Topic: Question on Optic Nerve Pressure/Swelling - So Confused - PTC Like - Any Experts?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This confuses me terribly and I'm really hoping for some feedback from some experts here who personally dealt with this.
As probably everyone knows, I live all the time with pretty intense head pressure and eye pressure. Not as much blinding headaches, but a pressure/squeezing feeling. It makes my balance feel off, eyes tear endlessly, and just uncomfortable beyond belief. I also have dry heaving, but I never vomit anything.
I'm also very overweight. My mid back and neck are very, very stiff most days too. Even my forearms get bad. The worse these all are, the worse my eyes bother me.
For the longest time, some non-LLMDs thought I had Pseudotumor Cerebri because I had risk factors and symptoms. I am male though and this is more prevalent in females. Well in early 2012, I had a lumbar puncture and my opening pressure was 22. This is on the high normal side, but I believe not unexpected at all given my weight. They surgically drained some CSF that day and took my pressure to 17-18. I got ZERO relief immediately or long-term from this change. In fact, it created a headache for a few weeks.
It was a worthless procredure IMO, but needed to rule this out. When you live for years w/this, you need an answer.
Well the whole time, a local neuro-opthamologist has been doing eye ultrasounds and visual field exams. For 12+ months, my optic nerve has shown significant pressure on it. He confirmed today the nerve itself is not diseased, but the pressure on it is not good. They can give no reason why. He said 70% of the time, they never know why.
I had a clean CSF analysis when done.
After trying multiple eye drops and other strategies w/zero success, the pressure was a bit higher today than before.
He is recommending a procedure called an Optic Nerve Sheath Fenestration. It scares the hell out of me. You are put out for surgery and they make incisions in behind your eyeball to drain the CSF. He said it "could" make a big difference in head pressure, headaches and eye strain/pressure. He said 80% success rate, 0.5% chance of losing vision in the eye, 2.0% chance of eventually losing vision long-term if this pressure doesn't subside. I know 0.5% is small, but that is frightening to me. It's small, but not THAT small.
My million dollar question, how on Earth would this procedure provide relief when?
(1) I never had PTC to start per the LP opening pressure;
(2) The pressure relief given during the LP provided zero help in my symptoms.
This is a very tough decision. I asked lots and lots of questions, but the more I research, the more it doesn't tie to me.
Does anyone know of this procedure or had it performed? I'd love to hear real feedback.
Has anyone ever had confirmed pressure on the optic nerve and reversed it? He told me all the IV Abx in the world wouldn't. I found this hard to believe if infection related, but this is way out of my league.
Any PTC sufferers or eye patients here? Thanks so much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I have what they have called Psuedo papilledema. I had a lumbar puncture. Pressure reading of 19 normal, but a higher normal.
My optic discs do not appear normal opon examination, they look swollen. After MRI's and lumbar punctures, and continual examinations... it was ruled that I was just born that way...
However, after treating with Cipro for 3 months or so the pressure on the optic nerves was noted on my right eye to almost be at a normal level.
The regular opthalmologist didn't want to even take pictures. It took a special squeezed in appt and a 4 hour drive to the neuro-opthalmologist to confirm the change and to get the pictures to document the change.
As any change was a big deal in my case, as we had been looking at a stable non changing inflamation for over 2 years, then a change. Which proved that, or at least is theorized that the lyme is causing the inflamation, and the antibiotic is helping to reducs the inflamation.
I haven't ever heard of the procedure that they want to do for you... So, I don't know... Can't be any help there.
The LP didn't help me out any either... they had considered pseudo tumor cerebri with me as well.
I'm going to the neuro opth again in the begining of Jan. I have been off meds for two months and my eye symptoms (as well as many others) are back and I expect that my optic discs are going to be swollen again... and if thats the case, I think that will prove a diagnostic tool in the treatment of my lyme disease.
I also deal with the pressure headaches, as well as the cluster headaches, and the loss of vision/blurry vision as well as the cluster headaches/ pain in around eye ball and frontal headaches. Headaches are daily. Its just a matter of which type I have when and to what intensity.
Good luck
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Laura, thanks for the input. We see the same doctor. He's a nice guy, but has a lot of optimism about every attempt tried. To date, nothing has succeeded so as expected the patient becomes very leery of risky things like what is proposed.
I don't feel any of these physicans truly acknowledge the havoc these infections play.
When you had the improved pressure on the testing, did it correlate with reduction in symptoms such as pressure headaches/eye strain/etc.?
My personal opinion is that if someone is even suggesting a significant surgery such as this and infection can be the culprit, you order IV antibiotics first as a test. Anything less seems like jumping the gun. I never have had IV. I think we have similar issues.
Note, it is often stated antibiotics themselves have anti-inflammatory effects. Doxy, Biaxin are a couple. I'm not sure about Cipro. Some docs will argue back it's not killing bacteria, it's just anti-inflammatory in nature and helping. I'm not sure I buy into that though. I'm not educated enough.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Here is more info on the proposed procedure:
Just the fact the first few lines of this article state it's used for PTC stumps me why it's proposed. My pressure is within limits for an obese person (under 25).
Why would someone expect a patient to receive relief if the test results don't indicate this issue? Maybe I'm missing something huge, but it seems like proposing leg surgery for a bad shoulder. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
this sounds awful. i dont know anything about it in humans. i do know that horses with lyme often get optic neuritis...it is also called uveitis. i have no idea if it is related to humans. take care.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
seek,
I just found this thread on head pressure. As I mentioned in your other thread, I had very bad head pressure for yrs along with narcolepsy. As I have mentioned before, parasites can invade every organ, tissue and brain.
When I did salt/c and antiparasitic herbs, I had parasites exiting from my nose, eyes (small gritty things)and scalp. Not as scary as it sounds, but that's what happened. These parasites can definitely cause pressure in your eyes.
Is there a doc in your area that does ART testing and follows the Dr. K. protocol for parasites? A naturopath maybe? I have felt strongly for a long time that you are loaded with parasites.
FYI, parasites can cause weight gain. Google it. You may also want to visit the curezone parasite forum. Hope you can get on top of this sooner than later.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
P. S. The other infections whether it be the Fry bug, babs, bart, bb etc will be much easier to eradicate once you get rid of the parasites according to Dr. K.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Seek... Yes, my symptoms corresponded with the lower pressure on the optic disc. However, I was seeing him more often because the Cipro was known to cause more issues on the optic nerve, I and they wanted to keep an eye on it.
But as I think of it... there was an issue that made me set the initial appt with him when I was taking the Cipro... initially the Cipro made my eyes worse.
I had done Rocephen IM for a month, then some bicillin, then back to Cipro.
I can't remember if it was the initial apt on the Cipro the eyes were better, or the 2nd. I mostly remember having an issue with my local opthalmologist, then having to go into him, to get pictures to prove the bettering condition of the optic disc.
Ive seen a different neuro opthalmologist before a couple times... and this one does things different... makes me wonder, is he truly a neuro opthalmologist?? or just a opthalmologist who did a bit of extra training??
What do you think Seek?
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Laura, I sent you a PM with some thoughts.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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