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, had my revision since my LP shunts (yes, I had to LP shunts in me) were taking too much fluid off my brain.
So now, low pressure headaches returned after 5 days from surgery, so what ever is left in me is still draining too much fluid from my brain.
I talked to him today and I asked if this was a normal part of the healing process (my low pressure headaches returning) and he said, I quote "I don't know". Great. He said he wants to wait for a couple of weeks to see if it resolves on its own. Otherwise, the scary part is he said he would have to do another revision.
At least I had 5 days of no headaches.
I am trying to get a referral to another NS.
It's tricky because my husband is an OR nurse and he works with the NS and the one I want to get a referral to.
I was so down earlier but now just trying to deal with it on an hour to hour basis (sometimes minute to minute, lol)
but I do say, this really is no fun at all.
sigh, Jazzy
So now, low pressure headaches returned after 5 days from surgery, so what ever is left in me is still draining too much fluid from my brain.
I talked to him today and I asked if this was a normal part of the healing process (my low pressure headaches returning) and he said, I quote "I don't know". Great. He said he wants to wait for a couple of weeks to see if it resolves on its own. Otherwise, the scary part is he said he would have to do another revision.
At least I had 5 days of no headaches.
I am trying to get a referral to another NS.
It's tricky because my husband is an OR nurse and he works with the NS and the one I want to get a referral to.
I was so down earlier but now just trying to deal with it on an hour to hour basis (sometimes minute to minute, lol)
but I do say, this really is no fun at all.
sigh, Jazzy
As for hospital politics, it shouldn't matter. You are in pain, it's not personal, and a second opinion should be handled with professionalism. I would hope your NS would see it that way and your husband would not have to feel like you guys are cheating on him or something. Although actual experience may be different, is your husband worried?
Anyway, I hope you feel better soon!
Bax
Your right, I talked to my husband and he is not worried and my NS would not be upset since its not personal. I get stressed about small stuff I think becasue the big stuff is so overwhelming. Thanks for helping me put it in perspective. I tell ya, two PTC heads are better than one, lol. (But no PTC heads would be the best!)
Jazzy
Can I ask, how long between the first shunt and it being revised for low pressures?
I am so glad your husband is there to help you with your decisions. Your doctor will will understand that since he does not know, askin a doctor that might is probably your best choice.
Charlotte
It always makes me feel a bit uncomfortable when docs say things like "I don't know" and "let's wait a couple of weeks," as if they have their fingers crossed behind their backs thinking to themselves "please let this go away, please god let it go away, because I haven't a clue what to do next!"
Anyway, I don't think you should ever feel the least bit bad about getting a 2nd opinion or a 3rd or 4th. You should get opinions until you are comfortable with the doctor and the responses your are given.
My brother literally got 11 "2nd opinions" before he had a small growth removed from his spine. That's just how long it took him to feel comfortable and find the right doc and hospital and treatment plan. You should get as many opinions as you need too.
OK...this is a too long response...
I hope you feel better soon!
Lucy
I am of the opinion that you are your own best advocate and you should not in any instance back down on what you feel is best for your care. I pressed my doctors for a year and a half to find answers. I had NS literally kick me out of their practice because I wasn't satisfied with their diagnosis of merely migraines when I had dealt with those most of my life and knew that this was different. When I was recently diagnosed it was because I had been reading up on hemiplegic migraines on the computer and found a drug named diamox. When I clicked on the link to diamox, I found that it was used for a condition called IIH and literally two weeks later I ended up in the emergency room. Remembering what I had read I mentioned it to the ER NS and stated that I was having these symptoms but to date had not had a LP. So, a LP was done and here I am.
Now, that being said, I do not suggest that you wait around for the right doctor for a year and a half with pain and suffering. But, do not be afraid to stand up for yourself. As Bax said, "It's not personal".
As for the shunts...Has anyone had these done without secondary revisions and low pressure headaches? Have these shunts truly had much success? What are low pressure headaches like? Are they as bad as the high pressure ones?
I hate to be the ignorant newbie on the block, but, I am curious should I ever cross this bridge and need to make these decisions for myself.
In the meantime, I'm so sorry for your suffering. Know that I am praying for you and sending hugs your way. Hope you find relief soon.
-MM3
My shunt lasted 4 years with no low pressure, so yes they do work when the pressures are just right.
TJ is going in for a drain test to make sure they will work for him, I think thats an awesome idea.
My revision was for late term failure, and my pressure went up not down when it failed, no blockage, but I have other issues.
If you are considering a NS consult, I would request a CINE MRI if they want to see about a LP shunt, and a Drain test to make sure it will correct the headaches.
I am right now advocating that everyone have a CINE before shunting because of what I know now, and a lot came to light with this last round now I am tryin to do more research before I head to the University Hospitals to attempt to get some relief.
Charlotte
Forgive my ignorance...but a CINE MRI??? Can you explain? Maybe the meds and lack of sleep are getting the best of me today. Okay...not really..I just have no idea what your talking about.
-MM3
It is used to make sure there is nothing obstructing the flow and make sure shunting is TRULY safe with an LP shunt.
Charlotte
Thank you. I thought I was having migraines, which happened about 1 week after my first revision (but I was mostly in bed prior to that). After this last revision attempt the low pressure headaches started right away.
Hi Lucy, well at least I can say he's honest, lol, but yeah, the "lets wait and see" makes me realize he has not idea what to do next.
I'm glad your brother finally found someone to help him, its my crazy HMO insurance that makes it a little hard, (not really that hard, I swear I should just get checks preprinted with my primary Dr's name on them).
Hi MM3,
Thank you. I'm now in the process of getting all my MRI reports to this new NS I am going to see, so...slowly but surely. I'm working on being more assertive with Dr's, funny though, when it's to help someone else I'm all up in the Dr's face.
Low pressure headaches are different in that they will go away after you lie down for a certain amount of time (thus, why they are called positional headaches). They mimic migraines very closely...nausea, vomiting, sensitivity to light and noise.
When I had high pressure headaches they were all the time and I wasn't affected by light but noise almost killed me. Being dx. with papilla edema is a main symptom that they are high pressure headaces.
Again, thank you all for helping me and your kind words. :) Jazzy
ps. sorry for my horrible spelling.
Jazzy
"There is a light at the end of the tunnel and it's not just another train coming".
My neurologist was floored when he saw my pressure the first time, (old doc) said there is no way it could be that high without affecting my optic nerves, Well it is and it was...this time I haven't been back to Optho yet,to see but my vision is significantly blurier this time around
Jazzy I like that line, its not just another train, I haven't felt that way lately, but it is very encouraging.
Charlotte
My memory has gotten worse since this whole PTC thing started, I tell ya if I remember my name in the morning I'm on a roll!
Jazzy