Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Am kinda just venting here, but any thoughts greatly appreciated!
Saw MIA neuro yesterday and was gob-smacked again on all fronts. First, got really good news that shes expunged the junior NOs DX of Functional Vision Loss/Conversion Disorder and redacted the order to see Neuro-Behaviorist. Thank the sun & moon!
But then the disturbing news. She met with NS Dept Chair (the good NS), Pain Management, the senior NO (better than the junior NO) and 2 other neuros to discuss me. Consensus reached that 1) yes, theres still IIH (duh); 2) theres also a migrainous component (yeah, maybe); 3) they still think Ive got a cervical disk disease issue; and
4) the headaches and vision loss primarily are attributed to permanent damage in some (un-named) cranial nerves, THE MENINGES, and the occipital lobes/nerves -- all a result of too many bad surgeries + infection + extended periods of intracranial hypertension followed by intracranial hypotension and then again by hypertension. Oh, and my hypogammaglobulinemia may play a part in all of this (maybe BBB breach?)
She said flat out that theyre not hopeful that Ill ever get much relief/resolution. Seriously, 2 flippin years to get to this new-ish DX?
Diamox reinstated at lower dose due to emesis; new RX for Naproxen + Imitrex (once a week only); more Sphenopalantine nerve blocks and Botox.
Came out of appointment thinking, Im so screwed. But, Im supposed to hear from JH next week as Ive been accepted to both HA Center & CSF Disorders Clinic; just waiting on scheduling. Am desperately hopeful theyll have a clearer, more defined take on this.
I hate that moment when you realize hours/days later that you have a ton of questions and you probably missed the opp to ask them. Likecan you, Ms. Neurologist, please detail how the permanent damage has compromised the visual cortex without note of any lesions? Or, which one of you will agree to testify if I file suit?
So want to give a bit H/T to SeaSprite for her explanation of intracranial pain a few weeks ago; its helping me try to understand how the meninges actually can hurt.
And, sorry for the rant. I am so displeased by vaguery. :)
Saw MIA neuro yesterday and was gob-smacked again on all fronts. First, got really good news that shes expunged the junior NOs DX of Functional Vision Loss/Conversion Disorder and redacted the order to see Neuro-Behaviorist. Thank the sun & moon!
But then the disturbing news. She met with NS Dept Chair (the good NS), Pain Management, the senior NO (better than the junior NO) and 2 other neuros to discuss me. Consensus reached that 1) yes, theres still IIH (duh); 2) theres also a migrainous component (yeah, maybe); 3) they still think Ive got a cervical disk disease issue; and
4) the headaches and vision loss primarily are attributed to permanent damage in some (un-named) cranial nerves, THE MENINGES, and the occipital lobes/nerves -- all a result of too many bad surgeries + infection + extended periods of intracranial hypertension followed by intracranial hypotension and then again by hypertension. Oh, and my hypogammaglobulinemia may play a part in all of this (maybe BBB breach?)
She said flat out that theyre not hopeful that Ill ever get much relief/resolution. Seriously, 2 flippin years to get to this new-ish DX?
Diamox reinstated at lower dose due to emesis; new RX for Naproxen + Imitrex (once a week only); more Sphenopalantine nerve blocks and Botox.
Came out of appointment thinking, Im so screwed. But, Im supposed to hear from JH next week as Ive been accepted to both HA Center & CSF Disorders Clinic; just waiting on scheduling. Am desperately hopeful theyll have a clearer, more defined take on this.
I hate that moment when you realize hours/days later that you have a ton of questions and you probably missed the opp to ask them. Likecan you, Ms. Neurologist, please detail how the permanent damage has compromised the visual cortex without note of any lesions? Or, which one of you will agree to testify if I file suit?
So want to give a bit H/T to SeaSprite for her explanation of intracranial pain a few weeks ago; its helping me try to understand how the meninges actually can hurt.
And, sorry for the rant. I am so displeased by vaguery. :)
I'm so glad the psych piece is finally out of the picture.... you know, you're story rumbles around in my brain every time I see a doc and they are confused why I have double vision and blurry vision and TVOs without papilledema.... all I hear is "Functional Vision Loss" uuugh...
But it's NEVER good to hear that theyre not hopeful that you'll ever get much relief/resolution.... try not to let that sink in too much, it will eat away at your hope...
I'm thinking about you and cheering for you. And I'm so sorry you have been on this stupid rat race for 2 years for someone to finally conclude what you knew all along...
You probably need Sophiasmom or someone medical to come on and say something clever in response to this latest pronouncement.
But you know that I am 100% here for you sending you massive waves of support and friendship. Dont let them get to you with this BS of never getting much relief or resolution. they can say that if they want to, they dont have to live with that. But you are not screwed, you are never screwed as long as you keep fighting!! (Dont make me make that an order :P - i used to be a Captain in the British Army you know, and we keep going even when the battle seems bleakest) You are so strong, and i know you are battle weary but keep looking forward, we are all supporting you. Lets see what HA has to say. Ever onwards and upwards. and you know what I say, no one ever has to apologize for a rant :P Its much better out then in.
And, Thank You Sgt. Keren! Yes ma'am I'll keep forging ahead in the Battle of Indefinites! And frankly, I think asking my HA and then asking JH what they both say will tell us much. MY HA today says (to quote you), "Sod All! No one's telling me it's un-resoveable!" That's mine and mine alone to say. My HA also says that weather is moving in...so maybe I'll moonlight as a TV Weather Personality for a while.
Charms for you both! xoxo :)