What is going on with me?

[illjill29]

I am a 29 year old female.  2 wks agos I went to see my eye doctor to get a new prescription.  He recognised that. I had Papalademia or swelling of the optic nerved indicating pressure on the brain.  He sent me to a specialist who sent me to the ER to get a MRI who then connected me with a neurologist.  There has been a lot of talk since day one far before the MRI was even completed about Pusedotumor Cerebri.  I honestly feel like they defaulted to the easiest diagnosis because I am slightly over weight...in the right age range...case closed.  In order to treat me for excessive pressure they sent me on Friday to get a LP.  They insisted that the LP would give me relief.  Let me first say that prior to the LP I only had very MILD headaches, dizziness when I stood up quickly and bubbling or crackling sounds in my neck...nothing too disturbing atleast not comparitavily.  I am now 5 days since the LP and my symptoms are out of this world.  I have have tingling/numbing of my hands, feet and knees, headaches that are unbearable, tightning of the chest and between my shoulder blades, my left arm is weak, extreme clumsiness ( I take two steps sideways for every step I take forward) I have a painful lump in my throat and now find it difficult to swallow and nausea.  I had never heard of Chiari before but simply put in only 2 of my symptoms and was wisked away to the world of Chiari.  It only took 2 seconds to glance across the list of symptoms as I began to feel like THIS IS IT!  When the doctors had described PTC I never really felt like I fully identified with it...like I had to push myself to make the syptoms fit...ya know?  I continued to read about Chiari and found that it is commonly mistaken for PTC.  My profile pic is a MRI scan that was preformed prior to the LP.  I feel like something about that lumbar puncture created a more severe herniation where I was borderline before.  I called and talked to my Neurologist about my concern and simply asked that we look this direction as well as MS and PTC.  She said that I DON'T have CM1 and she would call in some anxiety meds for me....
Am I crazy?  Am I barking up the wrong tree?  Opinions are much appreciated.  Thanks!    

[illjill29]

She said that she was unsure about doing a blood patch on me because I am a really "delicate case".  Whatever that means.  She said that she thinks that I may be having a hard time readjusting due to the radical change in pressure.  When they measured my pressure prior to the LP I was at 30 and they took me down to 12.  She said that my body is having a hard time getting used to it.  

[jenshead]

Sounds like you've got a good plan.  I'm surprised your dr is still saying to just rest...not sure how long is too long to be in pain like that after an LP.  Did s/he say if it sounds like a leak?  I'm sure you'll find out more after the MRI.  Good luck!!

[selmaS]

  Good luck with the MRI tomorrow...and do request a copy of the report as well...they will give u the CD of the MRI b4 u leave, but mail the report when it is ready....

   "selma"

[illjill29]

As far as the recovery of the LP I spent 2 hours on my back in the hospital and then went home and spent going on the 5th day of bed rest.  I am sure that it is still possible to have experianced a leak in spite of my diligent rest.  My doctor wants me to continue to rest through all of these symptoms in hopes that they will let up over time.  I went back and reviewed the MRI report and there is no mention of the tonsils at all or anything in that region of the brain based on the terms that you gave me outside of saying that all was normal.  Thanks for all of the help and advice. I will go in tomorrow for another MRI paying special attention to the tonsils to rule out CM1.  I will keep you posted on what happens.  I plan to obtain copies of that MRI as well and forward it on to Chiari Specialist if I continue to get the run around.  It is so nice to have a place to ask thses questions, thanks again.  

[selmaS]

  Hi and welcome to the Chiari forum.

Jen did a great job giving u info....having all the reports to go with ur MRI's is a good idea, but at this point not a necessity. U could make copies of the MRI's u have and send them to NS's willing to review them for u, they will give u a report...some drs will charge a nominal fee for this  while others do it for free with the implication that u will be a patient.

As Jen mentioned, u r not crazy...sometimes I wonder about these Drs...there r just way too many that take the easy way out...PTC can occur in a very thin person, and even if they felt this was an issue it is obvious they did not draw the fluid slowly which is most likely y u have more symptoms since the LP....this is one reason those with chiari r told not to have an LP...we have to make sure the technician knows about chiari and they have to be very careful during the draw.

  We do have a list of drs that was compiled by the members here of their drs...the list is meant as a means to research the drs, NOT as a referral...

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  Know that u r not alone : )

    "selma"

[jenshead]

I'm glad you have done your research, and it's good your skeptical, but in this case I don't think your doctor is completely off.  Granted, I'm not a medical professional.  I have Chiari (confirmed by MRI & Chiari specialist) and have been tested for PTC, so I have a little knowledge of both at this point.

If you have optic disk swelling, that is BAD.  You can go blind, regardless of what's causing the high pressure in your head.  No matter what is causing your high pressure, you need to be treated for it.  Sending you to the ER and doing an LP was probably the right thing to do.  Again, though, I'm not a professional.  Did you get the results of the LP yet?  That will help you.

It is very possible that your LP had a complication of a CSF leak.  That will cause horrific headaches and possibly other symptoms.  You should inform your doctor of your change in symptoms, if you haven't already.  A CSF leak can just happen from an LP...there does not have to be a reason, but there could be.  It can be treated though - either it will go away or they can do something called a blood patch.  The chances of you getting a leak are drastically increased if you did not stay laying flat long enough after your LP.  They should have made you stay laying flat in the office/hospital for at least an hour, and then you should have taken it easy and laid down as much as possible for 24hrs.  Personally, I spent 24hrs in a recliner or bed.

Now, regarding Chiari...Chiari is something that must be confirmed on an MRI.  You will read tons about people who have it and the drs don't acknowledge it on their MRI...but even if the dr didn't see it, it was there.  Call and ask for copies of your MRI reports.  Is there anything on the report that says Chiari, tonsillar ectopia, low lying tonsils, etc?  Those are indicators.  Usually the report will mention it even if the doctor does not.  Once you know that, you can proceed with Chiari or drop it if it's not what you have.

The symptoms of high pressure (PTC), low pressure (CSF Leak), and Chiari are nearly identical.  I know how frustrating it is to feel like the doctor is suggesting PTC only because of your weight - but better to let them do the test and find out than ignore them.  It would be awful if they are right about the PTC and you don't get treated...because the effects of PTC are terrible.

Additionally, Chiari can cause PTC, PTC can cause Chiari.  Keep that in mind as you go forward.

Last thing I want to mention is - you may not be crazy, but you have to convince your doctor you're not!  And that's tough.  I don't know how you talked to your doctor, but make sure you are walking on eggshells!!  If your doctor gets the impression that you read things online, panicked, and started acting like a hypochondriac...you're going to get anxiety meds and nothing else.  Remain calm, cool, collected and most of all, respectful...even if you feel your doctor is a giant jerk.  

That's a ton of info but I hope it helps you!  You're not crazy, you're just looking out for yourself.  That's a good thing.  There's lots of people on here with lots of info so feel free to ask more questions.