I believe I have Psuedotumor Cerebri...
Posted , 4 users are following.
At the end of 2015 I went into the hospital after having a headache for 95 days straight. My neurologist wanted some test run and admitted me. After an MRI and an MRA they determined they couldn't really see anything and wanted to do a spinal tap just to rule out anything severe. The opening pressure of the spinal tap was over 36 so that told them right there there was an issue and after getting it back to a normal pressure they repeated the MRI and MRA and that is when the 8mm brain aneurysm, behind my right carotid artery showed up. They put a stint in the aneurysm and sent me on my way. 3 months later I had another spinal tap and the pressure was high again three months after that I had another spinal tap and again the pressure was high. That was in 2016. In 2017 I had two more spinal taps and the pressures were still high and now we're into the beginning of 2018 and I can feel my pressure is rising again. My Neurosurgeon sent me to a Neuro-shunt specialist and he did a spinal tap and the opening pressure was 19 and yet I had all the symptoms of a Pseudotumor Cerebri, but he didn't diagnose me.
Since then I have seen pain management to have a nerve block done because of the pain in the back of my head and had to argue with him just to do the block and I realized because I have State Insurance they don't want to do anything for me because they don't get paid the full amount.
So my question is if I have the Pseudotumor Cerebri with all the symptoms and all the spinal tap showing High opening pressure why can't I get what I need to feel better?Having anxiety as well has pushed me so far over the edge with my pain that I can't even hardly go an hour without having to rest and I have non-stop headaches and pain. I don't know what to do because I cannot get the help that I need and I'm just really really in pain and tired of all these symptoms that are robbing my life. I am married with 3 kids and I have to miss a lot of things due to pain. I am so tired of this.
0 likes, 3 replies
ashley_marie kylie1010
Posted
I am so sorry your going through this pain. I do not have many answers for you. I wish I had the magic cure. I will pray for you. I pray that you move on without pain from this season of your life and your able to do normal things with your family without totally being wiped out. I had idiopathic hypertension from too much vitamin a. I have been treating myself with phosphotidylcholine. I buy it from a company called quicksilver scientific. I do not know if that would help you but I thought I would tell you what I’m using.
Again I will continue to pray for you.
Ashley
s.vlachy kylie1010
Posted
Wow I’m so sorry to hear you’re going through this that sounds awful - I truly hope your luck turns around soon.
Have you confirmed whether or not you have a condition called pallipedema (optic nerve swelling in the eye) - because this too would confirm whether or not you have pseudotumour cerebri
Your opening pressure you had of 36 definitely indicated IIH. Were you ever put on a diuretic medication to help get rid of the pressure/fluid?
I’ve been newly diagnosed with it so I can’t tell how much the meds are working but I’m also going to try lose some weight which I hear always helps.
I don’t blame you for having anxiety. You seem to keep going through the same awful ordeal with no relief!!!
You just want to have relief and feel better so you can enjoy your life with your family.
I’m not sure if you’ve gotten a second opinion yet but have you gone to another neurologist and see if they will prescribe any medication or if they have any lifestyle suggestions?
It’s just no way to live. So sorry.
Do keep us all updated and I genuinely hope you feel better soon
Sorry if I didn’t help much just wanted to wish you all the luck.
rubeena26947 kylie1010
Posted
I have iih and my life become up side down I spent 20 days in hospital 3 spinal tabs medication weightloss ending up in bed for over a month.so I packed my bags had enough and went away for 2 months back home relaxed met friends went to see neurosurgeon there who stopped my tablets because these tablets have more side affects then what is wrong with u. Sometimes just getting a break might help I suffered from aniexty alot and depression before having iih and it helped me getting away just relaxing meeting friends. I still have iih but I'm more relaxed now after reading lots about it and explaining to my family and all the support I'm getting .A break helped me now I'm back to work taking day at a time looking after my 3 kids and running life some days it gets too much some days are ok.