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Avatar universal

passing out for almost 2 years with NO diagnosis

we have been doctoring since last July.my husband had an epidural injection L4 L5 at neurologist office.  Got a wet tap, and gave him a blood patch immediately afterwards, which at that point he went out.  Said he felt like brain was frying, got real hot, and all he remembers after that was them smacking his face to open his eyes, he could talk but could not open his eyes, at that point.  They doused water on his  face, and in mean time office called me and said to come pick up my husband as he could not drive home, said he had a "seizure" and could not drive home.  I asked what kind of seizure he had, and they said they did not know, but could not drive.  When i got there there was a gurney there, and the neuro said, "don't shoot the messenger, he vageled out on me.I had NO idea what vagel meant, but found out afterwards.  They took him to ER, as doc's office is within the hosp.  He vomitted all the way down to ER violently, and they did cat scan, found air in brain, and admitted him for overnight.  GAve him fluids, and discharged him in AM.  He felt ok, little tired but ALOT better the day before.  It was within maybe 48 hours he got the worst headache he has ever had, and his neck was stiff, and could not stand light, noise, it was terrible.  Called neuro back, and they said it was not from epidural, and that to see family doc.  We did that, he said his complaints were muscular skeletal.  I disagreed, and John has NEVER complained of a headache, in the 30 years i have known him.  About two weeks later, out of frustration called neuro back, and said all he does is lay in bed, and is nauseated all the time, and is very weak.  Anyway, after 4 months, and my husband losing about 20 lbs., and NO energy, looked like he was a cancer patient, I went to my family internal med doc, and pleaded with him to see my husband, as i was so echaudted from worry, and him looking so bad.  He saw him thru the ER dept, and admitted him, and asked anesthesiology to do a blood patch, they said no, that it should have healed by now, and just to hrydrate him with saline and caffeine, which they did back in beginning of all this, but did not last,,as i said he felt ok upon discharge.  Now this is July 07, and he did feel better with hydration, and discharged.  Ran all kinds of test, with no abnormalities, cat scan, MRA, MRI brain, chest, liver test.  SO, we went home, and that night he passed out, they did give him flomax as doc thought his prostate was enlarged, infected.  I thought it was due to flomax, they did not, but told him to discontinue, just  take the avodart.  Still suffered from the sever fatigue, and still no weight gain.  We went to a doc that specialized in vertigo, and dizziness.  They said that the air had been replaced, but the inflammation is what was causing his headaches, and dizziness, fainting.  Air causing the inflamation in the brain, and needs time to resolve, and gave us meds to take.  Saw intern and told him what they said, and he said do not take that, and that if it is truly inflamation, that a course of steriods would prove or disprove that.  After second day of steroids, what a diff........he felt like a new man.  In meantime, we had an appt with Neurologist that dealt with specifically headahes for Sept.  Well, by time appt came he waqs not having the headaches and seemed like the steriod regimen did the trick.  And he gained some weight back.  Then sometime late Oct. he started feeling drained again, headaches back, not as severe, but there, and dibilitating....and started losing weight again.  Went back to family doc, and now had to wait till Feb to get back into neuro.  In meantime he passed out, hospitalized again day after Christmas, did cototid study, everything ok, i asked them to run lyme diease test, only cause he does.did hunt alot and we have done alot of other tests with negative results, and it is not invasive.....they did it reluctantly.....and it did come back OK.  We are now almost a year into all this, and he is still not right, and we go to neuro and he said that it is either a hemicranial headache, or still spinal headache , that you CAN still have a leak.  And the hemicranial headache should not make him pass out.  When he passes out, it is ALWAYS preceeded by his face feeling VERY hot!  And then he goes out.  It happens sitting standing....not positional.  Anyway scheduled a blood patch, and we had more drama with that, they could not insert needle in, and this was thru interventional radiology, and under flouroscope, but they wanted to do a myelogram to find out WHY they could not insert needle.  That came back normal, not a mass as they thought.  Well, he got another leak, or made the one worse????  We ended up in our local ER, twice and called interventional radiology for blood patch....as he did not get one the day we were there, just the myelogram.  The patch helped, and we thought we were done with all this.  NOPE!  Starting gettting eak again, very fatigued, losing weight again, looked like he aged 10 years in two, and we were back at square one.  Oh forgot after hospitialized in Dec, for passing out, he saw a Cardiologist for Tilt table test and assessment of sympthoms.  Cardio said it has nothing to do with his field, him passing out, and did pass the tilt table test.  Now it is Oct of '08, and we schedule another blood patch, and john cancelled, i know he is just too scared to get another KILLLER headache or something else go wrong.  Well, from Oct till now he has passed out on 4 occasions, and I just learned that, when he passed out in shower the other morning, and got all bruised up, and luckily did not break anything.  So, we go back to internal med, PCP, and he wants to send us back to Cardio..........I think that is a waste of time.....as he was real clear, that it is nothing to do with the heart, or his field.  I said to talk with him, FIRST, and if he feels there is something he can do, we would go then.  In the meantime, i am very upset and of course concerned..........it has been almost 2 years and he is no better off, than when we started, other than maybe the severity of headache!  So, i get on this site, and was told of adrenal insufficiency.......did they check that!  I said no, and who would we see, they said endocrinologist.  WHY did not anyone check for this in all the times he was in hospital, as almost every thing he complained of is related to that, and not that is HAS to be that, but other than the skin pigmentation, and the salt craving he has.  Could the trauma of the epidural, seizure thing cause the adrenal to stop working.  My husband was actually crying when i got there after they told me to come as he seized..........thought he was going to die.  Or from being in pain for so long after the epiural, i mean he had a SEVERE headache that he did not get out of bed from Msrvh of 07 till sometime in Aug of 07, when they started the prednisone therapy.  And came back, not as severe, but still bad.........a couple months later!  Please advise...........did what he went thru, and of course it was stressful..........losing your health, income, independance..........and no answers WHY!  Thank you!
7 Responses
620923 tn?1452919248
Oh my ur poor hubby has been thru the mill.I do not understand y it takes so long to get a dx.It does appear that it is a CSF leak causing him issues.

It appears u have done what is needed and the medical pros have left u done.

I am sure someone can suggest a medical center for  u to contact.

Have u tried the Clevland Clinic?

Wishing u a speedy resolution.
"selma"
Avatar universal
We saw Neuro at Cleve clinic, and he wanted to do another blood patch, this will be third, and my husband is just too afraid to have one done again.  Such a bad experience, and while it may cure what is wrong, it can also cause another leak.  But i truly feel there is something secondary FROM the leak, that is making him this weak and faint, or pass out.  I just keep praying, that is all i can do!  Maybe the adrenal tests will come back and put the missing piece to this puzzle together.  All i know is my nerves cannot take much more of this, and my husband is very depressed, and so tired of being sick!  Thanks for caring!
Michele
620923 tn?1452919248
May I ask...did he have an injury?...y did he have the first LP? I am wondering what started all of this?

"selma"
Avatar universal
He has had many epidural injections over the last 8 years, they were usually done under flouroscope, and he was always in a semi sedated state to have them done.  The ones that were done by Neursurgeon, anyway.  He had some done by orthopaedic, but that is placed differently, and cannot cause a leak.  But the reason he has had them is due to herniated disc, and stenosis, lumbar L4/L5.  But the one that he had the problem with, was done in Neurosurgeons office, in a standing position.  That is when he had the leak, and after they gave him the blood patch, is when he either seized or passed out.  I was not at the office when it happened..........which to God i was, maybe that has someting to do with the answer to all this.  We went to PCP physician today, and he is suppose to get back with us by Thursday, after consulting with his other docs//////  WE need closure to this!  A diagnosis would be great!!!          
620923 tn?1452919248
Geez....I have stinosis and bulging disks too.....noone has even mentioned treatments.....but I will always have this in the back of my mind if they do.

When was ur DH last MRI?...I wonder if the herniated disk is behind it all?

I am curious to see what ur PCP finds out.

Keep me posted!
"selma"
Avatar universal
The injections that he used to get, from a neurosurgeons office in CLeveland, Oh, that were actually done by an anesthesialogist, worked great.........gave him decent relief.  They sometimes do them in a series of three, about a month apart.  But if you feel significant relief after the first, one or second one.....you do not have to get the third, and instead SAVE those ones........as you can only have a certain amount in a years time.  But MAKE sure they, either the nuerosurgeon or anesthesiologist do it UNDER FLOUROSCOPE>an xray type machine.........and if you can be given a sedative, that is also good, but not absolutely necessary..........but it is usually very affective on stenosis.  And just ASK, as we did not, because it was always done one way, and figured that is the way they all are done.  The one he had problem with, was done right in Doc's office, not a sterile enviorment, and not equipped for ER, and wasnot done under flouroscope.  Hope that info helps!  We did get some news today from ENdocrinologist, and he is putting my husband on meds, that shouodl prevent him from future passing out epidsodes.   Something about his body is not doing something in the processing of salt and potassium, and causing his BP to go to low.  And scheduled another type of blood test to check how the adrenal glands are functioning.  So, hopefully we are on to the end of this craziness!  Keep you informed~
binder58
620923 tn?1452919248
Thanks for the info...and good luck to ur DH on the new meds!!

: )
"selma"
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