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Old 03-08-2009, 12:29 PM
Alesis Alesis is offline
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Post Feeling fluid in the head/left sided headache/dizziness

Hi all:

I am currently undiagnosed. I am wondering if I have this condition, as I have some of the symptoms and I am waiting for my referral to the neurologist to come in the mail.

I was wondering something: Can you feel the fluid moving about your head? I get these sensations throughout my head that fluid is moving around. It occurs in the spots that the pain occurs in, along with some other spots.

I have headaches that start in the morning when I stand up, get worse in intensity as the day goes on, and finally start to go away when I lie down. I also have dizziness/fatigue, which also gets worse in intensity as the day goes on, nausea and confusion. OTC meds do not seem to want to touch my headaches.

The only thing I have felt like doing for the past three weeks is lying down. I don't go out, and I have missed several hours of work because I simply _can't function_.

All my pain is on the left side. I also get neck and shoulder pains, all on the left side.

Some more background info: Although the dizziness/fatigue has intensified more recently (see below), my headaches have occurred on and off for four years. I fell four times on the ice in February 2005. I initially developed back pain, which went away after physical therapy. A couple of months later, the headaches started.

I had a 5 cm, benign tumour of the parotid gland removed in August of 2008. The pain went away for a couple of months after that, only to return.

The "fluid-in-the-head" sensations started after the surgery, if I recall correctly.

The pain/dizziness/fatigue has intensified in the past three weeks and my body feels like it's trying to tell me something. I hope I get the referral soon!

Some other info: I had my eyes examined Friday by my regular eye doctor and they were completely normal.

Has anyone with this condition actually _felt_ the CSF fluid flowing through the head?

Does anyone's symptoms match mine?

Thank you for your response.

A.
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Old 03-08-2009, 11:20 PM
mot mot is offline
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You sound like you might have a CSF leak, but the only way you can tell is with the proper tests..
I don't know what part of the country you live in but Wouter Schievink, who is a neurosurgeon at Cedars Sinai in LA is an expert in this condition. Google him.
I am one of the few others here that get one sided headaches which may or may not be from my CSF leak since I am a life long migraine sufferer.
If you can't make it to LA find a good neurologist and tell him your suspicions.

M
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Old 03-09-2009, 04:57 AM
Alesis Alesis is offline
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Thank you for the suggestion! I am in NY state, far away from LA. I will Google him anyway to see what comes up.

I tried lying down in with my feet elevated last night (as close as I could replicate the Trendelenburg position) and it seemed to alleviate the pain. Sometime in the night, I turned on my side. Now that I am sitting at the computer and the pain is slowly creeping back in.

Hopefully my referral to the neurologist will come in the mail today so I can get the ball rolling.
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Old 03-09-2009, 07:19 AM
Robbysmom5 Robbysmom5 is offline
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Hi Alesis -
My son would sometimes get sharper pain sensations at different locations around his head. This happened a lot the first few months, then stopped a couple of months, then started again after his last blood patch. He was also dizzy during the times he had this pain. We are from NY too, but unfortunately I cannot recommend any leak-experienced doctors. (but could warn you who to keep away from if you want to PM me
Good luck with your referral.
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Jeanne
Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
Robby's Leak Story
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Old 03-09-2009, 09:43 AM
xtine xtine is offline
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I believe I have a leak in my ear. My leak was pretty bad last nite and I felt fluid in my sinuses and it driped out of my nose a couple of times.

If I go from a bending position to a standing position I can feel and hear fluid like water rushing thru a pipe. I can also feel the csf flow down my throat from the right side.

My leak is on the right and most of my symptoms are on the right side. I have a lot of pain on the right.

I hope this helps. Good luck with your referral and I hope they find the leak.

Christine
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Old 03-09-2009, 11:10 PM
Alesis Alesis is offline
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Thank you both for your insight.

Y'know, I have heard those gurgling sounds in my head/neck/throat for years and just chalked them up being akin to a stomach gurgle. I never thought a thing of it. You hit the nail on the head when you said that they sound like a water pipe. I usually hear it when lying down, or changing positions.

The "watery" sensations I can best describe as cool or warm, damp spots on my head. I sometimes think I feel it moving around, too. I also sometimes feel tingling sensations, and the occasional click or pop.

When I touch the spot where I feel the sensation, I notice a very slight coating of clear liquid on my fingertips. It's very subtle; just enough to make my fingers a little shinier. Two of these spots where I notice are on the scalp; another is by my ear. Can this stuff leak through the skin? Or am I over-analyzing?

Thank you all again.

A.

Last edited by Alesis; 03-09-2009 at 11:52 PM.
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Old 03-10-2009, 12:12 AM
leakyinwv leakyinwv is offline
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Just a short note, although I was not a cranial leaker I did have a csf leak in my neck caused by a botched fusion surgery. I spent 3 years trying to get help from local drs and hospitals in Ohio, finally one month ago I got hooked up with Dr.Scheivink at Cedars Sinai. On my first consultation appointment this man was able to answer every question I had and give me a understandable reason for all the little quirky symptoms that go along with a csf leak. My dh and I were impressed to say the least. I was admitted to Cedars for a total of 4 weeks but after 3 different procedures we feel that I am "fixed". I am now home and recovering very slowly but could not be happier with the whole experience there. So my suggestion is to get the contact information for his office and start there. I know it sounds like a long way and a lot of expense but it is well worth it if you consider all the time and diagnosising and pain you may endure in the mean time. I do believe you will have to send any and all med records and films to his office prior to making an appointment but trust me it is worth the effort.

Connie
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Old 03-10-2009, 12:39 AM
xtine xtine is offline
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alesis- you might want to look into the symptoms of a perilymph fistula... do u have dizziness, vertigo, hearing loss etc?
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Old 03-10-2009, 08:41 PM
Alesis Alesis is offline
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Quote:
Originally Posted by leakyinwv View Post
Just a short note, although I was not a cranial leaker I did have a csf leak in my neck caused by a botched fusion surgery. I spent 3 years trying to get help from local drs and hospitals in Ohio, finally one month ago I got hooked up with Dr.Scheivink at Cedars Sinai.

So my suggestion is to get the contact information for his office and start there. I know it sounds like a long way and a lot of expense but it is well worth it if you consider all the time and diagnosising and pain you may endure in the mean time. I do believe you will have to send any and all med records and films to his office prior to making an appointment but trust me it is worth the effort.

Connie
Hi there,

Thank you for the suggestion. I am sorry to hear what you have been through.

It sounds like Dr. S. is the man to see. What kinds of tests do you have to have done before you can talk to him? I am not even sure I have this; just considering the possibility.

I would hate to get all the way out there to see him for a consult, only to be asked "who told you that you had a CSF leak?"

From what I gathered on the roll call thread, the symptoms vary from person to person. However, I would like to have a confirmation from a doctor that I have this. Part of me feels like I am over-analyzing this, trying to find a condition that matches my symptoms. Yet at the same time, I feel like I have to be my own advocate, considering the cards I have been dealt in the past.

The symptom that drew me to this possibility is the dampness-on-the-head sensation. Hopefully more people will come forward with the same symptom so that I don't feel like I am crazy.

I've read about the various tests online...most of the doctors I have seen around here don't even want to bother with an MRI!!!

For years I was told it was fibromyalgia (yeah, right), then possibly tension headaches. When tension headaches were ruled out, along with cluster and migraine headaches, I was referred to a first neurologist (one that tried to blame it on my weight and turned around and suggested Seroquel for my sleep problems). For those who don't know, Seroquel is notorious for weight gain as a side effect!!!

My question is: How do I make the most of my appt with this new neurologist, once I receive an appt with him/her? What steps do I take to ensure that I receive the proper testing? The doctors around here seem so darned conservative, and/or incompetent.

Thank you all for hearing me out (and letting me vent!)

A.
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Old 03-10-2009, 08:42 PM
Alesis Alesis is offline
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Quote:
Originally Posted by xtine View Post
alesis- you might want to look into the symptoms of a perilymph fistula... do u have dizziness, vertigo, hearing loss etc?
Thank you for the suggestion. I googled it and it does not match my symptoms...I will look further though.
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