Surgical Follow Up Summary

Dear friends and family,

We met with Marisa's surgeon on Tuesday for the first time since she was discharged.  Below is the update on the items that many of you have been asking about.  We are grateful for your care and prayer!

Tuesday at Johns Hopkins.

Surgical report:
In addition to Marisa's thyroid, 58 lymph nodes were removed with 15 of them being cancerous.  The surgeon again confirmed that he was able to remove all cancer known to him.  The incision is healing well.

Vocal folds (cords):
The doctor examined Marisa’s vocal folds with a camera, and he showed us their paralyzed position resting partially open (and partially closed).  [The vocal folds are designed to meet in the middle of the larynx and be able to fully open and close.]  He thinks they look slightly better than just after surgery.  This partially closed position explains Marisa's airway restriction.  At this point the surgeon still believes that they will begin to function again as the nerves continue to “wake up,” but there is certainly still mystery behind why this problem has happened.  Marisa's case is now a part of an international medical study in which this surgeon is involved.  The study is attempting to answer the mysterious disconnect between nerve activity and vocal fold function in extremely rare cases like Marisa's. 

Speech therapy is on hold at this point. We will see the surgeon again in two weeks.  We will likely meet with our first choice of speech therapists at that point as we have been hoping.  There is nothing else anyone can do at this point to revive Marisa's voice other than wait and see.  There is a procedure that some medical advisors at first thought may be helpful to Marisa involving injections of collagen into her vocal folds to give her temporary use of them (and a voice) while her nerves are reviving.  However, we found out yesterday that Marisa is not a good candidate for this procedure.  Plumping up her vocal folds would be too dangerous as it could further close her airway without Marisa having the ability to control (open) her vocal folds.

Chronic Nausea:
We found out that Marisa's nausea is due to higher than normal calcium levels.  She is now on a lower dose of calcium which is helping to relief some of her nausea.  The trick is that her body is beginning to produce more calcium on its own, but also needs supplementation. Dosing will be dynamic as Marisa’s parathyroid glands continue to wake up after surgery.

Numbness And Sense of Taste:
The surgeon is hopeful that she will regain feeling in her left ear and the left side of her face and neck as she reacquires nerve function.  If the numbness does not improve within three months after surgery it will likely be permanent.  Marisa's sense of taste is also beginning to return to normal.  Since the surgery, foods and drinks have tasted quite different to her than before.  

Next Treatment:
Later this summer Marisa will receive radioactive iodine treatment.  After receiving the dose she will be isolated for 48 hours as she herself will be radioactive.  The iodine is meant to kill any stray cancer cells that may be lingering around her body, and also illuminate the cancer cells when she is scanned.  If there are any significant cancer masses elsewhere in her body, then the next phase of treatment will then be determined.  

We are grateful for you!


Love,
Matt & Marisa