Almost 6 years ago when I sat in a dark hospital room for months, surfing the web, trying to find answers that the team of Neurologists and infectious disease experts couldn't give me about why my poor husband was suffering from such a chronic intense headache; I remembered Tanner's 5th grade teacher, Ms. Lisa Ledesma.
I was Ms. Ledesmas's room mom the year before. As such I knew her a little better than most. I remember her telling the kiddos one day that she ALWAYS had a headache and that she was going into the hospital for a brain surgery and would have to take 6 weeks off to recuperate.
I called her that summer while Brent lay in the hospital bed and asked her about her condition. It sounded exactly like Brent's. I asked her what it was called: Pseudotumour Cerebri. (Now they refer to it as Idiopathic Intracranial Hypertension).
Later that day, I asked the Neurologist, "Could Brent have "Pseudotumour Cerebri"?
I'll never forget his response.
He laughed at me.
"Mrs. Argyle, he is the wrong demographic for that. Pseudomtumour Cerebri only occurs in women who are in their child bearing years who are overweight."
Guess what? Six months later, we found the amazing Dr. Herzog and Brent was diagnosed with Pseudotumour Cerebri.
(Tender Mercy? I think absolutely! I can't tell you how rare this disorder is. The odds that we would KNOW someone has it are remarkeable.)
90% of the time it DOES occur in women who are in their child bearing years who have problems with their weight. Many of those cases are CURED when the women have weight loss surgery. Their headache goes away.
But 10% are men and children. Brent is one of those not-so-lucky 10%.
(Dr. Herzog later called that Neurologist mentioned above and gave him a tongue lashing for not being up to date on PTC and encouraged him to do some continuing education. He said it was shameful that this man had suffered for six months with immense pain and possible permanent damage to his eyesight because he was misdiagnosed.)
Fast forward to 3 months ago. I had lost track of Ms. Ledesma. We moved out of the school district and she moved to teach at another school and got married so her name changed. I had often wondered about her and where she was and how she was doing with her headache but had no idea how to get in touch with her.
3 months ago I noticed a post by Lisa on the wall of a mutual friend on facebook. (Tender mercy #2) She was lamenting on a facebook post the fact that she was going in for yet another shunt surgery in her brain because she still had her headache. I immediately "friended" her, got her contact info, called her and told her that she should switch DRs. I told her that she needed to get in with Brent's Drs because they knew MUCH more about PTC and that our doctors don't even do the brain shunts anymore because they were ineffective and REALLY dangerous.
Meanwhile, Brent heard from Dr. Konen about a study in Phoenix AZ. A doctor there had put together a study of PTC patients (men only) and found that they all had a common bone fragment that was augmenting the flow of blood and fluid in the brain. Once the Dr. had gone in to the head and shaved the bone down (I know, sounds delightful, right?) -their headaches were gone. This Phonenix Dr. had only performed the surgery on five men but all five men were headache free post- surgery.
Brent tried to get into the study. He was not accepted. (Apparantly HIS bone fragment is not AS pronounced as thiers were in Phoenix and so he was not a good candidate.)
Then he started talking to a highly recommended surgeon at UTSW about doing it. After a few months, that Dr. came to the same conclusion. He agreed that the bone fragment is there. It is prohibiting flow. But he just didn't think it warranted the surgery. He didn't think the results would be worth it.
All this time, Ms. Ledesma is being scanned by Brent's team and finding out she has the rogue bone fragment in her head too. She is sent to a different surgeon out of Baylor. He expresses the same concern to her. Her bone fragment is there but it is smaller than those in the study. He has never done this surgery on a PTC patient. Her fragment isn't as big as those in the study. Blah Blah Blah Blah Blah....
BUT he consented to do it for her.
Afterall, she has had the same headache for 11 years.
Yep! you heard me right! ELEVEN YEARS.
Can you imagine?
She had the surgery on February 23rd.
When she came out from under the anesthesia she had
I talked to her last Friday.
No headache all week.
No headache all week.
Guess who is meeting with Ms. Ledesma's surgeon this Thursday at 3?
(Tender Mercy #3)
I might be getting ahead of myself but if we can talk Dr. Baktik into putting us on the fasttrack and running all the tests quickly so that he could have the surgery in March, we have double insurance coverage. (Brent's old job is still in effect and his new one has kicked in already.) Possible tender mercy #4. :O)