I got home from Duke this morning and wanted to tell everyone how it went. I had the LP and my opening pressure was 11, Dr. Gray said that was on the low side of normal so she started adding some artificial CSF. She started with 5cc’s and asked me how I was feeling, I said I didn’t notice much change, she went up to 10cc’s and still not a whole lot of change in anything. She got up to 15cc’s and immediately it was as if the light in my brain came back on and I could clearly see the whole room. I had not even realized how bad my vision had become. The PA even said “look at her eyes, look at them come to life, look how bright they are”! So she stopped at 15cc’s bc she said she didn’t want to go any higher. She then said that she was 90% certain the I had a CSF leak from where I had the spinal block for the C-Section from the birth of my last child. I am going back next week to have the blood patch. She is so certain that this is where the leak is coming form that she’s not even doing the mylegram (sp?)
I have had some complications however. This has not been an easy process. FIrst, the lumbar puncture hurt like heck. Second, the vertigo only improved about 50%, although cognition improved 100%. When I woke up this a.m. at the hotel I had one of the worst headaches I’ve ever had. I called Dr. Gray (she gave me her cell phone number, best Dr. ever) and she told me to drink lots of caffeine and take some Motrin. I did this and it didn’t help. She called back to check on me and told me the reason for the headache is bc when she “filled me up” yesterday my body was at the optimal CSF pressure. Over the next 16 or so hours from the puncture I lost some of the artificial CSF and the drop caused my brain to go “haywire” causing the migraine. This has convinced her even more of the suspected leak.
So currently I still have a pretty good sized headache but it’s subsiding. I’m very hopeful that Dr. Gray is right and there is a CSF leak causing all my trouble. Had my vertigo of completely gone away after the “fill up” I would be 100% optimistic but since it was only about 50% I’m not 100% certain this is going to be the fix. Dr. Gray is much more optimistic and she’ s the expert so who am I to question her right?
She’s just as amazing as everyone says I have to add, maybe even more.
I’ll let everyone know how I feel after the blood patch next week.
That sounds like really good news. I’m interested as I got mav shortly after having a c section. How soon after your c section did you get dizzy?
I had migraine headaches immediately after his birth that lasted about 10 months until vertigo set in.
Did you have a spinal block or an epidural? It’s much more likely to have a CSF leak with a spinal than an epidural.
I had both, but neither worked and I ended having to have a general anesthetic and emergency c section. The reason I think I could be the same as you is that they tried over and over again, like 8 times to do the spinal because it didnt work. However my migraines didn’t develop until I stopped breastfeeding and my periods returned (approx 4-5months after birth). I have read a few of your posts and I too am absolutely miserable, have had this for a year and have tried loads of meds with little success. Now I’m prepared to try anything to get my life back.
Ps I really hope the blood patch is the answer for you. It sounds like it will be. It would be great to hear another success story
I just send you a rely but I don’t think it went through so I’m sorry if this is redundant…
Thank you so much, you can imagine how much I am praying that is the answer.
As in your case it’s certainly worth looking into. It was my first gut intuition when all this first started. I told so many Dr.'s I suspected this but they all shot me down. Finally my current Neuro said “unlikely but not impossible” it’s more likely high pressure. She’s the one who ordered the LP and you know the rest of the story.
What concerns me about your case is that they tried so many times. If they can hit my “dura” I believe she called it, in one try, well…you do the math
Please let me know if you need any info on Dr. Gray. You can have an LP done anywhere but she’s the one that believes everyone has a “sweet spot” as she put it with CSF pressure. Do you live close to NC?
Sorry for all the misspelled words and poor grammar. I still have a killer headache!
thanks for your reply. Unfortunately I’m based in the UK , however I am now at the point where I am prepared to travel anywhere to get treatment. I am not functional, cant work or look after my little boy, so i have to explore all avenues.The more I think about this the more likely I feel a Csf leak is. If you could send me the details of your doctor that would be great as I am not aware of anyone in the uk doing work like this. How would I go about getting an appointment with dr gray?
Here is the link to Dr. Gray’s information. I was referred by my Neuro but I don’t think you have to have a referral.
I’m glad you made it through everything.I hope this is the answer for you.Good luck with the patch and sending good thoughts your way!
Thanks for keeping us updated.You are a pioneer woman!
Is it possible that after you have the blood patch put in, the vertigo may get to 100% over time? Almost like an inner ear infection. Once your brain is used to the extra needed csf, it may start to compensate better. I don’t know if that makes much sense, but the vertigo could just start getting better and better as the weeks go on.
Great to hear that it helped some things though. Good for you for toughing it out. I don’t know if I could ever go through that. You’re a trooper!
Thanks James! I’m starting to have a good feeling this is the answer.
“Inafog” is the pioneer woman! Something about her story just “clicked” with me and I knew this was something I had to look into
I hope this is the answer for you too!
Your description of the visual difference was just like what I have encountered. It is so hard to describe, but everything is clearer, and to me it is like actually being able to relax and look at things instead of feeling like being bombarded by everything visual. I think my brain just shuts down and only processes what is necessary. The visual “awakening” is truly remarkable when the fluid is at optimum pressure level. The weird thing is that I don’t notice how bad it is when my pressure is low, but notice a huge change for the better when the pressure is normal.
I can’t wait for you to get your permanent fix next week!
yeah! i am so happy for you! this is what i ultimately would like to do as i had a c-section with a spinal a year ago and have been so dizzy ever since, well rocky. i have had mav since the age of 10 years old, but nothing to this degree of 24/7.
i’ve brought it up to different doctors many times and they say the same thing- “very unlikely” and “you would have a horrible headache.” i am desperate as well and once my hmo insurance switches to the ppo, i would like to see how this is covered.
i really hope it’s a leak for you and things get patched up and healed up for you!
Greg- Yes, Dr. Gray said that it’s very possible the blood patch will completely fix the vertigo and headaches. Imagine that! It sounds too good to be true so I’m trying not to get my hopes too high. And you could do it, I promise. It’s not fun but I’d do anything to get rid of MAV, as would all of us!
Thank you Anne!
Ilovesalem- when does your insurance switch? Thank you so much, I hope it works too!
probably this month? i just sent the paperwork in last week so who knows with a grocery union that almost went on strike during the wintertime will take. i am nervous to take a flight across the country, stay for who knows how long in a hotel (that’s not my home and leave my kids) and am fearful of what could happen after the procedure like what happened to you… i woke up so incredibly dizzy after both my c-sections-not sure if it was the spinal/epidurals to blame but am so fearful that could happen with this. did you get dizzier? of course i have in mind the possibility of what could happen! amazing!
what were your symptoms before the spinal tap? i am rocky 24/7, had horrible brain fog in the beginning but the topamax has helped but now my cognitive and memory is bad, tinnitus daily but not horrible, fatigue and have never had to wear eye glasses until a year ago! i feel better in the car and moving. there isn’t too much on the internet about spinal leakage symptoms and what i have researched it seems to be similiar to mav- interesting!
i also get SUPERSICK when i am pregnant and dr. kaylie mentioned via email that he wasn’t surprised, that my csf pressure was probably super high. that has been the answer i have been looking for in 6 years. maybe i will find my next answer with them soon!
are they still doing the “study?” if so, i wonder if i could qualify and do it that way if my insurance doesn’t work?
Thanks for the info, I am definitely going to follow this up. Best of luck for next week I am keeping my fingers crossed for you. Please keep us posted
Susie and ilovesalem- I’m just going to throw this out there, if you suspect a leak you don’t have to go to Dr. Gray. I went to Dr. Gray bc I knew she specialized in CSF problems. However, if you truly suspect a leak (ilovesalem your symptoms sound just like mine) you can tell your Neuro you want a pressure check. The problem with a regular anast. is that if your pressure reads normal from the LP than they may not think you have a leak. You could then push for the mylelogram (sp). My point is since it’s such a far trip for both of you there are some other things you could try to get done at home first. Any hospital can do a LP and mylegram (sp?) from what I understand. Dr. Gray just knows that not all “normal” pressures are “normal”. Like mine.
Good luck, I hope this wasn’t too confusing.