Help Melissa be Melissa again

Hi my name is Pam. I am Melissa's mother. Trying to raise money for her upcoming surgery.

Melissa has a rare condition Superior Canal Dehiscence Syndrome. (SCDS) is caused by an abnormal opening between the uppermost semicircular canal in the upper part of the inner ear and the brain. In Melissa's case the bone over the ear canals is missing on both sides. This causes dehiscence and holes in the ear canals from the CSF fluid around the brain being able to get to them since the bones are gone that would protect from this. Not sure if I said that right. Melissa had surgery 2 years ago to fix one side. Dr. Yang and Dr Gopen at UCLA are wonderful and will be doing her surgery on the other side in a few weeks. It is brain surgery where they make a hole in the skull to get to area needing repaired. The condition causes problems with hearing loss,intracranial pressure and vestibular migraines. She hears eye movement ,heart beat,chewing, swallowing footsteps ,sounds of neck cracking with any movement. Her voice is amplified and distorted inside of her head. So she sometimes whispers or will text when it is bad so she doesn't hear her voice in her head so loud and painful. Vestibular Migraines that can last for days, Memory loss. She will be talking to you and forget what she was talking about. She will start a task and forget what she was doing mid way thru. She gets such bad vertigo and loss of balance. Sometimes when I look at her In can see her eyes bouncing up and down so fast. It is scary

I can't handle the derealization and panic anymore. No amount of psych meds or psych facilities work. My home doesn't feel familiar anymore and my brain isn't connecting with my family or the people around me. When this condition started a couple years ago my personality and mental state changed suddenly and it's the most terrifying thing I've ever experienced. It's like I'm in a slightly different reality than everyone else. Any happy memories I have make me panic and cry to think about, It's almost like my brain thinks all my loved ones have died and can't stop grieving or something. I'm so scared all the time and my grasp on reality is slipping more every day. Can anyone else relate? I just want one moment where I feel at ease or one morning I don't wake up in a panic.

Melissa has been getting progressively worse.

When the pressure in her head got so bad after several ER visits and a lot of scans , lumbar puncture and test. She was referred to a Neurologist who told her they could not find anything wrong and it was all in her head and she had mental illness, depression. Melissa was in his office crying telling him she knows something was very wrong and she was scared. She told him she felt like it was affecting her ears also and asked if she should go see an ENT doctor

He told her no that nothing was wrong with her and it would be a waste of time. She did go to ENT doctor who referred her to ENT surgeon who ran VEMPS test and specialized scans. He diagnosed her with SCDS.

Melissa has been on so many different psych meds that have not helped. Ketamine infusions, counseling. She has had several stays at psych facility. Again with no relief. The SCDS is causing all her symptoms and can only be relieved by surgery. At the time we did not know that is what it was. I remember driving around with her in my car crying and begging me to please help her. Telling me she couldn't go home and needed to go somewhere for them to figure out what was wrong and help her.

She has told me that she is so afraid she will never get her old brain back even with surgery.

This condition is devastating and scary.

Some of the family don't believe her and say that she just needs to make her self get out of bed when she can't.

Melissa has not been able to work for a few years . She has a wonderful husband that is so supportive thru all of this but it has been a struggle for them with just 1 income. We help as much as we can but she can use more help with lodging for the 12 days in California. We are traveling from AZ. She will have large copays and will have to pay for a portion of her surgery.

Please help Melissa try and get her old brain back and be Melissa again and to improve her quality of life.

Thank you for listening and God Bless