Ice Pick Headaches?

[lcm3673]

I was decompressed 12/9/09 and treated for a CSF leak 1/15/2010.  In May, I started taking Topamax as I had to get a new Neurologist because my NS and Neurologist moved out of state.  The new neuro dx my headaches as simply "migraine type" headaches.  I have been on Topamax before and not had any problems however, this time seems to not be the same.  I am still getting headaches, mostly in the evening.  My new concern is that starting around 4 p.m. last night I started having these sharp stabbing headaches.  I have never had these before.  Online search brough me to this page and to the term "Ice Pick Headaches."  However along with these headaches, I am having major problems with my hands (both). The muscle between my thumb and pointer finger has been pulsating since the first "surge" and my hands keep "locking up" like I can't use them.  

My MRI have also shown a "questionable left PCA aneurysm" and I don't have any clue what that is other than I saw it in the reports when I got my med records so I could change docs.  I know my last MRI still showed tonsilar herniation of approximately 7 mm which is a decrease from the 18 mm prior to surgery but this was only a little over a month since surgery.  I am wondering if any other Chiarians have experienced this or have any clues/suggestions.

[selmaS]

Hi...if ur weight was an issue for Dr Menzes, I wonder if u r having symptoms of IIH intercranial hypertension...too much CSF?

It can develop after a PFD or can be a result of being overweight...but not all with this have a weight issue.

It is something to look at tho...as is tethered cord.

I was dx'd with fibro yrs ago, my NS and NL told me it was Ehlers-Danlos and not fibro...so many conditions have similar symptoms it can be diff to tell what u have and what symptoms r from which condition.

Did ur dr say y they did not cauterize the tonsils during the procedure?

"slema"

[lcm3673]

Thanks for your responses.  I did have a thoracic MRI but not lumbar.  I did not have evidence of a syrinx at the time.  I was not checked for other Chiari related conditions.  Also, my NS was not a Chiari specialist although he seemed quite knowledgeable about Chiari.  I actually live within driving distance to Dr. Menezes and have seen him before.  He would not do my surgery originally because of my weight, so I found a surgeon who would do the surgery hoping things would improve.  I woke up this morning and my entire left side is numb (which is the side of the headaches and the side I usually have the most problems with) including leg, face and hand.  Hands are still having muscle spasms and cramping.  

I don't know about my CSF flow but I do know that they some of my own pericardium for the dura patch.  I have wondered about tethered cord syndrome.  I have an appointment with my new neurologist on July 16 so I will ask about a 6 month MRI then.  I get so frustrated because it seems like there is no one that truly understands this condition.  My new neuro wants to just call it migraines and be done with it and I am tired of not having control of half my body.

In all honesty it seems like my numbness and weakness has gotten worse since surgery.  I had friend who suggested that I might have firbomyalgia and I haven't got a clue anymore.

[selmaS]

Hi and welcome to The Chiari forum.

I am so sorry u r having these issues still...may I ask, did u have a MRI of ur thoracic and lumbar spine to rule out tethered cord and a syrinx?

Were u checked for Ehlers-Danlos?...or other chiari related conditions?

It is possible with ur herniation still being at 7 mm that u r still having chiari symptoms.

Did u r dr so a 6 month post op MRI?....I would be curious as to what is going on....
also did ur dr explain the procedure he was using for ur surgery and what he hoped to accomplish....

IE- benefits, CSF flow...type of dura patch used...

I hope u r able to get some answers and help calm down most of those symptoms.

"selma"

[redkim]

I had surgery Jan 29, 2009 and I get the ice pick headaches, they started a few months ago and are usually at the base of my head on either the left or right side, I think mostly the right side.  They make my scringe and my eyes water.  Sometimes they'll last a short time and sometimes for hours off and on.  I can't provide you help on your other issues, but I am sure someone else on here can.  all the best,

On the PCA anuraysm:

http://www.ajnr.org/cgi/content/full/22/1/27

http://stu.westga.edu/~wmaples/jennings_cat.html


It's always important to get copies of your MRI for this reason. I have a pineal cyst I didn't find out about until years after my first MRI.  When I went to see an NS for the Chiari, he told me about it and said we need to monitor it because it could kill me.  It seems to be doing fine, lol.