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...
Hi all,
Finaly saw my new NS. He is very laid back, my hubby told me he is a surfer and the x-ray tech said he is def. a "dude"
He gave me the most thourough neuro test I have ever had. I liked that he focused on me and not my husband (my husband works with all the surgeons who see me, since he is an OR nurse and they tend to talk to him more than me).
I asked him about programmable LP shunts. He said he has never had to do one, that the LP shunts for PTC pt's has always worked. He said it would be easy to do and he is going to research it. I then explained all the research I had done and he seemed to like that.
He said he would def. not put in a VP since my ventricles are so small, even if he did it stereotacticly (sp?). He said, of course people with PTC this is a problem in the first place, but mine are so small he didn't want to even try to do a VP shunt.
He talked about the tubing for a programmable shunt would be larger and he has to be careful of my kidney transplant.
Anyway, he ordered an MRI to rule out subdural hemotoma, check size of ventricles and check for chiari...but he said he didn't see any symptoms from my neuro test that I had chiari.
He also ordered an x-ray to view my old two shunts that I currently have and made sure I had copies of the films for myself. My tubing is sooo long and actually goes down and around my pubic area!
The plan is to remove the two shunts I have in me since now I have severe sciatica and constant low back pain from the tubing rubbing up against a spinal nerve and I will see him next week to talk about whether he thinks the programmable LP shunt is the way to go.
Sorry for such a long rant, but I finally feel like someone knows what they are doing..also sorry I haven't been posting for awhile, I have been dealing with major depression and anxiety/panic attacks and have been getting a lot of help to deal/plus medication with those issues (after I admitted I needed help, it was all too much for me, lol).
Blessings to all, Jazzy
Finaly saw my new NS. He is very laid back, my hubby told me he is a surfer and the x-ray tech said he is def. a "dude"
He gave me the most thourough neuro test I have ever had. I liked that he focused on me and not my husband (my husband works with all the surgeons who see me, since he is an OR nurse and they tend to talk to him more than me).
I asked him about programmable LP shunts. He said he has never had to do one, that the LP shunts for PTC pt's has always worked. He said it would be easy to do and he is going to research it. I then explained all the research I had done and he seemed to like that.
He said he would def. not put in a VP since my ventricles are so small, even if he did it stereotacticly (sp?). He said, of course people with PTC this is a problem in the first place, but mine are so small he didn't want to even try to do a VP shunt.
He talked about the tubing for a programmable shunt would be larger and he has to be careful of my kidney transplant.
Anyway, he ordered an MRI to rule out subdural hemotoma, check size of ventricles and check for chiari...but he said he didn't see any symptoms from my neuro test that I had chiari.
He also ordered an x-ray to view my old two shunts that I currently have and made sure I had copies of the films for myself. My tubing is sooo long and actually goes down and around my pubic area!
The plan is to remove the two shunts I have in me since now I have severe sciatica and constant low back pain from the tubing rubbing up against a spinal nerve and I will see him next week to talk about whether he thinks the programmable LP shunt is the way to go.
Sorry for such a long rant, but I finally feel like someone knows what they are doing..also sorry I haven't been posting for awhile, I have been dealing with major depression and anxiety/panic attacks and have been getting a lot of help to deal/plus medication with those issues (after I admitted I needed help, it was all too much for me, lol).
Blessings to all, Jazzy
I hope this is the first step in your journey to being pain-free!
Bax
thanks for replying, I thought everyone forgot about me, lol.
We never forget about you. Lately, it seems more difficult to track new posts. Either that or because I've not been feeling well the past few days I've just become more dumbed down. My memory and cognitive skills have become greatly impaired lately.
I'm glad that you are finally getting some answers and a plan toward becoming well. I'm sorry that you have been on an emotional roller coaster as of late. Depression/Anxiety are hell on earth. When you feel that way keep in touch here. Bax and TJ can certainly keep you laughing, and hopefully the rest of us will make you feel less alone.
You're going to be okay. Who knew it was going to take a neuro surfer dude to make it happen? LOL I personally am still looking for the really cute dude that posed as the doctor in the "Robbie Can You Hear Me?" video on You Tube. I think I need him to be my neurologist. Why not soak up some eye candy while in pain? Huh? I need a little cheering up too! Calling doctor McDreamy please! :)
Keep us updated on your experiences. I have itty-bitty ventricles too and have a VP shunt which may be starting to show some signs of blockage. :( My NS feels strongly that the VP is the best course for me b/c I am losing my vision so quickly. But I am very interested in what Surfer NS has to say about you getting an LP shunt.
Keep the good news coming! When you are feeling up to it - the depression many of us are struggling with makes a crappy situation even crappier. We are all here to support you and feel free to blow off steam and rant in my direction if you need to. We all need a safe outlet to get rid of some of the emotional baggage that we all seemed to have picked up with PTC.
BiancaBlue
I think it's great that you have such a proactive new neuro, and I really hope it works out for you!
Bax, I like your idea. Let's all get one of our own, shall we? ;)
thank you for not forgetting about me.
Sorry you are going through so much, it is such a rollercoaster ride...and I can't stand rollercoasters, lol.
I was really down for awhile and I felt embarassed by writing that I was so depressed...I know intellectually I should not embarrased but emotionally...
Thanks for reminding me its okay to talk about.
I def. have to look up that you tube video...my old NS used to be a fashion model so it was eye candy gallore :)
My next appt. is next friday when he tells me if he thinks the programmable LP shunt is the way to go (he's going to research the pro's and con's of it). So just hanging in there until then.
Jazzy
Thank you for the support and the reminder that we are all here for each other. I needed to hear that. I was suprised because it go so bad after my last surgery..I think the fact that it didn't solve the problem made me feel not so hopeless but like this will never end. The anxiety makes it worse since I can't sleep and I love to sleep, lol.
Plus, sometimes it gets to me when I feel like my whole life is about my medical issues.
I am a very spiritual person and its hard to feel spirtitul when I feel so crappy plus somehow making sense of all of this (if there is any sense to all of this) is challenging.
Jazzy
No problem, I know we are all going through so much....I have brain freezes so often that half my time is spent trying to remember the word for something. I loved on a diff post when you said you try and balance your life and don't want your life to be lived in fear...that really helped me and put my spirit back in warrior mode (though I had to dial it back a bit since it was a little too much warrior for some, lol). Jazzy
I get out today as the proud owner of a VP shunt. Will keep you and everyone posted how it is going. If you need anymore help on your adj shunt research let me know.
TJ
You have such a great attitude but I don't want you to have any more HA's! Everyone's support has helped me so much. I'm still fighting the depression but just taking it day to day and trying to do my best. I'm trying to keep hope up that this next surgery will be my last with this PTC stuff. Many blessings, Jazzy