Can someone help me understand my diagnosis and symptoms? CSF leak causes Dementia

[Robbysmom5]

Thanks for the update. Do you know how much blood was used? Sorry about the increase in vision problems - even though there are many different patch experiences, I've read experiences like yours (bobble head, tingling ... maybe not the vision symptoms increasing). The blood in the patch is only around for a few days and then it would need your newly-healing dura to hold in the CSF. Please try to rest/laydown .... it is very important for healing for some patients (even though not recommended by many doctors). And remember, patches can be repeated!

[Mikau]

Thank you. I have been resting lots! Vision problems still there, but reduced alot. However my horrible head aches came back full blown. But they arent constant, just a few hours here and there.

[Robbysmom5]

Thank you. I have been resting lots! Vision problems still there, but reduced alot. However my horrible head aches came back full blown. But they arent constant, just a few hours here and there.

I am glad the headaches only last a few hours. I am curious how they go away after a few hours. Do you need to lie down for a while? or they just go away on their own? After leaking for a while it can take time for your body to regulate CSF production and you could feel a bit high pressure and low pressure at times.

[Mikau]

The first time my head ache returned it only lasted about 30 seconds, I was sitting up. The second time which was later, the next day began in the morning and lasted for hours and hours. I called the doctor and she suggested resting some more which I did and it went away. It later came back as I was riding in the car on our way to Thanks giving dinner and ended a few hours later. I didn't rest that time it just went away on its own. Im not sure if I blew the patch or if its just the fluid settling like you said. My follow up is in a few weeks so I will know for sure then. So far all of my symptoms have gone- even the vision, excluding the slow motion trailer when something moves. So I am hoping they don't pop up again, this has been the longest without visual issues and even the other sensory issues. So it may have worked : )

[Robbysmom5]

Sounds good so far! When Rob leaked, the ONLY thing that helped his headache was lying down. After he was patched, his headaches could get relief by being still. Ever since he leaked, car rides can still bring on a headache for him ... not sure why ... but they only last a short time then go away. Good luck!

[Mikau]

Thanks- You have been so helpful this entire time! Its hard enough understanding my own diagnosis let alone that no one else had until I found this page : )

[LynnFromCanada]

Hello..l hope you are feeling better... I too am a mom with two young kids (5mos and 2)... I am a traumatic cranial leaker that is on month 4 of bed rest... Awaiting some more precise diagnostic imagery.

I know how hard it is, I also sometimes feel like I am going crazy! Just hoping that we all get some relief soon! Hope the BP holds!!

[Mikau]

I am sorry to here that. I hope they fix you up soon! Its been over a month since my blood patch i have my follow up appointment this week. I am sure the blood patch held as all of my symptoms have minimized so much but I am concerned as they still linger. Has anyone else had their symptoms such as the head aches, balance problems or vision problems linger for a period of time?

[LynnFromCanada]

So happy to hear that you are improving... Just to be on the healing side must be great.

Just make sure that you don't do too much too soon. After all the time suffering you want to make sure the BP heals.

I am not an expert but I have read it takes 6 mos for symptoms to subside.

Did u have any high pressure discomfort after BP?

[Mikau]

flying after blood patch

Hello. Yes I had a huge increase in symptoms after the procedure which then minimized after a week or so. I am still having vision problems daily and only have the head aches now when standing up too fast or moving my head too fast. But I am waiting the reply of my neurologist to my next question. If anyone has any advice let me know. I am hoping to be flying to Alaska with my son in two weeks, its a 14 hr flight there. I am waiting for my neurologist to clarify if I am okay to fly right now or not. Has anyone else here flew after their procedure? What are the risks?

[Robbysmom5]

Hi - I am glad you are feeling better ... sometimes some symptoms do linger but I am not sure why. Many people often wonder if they are still leaking but to a lesser degree ... or if there was some sort of nerve damage done during the leaking that is causing this .... or is your body still getting used to adjusting its pressure?

Re: flying? This has been discussed a lot on the old fourm. I will attached a few links below. Many people with leaks and recently sealed leaks fly ... the leak expert Dr. S is in LA and he has many patients that need to fly in for treatment and then fly home.

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The next is from a cranial leaker advised against flying ... but they included some tips to help with ear pressure that seemed interesting:

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Ask your doctor.
I hope you continue to improve!!

(ps - My son has not flown since leaking 3.5 years ago. We were afraid of a returning headache, even if temporary, after the travel. But he is ready to try it now.)

[Mikau]

Thank you! You have been so helpful!

[Mikau]

The planes turned out very well! Thank you to everyone who helped. Im still waiting on a few symptoms to go away but progress has been good. Next thing left is a re-mri of my brain.

[LynnFromCanada]

That is great news!!

[sososleepy]

Hi, I just read you're thread here and was wondering how you are doing. I too have the same type of symptoms as you from low intracranial pressure. I get the sever headaches and confusion on a daily. It's difficult for function and care for a family when you feel so out of it and in pain. It get really scared with all the cognitive symptoms. I had an intracranial pressure monitor put in my head for 5 days and the entire time my pressure was in the negative. I have had so many blood patches that cauahoosed temporary back pain but severe enough to land me back in the hospital for 2 weeks. I haven't had a CT myelogram cuz i've been afraid to cause a worsening of my existing symptoms. This has been going on for way to long for me and my symptoms have been progressing so badly that i made an appt with a new spine DR, who i'll be seeing on Wed. I'm going to bite the bullet and get the CT myleo. I did have a full spine mri which showed perineural/csf cysts. From what i've read on the web; these kind of cysts could leak and may be the cause of my low pressure. If you ever want to chat, shoot me an email. Hope you're feeling better:)