Jodi had an appointment with a Neuro ENT, Dr. Shelton, today. A Neuro ENT specializes not only in the ear, but the connection between the ear and the brain. Dr. Shelton works with Dr. Couldwell, the neurosurgeon, and has been involved in Jodi's case for a few weeks, though this was her first time meeting him.
There were many details discussed at the appointment but here is the summary:
* An entire team of specialists is now involved in Jodi's case. The radiologist is one of the best in the country. Between all of them, they still have no idea what kind of tumor (if it is a tumor) it is.
* A biopsy was going to be the next option, but they have decided to do the "full" surgery and take out as much of the tumor as they can. They will get close to the brainstem, hopefully without touching it.
* The surgery will be performed using a "middle fosa" approach. They will start the incision in front of Jodi's right ear, then create a large question mark shaped incision that goes back and up so it ends in the right middle side of her head. They will have to shave her head around the incision, but will try to preserve the surrounding hair to help cover the scars.
This method does have risks, as follows:
1. Risk of hearing loss +/- 5%
2. Risk of facial paralysis +/- 10%
3. Risk of death +/- 1-2%
4. Increased dizziness and imbalance (moreso than now) +/- 30%
5. Increased ringing in ears +/- 10%
6. Post-op infections +/- 10%
Spinal fluid leak (Jodi let him know she's already "Been there done that")
Blood Transfusion problems
The good news is because of Jodi's age and overall health condition, she is less likely to experience many of these risks. However, the tumor's proximity to the brainstem increases some risks.
* The surgery will be about 4 hours long. She will be in the Neuro ICU for 24-48 hours, then in the Neuro Unit (at the University of Utah Hospital) for another 3-4 days or so, with a total hospital stay of about 5-6 days or so, if all goes well. They will not release her until she is up and walking on her own.
* She will experience a temporary increase in her dizziness and balance problems (unlike the chance for more permanent issues as listed in the risks above). This will be a major part of her recovery time, in addition to managing the pain and care of the incision area.
* They cannot leave the space in the brain "empty" so they will take fat from her stomach (in a procedure similar to liposuction) and fill it in her brain. Her kids have decided her new name will be "Fat head", which she thinks is great. Many people have volunteered to give up their "fat" to put in Jodi's head. If you would like to volunteer your fat, Jodi says she is creating a list of potential donors. :)
* If all goes as planned, this will take place on WEDNESDAY, May 13, at the U Hospital. (They should get final word within the next 24 hours and will know if it is a "go" for sure.)
* The doctor said he doesn't believe the surgery will take away the symptoms. Analysis of the tumor will hopefully result in answers as to what "it" is and how to continue treatment. It may not be a tumor, but a mass that is indicative of something else all together. It may or may not be cancerous. It may or may not be causing all of the symptoms. They just don't know. Regardless, after surgery, they are going to try out some different migraine medications for Jodi. Some of them have been known to help the headache/dizziness combo, so they may help relieve or lessen her symptoms.
In the meantime, the team at John's Hopkins has some of the medical information and the rest should be arriving by tomorrow. So far, one specialist has been recommended to Jodi, based on his work with this area of the brain,however, they do not have a diagnosis either.
Some good news, the doctor said after her initial few weeks of recovery, the remaining few weeks can take place anywhere, so if she feels up to it, she can still go to Hawaii to see her mom and brother graduate from college! That has her excited and hoping she feels good enough for the trip.
So, that is the big update. There will be another appointment on Monday with the neurosurgeon to finalize plans before the big day. The prayers and fasting have already created miracles, so please keep them coming for the surgery and recovery time.
More thanks: To The Baileys, Jean Francom and Jodi Carlson for the kind emails and to Jodi's Dad for the amazing Mother's Day flowers!! Love to all!