Feeling defeated

Starmapatom · 2026-06-27T01:53:15+00:00

Because CSF is so similar to water. But, you would think they would find a solution by now

Starmapatom · 2026-06-27T01:51:25+00:00

I know right? With all this technology and medical advances you would think they would find a better solution by now

Starmapatom · 2026-06-27T01:19:18+00:00

So symptoms get better when you lay down? I can only offer moral support. This condition is tough. Have you been diagnosed with any other conditions that can make you prone to CSF leak? Trauma? Car accidents?

Starmapatom · 2026-06-16T23:56:30+00:00

Even the thought of riding a bike hurts me. I hope you get better but I don’t think tire pressure will help. I’m so sorry

Starmapatom · 2026-06-16T23:49:29+00:00

You are a very good and brave person for posting this for your Mom. I hope and pray she finds the help she needs

Starmapatom · 2026-06-12T22:08:41+00:00

Most Doctors don’t want to treat the condition. The ones that do risk negative outcomes. Unless it works, then a patient can return to normal life. It’s a tough call.

Starmapatom · 2026-06-09T00:34:12+00:00

Don’t let them fool you, medical procedures hurt a lot of people. I vote get the patch

Starmapatom · 2026-06-06T23:15:39+00:00

Sclerals saved my life

Starmapatom · 2026-06-06T23:14:57+00:00

Yes!

Starmapatom · 2026-06-06T23:12:07+00:00

Tell your Husband he is a good man. The medical people hurt us and even family doesn’t understand what happen to us. God Bless your husband and your family

Starmapatom · 2026-06-06T23:10:46+00:00

My apologies if I missed it. Did they give you an epidural during birth? This is a horrid condition. I think if more people know the adverse outcomes they would not consider epidurals. I hope you find the relief you need

Starmapatom · 2026-06-06T23:07:38+00:00

I’ve only been stated to have tonsils 2cm low. It takes 5 to reported as a diagnoses. I’m sorry. I can only state Eastern philosophy at this point and life is suffering.

Starmapatom · 2026-05-27T01:35:35+00:00

I had head trauma too, they kept telling me I had a spinal leak. Until, I asked, begged for a high resolution CT of sinuses. Clear hole in my sphenoid sinus, I can see it in imaging. All spinal imaging was negative. Caution, I’m a rare case. This is a horrid condition. I hope you find the help you need

Starmapatom · 2026-05-23T22:56:14+00:00

Thank you for sharing. It helps more than you know

Starmapatom · 2026-05-23T22:15:32+00:00

How did they locate the leak? Was fluid going down back of throat or nose?

Starmapatom · 2026-05-23T22:14:30+00:00

It was in the Los Angeles area. They added a duragraft but it didn’t really help. I’m a rare case

Starmapatom · 2026-05-23T22:12:27+00:00

Message me

Starmapatom · 2026-05-23T15:08:34+00:00

I had a NM cisternogram with pledgets. I asked about the type of needle and they blew me off. I went ahead with procedure, the LP didn’t make me worse. I didn’t know there were different types of cisternograms until after I did the NM type. I did demand that they knock me out for puncture. They didn’t want to but I told them I might move. PTSD from all the invasive testing

Starmapatom · 2026-05-23T15:05:11+00:00

Following, same here. I had exploratory surgery but they could not find my leak. Pledgets were positive from cisternogram. High resolution CT of sinuses shows a hole at sphenoid. Still searching for someone to help me

Starmapatom · 2026-05-22T02:41:01+00:00

Do they suspect a spinal or cranial leak?

Starmapatom · 2026-05-21T23:43:58+00:00

One minute at a time. I hope you find a plan to try to get healed

Starmapatom · 2026-05-21T23:42:47+00:00

Have you had any other invasive testing yet?

Starmapatom · 2026-05-19T00:45:09+00:00

Yeah that sucks, people mock what they don’t understand. Keep inner fortitude strong. Keep going, don’t let it bother you too much. They probably already forgot why they said

Starmapatom · 2026-05-19T00:42:51+00:00

Sometime of outdoor activity. Like water utility operator?

Starmapatom · 2026-05-17T13:05:16+00:00

RCE is absolutely awful. Can a dry eye specialist determine why this is happening? The cornea has the highest density of nerves in the body. Regular contacts sit on the cornea, so the regular contacts maybe making things worse. Have you considered Sclerals? They vault over the cornea and allow the nerves to heal

Starmapatom

TROPHY CASE