I am once again wondering about the possibility of psuedotumor cerebri...
My ears gave been going crazy for the last 3 days. Full, pressure, noisy, the standard tinnitus symptoms. But this time there is constant noise that changes from one ear to the other but never stops. I am wondering if others with PTC experience this same issue.
My balance was really bad Saturday and I keep feeling the needed to raise and fan my toes. I do also have Raynauds, so I previously attributed the toe thing to a natural reaction to keep my toes warm by not letting them touch anything.
My vision has changed a great deal in the past year, Dr says my optic nerves are full and crowded but not swollen. I do have blurred and double vision.
Any thoughts or lists of your pseudotumor cerebri symptoms would be helpful.
I cant comment on the tumor but I have the same symptons. ears ringing like crazy going side to side. my eye sight has really fallen off and I keep falling to the left.
I'mactually at urgent care now. I just want to be sure excess pressure isn't an issue. I haven't had a cold or sinus problems and this isn't my usual tinnitus. I've never had a cine don't either, so it's hard to say right now. To have a cine done I have todrive 2 hours to another state...
Left feeling a bit hopeless again. Urgent care says to just use flonaise. I have no sinus or cold symptoms, argg! My primary appointment isn't until Thursday and my Neuro is 2 states away. Just gonna have to suffer I guess.
No one will order a cine. My Neuro asks me what my primary says (due to distance issues) and my primary won't see me until my appointment Thursday. Like I said, just have to suffer. It's just so frustrating. We pay these drs to help us and it seems lately I just get pushed off to someone else. It's not like I'm asking for meds. I'm just wanting to be sure there isn't another issue coming toa head.
When I told the urgent care Dr today I was concerned about pressure in the head she said that usually is headache and vomiting. Do I guess headache, poor balance, nausea, visual disturbance don't qualify? She said if the flonaise didn't work to go to an ENT. I almost laughed.
If pseudotumor is your concern(and it may be impossible to distinguish between Chiari and pseudotumor symptoms clinically), see an ophthalmologist. The specific question is, do you have papilledema? That is usually the "swollen" issue you describe but some opthalmologists will use full or crowded to mean the same thing.
Just as an MRI is the diagnostic test of choice for a Chiari, measuring intracranial pressure is the diagnostic test of choice for idiopathic intracranial hypertension(pseudotumor). Most commonly, that means an LP(lumbar puncture/spinal tap) to check opening pressure. I would also discuss your symptoms with a neurologist and ask them if they feel an LP is appropriate.
Ihave already been told by 2 eye doctors that my optic discs are full and swollen. I told my Neuro but he didn't seem concerned. I just don't know what to do anymore.
Well, off to an ENT I go... My primary doesn't think this is related to Chiari or anything else and says it probably sinus issues. I didn't realized that sinus problems could cause your hearing to sound like a synthesizer in one ear. Hopefully I don't wind up deaf before they figure this out.
Ok, I don't usually do this but I really need to vent.
SO, I am waiting for another week to see an ENT. Hearing problems haven't changed...
So, I call my NS just to get their take on what they think about my new symptoms versus the general Chiari and IH population. They tell me that my mere 5mm isn't really even enough to call it Chiari! This after they gave me the option to have decompression almost 2 years ago. WHAT?!? I have almost every "classic" symptom. Now they are saying that my temporal headaches (which I have never complained of temporal) are probably due to sinusitis (which I was never diagnosed with)!
My headaches are pressure in nature, ALWAYS. All over the head, usually starting in the back, just as I have described to them every time I have seen and talked to the NS office.
When I insisted that I feel the issues are pressure related, they then suggested that I get my primary to order a LP. My primary always refers me back to my NS. ONE HUGE CIRCLE!
Typically I am pretty calm and cool and able to be patient with this stuff. I understand how hard it is for my NS to treat me being that I am 2 states away and they have only seen me a few times. I also understand that my Primary just does not specialize in this field and he does not feel comfortable treating my (now non-chiari) symptoms.
I am sooooooooo far beyond frustrated at this point I just want to hide in a corner and cry... but I know how much worse the headaches get, so can't do that either!
SOME WORDS OF ENCOURAGEMENT are very much need from you guys right now...
Thank you Abby. I don't think, in all the years of pain and frustration that I have ever felt so let down. I just remember the relief I felt when I finally got a diagnosis that felt accurate and now to hear that they've changed their mind is devastating. Why now they are saying they don't think my symptoms are Chiari I can't figure out. Last I knew decompression was still on the table. I was told if I wanted to have decompression I had to have the ACDF surgery first because it was too dangerous to put me face down on the surgical table with my spinal cord being compresses the was it was. So I had the recommended surgery. Which did help with the neck pain, but everything else remained...
Now my vision has decreased in the past year and most recently am having hearing loss. Already have paralysis in my arm. What's next? I think that's really what is actually bothering me the most..
I totally understand that not everything is Chiari. My daughter has CM1 with syncopy. My neice has CM1 with tethered cord. I also have Raynauds, Factor 5 Leiden, and disc issues. I have been asking to be checked for IH, as this can actually cause Chiari but because I am underweight it is unlikely. Like I said before, I'll just have to suffer through.
Pebbles, I’m so sorry for the all the letdowns. We know very well that the “size requirements” are outdated and no longer relevant. This comes out after the time investment you put in? I had a small herniation and was refused by several NSs. It was actually a blessing in disguise. I know we’re all kind of ready for blessings that aren’t in disguise, but we have also become very skilled at spotting the silver linings, right? I don’t want that NS to touch you. He let the cat out of the bag in regard to his experience with Chiari and I think all signs point to getting a new, better NS. Can you travel?
You will get through this I promise. Like Abby said, take a few says to regroup, then come back ready to go forward. Hugs Jenn
I did travel to one of the best Chiari specialists out there. I don't doubt his ability or talent, I just feel like something is beingmissed in the midst of all this. I'm actually hoping that maybe there was some miscommunication or something.
I was treated for sometime for pseudotumor before they found my Chiari. If you are diagnosed with Chiari please do not let them do an LP on you to check pressure. My NS feels my decline started and was directly effected by having two LP’s that made my chiari worse. You could ask your dr’s to do a trial of medication like Diamox, this helps reduce pressure if pseudotumor is the cause. I always described my headaches as if someone was blowing up a balloon on the inside of my head. Not a pain just severe pressure. Felt like I needed to hold the sides of my head in. I will warn you that Diamox does have side effects that are not pleasant but it could give you some relief if it is truly pseudotumor. I have a lot of experience with this and would gladly answer any questions you may have. I will say that in the long run they are now saying all my symptoms were from the Chiari. But that doesn’t mean that the meds couldn’t possibly help you.
I started with extreme pressure headaches which progressed to neck and arm pain. Ear pressure and fullness, all the classic Chiari symptoms. I had been diagnosed with migraine with aura years prior but never sought treatment.
Then there was a 2 month headache with confusion, vision issue, balance and coordination were horrible, loss of sensation in my arm ect.
MRI report confirmed Chiari 1. I sought treatment from one of the best Chiari specialists in the US. He recommended 3 surgeries. 2 for the spine and decompression. I had the ACDF fusion surgery. Neck pain halted until the past few months. I did develop diplopia prior to surgery and the ophthalmologist said my discs were full and crowded.
I had already wondered about high pressure in the head, as I had described my headaches as if me brain were going to come out of my ears, explosive in nature.
I held off on the decompression surgery at the NS request as he stated that the cord compression due to a bad disc and slipped vertebrae were of far more concern and that it would be too dangerous to put me face down on the table for decomp with my neck the way it was.
Recently, I had some sudden hearing loss and called my NS to again question the possibility of high pressure. AT this time they informed me that was very unlikely due to my being underweight. They also informed me that the NS did not believe that my history of symptoms were due to Chiari either.
WHAT?! Why was the decompression on the list of surgeries then?
Anyway, I understand that LP can be dangerous for those with Chiari. I have never had a CINE or flow study. My drs won't order either test. So, here I sit waiting to go to an ENT (as the NS and my primary recommended) while I am half deaf in one ear. Its been almost 3 weeks already and still no answer, solutions, or further testing ordered to figure out what is going on.
Jen is clearly right to be concerned about an LP in the Chiari patient population. The reason an LP is of concern. is that you are draining fluid from the lumbar region, potentially pulling the Chiari down lower. While that is a theoretical risk, it has never been shown to happen in the literature(but, as Jen mentioned, some patients do feel worse after an LP). In contradistinction, a lumbo-peritoneal shunt(continuous CSF drainage from the back) is contra-indicated in the Chiari patient population and has been documented to exacerbate cerebellar tonsillar herniation.
If elevated intracranial pressure is a diagnostic concern and an LP is refused, the only other options are a trial of Diamox(reducing CSF production blindly, not knowing what you are treating) or an intracranial pressure monitor(drilling a hole in the skull and placing a pressure monitor directly into the brain) or living with the symptoms.
It's important to have a discussion with your treating MD concerning risks of any intervention. In my practice, I advocate for a complete work-up with additional data, including an LP in those with symptoms most consistent with idiopathic intracranial hypertension(IIH). Ultimately, it comes down to a risk/benefit analysis. IIH can be very problematic(not to start another conversation, just for clarity).
Jen said:
I was treated for sometime for pseudotumor before they found my Chiari. If you are diagnosed with Chiari please do not let them do an LP on you to check pressure. My NS feels my decline started and was directly effected by having two LP's that made my chiari worse. You could ask your dr's to do a trial of medication like Diamox, this helps reduce pressure if pseudotumor is the cause. I always described my headaches as if someone was blowing up a balloon on the inside of my head. Not a pain just severe pressure. Felt like I needed to hold the sides of my head in. I will warn you that Diamox does have side effects that are not pleasant but it could give you some relief if it is truly pseudotumor. I have a lot of experience with this and would gladly answer any questions you may have. I will say that in the long run they are now saying all my symptoms were from the Chiari. But that doesn't mean that the meds couldn't possibly help you.