Author Topic: CSF Leak after C1:C2 cervical myelogram puncture  (Read 8436 times)

eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #30 on: April 23, 2012, 01:56:13 PM »
since i'm stuck waiting for another month, can anyone tell me what else can you can do to help a leak heal on it's own?  like should I tie a scarf really tight around my neck to work as a binder? does fluids and laying flat help it heal, or just decrease symptoms?  does caffeine help it heal or just decrease symptoms? any nurtritional things I can do?

beevil

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #31 on: April 24, 2012, 11:10:00 AM »
Caffeine, binders, laying flat, etc... All of them are anecdotal. They might help you symptom-wise if you want to give them a try. No studies ,no proof, no level 1 evidence about them increasing healing. May chronic leakers have tried everything you might think of. Even blood patching is weak on evidence. Sorry about waiting on Dr. Gray :( I know how you feel. She's super nice and will likely get back with you.

Are you taking any medicine to control the pain? I use Oxycodone.

Here's a good post on good nutrition, but it is unknown whether any specific nutritional aspects help CSF leakers:
http://csfleak.org/index.php?topic=191.0

Frankly knows a ton about nutrition.

If you haven't already, it might be a good idea to get your labs checked. Vitamins, hormone levels, etc... Deficiencies can wreak havok on you.


HTH




eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #32 on: April 24, 2012, 02:15:14 PM »
Dr. Gray is on vacation, so I'm sure she will get back to me next week.  I feel really sad though now after looking around on some other forums, I learned that if this doesn't go away on it's own, the only cure will be surgery.  I'm hoping Dr. Gray will say otherwise, but I don't think I would do something unless my neurologist advised me that it's safe.  All my vitamins and bloodwork is really good and I don't have any underlying diseases, yet I'm not healing (yet at least) from this dural puncture.  My neurologist basically is having me wait another month.  He's not conservative at all, so this is all disturbing to me.

I read online that only 90% of post dural puncture headaches resolve on their own by 1 year?  Is that really true?  I don't understand why the radiologist would have punctured me in a location where I can't get a blood patch, if 10% of people don't heal without them?

eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #33 on: April 24, 2012, 02:22:42 PM »
I vomited multiple times after taking some Roxicet for the headache (i was originally perscribed that for a car accident and held on to it).  I don't want to ask my neuro. for pain meds especially since I made a big deal about "not wanting to be on medication for the rest of my life."  Honestly because I have decent insurance through my employer which I'm sure Duke accepts, if Dr. Gray offers treatment and my neurologist approves, I'll be going that route.

frankly

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #34 on: April 24, 2012, 02:28:40 PM »
Eva,

The bottom line as that we really don't know... sometimes just plain old tincture of time is enough.  But here are my thoughts, if you take them with the understanding that this is just based on what I think, not on much evidence.

Caffeine increases CSF production so helps to reduce symptoms from low CSF volume and pressure.  Just try it and see if it helps at all.  I need pretty large doses to make a difference, but animal data suggest that chronic daily ingestion is superior at upregulaing CSF production rates.  I was not a coffee drinker before the leaking started!

If we assume that the cervical dural puncture left you with a post puncture leak, then bedrest will help your symptoms because the CSF you do have left is not all pooled in the lower spine.  The pressure in the head and lower back become equal when horizontal, instead of very low in the head and higher at lumbar level when upright.  Simple hydrostatic pressure...
 
For healing, it is thought that keeping the pressure at leak level (if known) lower rather than higher, to reduce the rate of flow of CSF across the leak, might be better.  For a cervical leak, by virtue of location, being completely flat might not be necessary to minimize pressure gradient at that level; head a bit higher than butt might be better.  The problem is that your head might not tolerate being inclined much. 

Avoiding lifting, valsalva and binders might be preferable to keep the pressure gradient lower.  If you want your head to feel better temporarily, then wear a binder (but expect increase flow thru leak).  I would not tie a scarf around your neck.

If I were in your shoes, I would avoid things that increase intracranial pressure, like bending, lifting and valsalva, but avoid getting deconditioned by doing some walking and maybe recumbent biking.  Spend a fair bit of time semi-reclined if your head can tolerate it.  If your head is not too bad fully upright, then that's likely okay with a high cervical leak.  Don't do a lot of neck rotation at extremes of range.

It never hurts to pay attention to good nutrition but isn't likely to have a big impact for you in the short term.

Did your neurologist ask you to wait another full month then try another EBP?  Or what?  Is that negotiable? 
Can you share the details of your current symptoms?


eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #35 on: April 24, 2012, 03:14:12 PM »
Thanks so much beevil and frankly for your support and for replying to my post.  My neurologist is actually an expert in CSF leaks and he said that he didn't think a blood patch was safe at C1-2.  Maybe he will change his mind if Dr. Gray can offer a safe way to patch that area.  Another blood patch at the same area of the one I already had (T1-2) is pointless, way too far away from the location of the leak and did nothing.  So, my neurologist's plan is to wait until our next appointment.  I took it into my own hands by calling Dr. Gray, so I'll see what comes out of that.

Basically I have had a really bad constant headache since the myelogram with a C1-2 lateral puncture.  It feels like pain and pressure inside my head.  I also have muffled hearing (only when I hear myself talk, not others).  I don't see this going away on it's own anytime soon.

Frankly is it true that 10% of dural punctures do not heal on their own?  Also are you saying (b/c of the pressure) that it's actually better for healing if I sit upright (less pressure on the leak)?  My neuro. has advised me to lay flat. Now I am longing for the days where I only had bad pain from the car accident and no headache :(

frankly

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #36 on: April 24, 2012, 07:29:52 PM »
Eva,

EBPs can be done higher than T1-2, I have had several...
I don't think they can be done at C1-2 but certainly at levels higher than T1-2, and the blood should reach the area of your puncture.
Even if repeated at T1-2, if the neck positioning and the needle bevel is just right, blood can easily flow to the involved area.
So it certainly is not pointless, if your neurologist still feels that your headache is secondary to a leak.

Is your headache positional?

If you are leaking from the cervical level, having your head at least a bit higher than your butt will result in less pressure at the neck level.  It depends on how positional your headache is as to whether you can manage that.  If the headache is really bad when upright, and you get relief when flat, then you'll want to be flat.

I don't know where that statistic of 10% of dural punctures not healing on their own comes from.  That sounds very high to me. 

If your neurologist is an expert in CSF leaks, would you share the name?  There are not many experts!  I know that a month seems like an eternity... so sorry... perhaps your neurologist is consulting with others on your behalf?

beevil

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #37 on: April 25, 2012, 12:21:49 AM »
Hi Eva,

Any neurologist that knows anything at all about CSF leaks is good to know about. Can you please share his/her name/state/city? We were working on a list at some point to post of CSF leak patient friendly neurologists. Many of us have dealt with some horrible medical folks. 

Try not to despair. The improvements you mention, can be very subtle, but you can trust your instincts. Any improvement in symptoms is very positive. My personal rule is that if there is no change in 3-4 months, it's not going to improve on its own.  Do you use pain killers? Controlling the pain symptoms as best you can will reduce anxiety and desperation, so you don't do rush into anything.

Frankly, do you know if a fibrin glue patch can be performed at C1-2?

frankly

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #38 on: April 25, 2012, 02:52:06 AM »
Frankly, do you know if a fibrin glue patch can be performed at C1-2?

Tisseel expands so when used in tighter areas, such as the cervical region, greater care is usually needed than with blood which flows better across levels.
I don't believe epidural injections can be done in the upper cervical area, but I don't know for sure.

eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #39 on: April 25, 2012, 04:42:46 AM »
I'm starting to feel like I can't go on anymore. It's going on eight weeks with this head pain and I'm really suffering.  I honestly think any improvements i felt where just wishful thinking.  This isn't going away, and it's basically been 2 months.  I just can't live like this.  I don't know what to do.  My neurologist is David Adams in Miami.  He's very good, he's an expert at almost everything it seems like.  Still, he is a neurologist and doesn't perform blood patches etc, so I'm not sure what he will recommend next but i need immediate relief from this now.

frankly

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #40 on: April 25, 2012, 09:46:33 AM »
Sorry about your pain and suffering.
Perhaps you should call your neurologist and ask for a follow-up very soon so that you can express how you are feeling.  He can then decide on intervention sooner.

eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #41 on: April 26, 2012, 05:35:59 PM »
I'm most likely on my way to see Dr. Gray soon.  Her assistant told me that they have patched as high as C2-3, so she can offer some treatment, I have to wait for the consultation.  Sadly my situation, which would have been simply solved with a blood patch, had been infinitely complicated by this rare puncture location.  I got my records from the myelogram and it was performed with a 22 gauge spinal needle.  Is this large or small?

eva

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #42 on: April 26, 2012, 05:38:12 PM »
Also are any of you aware of the "lateral C1-2 puncture" as a radiology technique?  Her assistant wasn't aware of it.

beevil

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #43 on: April 26, 2012, 08:16:39 PM »
Hey Eva,

I'm glad you have an appointment with Dr. Gray. I used to know on the needle size, but can't recall. My original injury was a monster needle. It's a pretty sad ordeal considering studies demonstrate less headache with smaller needles. Tip configuration makes a big difference too. For example:

http://www.ncbi.nlm.nih.gov/pubmed/9010949

One justification for the larger needles is that it's much faster to to drain the CSF or inject dye. It depends on the viscosity of the material. It's a bad practice, and a few of the facilities have moved to smaller needles in recent years.
« Last Edit: April 27, 2012, 12:37:13 AM by beevil »

frankly

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Re: CSF Leak after C1:C2 cervical myelogram puncture
« Reply #44 on: April 27, 2012, 04:16:37 AM »
Eva,

There are sharp needles and pencil-tip needles.
There are various sizes.
There are numerous studies showing that smaller needles and pencil-point needles have a lower incidence of post dural puncture headache.

Sharp needles can cut and tear a bigger hole.
Pencil-tip needles are less traumatic to the dura and spread the fibers with less tearing.
The Gertie-Marx needles are especially good and are often used at Cedars-Sinai (but not always, depends on the doctor doing the procedure).

22 gauge sharp needle is really big, at least for risk of post dural puncture leak.
Dr. Gray usually uses 25 gauge sharp needles for LPs (to measure opening pressure and inject contrast for CT myelogram) most of the time, but is aware of the GM needles.  Maybe she uses those now as well, or a similar type.  They are a bit harder to use than sharp needles.

If you see Dr. Gray, she will likely want to do a CT myelogram to verify your leak before patching, which means a lumbar puncture.  it is a good idea to discuss your decisions with your neurologist.