H/A-Acid Reflux for 2.5 Years- CSF leak????

[rrkelley]

I had an epidural (2002) that did not take when I had my scheduled Csection 5years ago. They had to perform another epidural seconds after the first. I immediately went into labor and had to be gassed. I had more problems during the operation. My catheider exlpoding during re-inflation and they had to go back in an find the pieces and sew me back up. I went home after 2 days in maternity. With in 24 hrs, my body had swelled up so severly that I could not even where my husbands size 11 flip flops! I called the Dr. and he said get back to the ER STAT!! They found that all my major organs where filling up with water and did not know why. I spent 5 days in the Heart floor of the hospital. I had every heart test done, blood clots in the legs. The only thing they could come up with was shock. From the Csection, the tubal ligation and the bladder retreivel for the cathieder. They drained about 20lbs of water from me. I went home with a bladder bag for 10 days. After that, I lost weight, gained weight, lost and gained. Finaly 2 years of feeling some what better, (I never felt normal after all of this) I did the atkins diet. Lost 22lbs in a month and decided to go for a jog (which i never do). I was so impressed, I jogged for 2 miles. Came home, clothes and all and jumped into a cold pool. from that day forward the h/a came on slowly and has been there ever since.


I have been seen by Neuros, Chiro, Allgerist, ENT, Emerg. Room, Acupuncture, every migraine and H/A med. Had MRI w/ & w/out contract show negt. for any masses. (don't know if thats all they looked for). CAT of sinus was "beautiful" totally black on films. These test were done in the early stages. Id say about 6mths into the h/a. No allergies, I do have a deviated septum which I had surgery at age 16. ENT said I could benifit from another surgery. Accupunture and Chiro pissed it off worse. Excersise, even walking across the house hurts everything. I feel like I did after I gave birth, my whole body aches, but my head from my upper back to my forhead burns. I also have gone to the ER for sharp falling asleep pain in my left arm. The ran more test for the heart - all was good. I am also a sufferrer of "Acid reflux" is what they say, I have severe stomach pains. All this came about the same time as the h/a. The pain never goes away, but it is eased by laying down. It feels like I have concrete in my head. When I bend over, my nose does not "run" it does get moist and usually in the AM I am blowing for about an hour or so. (clear). I always feel stuffed up. Also when I bend over it feels like hot water rushing from my neck to my forhead and I get very dizzy. I have very poor balance now, I forget conversations I just had.

[LauraL840]

but my head from my upper back to my forhead burns.


The pain never goes away, but it is eased by laying down. It feels like I have concrete in my head. When I bend over, my nose does not "run" it does get moist and usually in the AM I am blowing for about an hour or so. (clear). I always feel stuffed up. Also when I bend over it feels like hot water rushing from my neck to my forhead and I get very dizzy. I have very poor balance now, I forget conversations I just had.

These sets of symptoms you've described are VERY MUCH CSF leak symptoms. The biggest one that jumped out at me was that you describe your headache as 'burning'. That's a UNIQUE characteristic that's not found in ANY OTHER headache with the exception of meningitis and subdural hematoma. With a clear brain MRI, you don't have a subdural hematoma and you don't mention any symptoms that are consistent for meningitis. So it sounds very 'leakish' to me! Not every leaker describes their HA as burning, but it is unique attribute described by some.

My husband became a chronic (21 month long) leaker following a diagnostic lumbar puncture. He had meningitis at the time (hence the LP) and for a long time attributed the HA to 'post-meningitis' healing. He has always described his HA as if a set of gas logs were in his brain and the pilot light was always on. Sometimes it would be like the logs were set on low (little burning HA), other times it would be as if someone cranked the gas up on high (very intense excruciating HA). Lying down would ease the HA off, but it NEVER went away!

I'm sorry for all you've been through, particularly with raising a family! I know it's so hard to make it through each day! This is a great support board, it's been a life-saver for our family! I'd start by reading the first three 'sticky' threads (useful websites, advice, leaker roll call). That way you can get to know more about leaks, what to 'do', and everyone here.

Where do you live?

[rrkelley]

But can it just show up 3 years after an epidural? Or did the jogging insident bring it back?
Should I go to the ER?

[LauraL840]

Some people have a leak, and it heals on it's own (over time, or rather quickly), and then some seemingly benign incident re-opens the leak and they don't necessarily relate the two events. Every leak and leaker is different. Some leaks develop spontaneously (no apparent cause or trauma) and the leading experts (of which there are FEW) suspect an underlying connective tissue disorder in many spontaneous leakers.

How long has this been going on for you?

I seriously doubt the ER will get you anywhere other than hanging out for 8-10 hours in misery. Now, if you have a fever and stiff neck, coupled with your headache, then you have symptoms of meningitis and should go to the ER to be tested.

The best advice I can give you is what I've already said. Read up on those threads and educate yourself. Then you'll have a better idea about what questions are LEFT to ask (the threads will answer most of the one's you're going to have) and you'll also know better where to go from here! :D

If you can't STAND to read over them (aggravates HA, etc), do you have someone who can review most of the threads and give you the 101? If neither, then just ask away and we'll all chip in to answer your questions as they arise.

[Concerned Gal]

Hi,

Somethings you mentioned make me think it's possible, and other i'm not too sure.

Yes, it sounds like you had a very traumatic labour experience (glad I read this after my c-section :D) No seriously, it sounds terrible. The epidural issue is interesting and can point to a csf leak (you had two pokes for the price of one) but I think the catheter and aftereffects (organs issues) aren't so much related in my mind.

Have you had your thyroid tested. I know you were exercising and stuff but the weight gain/loss and general off feeling might have something to do with your thyroid function. An easy blood test to have..if you haven't already.

Have you had your stomach issues looked at with a endoscopy? It is possible you have something separate going on here which could be easily treated.

As for the nose fluid, my nose also get a bit moist/runny when I bend forward. I have done a survey amongst non-leakers i know in real life (charming eh :D) and it's pretty common for everyone. No one talks about it though. But what I have been doing is when it gets moist and runny enough for me to wipe it onto a tissue, i do a little bit of an assessment against some criteria that the leakers here have given me (see thread "Ear and Nose Leakers Describe the Fluid you are Seeing" - might be called something slightly different). I assess for stickiness, consistency, and also the halo effect when pressed against a tissue. Of course this isn't a definitive test but it helps in working out whether you need to follow it up medically.

But finally your last statement you made about bending over is spot on what I get. It could also be a blood pressure issue, but the sensation you describe also comes with a spinal leak (well mine anyway).

I'd be getting someone to look at your MRI films (with contrast) specifically looking for meningeal enhancement, or as it was awhile ago, get another one done looking for this aspect, as a first step.

Good luck.


P.s *sigh* jogging - oh how I would love to strap on some running shoes and go hell for leather on the pavement. It's a real strong urge I have sometimes, just to run somewhere, but alas i suppress it for fear of my head bobbing right out of my head :rolleyes:

[rrkelley]

I have had my stomach checked w/ endoscopy. They say it is acid reflux. My primary said he had check thyroid - don't know if he did? I have my records tho.

I am going to check out the ENT threat you mentioned.

My body doesn't really hurt so much, just from my neck up. Is that a symptom? I have been on Hydrocodone for almost 2 of the 2.5 years for the headache. I have been the rebound headache route (currently doing it now) I have been off all meds except my prozac for 4 days. From my neck up- just want to cut off my head. I have not felt right since my stint in the hospital. I am young. I am 33.

I have read that rebound headaches don't tend to get worse w/ movement. But this constent headache hurts when i am moving or not. I can sleep thru the night, but upon rising i am in real bad pain. I also have severe swelling in my hands periodically thru the day. From one extrem to the other in a matter of hours.

DO I get a 2nd opinon on the MRI w/ contract or ask the same assjack to look at it again?

I go back to the nero next week along w/ the pain mgmt doc. I will ask him the odds that it may be an undetected leak. He has blown all my suspisions out of the water so I don't know if i would be better off going to the ER and demand the various leakage tests?

Thanks for your input!
rhonda

[LauraL840]

He has blown all my suspisions out of the water so I don't know if i would be better off going to the ER and demand the various leakage tests?

Thanks for your input!
rhonda

If he's TESTED all your suspicions (or given you good sound MEDICAL reasons for why your suspicions aren't possible) then you've got a good, no great, doctor.

However, if he's blowing you off and dismissing your suspicions, it's time to fire his lazy rear and find a doctor who will take you seriously!

Where do you live? Perhaps someone here can suggest a name!

*cent *cent

[Concerned Gal]

Okay, I would get someone else to look at your scans, if you can. NO harm - two heads are better than one (except when two of the heads are leakers :D - joking, gotta laugh or you'll cry).

It's hard when you are currently coming off pain meds becuase you are right the rebound headache can often confuse the real symptoms.

I probably wouldn't go to the ER unless you are in agony. I'm not in the states but I know my ER wouldn't order those types of tests from there unless I was screaming in agony. They tend to leave it to people who can give you continuity of care. But in saying that if you are in intolerable pain don't hesitate.

a lot of the leakers here would say the pain is mcuh worse when moving and doing things (ie bending, incidential stretching etc). You mention yours does ease when lying down but would you say the pain is a constant level the rest of the time?

[rrkelley]

He has addressed my suspision- like fibromyalgia= he gave me meds to rule that out. Until this point, i didnt even go this csf route. So just 2 years of- ok you still have pain, here is hyrdocodone, see you in 2 mths. Unless I brought something up, he would say he was sure it is a tension headache.

agh!

[Concerned Gal]

Oh the old tension headache eh.

Let's see 17 doctors, 1 trip to the ER, advised to see massage, chiro, physio all saying tension headache.

And yet one Dr to say, hey something isn't right here. Hey presto!

Don't let them pigeon hole you!

[rrkelley]

[QUOTE= You mention yours does ease when lying down but would you say the pain is a constant level the rest of the time?[/QUOTE]

The pain does not ever go away, I would say my pain scale would be a 6-7 during the day and when I lay down it would subside to about 3-4. Which is fine with me, I can sleep. There are some nights the pain stays the same and I can't sleep.

[rrkelley]

That is why I am here! I am desperate for it to be something so that I can finally address it! Did all the above- no relif. Except temporary edge relif with pain killers. I even quit my job and slept all day- definalty seemed worse by laying down ALL DAY- but that is probably body aches for lack of movement.

[rrkelley]

for about 4 weeks. My ha was still there daily pain scale of a 4-5
4 weeks is long enough to rule out rebound headache right?

[Michelle ANNE]

Rhonda, I'm almost positive that something like jogging can cause or worsen a leak. In fact this whole thing started in earnest for me when I started trying to loose weight in Jan. and started walking on my tread mill. I've been told that I will never be able to jog, walk on a treadmill, ride a roller coaster, etc. again.

I would have another doc. look at your MRI, what can it hurt? As far as the ER goes, in my experience , they are ok for treating dehydration and giving shots for pain but little else.
Good luck,
Michelle