Blood patches to fix suspected CSF leak at Duke

I had the blood patches done today. That was a piece of cake compared to the lumbar puncture. I’m still pretty sore but that’s about it. As far as all the MAV symptoms: I still have a headache but I woke up with one, the vertigo seems slightly lessened but it’s still too early to really be able to tell. Dr. Gray said we have to give my body time to replenish it’s own CSF and I may start to notice some differences in the morning. I did, however, notice that on the 2 hour drive home whenever we stopped at stop signs or stop lights I didn’t “rock” like crazy. As I said too early to really be tell.
She didn’t do the myelgram, just went in with the blood and patched the entire area where I had the spinal block. If this does not work, which she assures me it will. Than the next step is to do the mylegram.
I’ll let everyone know how I’m feeling in the morning. We will then know if I indeed had a leak and if the patch worked.
I can’t pick up my 18 month old so I have to have around the clock help until at least Tues as we don’t want to “break” the patches.

Thanks for all the support so many of you have given me so far! I hope to report some good news in the morning!


Glad everything went so good. Seems like you’re already seeing some positive results. That’s gotta be a good sign. Hope everything just keeps getting better for you. Good Luck and keep us posted!!!


Very happy to hear it went well! Hope this is the answer for you!


Thank you’ll.
Julie- I thought this was interesting. I talked to her about how crazy people think it is that I’ve been walking around with a (possible) undetected CSF leak for 18 months. I asked her if she’d ever heard anyone go that long. She told that was not at all unusual. She’s treated a lady that had a CSF leak for 25 years!!! She got it from a car wreck.

Wow! If I do not get relief I will go see her. Unbelievable to go that long!


Could you imagine??? 25 years!!! Poor woman!

You are going to get better soon!

yeah! crossing my fingers that this brings you relief! if anything, at least you got this patched up! did i read somewhere that if you do have a csf leak, that it could lead to spinal meningitis? that freaks me out.

this is totally random, but have you ever noticed elisha sometimes when you sit down leaning over (like if you are on the toilet :smiley: ) that you get a pinch or a quick shock of light pain in that area where you did get your spinal? i have actually noticed that from when i had my first child and have always wondered what that was. it’s always been in the back of my mind like it’s a leakage or something…

best wishes for you and hope your life returns to normalcy!

Thanks for updating us. I’m glad you have someone to help with the baby.Take it easy and like others have said I hope that this is the answer for you!

Day 2 after Blood Patch

I’m ok, that’s it. Yesterday was pretty rough. I was dealing with some rebound high pressure that made my head fill like it was going to explode. Dr. Gray told me to take some diamox to lower the pressure which I did, and then boom, back to low pressure. She assured me this is all normal. It’s going to take my body some time to equalize the CSF pressure. She wants to me to “play” with diamox levels throughout the day today. I woke up this morning feeling exactly the same as I have for 8 months, but I didn’t have a headache. The biggest difference that everyone has noticed is how clear, bright blue my eyes are. I’ve noticed it too. It was like a light came back on in them. Some of the lines around my eyes when smile (which appeared out of nowhere and I chalked up to getting older) have “filled in”. It looks like I botoxed my eyes!
As for the “rocking” vertigo. It’s still there and it hasn’t really improved much. Dr. Gray told me that a) it takes time, for some people about a month or more, to have resolution of symptoms and b) that the balance is the last thing to be restored. My brain has to be comfortable and the CSF levels have to be optimal and continual for a while before equilibrium will be restored. It makes perfect since, I just wanted overnight relief! Don’t we all!
Do I’m taking it day by day and doing a lot of praying. I’m trusting God that he put me on this path and this is my answer. I’ve prayed for 8 months for an answer so I’ve got to have the faith that this is it.
I’ll keep you’ll updated, and I really appreciate all the kind words and support!
@Ilovesalem-I had my spinal 18 months ago so I really can’t remember but I do recall thinking I had more rebound pain from it than the regular epidural with my first child.

I was hoping it would be an overnight cure as well :smiley:

I do hope with time things resolve and that you get your ‘‘normal’’ back again full time.
I am sure it is a process as your body and brain adapt to the new you,or should I say remembering the old you.
You are in my thoughts and prayers!

Thank you James. I will call Dr. Gray on Tues if I haven’t noticed any improvement by then.
I hope you are feeling well these days!

Day 6 after Blood Patches
Well, still not a whole lot of improvement in the vertigo. I have not had a headache or neck ache in over a week. Still holding out hope that balance will improve. Dr. Gray and my Neuro are telling me to be patient. It could be “a while”. Hum. Just wanted to update you’ll that are following my story. :slight_smile:

I for one am most definitely following.Sorry you still have the vertigo,but must be nice not to have any neck pain and headache.That must be a good sign that you are healing I hope.

I am following also. I hope it is just a matter of time before it takes hold. Thanks for keeping everyone up to date. How severe is the rocking feeling? What about balance?


Thanks James and Kat. I’d like to say the rocking has improved but if it has it’s minuscule. I have noticed however, that I don’t seem to be as photophobic. I’m trying to keep in good spirits. Dr. Gray consulted with some other Dr.'s and they all agree that balance will be the last thing to be restored and they can not give me a timeline.
Also ringing in the ears has slightly improved.
I will be sure to update in a few days!
Thanks for your support!

8 Days since blood patch

Well, still about the same. I had a little bit of a headache the other day but it went away pretty quickly. Balance/false movement/rocking have yet to really improve. Not quite as photo-phobic. Still holding out hope. Just wanted to give a little update.

I’ve read on some CSF leak forums that it took some time for them to for balance to be restored as well. Fingers are still crossed.

Thinking about you!

Thanks Hask! :smiley:

10 days since blood path

So I’ve decided to get the mylegram. So far I’ve not had any improvement. After talking to some other “leakers” on a FB page it seems that some of them had to go back for several lumbar blood patches. I’m not going to wait around hoping for results when I can just get the test and see if I have a real leak to start with. I should have insisted on the mylegram from the beginning. I can see why Dr. Gray didn’t do it, she said it just made the most since to patch it up and then hopefully I’d be better. Well, since I’m not it’s time for step 2.

Thanks for updating us.I’m sorry that things aren’t happening faster.I hope there are not any steps or at least very few after step 2.