32 year old mother of 5 with Unexplained brain bleeds

[danp19]

My wife was put in the hospital 2 weeks ago with sever abdominal pain.  The doctors believed this to be a problem with her liver and eventually diagnosed her with a sphincter of oddi.  They performed a sphincterotomy on her.  This seemed to resolve the issue.  However, one day into her hospital stay (before the procedure) she developed this incredible head/neck ache.  The doctors all thought it was a migraine (she gets a mild migraine about twice a year, nothing like this), however none of her pain meds (dilaudid, ultram, morphine, vicodin) touched the pain in her head at all.  The pain in her abdomen resolved a couple days after the surgery, but she was discharged with the pain in her head telling us to treat it as a migraine.

A day later with no resolution, we went back to ER.  They were thinking it was viral menengitis, but after a CT scan, two bleeds were discovered, one on each side of her head, about an inch behind the forehead (I believe in the frontal lobe).  She has had a ton of tests, and here is what they have excluded:

Aneurysm, stroke, tumor, cancer, vasculitis, AVM.  They did a ton of blood tests, all of which have been normal.  She has had an ultrasound of her carotids and heart, all normal.  I'm sure there are several other things, but I'm not sure what all the blood tests were for.  Needless to say, she has had CT scans, MRI's, MRV's, an angiogram, ultrasounds, blood tests, etc. with no diagnosis.  Everything comes back normal except for the obvious, the blood on her brain.

They have basically said they have run out of tests to do on her, and they are trying to get her pain under control so she can be discharged.  We are obviously very nervous about bringing her home without any diagnosis.  She has had about 6 or 7 doctors looking at her case, and I do believe they are very good doctors at a very reputable hospital (Spectrum Health of West Michigan).  However, I'm uncomfortable with the lack of a diagnosis.  People don't bleed in the brain for no reason.

My question...has anybody ever seen this?  Are there things I could ask the doctors to see if they have overlooked something?  Clearly this is not a normal thing, are there things diseases or sicknesses that could result in a brain bleed but not show up on any of these other tests? (no history of drug use, no car accident or fall, no changes in behavior prior to entering the hospital the first time).

Any info or suggestions you can give would be a huge help...I need to get her recovered and back home...her kids need her!!!  Thank you!!!!!!

[JrTops21]

Hi, My sister has experienced 8 aneurysms within 3 years 4 of them have ruptured. We are very similar to you in that she had had so many tests run and all come back negative. She still does not have a diagnosis. Were you able to find out what was happening to your wife? In between the aneurysms she has strokes. And she has a white rash on her arms and legs...  Any update would be greatly appreciated.

[MDoops]

Brain bleeds can be caused  by sudden blood loss or severe dehydration where the brain shrinks and it pulls on the blood vessels. The chance of this happening would be higher if she had either brain atrophy or was on blood thinning medications. Keep in mind that many supplements (omega 3, vitamin e, ginkgo biloba etc) can thin blood.

[JGMARLOW]

MY BEST FRIEND HAD A BRAIN BLEED A YEAR AGO AND THE DOCTORS DID NOT KNOW WHY.  AFTER DOING MY OWN RESEARCH ON THE WEB, I BELIEVE HER'S WAS FROM HER HAVING LYMES DISEASE.  BUT OF COURSE, NONE OF HER DOCTORS HAVE SAID YES THAT WAS THE FOR SURE  REASON. BUT IF YOU READ UP ON LYMES DISEASE , THE HISTORY OF WHERE IT CAME FROM AND THE SYMPTOMS YOU WILL SEE, AS WE DID, THAT IS THE UNDERLYING CAUSE OF OTHER DISEASES.  FOR INSTANCE, FIBRO MYALGA, MS, LUPUS, AND SO ON, BUT THESE ARE CO-INFECTIONS THAT ARE CAUSED BY THE LYMES PARASITES. IT IS AN AUTOIMMUNE DISORDER, AND THE LONGER IT GOES UNTREATED THE MORE THE PARASITES SPREAD IN YOUR BODY. DOCTORS WILL TREAT SOME OF THESE CO-INFECTIONS WITH STEROIDS WHICH IS LIKE FEEDING THE LYMES PARASITE. AND THE MAIN PLACE THE GO TO GROW IS THE BRAIN. WHEN MY FRIEND HAD HER BRAIN BLEED, SHE WENT INTO A COMA AT HOME AFTER SHE TOLD HER HUSBAND SHE HAD A REALLY BAD HEADACHE AND SHE TOLD HIM TO CALL 911, THEN SHE WAS OUT AND BREATHING VERY HEAVY. SHE WAS TAKEN TO THE HOSPITAL AND THEY TOLD US SHE HAD A BRAIN BLEED AND IT DID NOT LOOK LIKE SHE WOULD MAKE IT.  THEY SAID HER PUPILS WERE FIXED AND DILATED WHICH MEANS BRAIN DEATH. BUT WE TOLD THE DR. TO PLEASE DO WHAT HE COULD TO SAVE HER.  HE DID BRAIN SURGERY TO STOP THE BLEED, BUT HE DID NOT KNOW IF SHE STILL WOULD LIVE.  BUT WITH LOTS OF PRAYERS, GOD LET HER LIVE AND WALKS AND TALKS, SHE IS STILL RECOVERING AND IS A BIG MIRACLE OF GOD.  SO  JUST WANTED TO GIVE YOU SOMETHING TO RESEARCH, THIS COULD BE YOUR CAUSE YOU ARE LOOKING FOR.  ALSO, MOST DOCTORS DO NOT SEE LYMES AS DEADLY AS IT IS. I HOPE THIS WILL HELP YOU, GOD BLESS

[dcgirl202]

I had an unexplained brain hemorrhage two years ago at the age of 26. I don't have children. it was in on the left side in the back right in the visual cortex. I got a severe headache in the back of my head but the reason I went to the hospital was because my vision went out on the right side. I was in and out of the hospital for 2 months because of swelling. They ran every test possible, questioned me a thousand times about possible drug use (I'm in the military and the answer was a repeated no.) Everything came back negative and in the clear except for the MRI's showing the hemmorrhage.

In the past two years I have had regular MRIs, all showing the mass of congealed blood gradually decreasing in size until now where it is microscopic/gone. In the beginning they were going to do surgery but luckily we all decided to wait to see what happened with it before opening up my head because now it isn't or doesn't seem to be an issue.

I am still afraid everytime my head hurts that it is happening again. Having something undiagnosed in your brain is a little freaky and I have googled this many times in the hopes of finding someone who has gone through it also and/or could give me some answers.

[rendean]

Hi,
I'm usually on the MS Forum but saw your questions and was intrigued. I found a site that lists 47 causes of brain bleeds. If you approach the docs with the list , do so carefully to avoid bruising egos. But, you are right, they need an answer before they release her. The link:http://www.wrongdiagnosis.com/sym/bleeding_in_the_brain.htm

List of 47 causes of Bleeding in the brain

This section shows a full list of all the diseases and conditions listed as a possible cause of Bleeding in the brain in our database from various sources.

    * Accelerated hypertension - bleeding in the brain
    * Acute leukemia
    * Acute respiratory distress syndrome, Infant - bleeding in the brain
    * Amyloidosis VI - bleeding in the brain
    * Aneurysm, intracranial berry - bleeding in the brain
    * Aneurysm, intracranial berry, 1 - bleeding in the brain
    * Aneurysm, intracranial berry, 10 - bleeding in the brain
    * Aneurysm, intracranial berry, 2 - bleeding in the brain
    * Aneurysm, intracranial berry, 3 - bleeding in the brain
    * Aneurysm, intracranial berry, 4 - bleeding in the brain
    * Aneurysm, intracranial berry, 5 - bleeding in the brain
    * Aneurysm, intracranial berry, 6 - bleeding in the brain
    * Aneurysm, intracranial berry, 7 - bleeding in the brain
    * Aneurysm, intracranial berry, 8 - bleeding in the brain
    * Aneurysm, intracranial berry, 9 - bleeding in the brain
    * Antithrombotic therapy
    * Blood clotting disorders
    * Brown snake poisoning - bleeding in the brain
    * Catastrophic Antiphospholipid Syndrome - bleeding in the brain
    * Cerebral cavernous malformations - bleeding in the brain
    * Cerebral hemorrhage - bleeding in the brain
    * Cerebral ventricle neoplasm - bleeding in the brain
    * Chemical poisoning -- Anticoagulant rodenticide - bleeding in the brain
    * Cocaine -- Teratogenic Agent - bleeding in the brain
    * Congenital structural heart defects
    * Extradural hematoma
    * Factor XIII deficiency - bleeding in the brain
    * Factor XIII deficiency, congenital - bleeding in the brain
    * Factor XIII, A1 subunit Deficiency - bleeding in the brain
    * Factor XIII, B subunit Deficiency - bleeding in the brain
    * Genetic disorders
    * Hageman factor deficiency - bleeding in the brain
    * Head injury
    * Head trauma
    * Hemophilia
    * Herbal Agent adverse reaction -- Ginkgo biloba - bleeding in the brain
    * Immune thrombocytopenic purpura - Bleeding in the brain
    * Intracerebral hemorrhage
    * Intracranial arteriovenous malformation - bleeding in the brain
    * Intracranial infections
    * Malignant hypertension - bleeding in the brain
    * Sickle cell disease
    * Stroke
    * Subdural hematoma
    * Transthyretin amyloidosis - bleeding in the brain
    * Trauma
    * Von Willebrand disease

Wishing you luck in finding the cause and getting your wife back to her old life.

Ren