Please tell me truth about your experience with the epidural blood patch... the web makes it sound like a quick, easy, in and out procedure, rest for a week and your cured... ya'll make it sound something quite diff. I wish to hear each of your stories please!

Hi,
Just wanted to reply to your question, as it seems a bit tough to find leak-related answers sometimes!
I've had 2 bloodpatches, both in the thoracic region. The procedure was pretty quick, about 1/2 hour all up, but then afterwards, depending on your doc's orders you'll have to lay flat and be on bedrest for some time. My 1st bloodpatch was a success, I could stand up the next day with no headache. I spent that night in hospital (2nights total) and then went home, and took it easy.
Then I had a baby, and the leak reoccured. I had the second bloodpatch and stayed in hospital for 4 days. I was headache free for about 5 days and then they slowly creeped back in. I would still say that I have improved upon the condition I was in before the second bloodpatch though, as my headaches are slightly more tolerable.
Just doing some research now to see what my symptoms may indicate, and if I should wait it out or move on to the next step, namely a CT myelogram to see exactly where the leak is and perhaps another bloodpatch.
Hope that helps some!

OK, well, I'll give you the unvarnished truth. I had five blood patches. None of them worked. In layman's terms, what they are doing is putting a big blood clot on top of your spine... Which is all well in good if your leaks are on the top portion of your spine. My leaks radiated around the Dura (top, sides, bottom, etc. on a cross section). My Dr (Dr Leithe @ Duke) advocates a focused approach - identifying the leak(s) with contrast and a MRI - then going after each leak. I think, please don't quote me, she's now using some sort of fibrin glue. Very high success rate!

Ive had a blood patch carried out once, after 10 days of being lying flat with a leak. It started working pretty soon after and I went home 2 days later (following day I still wasnt feeling 100%).

Re the above post, PLEASE be cautious about Fibrin glue, I have had this, but there is still research and questions regarding its use and how long term beneficial it is. It is only (again to my knowledge - Im not medically trained) used when an aspiration of the site of the leak - Tarlov Cyst, severe dural ectasia is drained and the Fibrin is used to try seal off the communication with the spine.

I dont think there is harm in going for a bloodpatch. Its not too sore, they give you a light sedative first and its done pretty quickly.

Good luck

Hi there - I had two lumbar blood patches. The first one, was a nightmare. The resident had a hard time getting through ( kept hitting bone) and after the procedures, nurses had me up and standing, twisting, bending over to see if it 'took' (hmph! It sure didn't!) and after that experience, I ended up having a second one elsewhere.

The second one worked great and sealed my leak up. I went from having low pressure for over 2 months to a sudden high pressure but my doctor was terrific. He recognized it immediately (he had called me at home to check up on me - who does that these days?)

Anyway the doc made sure that all the staff followed best practices the second time - I laid flat on my back for over 2 hours, no bending or craziness. It was a completely painless, different experience from the first blood patch and I am thankful everyday that it worked.

I had a lumbar CT myelogram 7 days ago (Friday) because I have several herniated discs and my NS wanted to pinpoint which disc was pressing on my nerve. I was given IV fluids and laid flat for 2 hrs immediately after the procedure and felt fine. Before we left the hospital parking lot, my headache started. On Saturday, I couldn't take it anymore & went to the ER, where my first blood patch was done. My headache was barely there immediately after the patch was done. I was told I could go to work the next day & I did. On Sunday, my headache was back but not unbearable. Tuesday night, I went back for a 2nd blood patch. Again, immediate relief. This time, I was told no bending, lifting, or twisting for 3 days. I'm on day 3 & the only pain I have is stiffness for lying in bed. No headache! Hopefully this one sticks and I won't need another. The blood patch isn't painful, but who wants to be a pin cushion?

I had the blood patch done 4 years ago after I had my daughter. It seemed to work very well. 4 years later I am having same headaches again. Do people need second patch after 4 years? That seems to long to need a second

Yes Catstarks, they can leak again, talk to your dr about it if you haven't already!

I had a lumbar puncture on the 2nd of July, by Sunday the 5th I could not move the pain was so extreme from head and stiff shoulders, that afternoon off to ER, had a blood patch, but during the procedure the dr kept asking if I felt any pressure,, no never felt a thing, but the head pain eased up to half of what it was so he considered it a success......

Did ok Monday and Tuesday, resting but still having some head pain, followed up with dr, all seemed ok, then by Wednesday night moree head pain and neck stiffness just like it had never been fixed....so I stay in bed Thursday hoping it will just get better, nope, by Friday morning I was on phone to dr, oh he is out till next week, called place that did the LP, was told to go to ER again an tell them I was there an the dr would meet me there.

Ok, get to ER, the ER dr decides to run every test under the sun on me including a head to toe CT, X-rays you name it, never notified the dr in radiology I was there, (I called and told him) when he was off at 5 pm he came an waited in my room in the ER for 3 hrs waiting for the ER dr to say ok do the blood patch,,,finally he did,,,

this dr did it much more concise than the 1st one, and MUCH slower, it took a good 5 min for him to place the needle, I asked why it took so long when the other dr just jabbed it in,, he laughed and said that is most likely why you are back here, he probably created another leak, I told him I had never felt the "pressure" with the 1st one also,

so he puts the blood in, and the pressure I felt big time this time,, so much I almost passed out from the pain/relief both! pretty sure he did this one right, am resting still, want it to take, but have had very little head pain if any but back very tender from all the poking the past week...follow up with dr on Tuesday.

one thing I did notice going through this, if you record your BP before your lumbar puncture or other procedure,,,,, when I had both leaks, my systolic BP was way higher than my diastolic, as in 128 over 52, and 98 over 45, once the blood patch was done right it returned to normal 112 over 82,, I spoke to another friend whom also has gone through several patches, she said the same thing with the BP, and the first thing she checks..so monitor your BP before and after a procedure an if a leak, your BP will change more than likely.

today stiff neck gone, no head pain and BP back to normal and am staying in bed

My daughter had a blood patch and although it worked, for a while, she had a horrible reaction from the needle going through the muscle and was in debilitating pain for a week after the blood patch was done. However, it worked for a while. She was so thrilled to be headache free after 2 years of excrutiating pain. Then two weeks later I was given the ok to get her back on her vitamins. I gave her her normal vitamins with dinner and by morning, her CSF leak headaches came back. I remembered that a year ago when we were in Canada, I was loading her up on vitamins because the weather was really bad and she was working and I wanted to support her immune system. I also remember that she had the MOST excruciating headaches ever during that time.

I put two and two together and looked up the supplements that she was taking. Eight of the supplements all thin the blood. I asked her doctor about this and they have no experience with nutrition or supplements but told me they have no association with blood thinners and a blood patch not working.

However, this is perfectly logical.....The way the blood patch works is the blood is injected into the epidural space to fill the dural leak and form a clot to prevent the leak from occurring and allow the dura to heal and close up. Supplements such as fish oil, garlic, turmeric, vitamin C and other potent antioxidants, have been proven to prevent blood clots from happening and there are beliefs that turmeric will actually dissolve a clot. My daughter was taking 8 supplements that prevent (and possibly dissolve clots). These were all approved by her physician to take.

So, she is doing a second blood patch next week. We have stopped all supplements that promote blood thinning and in fact she is eating a balanced diet, but making sure she has red meat, and foods high in vitamin K that actually support the clotting action. I will let you know how this works.

Pure logic says that if you are having a blood patch done, STOP ALL NSAIDS as far in advance of the blood patch as you can and DO NOT TAKE supplements that promote blood thinning such as fish oil, vitamin E, garlic, turmeric, reishi mushroom, etc. If you are unsure if what you are taking thinks blood, Google search "xxxxxx thins blood" and see if it comes up.

My gut says the blood patch success rate will improve drastically if patients abide by this , along with not doing any bending or twisting or anything that could cause impact for 6 weeks. 6 weeks is the average time it takes the humans body to make repairs from damage.