MM3,

I was not and never would ignore you. I have no idea why chat did not work. I saw nothing other than this post.

To answer your question, I have never had papilladema, only head and neck pain and Tinitus and memory problems. I had 5 LP\'s and everyone gave me sometype of headache relief so that is why I was such a good candidate for the shunt surgery. My neck pain is completely gone. I still get some small pressure headaches from time to time and hear my heart beat in my left ear sometimes but nothing like before the shunt. Hopefully one adjustment and all that will go away too.

So to answer your question as I understand it. Yes I had high pressure (25-30) without Papilladema and got relief from a LP. The relief varied but generally was 2-5 weeks of relatively minor headache/neck pain.

My problem was that my neuro would not do them more than once every 3 months leaving me with 2 months of missery between LPs so I just said enough is enough, I want a shunt.

Let me know if this doesn\'t answer your question and I\'ll try to track you down for a chat.

TJ

Sorry to hear you are still in so much pain. As you already know I\'m newly diagnosed with PTC and originally my neurologist was hesitant to do a spinal because my Opth. found no papilledema and my visual field test came back fine. When I continued to complain of daily headaches he basically said he\'d do the Spinal tap if I wanted. Believe it or not, i pushed for it because I just wanted some answers. I knew having constant headaches was not normal and soon I was going to have to go on Mystery Diagnosis (LOL). Anway, my pressure was 28 and I think it was done on one of my better days. So far I\'ve had no swelling of the optic nerve or visual complaints.
The pain from PTC is unreal - I wish your doc was more understanding. I think I remember reading that you will be going to a new doctor and I hope they will have some real answers for you. If your asking for a LP, then you have to be in some real pain. I will hope relief comes soon for you!!

MM3, Me again. Tried to chat with you but you did not answer either. This could be my computer so I opened up my facebook so you can try me there if you like.

MM, My papilladema has been stable for over 10 years, no change since Optic Nerve Fenestration in 1998, but my pressures continue to be high, My last Tap in April was 42 and the opthamologist said it couldn\'t be PTC because my eyes are fine, shows what they know, huh?
Hopefully you can get a tap soon and get some relief.
Charlotte

TJ:

Just razzin\' ya. (I did try to get you on chat though.) Don\'t know what\'s up with DS. I knew you were the guy to ask, because I had recalled that you had stated once before that you hadn\'t had papilledema.

I am so glad that you are feeling better. I know it will take some additional time for you to become completely pain free, but, for someone who just had this surgery you are doing fantastic. I couldn\'t be happier for you. With all the pain I\'ve been having, you make me wanna go in for a shunt tomorrow!

Angeline and Charlotte, thanks for responding. I guess the bottom line here is this...

I scolded my nurse practitioner for telling me that she didn\'t think I had PTC or if I did that it was a mild case due to an opening pressure of 29. I explained that her telling me that was like telling someone that they had cancer, putting them through chemo and radiation, time in the hospital, and multiple drugs....and then telling them that you didn\'t think they had cancer or if they did it was a mild form of cancer. After I told her that, my husband came into the room and he later reported that her hands were shaking. Needless to say, she apologized. Then I asked her if it was possible that I had an empty sella, (due to all the neck pressure and sinus drainage), and asked what if any tests were done to make a determination. My husband and I noticed that she didn\'t really seem to know much about PTC. I felt like I was schooling her. So, I asked if she and/or the doctor had much experience with the disorder. (I never really got an answer.) Then she said that she felt I needed to go back on the Diamox, but, she felt I needed to wait until I saw the PTC specialist on the 8th. When I called today, she said I should wait to have a LP when I see the specialist..."It\'s only six more days" she said.

So, ultimately, I think she got her feelers hurt because I pointed out her blantant lack of knowledge and compassion. So, now she\'s pushing me off on the specialist. And, just as I thought, her stating that I didn\'t need LP pressure relief without papilledema is insane.

Thank you for answering my question. I\'ll just keep counting down the days and popping the pills.

Love you all.

MM3

You go MM3!!! I\'m so proud you stood up to her and told her how you felt and how she wasn\'t responding approp. I don\'t know what her problem is, if it is her pride or ignorance to treat you that way, but I find the way she talks and treats you is inexcusable. Though I\'m sorry you are suffering so much and she is making you wait until the next appointment.

Here are two articles that I found about PTC and not having papilla edema (there were many more citing that you can have PTC without papilla edema and some people don\'t even have headaches:

The only truly definitive diagnostic test for PTC is a lumbar puncture (LP) (spinal tap) with the cerebrospinal fluid (CSF) pressure measured when the needle is inserted. In some patients, swelling of the optic nerve (papilledema) can be observed in a thorough eye exam. However, it is important to note that the absence of papilledema does not rule out PTC. Not all patients with PTC exhibit papilledema.

Although it is rare, a person can have PTC without vision problems and/or headaches...Other symptoms affecting PTC patients include: shoulder/arm pain, neck pain, memory problems, awkward coordination, muscle weakness, fatigue, back pain, and depression.

I hope your pain subsides until you next appointment.. you deserve the best! Blessings, Jazzy

MM3 - While I agree that you can most certainly have high pressure without papillaedema, if it was just your neuro that checked your eyes that doesn\'t necessarily mean anything. I saw my old neurologist two weeks ago and when he looked at my eyes he said the papillaedema was gone and that I must be all better now. Last week I saw my ophthalmologist and he said that I most definitely DO still have it and it\'s just as bad as it\'s ever been. He was a bit annoyed with my neuro and said that, as an eye doctor, his equipment is better (a higher magnification than what the neuro would have), so the neuro was not 100% qualified to say it was gone.

Thankfully you\'re getting in to see a new doctor soon though, hopefully it will be a MUCH better experience and you\'ll get some real help!

Jazzy:

My dear friend...thank you for doing that research for me. It means a lot. I did have terrible papilledema when I was first diagnosed and then after the diamox it began to heal. And, of course, I have all the other symptoms you mentioned. Still have that terrible whooshing noise as a constant reminder. Feeling tired today.

KS:

Thank you also. It really helps to hear you make that definition between what the neurologist sees and what the optho sees. I don\'t have double vision, but sometimes things get blurry or I have difficulty focusing. When my papilledema was severe, I wouldn\'t really have picked up on it without the doctors telling me I had it. So, I could have it now and just not know. Regardless, I am bringing a bouquet of flowers and chocolates to my first visit with this specialist. I\'ll give them to her on my hands and knees and thank her for taking me as a patient...because all the other doctors I\'ve seen thus far are idiots!!! LOL I\'ll keep you guys updated of course.

MM3

MM3 - I don\'t have ANY symptoms of my papillaedema anymore either. No blurred vision, no double vision, no nothing. Ironically, it was the double vision that got me into this mess in the first place and led to the diagnosis of PTC, but it\'s been gone ever since my spinal tap (except for one brief episode weeks ago). If you\'re still having blurred/hazy vision, I would think that the papillaedema is still present - my optha told me that it is a precursor to double vision, so that would indicate that something is still off. Regardless, I\'m so glad that you\'ll be seeing the new specialist soon! :-)

MM3,

I have never had papilladema at any point in having my PTC.

But in my relapse I have had ridiculously painful headaches, malaise, nausea, sensitivity to light/sound etc...all the basics of a good set of bad symptoms. The day they hit their peak, I called my doctor crying because I was such pain, and my eyes had suddenly turned red that day, people thought I was either crying or drunk! (We were at a young persons\' wedding, so everyone was drinking except me, so the assumption of being drunk or crying was normal for that day, ha) But I had seen my doctor two days prior, and my neurologist only one day prior and they both had looked at my eyes, and hadn\'t noticed anything too serious. So I just realized I\'m rambling, but my point was, I have always had my headaches and symptoms without papilladema, and my doctors HAVE done taps and recommended taps when these symptoms were at their worst.

So anyway, I hope you are feeling better, or will be soon!

-Kayla