Headaches Pain Photophobia

My daughter is 33 years old and was born with spina bifida cystica of myelomeningocele.  She was shunted 7 days after being born after her lesion was closed.  Her lesion was an L-2-3-4 area.  She has sensory feelings to the top of her feet.  She has of the last four years been chronically and critically ill due to a variety of factors.  First, she had a gall bladder removed (radical) in 2004 and had her old shunt tube (had fallen in the peritoneal area) left after the gall bladder removal.  Three months after the surgery, I rushed her to UAB (Birmingham, AL) in extreme pain.  She had a bacterial slime in the area of the old shunt tube and had perforated her intestines.  Needless to say, she was septic and critically ill and had an ileostomy performed and had her shunt externalized for 6 months.  Then, she had her shunt placed in the pleural space of her right lung.  After 9 months, I rushed her to UAB with SOB ( she was in a nursing home and had been having to have oxygen occasionally).  When we got here, her right pleural space had 5 liters of fluid.  The shunt was externalized.  It took a long time before she was stable enough to have the shunt placed in the peritoneal cavity and it was laproscopically tacked to the top of her chest wall.  In October, 2008, she had her ileostomy reversed.  I discussed the placement and my concern about the GI specialist being cognizant of the location of her shunt tube that was in her peritoneal cavity.  I was told that neurology would be consulted and that it would not be a problem.  Prior to the surgery, I delayed the procedure until I could get confirmation that the neurologist would be available should problems ensue.  I was told that the shunt tubing was not near the ileostomy area and no problem and was kinda dressed down like an idiot.  After 2 hours in the surgery,  the GI surgeon called me on the telephone and said that he had run into the active shunt.  He said he would wait for the neurosurgeon to come examine everything.  Needless to say, after some time, that didn't happen.  She has healed from the ileostomy and we are very grateful to have that done.  (She only lost about 1 foot of intestines in 2004).  Now we are back in the hospital with terrible headaches, photophobia, pain, dizziness, etc.  I have been told that her shunt is functioning fine.  (She has had it changed before when it was supposedly functioning fine because there was no explanation for her debilitating state.)  She went from the age of 6 until 29 without having a shunt change.  In fact, the shunt was closed off when she was 6 and I was told that she was draining too much spinal fluid.  However, the tube was a direct line to the head when she became septic in 2004 and had to be quickly externalized.  Now, I suppose that she is shunt dependent.  However, even as a child, my daughter only had headaches, never vomited, experienced nausea, never had photophobia, etc when she had shunt changes.  Then, the miracle of shunt revisions at the age of 6 had closed off the shunt drainage entirely.  Since 2004, she has had 7 shunt revisions.  Sometimes, there was no evidence of real shunt malfunctions but obviously there were problems.  Now we sit in the hospital, with a new neurosurgeon stating that her shunt is fine, he checked the drainage ( surgically) and the absorption, etc. but the patient is no better.  She has a dark room, has pain 10/10, etc. has extreme photophobia.  They were going to discharge me and I stated that they had to help my daughter.  With all previous shunt revisions, she was immediately better with pain only in the area of the incision.  We have been in the hospital since Dec. 20th.  We are being treated for migraines.  It is not helping.  Is it possible that the ileostomy reversal could have triggered something that caused migraines?  Why is it that other neurosurgeons changed the shunt and it improved her immediately?  I will say that changing the shunt right now is more risky since she has just healed from the ileostomy and the shunt tubing coils way down into the peritoneal area from being laproscopically tacked to the chest wall.  However, she is very debillitated.  Do you have any suggestions?  I don't want more surgery.  I realize that it is riskier with the fact that she had an ileostomy recently reversed; but, I find it hard to believe that suddenly it is a migraine.  She keeps her head under the cover and will not expose her eyes to light at all and is consistently complaining of pain.  She did and has always had a certain amount of complaints with vertigo on and off her whole life.  When this most recent incident occurred, she was sitting at the table in her wheel chair and asked to be put to bed being extremely dizzy and "out of sorts".  Then, the pain came.  I took her to the local ER four days before I decided it must be the shunt.  Then we headed to UAB in Birmingham.  I am not sure that she has an Arnold Chiari malformation; but, is it possible that this is causing problems with photophobia and pain due to slipping into the foramen magnum maybe because of all that has occurred.  I read an article that spina bifida women can experience this in their 25-48 years of age.  I am desperate and afraid that we are going to be dismissed home because it is not a shunt problem.  Couldn't it still be a problem with the way the CSF flows and be corrected with just a shunt pump change in  the head and not require the tube replacement into the peritoneal cavity?

I am not trying to be unreasonable.  I graduate from nursing school in 4 months with a BSRN.  This is my third career and I have been taking care of my daughter 24/7 with minimal help these last 4 months.  I have an undergraduate in chemistry and math and a master's in biology.  I am 57 years old and love my daughter with all of my heart.  Obviously, I am a single mother like many parents of disabled children.  The marriage lasted 18 years.  I have no one to turn to and just want my daughter better.

Sincerely,

Sarah Rives
256 282 5922

[Carol in PA]

Sarah,
Your daughter's symptoms of severe headaches, photophobia, and nausea do sound like migraine.
One of the things that can affect this is hypercoagulation.
Systemic enzyme therapy can reduce hypercoagulation and biofilm.
I treated myself with Wobenzym, a combination of systemic enzymes, and within two weeks my constant headaches were reduced.

Regarding the photophobia, perhaps she can use a light blocking sleep mask, or wear dark sunglasses.
Omega 3's (fish oil) will reduce inflammation and improve cell wall integrity, which will help reduce migraine.  You need a pharmaceutical quality fish oil.

Supplemental magnesium will help reduce headache and migraine.
I can give you recommendations, if you are interested.

Wishing you the best,
Carol