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...
Okay, so my regular neurologist's office called me this morning and told me that he would like me to do an aggressive weight loss plan to treat my PTC and this is without consulting my Neuro-Opth(neuro-opth is the one who ordered the spinal tap) before telling me this. So, I called my Neuro-Opth and told them I was freaked out from what my regular neuro told me and they said they had a message from the neuro-opth and to let me know that he will be calling me on Wednesday....now, I have to wait...I am hoping they don't brush this under the rug and also, I am a little offended by them telling me to do aggressive weight loss even though I know losing some weight will help. What do you all think? Thanks
nothing surprises me these days. my optho doesnt even think i have ptc but that is another story. weight loss can help and is a classic response for neuros to recommend. mine said that too and i am a normal wt / bmi guy so i would not take offense. this is one of those illnesses where everything helps and somethings help some of us better than others.
i forgot are you also on diamox? unfotunately i dont think there is one fix all answer and add to that this is rare so it catches doctors off guard and do you know ant doctors that often say
"i don;t know but i will find out for you"
It is like spagetti. keep throwing things against the wall and hopefully something will stick.
Don't want to be negative but for me I just us that thick skin I grew up with in MN, let that stuff roll off my back and keep pushing until I get the answers I am looking for.
Tommy Krammer fan, TJ
I decided to give it a try with the agressive weight loss plan, since I was scared to death after I read all the posts of my fellow patients of this support group and I lost 25 pounds in just 3 months. The results were fantastic, now I'm a little step from remission, my Diamox was lowered to minimun dose (500 mg) and my papilledema is almost non visible. My visual tests from February 2009 showed marked improvement from the ones of late November 2008.
I must warn you that this may not happen to you, after knowing my fellowmates here I've known that this condition is very tricky and different from person to person, but I also can tell you, it DID work for me and it was WAY WORTH IT giving it a try.
Later if you are interested I may tell which diet helped me, but, again, diets aren't made for everyone, one must find out which one is the one that suits you.
I'll pray for you, and I really hope you give it a try, since there is nothing to lose but a few extra pounds.
Best regards,
Krys
I am not taking Diamox due to being considered by my doctor as what they call "medication failures". I guess I just feel a little insulted being told to go on an aggressive diet. That sounds SO extreme to me. I'm just wondering what the neuro meant as far as "aggressive".
Krystell - I would love to hear how you lost your weight and what worked for you (congrats on doing so). Thanks for your prayers too...I totally could use some with all of this going on...
Thanks again!
If ok to ask, why doesn't your optho think you have PTC? What ecactly does he call the unexplained build up of CSF, and the uncommon need for regular spinal taps?
I know you must have neuro who must have DX'd you, just having a hard time understanding your optho...
Lucy
always ok to ask. i need a new optho anyway and am past due for follow up apt but this guy never heard the term IIH. then i said ptc and he said oh ya but you dont have that who told you so? i explained and he accused my neuro of fabricating the ptc/iih dx since he didnt see it and in his terms he is the one who makes that call not a neuro. ugh
anyway the optho told me my pressure was in normal range 18 and he saw no swelling in optic nerve so no ptc. i sent results to neuro who then asked for my viual fields results to which i replied what? and i had to go back to finish the exam that i originally asked for.
does that make any sense? my take is that i was already on diamox 1500mg b4 that optho apt and it was doing what it is supposed to do (or why endure the hardship) so the optho had nothing to see. i mentioned this to him and he blew it off, he is clueless.
yhat is my story and i am sticking ti it!
I have 2 words about your optho:
Quack, quack.
I hope you find a better one soon!
Lucy
Been awhile since I've been on here but I saw this come through on my email. GBF it is soo hard to hear from anyone that you need to lose weight, especially an "aggressive" weight loss as they want to call it but I have heard that this is the best thing for PTC. And the fact that you aren't on the diamox I'm sure that's why they want you to try and lose the weight since that seems to be the only treatment option you have. Keep your head up there is a light at the end of the tunnel of all of this! It's a hard struggle to lose weight and I'll keep you in my thoughts and prayers, hope everyone's doing "well".