Miss Diagnosis: surgery

Friday, May 1, 2009

A Surgery Date, Finally!

I said I would be happy if they would just call and tell me the date. I lied. I'm still not happy. ELEVEN weeks from now, July 16th. There is no way to get in sooner. Dr. Duh wants it scheduled at the Children's Hospital at UCSF; he usually does surgeries at the UCSF Cancer Center across town. He did tell us he would want to do it there because he would be able to put her in the pediatric ICU, where he feels she will get better care. I just wasn't getting the fact that he only has certain, limited, days available to him at that facility.

School starts mid August and I was really hoping she would be able to start the new school year partially recovered. I have heard so many different things when it comes to recovery that I have no idea what to expect. The surgical recovery shouldn't be bad. It's the recovery from Cushing's and trying to get the meds right that can take months, or years. It seems that those who have had Cushing's the longest and are in the "worst" condition are the ones who take the longest to recover. That doesn't give me much hope for a speedy recovery. I think Alex has probably had it since birth and her condition couldn't get much worse.

Sunday, March 1, 2009

Approved for surgery!

We got the call from Dr. Friedman this evening. He has no doubt that Alex still has Cushing's and has given her his approval for surgery. He gave us the choice between a repeat of the pituitary surgery or bilateral adrenalectomy- henceforth known as BLA. After much thought and internal debate we are opting for the BLA. It will mean a life time of steroid replacement but the chance that it will be a cure for Cushing's is 99% vs, at best, 50% with another pituitary surgery. Alex's pituitary surgery, while unsuccessful, at least left her pituitary function intact. We feel that alone is enough reason to avoid going in again; considering the neurosurgeon would plan on removing half of the pituitary itself instead of just tumor the second time around.

We are being referred to Dr. Duh at UCSF, he is one of the few surgeons in the country skilled at bilateral adrenalectomy using a laprascopic approach. Hopefully he will be "on board" with the idea and diagnosis. For now we wait for the referral process.

Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.