually wear of.  Sometimes the patch takes a few days to seal completely.  Sometimes a second patch is needed, but I see that that would not be a consideration.  I suspect you'll be feeling better by tomorrow.

I had a horribly botched spinal anesthesia in 1983 - more than a dozen pokes by an incompetent anesthesiologist and three full injections of anesthetic.  I had a severe headache, relieved partially by the patch.  The headache resolved gradually over the next six weeks.  That is really worst case scenario.  The doc was using a needle that was too big and didn't know when to stop trying.  My suregeon was furious and formally complained about the guy who lost his position with the hospital.

I glad it's over.  Quix
Blank
335728_tn?1331418012
Oh Amy, I am so sorry that you are feeling SO rotten and if there was anything I could do you take it away I would!  I have had the LP headache (real bad for 3 days) and if it is anything like that I certainly do feel for you!  I hope that this pain does not continue for you and that you start to feel better really soon!
If it's any consolation, I have a toothache that is making me want to bang my head against the wall or pull the bloody thing myself!  Does it help that I am feeling your pain for you through my tooth! tee hee
I really wish the best for you Amy and I hope that it will be over soon for you!  You know I was thinking that wouldn't post LP Pain and the pain from a toothache be a good deterent for criminals...just hold that over their head instead of jail time with a warm cell and 3 squares...hmmm, maybe I am on to something???  ha ha ha  
Anyway, good luck Amy and feel better soon ok?

Lots of Hugs,

Rena705
Blank
Avatar_f_tn
Thank you Quix, you have given me hope.  And thank you Rena, you made me laugh!  God bless you, I will make it through this.  There are people dealing with more!  Amy
Blank
246236_tn?1275482502
Oh, I HATED (!!!) that blood batch!  You're right, the LP was nothing compared to that!  I felt like I couldn't breathe and had so much pain radiate immediates up through my chest and down through my legs!  Fortunately, mine worked and the headache went away.  I'm sorry you're still struggling!  Angela
Blank
220917_tn?1309788081
Oh, no.  I'm so sorry you're suffering with a headache, Amy.  You have too much going on.  What are we going to do with you?  I suppose just throw you at the mercy of Dr. Cute Stuff -- once you get your hair and make-up refreshed.  Throw me, too.  You just may need some support.  What can I say, I will sacrifice for my friends....

Anyway, I hope the headache gets better quickly, girl.  Hang in there.  Prayers up.

Rena -- I checked around, and it actually DOES count that you have a toothache in this vicarious pain consolation for Amy.  Good going!  That or childbirth is about the only thing that is close, it turns out -- or a kidney stone.   Great friend -- hope you're better, but I just read another post that says you're not.  Hang tough, Cookie!

Feel well, Heather, Q, and Angela!

Zilla*
Blank
Avatar_n_tn
Wow, I had an epidural 7/12 when i had my daughter. They went to far also and fluid leaked out. 2 days after i got my blood patch, it did not work AT ALL! was horrible. Stayed in bed for a while week waitin it out. i couldnt even walk to the bathroom! I would have to crawl it hurt so bad. And now, 10 weeks later it feels as if I have been gettin the spinal headaches again! They dont feel like regular headaches or migraines but just like the spinal headaches. I have no clue what to do..

Crystal
Blank
Avatar_n_tn
I feel for u.. I have had my spinal headache's for 3 yrs and i have never done a blood patch because i am 2 scared... AS time goes on it will get a little better...
Blank
Avatar_f_tn
hey all,
I too am suffering from a post-spinal headache... Had a LP on 04/01 & the 1st blood patch on 04/05 (2nd one today 05/12). I feel like death! My headache is worse after todays BP & I didn't think that was possible!
Apparently these headaches can last anywhere from a few days, to a few months, & even a few years! I think the longest case is 8 YEARS!
Amy, I really hope you start feeling better soon!
Sincerely,
Crystal
Blank
198419_tn?1360245956
Hi there,

You happened upon an old post.

If you can, please post your question using the green post a question button. I'm afraid all won't see you here.

If you see this response, please know I'm so sorry you have the headache! Does it subside when you lay down? If so, it most likely is the dreaded leak.

Call the Dr. and in the meantime, stay flat as long as you can, drink plenty of fluid for at least 24 hours - there is a chance for it to heal that way. The other alternative to the leak is to go for the blood patch, but the Dr. who set up the LP should know what you are going through right away and provide recommendation....

Thanks for joining us!
-shell
Blank
Avatar_m_tn
okay everyone, i had a LP last week Wednesday, and went to the E.R. on Sunday. The blood patch to me wasnt bad at all, but I was drugged up from whatever they put in my i.v. so there wasnt too much pain at all. Now I am feeling light headed and my back is still sore. I have to take tylenol which I've never had to take before in my life. My head still hurts but sooooo mildly compared to what it was, one tylenol does the trick, where as the LP made me walk around like a turtle trying to hide my head into my shoulders. Kisses to all of you that are experiencing the pain and severe frustration of not being able to move from the couch or bed. I was there with ya, and I hope I NEVER have to do that again..LP that is...blood patch was a relief (okay somewhat of a relief) smiles!
Blank
Avatar_n_tn
Hi everyone,
I had a lumbar puncture done 2 1/2months ago, and got tinnitus in both ears the day after. I didn´t have a headache, but severe neck pain. Today I still have tinnitus, and my doctor says that a blood-patch won´t resolve that problem and therefor won´t give me one. Anyone have heard or have experienced same problem. Going crazy here:) Thanks a lot.
Blank
Avatar_m_tn
I had that along with the headache. They told me that the neck pain and shoulder pain that I had was not associated with a spinal headache. After taking a muscle relaxer and throwing up they decided to do the blood patch and all pain subsided immediately. However now a couple of weeks later it looks like the pain has returned.
Blank
Avatar_f_tn
Amy,
How did it go?  I am on the same boat as you?
PLEASE REPLY FAST!!  How long did it take for headache to go away after the blood patch?
Blank
Avatar_f_tn
had a lp on tues, did blood patch on thurs, i have a history of migraines and when they said headache was a side affecti knew i should have decided against lp. I cant believe how bad a spinal headache is, worse than any migraine i have ever had. the day after blood patch my headache was worse then before, it is saturday now, it has eased up a little but one fast move and i will be sorry. have been laying on my back for 5 days, certainly cant stay this way forever, dread when its time to take the dog out. i feel for anyone who has had lp, but why dont they just do a blood patch right when the do the lp, it would seem to make more sense then waiting for someone to suffer.
Blank
1902049_tn?1321627632
Hi!
I Just had spinal injections done last Friday and have had a spinal Headache for 1 week now! I went to my family Dr. to be evaluated as I did not want to go back to the Dr. who hurt me with over 40 min.of extreamly painful injections ( over 20 )  I was the most painful procedure I have ever experenced in my life!
I went o my My Family Dr.and he had me lay flat on my back for a week and now he is sending me for a blood patch today that hopefully will work and take this incredibule pain away! After reading all these reports I am not to hopeful about the results! I hope You Feel Better Soon!
                           Blessings!
Bruce McCabe
Blank
Avatar_f_tn
Just had a Lp/st/lumbar puncture/spinal tap done on Friday the 22nd  and I know they say it takes three days minimum for you to know you have a spinal leak....but I knew Friday night......not by the headaches (that came slowly on Saturday) but by other symptoms......and best advice I can give you its go to the BEST Emergency room/hospital in your area they will admidt you........ put you on iv pump meds (that won't help but they will knock you out some so you can get a lil rest not sleep) but the point is THEY WILL DO THE BLOOD PATCH THERE AND IT WILL WORK .......sounds to me like you have had some bad docs and trust me so did I .....and I had no resources with the same types of thing or circumferences that I had and so because of that I am going out on a limb and putting my email on here AND FOR ALL YOU CREEPS/PERVES//PSYCHOS ECT......I have two just like you no wait worse here at home with me WHO LOVE ME VERY MUCH AND UNFORTUNATELY DO BEFORE THEY THINK...ONE BEING ALSO A COMPUTER GENIUS SO PLSPLS
PLS don't try it it is not worth your time not here.....Amyloo....email me PS put in the sub its you lol
Blank
Avatar_f_tn
I just received the epidural injection in my neck on Friday and Saturday I woke up with the worst headache of my life. I got a blood patch done and it did not work. Are they supposed to inject the blood patch where they put the epidural injection? My injection was in the back of my neck and they put the blood patch through my lower back? This does not sound right to me. I've been in tears with this headache for almost a week now. I just recently started an peal steroid the dr. Put me on today. Any help?
Blank
572651_tn?1333939396
Hi tiffp- sorry you are in such pain.  My understanding is the blood is injected in the area where the leak is occuring.  Call you doctor and let them know it didn't work and you need to have it done again.

I'm sorry you are in agony....
Blank
Avatar_f_tn
i had an epidural the fifteenth of August and the next day had a head ache threw my neck up to the front of my head.  they sent me home unable to even hold my newborn baby.  breastfeeding is terrible if he does not latch rite on hearing him cry i so painful to hear. light hurts my eyes terribly, also walking to the bathroom is so painful.  by the time i get back to the bed im in tears!  i heard from relatives, not the hospital, about the blood patch and asked questions.  i got a blood patch the 18th and had immediate relief.  then on the 20th my symptoms came back slowly and i went to get a second blood patch that night.  it eased the pain mostly not all the way, then when i woke up the next day (today) it is hard to walk to the bathroom again and all my symptoms are slowly coming back. i called my family doctor an she had her nurse call me back an say if the 2nd patch did not work then it is not from spinal leakage.  but if it was not from spinal leakage then why would it have releived the pain for some time?  i dont understand, is there any chance that i could still heal from the second blood patch? is there anything i can do besides lay on my back and drink caffeine??  any insite or opinions would be great thank you.

Megan
Blank
Avatar_m_tn
how has some of your spinal headches started? were these procedures thats you all had to undergo or was it caused by something that went wrong? Karyn
Blank
Avatar_n_tn
Amy,
I feel for you.  I went through the same thing a few weeks ago.  The headache is unreal.  It took 5 days laying flat until I began to feel better.  They wanted to do a blood patch but I said , "no way, no one is coming near my spine again".  Anyway, because I work in the medical field (Nurse Practitioner) and have connections, I was advised to do a few things such as drink caffeine, eat salty foods (pulls fluid back into the vascular system) and drink fluids.  Other than that, there is not much else you can do but ride it out.
Good luck and I hope you feel better soon.
CG
Blank
Avatar_f_tn
are you ok now?
Blank
1831849_tn?1383231992
Hi fatim114 -
The post to which you responded is over 3 years old. Just didn't want you to get the wrong idea about us if she didn't respond :-)
Kyle





Blank
Avatar_m_tn
Hi there. My wife has been suffering from these migranes (migraines) for 2 and a half years :( we are broken :( she gave birth to my beautiful son Logan 2 and a half years ago, but the epidural took 3 goes and caused spinal leak. She was bed ridden for the first 10 days in hospital then sent home with caffeine tablets. We complained to the hospital so they performed a blood patch which did work. However 6 months later they came back :( then they would go after she spent a few days in bed... Then 3 months later would come back again... Doctors said she has to learn to live with and prescribed heavy medication (useless) the period between the attacks started getting closer. this went on for 2 years. and closer and 3 months ago she fainted on me and started fitting :( we went to a private hospital where we copped a sarcastic desk nurse who told my wife she was putting it on (she is very lucky I didn't pull her head through the glass. They put her on fluids over night then she came home. They suggested a lumbar puncture to see what was going on with the spinal fluid but due to her bad experience my wife didn't want to do it. 1 month ago she had no choice!! She fainted again and convulsed this time loosing her speech and whole right side of the Body numb :( hospitalised for 14 days did lumbar punture found her fluids had emptied and very lucky no brain damaged!! They,performed a blood patch put her on 4 hours lying flat, 2 night stay and sent her home!! It's now been 2 weeks and the horrible migranes (migraines) are here :( I'm worried I am going to loose my wife to suicide now please someone help me give her more hope!!!!!!!:( she is booked in for a blood patch on Tuesday next week someone please please tell me their second one worked!!!!
Blank
3054080_tn?1358726456
I just wanted to welcome you and express that I am so sorry your wife is suffering so. She is very lucky to have such a supportive husband.

You are replying to a very old post. I realize that most forum protocol is to not start a new thread on an existing topic. However, here it is a little different.

If you copy your post and then click on the Ask a Question button and paste it there it will show up at the top as a new question and people will see it.

I wish I had some useful advice but know that I am praying for you and your wife.

Blessings,
Minnie
Blank
Avatar_n_tn
Hey my wife has the same symptoms. The blood patch worked for a day, and the pain/stiffness has returned. Did you ever get any better?
Blank
Avatar_m_tn
Thank you very much Minnie! I will do that now!! It's 5 days after the bloodpatch and only a little bit of improvement, but it's a start! I've kept our son at her mums house for 4 nights in a row so she gets complete rest but he is with us today! So that's lifted her spirits :) really hoping the next week gives her results! Thank you very much
Blank
6366979_tn?1380673124
I had a myelogram done last week and it was terrible. Having the needle in my spine to inject dye was awful, the hole never healed and I started leaking spinal fluid. I got really sick for a few days and ended up in the emergency room. They had to do a blood patch on me. I stayed in bed for many days because I was in so much pain. My headaches got a bit better. I am still not feeling the greatest. Today was my first day up and about and I am completely exhausted. I am hoping my patch holds because I do not want to go through that again. I go back to work tomorrow and I am nervous a bit because I do not know how my body will handle working (I work in childcare). I would not wish this on my worst enemy.
Blank
Avatar_m_tn
I recently had a routine epidural procedure involving cortisone to relieve herniated disc symptoms and review several benign spinal tuors, using a contrast material (dye).

Unfortunately my practitioner nicked the dual and I ended up in Accident and Emergency Department for 36 hours lying on a gerny waiting for a blood patch. Initially, they thought it was chemically induced Meningitis (from the contrast material). After a battery of tests including MRI, blood work and multiple doctors consulting (neurological specialists and anathetatists) they decided to do the first blood patch. 25cc of my own blood injected back into around the affected area (just below).

Within a few hours I felt some improvement and they released me the next morning. I took it easy for a day and then being an architect went back to work. I didn't carry out anything too strenuous (that I was aware of?) but within another 3 days I was back in A and E Department waiting for a second blood patch.

I agree with everyone here. They are excruciating procedures. I had 25cc of my own blood injected into around the affected area (this time a little higher with the thinking the blood will trickle down due to gravity and collect on the Dura.)

Again I found relief. But there was far more consultation the second time around. The anathetatists were reluctant to carry out a second procedure for the following reasons:

With every procedure there is a risk of infection in a precarious location of the body. An infection here can be catastrophic.
The presence of cortisone negates the effects of the blood patch. The cortisone is there to avoid inflammation and yet the blood patch relies on clotting.
As a male with large inter-vertabrae spaces, the likelihood of clotting is less. The clotting relies on tighter spaces to collect and congeal.
The cortisone lowers the immune response.
The cortisone masks the initial symptoms making detection slower.

But with so many other risks like continual CSF leakage creating pressure on the brain, bruising and potential blood clots and stroke... I finally yielded to the second patch.

It's early days, as it's currently Monday and the patch was put in on Saturday night. But there is improvement. I spent almost all of Sunday on my back. I will try sitting up today but advised not to do any heavy lifting for at least three weeks (<3kg). The anethatists suggested longer. But the neurological specialists suggested 3 weeks and then ease back into things. The patch should have taken by then. But to drink lots of water (hydrating the brain), lots of coffee (as it is suggested to reduce the production of CSF) and try to avoid anything strenuous.

There is still pressure on my lower back which is considered normal. In fact it's critical that there is... Ideally, with this pressure the clot will eventually form over the Dura. There is a little neurological irritation which is typical too. Some tingling in the buttocks and lower back. Nothing debilitating though. All should subside in a week?

The whole ordeal has been almost two weeks. The headaches, photophobia and nausea associated with the initial leak were awful. We all know that from what I have read here. For what it's worth I can truly empathize. Let's face it, if the headaches were mild none of us would have endured such an excruciating procedure as a blood patch. No way!

But the statistics for the initial patch working is around 80%. But that doesn't take into account the presence of cortisone. A second patch success rate is around 90%. Again, not taking into account the presence of cortisone. But there are some alarming statistics on infection with more and more procedures.

I was in some way lucky to be treated through our public system here in Australia. Even though I am a private insurance holder. I truly believe it was better to be treated publicly. I had access to more doctors, more equipment and tests in a shorter space of time, I still go a single room ALL at no cost! Yes, that's the beauty of the public system in Australia. MRI's, bloods, two procedures, countless IV's, doctors and specialists around the clock and quite frankly, pretty darn good care by all. I asked myself why I would use private again after all this? It was in a private hospital where the initial procedure which created this whole problem occurred. It was the private hospital staff that ushered me away to the public Accident and Emergency Department when things appeared very wrong. It was in a public hospital where it was more carefully attended to... And hopefully, the second time around?... Resolved. The Australian public health system in this instance was very good. Sure there was more waiting involved. But the care, attention and no out of pocket expenses was reassuring.

I have even more pressure to be well as after 10 years of saving and planning my wife and I have a ski trip to Canada in February. It's end of November now. With a bit of luck, the patch takes and I can try to recommence training for the trip? Otherwise, it's out for me and I will no doubt spend the rest of my days cursing these past two week's events. Sighs.

I feel so much better reading this forum and all of the accounts. I can truly empathize. Despite having slightly different circumstances, there are similarities to take heart from.

I sincerely hope we all make a full recovery without complications. I will keep you posted on progress if it assists anyone else through their trials and tribulations?

What I understand is any Epidural procedure requires surgical precision and very specific techniques to avoid damage to the spinal cord and dura. It can be achieved with high success rate... But we all know here that if you're in the other side of the percentages, it's little consolation.

I know that for any patch to work aggressive rest and horizontal positioning for at least the first day is critical. Avoiding strenuous exercise is also critical for the first week. But while experienced in the symptoms I am simply paraphrasing the advice of the practioners regarding the post-procedural recovery.

I have fingers and toes crossed.

I will not have a third a blood patch. Instead, consider passive, non-invasive alternatives. The risks are too high for me.

I hope this helps others here?

Regards,

Raj.

Blank
5651726_tn?1384898555
The radiologist bungled my spinal tap, hitting a bundle of nerves, causing me to lurch, which then likely enlarged the entry hole.  They only kept me flat for about 45 minutes and sent me home where I was nauseated and vomiting despite remaining flat for days.  Incredibly, they couldn't relate my sickness to its obvious reason - the spinal tap.  On my third ER visit after the spinal tap I demanded a blood patch.  They followed poor technique to get the blood, starting higher up on my arm and working their way down until they finally got into a vein - which collapsed after their taking just a little blood.  I worried that might not be enough blood to cause the desired clotting - but, fortunately, it was enough.  Again, I got up soon after the blood patch (an hour later) but within 20 minutes of getting the blood patch I knew it was a success because I felt the symptoms subsiding.  What may have happened with your initial blood patch was possibly not enough blood was injected.  I will NEVER have another spinal tap!!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Neurology Answerers
572651_tn?1333939396
Blank
Lulu54
Dayton, OH
Avatar_f_tn
Blank
SarahL2491
Alagash, ME
987762_tn?1331031553
Blank
supermum_ms
Australia
Avatar_f_tn
Blank
essdipity
338416_tn?1413581329
Blank
jensequitur
Fort Worth, TX
667078_tn?1316004535
Blank
HVAC
Durham, NC