The results from my Lumbar Puncture with Dr. Gray at Duke

Elisha
That’s a good point. I’m going to have to think really hard about what to do next
Susie

The difference with Dr. Gray is the part where she adds fluid during the pressure check to see if it makes you feel better. (Or draws some off if your pressure seems high) The symptoms of high and low are very similar. So the diagnosis is the key part. I did ask about finding someone closer to home to do my patches, and she mentioned she could direct the care through a physician in San Francisco or Minneapolis. But I figure if I am going to fly that far, it may as well be to NC. I have heard from looking at a csf leak forum that there is an interventional neuroradiologist at Cedar Sinai in LA who specializes in leaks who could be a possibility.

This is the language from the objective of the study at Duke that may help clarify.

Objective: The normal range of CSF pressure is poorly defined. Abnormal pressure for some may be
normal for others. The objective is to determine if altering the CSF pressure in patients within “normal”
range can relieve symptoms of chronic subjective vertigo with migraine headache or head pressure, with
or without other otologic complaints

Thank you for clarifying that. I didn’t want everyone who suspects a CSF problem to feel their only chance is to come to Duke.
Although I have not doubt she’s the best!

I think the interesting part is what you said about even if your levels are in the “normal” range a regular doctor may not believe you have a CSF issue. Doctors can be so plugged into “normal” lab levels that they ignore when patients are symptomatic. Just because you are in the “normal” range doesn’t mean that you can’t be having symptoms if you are on the low or high end of that “normal” range.

I hate that about our lab levels and doctors that can’t get beyond that! I was totally feeling symptomatic of low ferritin levels even though I was within the “normal” level but needed to get up higher to start feeling better again and it took a hematologist to finally get it. Anyway, I digress…

hey elisha,

yes, that is a great point and i actually convinced my nuerologist to approve a spinal tap for me a few months ago but it didn’t feel right for some reason. i tried to explain to my nuerologist what they are doing at duke and his comment was, " what, you think they have artificial cerebral spinal fluids or someting?" i just sat there and realized how behind my little “san diego” treament care was. i know i’d be in better hands at duke and am trying to weather this storm out.

please keep us posted with your status!

ilovesalem- I’ve seen some TERRIBLE Dr.'s myself! That’s why I threw in the towel, quit my old ENT and Neuro and asked my GP for a referral to Duke. I figured they are the closest really reputable hospital and if they can’t fix me than…
It was just Divine Intervention that I found Dr. Gray and she found my leak. I guess God put me on the right path.

That’s funny your Dr. said that. It’s not really funny, it’s actually sad. But I guess it’s not something all Neuro’s are familiar with. My Neuro at Duke who ordered the LP thought my pressure was going to be high. She even told me it was doubtful it would be low but as well all know it was.

I’m not saying don’t go to Duke by any means. I’m just saying she may not the only Dr. that can help you. You could always email her and ask her what she thinks. She’s as nice as can be.

I hope you get some answers soon. I know exactly how you feel…I’m right there with you :frowning:

Thank you very much for filling us in on your appointment. Best of luck this week. Please continue to keep us posted.

Thank you LIsa. I go this Friday for the patch. I will let everyone know how it goes :slight_smile:

Hi Shelly,
Thank you for the well wishes, I go for the blood patch in the morning. As you can imagine all I do is pray it works.
As for the vision thing. The best way to describe it is that I didn’t have to make an effort to see things, I don’t have a vision problem. It was more like my brain wasn’t having to work so hard. I didn’t even realize how “foggy” things have become.
However, other than after she added all the extra fluid I have never before had the experience. I’ve never had brief episodes at least that I am aware of. It just seemed like for that short period of time I didn’t have to make such an effort.

Do you feel like it’s a brain fog or more of a vision thing?

Hey Shelley,
Sorry, I just saw this reply. I’m not sure if I’ve had any of those kinds of experiences. Have you seen an neuro-opto? Not just a regular optomologist. Do you ever feel like you see better when you lie down?

Hi Elisha,
I saw your message on your other thread just now. Thanks for that as I was going to post to this one the other day, and got sidetracked or something. :slight_smile:
I’m glad to see that Dr. Gray found something that sounds like it’s going to help! That’s great news. :slight_smile:
I had a question about the “clear” feeling you are describing. I’ve felt that way a few times. It’s so fleeting that I never really pay attention to it. When it happens to me it’s like everyone turned the lights just a little brighter, but it’s not too bright - it’s just crisper and seem to be less of a strain on my eyes. Like you said, it seems like my head (thoughts) are really “clear”, too. I actually feel really good for a little bit after, but then it usually fades after about a minute or so.
I have had at least 2 epidurals, with my second I had pain in my back after 48 hours, but they checked it out and said I was fine so… :slight_smile:
My last child I had pre-eclampsia so I honestly don’t remember what in the heck they gave me - it was fast though, and I don’t remember much of anything, so my stuff probably isn’t related to what you’re experiencing.
I really hope the procedure will help, and that you’ll be feeling better ASAP.
Take Care,
~ Shelly

PS - Forgot to say that I also get short periods where it seems like the lights are dim - or more so that maybe enough light isn’t getting into my eyes, but my pupils aren’t smaller or larger at the time - just my vision.

I think I understand what you’re saying. I saw your post that you had your procedure, and I haven’t read it yet, but I will after posting this message. :slight_smile:

I suffer periodically from both the foggy brain, and the visual problems. My optometrists have never found anything unusual with my eyes physically - I do know that I had a focusing problem when I first needed glasses. (In reading about seizures the last few days my vision getting bad so quickly and having focusing problems back then might have been a result of trauma to my head though.) However, it seems the last couple years I have been having trouble seeing in light that others find adequate. For me it seems like I’m just not getting enough light in, and occasionally I’ll notice that things dim more than usual now and again but is better after rest when that happens…

All I know is that I’ve had brief moments (probably 30secs. at a time) where everything I see, seems brighter, clear, and I feel REALLY “perfect”. It’s such a difference that I usually stop in my tracks and “enjoy” it for a moment before continuing what I was doing - not that I’m not able to continue on, just that it is so incredible that it takes me aback for a second or two. The only thing I can describe that’s close to what I feel is what it was like the first time I ever put on a pair of glasses and went outside. I couldn’t believe I could see EVERY leaf on the trees, and the depth and crispness of everything was stunning. It’s like that in my perception, except it’s not just clearer - everything is brighter and I have an easier time getting around (more sure-footed and confident since I can really see). Unfortunately it only lasts a little bit (maybe 10 minutes at the most - and it’s only happened maybe 10 times over the last few years, so it’s not often at all…).

I’ve also had a few episodes like that with my chronic physical and “mental” issues (GAD, Depression, and minor PTSD) - like one day my brain is quiet, and I’m really calm and I can make decisions easily, and I can remember things I usually have trouble with, etc… And, I’m in a happy mood (not mania, or OVERLY happy) more like contented. The last time I remember having a day like that was this last fall (which was a BEAUTIFUL day weather wise, so that may have helped as well! LOL). Those periods of “calm alertness” probably last several hours at a time, but they too are very far and few in-between when it comes to feeling “normal” vs. some symptom acting up…

Well, I’m going to check your new thread. I’m hoping it all worked out well for you!
~ Shelly