Feb. 24, 2012
Hey. I just wanted to let you know what has been going on in the past couple weeks. I took Mercede in to the pediatrician a couple weeks ago because she was getting dizzy and was having headaches. The doctor did an MRI and she has been diagnosed with Chiari Malformation Type 1. This isn't cancer...thank god. But it means part of her cerebullum is sunkin down into the space that the spinal cord and brain stem goes through in her skull. Her skull isn't big enough to accomodate her brain is another way of explaining it. Anyway....her sypmtoms have gotten progressively worse in the past few weeks. There is a strong possibility that she will have to have surgery. So...I'm asking that you please pray for her and that we find and are directed to the best doctors that can help her. I've told Dad on the phone about the diagnosis but at the time I talked to him we weren't sure if she would need surgery. I'm sure dad has already told mom...I do plan on calling mom tomorrow to let her know. Our next appt. is with a pediatric neurologist on Wednesday. We did meet with a neurosurgeon yesterday, he said that she would probably need surgery but he didn't feel that it was urgent. Anyway- that is what is going down at the Smith househould. Hope all is well your way.
Brenda
Being a nurse & not sure of what this is, i google it and read about it. Of course reading about everything, I know it's not good. Now of course i have another emotional breakdown. My husband is not here to comfort me and my sisters live farther away. I feel so alone and don't know what to do, but PRAY and wait. I ask..what other symptoms is she having. I didn't even know she was sick. I knew she had some occasional headaches after playing on her traveling volleyball team. I just seen her on New Years Day...healthy teenage girl, having fun with her family.
Feb. 25, 2012....my sister writes,
She is having dizziness, headaches, neck pain, shoulder pain, numbness in her hands and feet (this only happened a few times), she had blurred vision just for a few seconds the other day. She has been realy tired at the past few weeks. I'm trying to keep it together but it's gets really hard. I'm praying that we find the right doctors for her and that everything goes well. I've read that the surgeries are usually very successful. We should know more Wednesday when we meet with the pediatric neurologist. I'm afraid that her spinal fluid isn't flowing well and that is what is causing her numbness and neck/back pain. Those are the symptoms that make surgery necessary. The neurosurgeon that we met with Friday wasn't impressive to me at all....so I know we will be doing a lot of research and asking around for a very good surgeon. There are just so many questions yet that I have about surgery. The neurosurgeon didn't feel that surgery was urgent but he did feel that it was necessary. I just hope we can find a surgeon that has ALOT of experience and has a high sucess rate with his patients.
OMG..what has happened to my little girl. How can this happen. I continue to pray and start a prayer chain on several websites, call my pastor at church, and now we wait. My husband calls finally and i cry on the phone and just can't contain myself. I miss him even more when I need a shoulder to cry on. Waiting for her appt. from the pediatric neurologist.
Feb. 29, 2012
We met with the neurologist this morning. I was very please with him. He ordered some more test. He is going to to an MRI on her spine, MRI to see if her spinal fluid is flowing correctly, and an MRA which shows her blood flow in her brain. He's not in ANY hurry to do surgery on her. He said if she feels good, she can play volleyball and that there isn't any risk involved with her playing volleyball.
She did have a really bad migraine this afternnon. Also she took her first dose of Tomamax? not sure if I spellled that correctly...but it's a med to prevent migranes and she experienced some side effects so we may need to adjust her dosage if the side effects don't subside after a week. So- amazingly....after she took her meds and slept for a few hours, she woke up feeling good. Which made me very happy.
So at least we now have a plan and I feel very relieved and comfortable after the visit with the neurologist today. The doctor said there are alot of people that have Chiari but it's incidental to her migranes and other symptoms. Doug said today at the appt. that his whole family has headaches/migranes. So...we will just have to wait and see what the MRI"s show.
The doctor said that stress can make her symptoms worse. The doctor and nurses could obviously see that Mercede was under a lot of stress. They actually talked to Mercede just by herself and Rodney and I separetely, and Doug (Mercede's dad) separetely. They asked Mercede if she was under any stress. They also asked Rodney and I the same question.
I also heard today that a lot of people are having migraines in the past week...this person was wondering if it was the weather and pressure changs in the atmophere. I thought that was interesting too.
I'm praying that her MRI's doesn't show any syrinx or any other problems. Hoping that medications and stress management will be the answer or maybe her body will heal on it's own....that would be a miracle.
She did have a really bad migraine this afternnon. Also she took her first dose of Tomamax? not sure if I spellled that correctly...but it's a med to prevent migranes and she experienced some side effects so we may need to adjust her dosage if the side effects don't subside after a week. So- amazingly....after she took her meds and slept for a few hours, she woke up feeling good. Which made me very happy.
So at least we now have a plan and I feel very relieved and comfortable after the visit with the neurologist today. The doctor said there are alot of people that have Chiari but it's incidental to her migranes and other symptoms. Doug said today at the appt. that his whole family has headaches/migranes. So...we will just have to wait and see what the MRI"s show.
The doctor said that stress can make her symptoms worse. The doctor and nurses could obviously see that Mercede was under a lot of stress. They actually talked to Mercede just by herself and Rodney and I separetely, and Doug (Mercede's dad) separetely. They asked Mercede if she was under any stress. They also asked Rodney and I the same question.
I also heard today that a lot of people are having migraines in the past week...this person was wondering if it was the weather and pressure changs in the atmophere. I thought that was interesting too.
I'm praying that her MRI's doesn't show any syrinx or any other problems. Hoping that medications and stress management will be the answer or maybe her body will heal on it's own....that would be a miracle.
YES...Miracles do happen!! So, we now continue to pray and also pray for a cure and hope. Am waiting now for tests back from her MRI and MRA. I wish my husband was here through all this. Now to get the word out about this condition. I'm on a mission again, and won't stop until God is ready for me.
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