Chiari Online Support Group

Have Faith and Strength!


#1

Now to say that this has been a trying year is an understatement, but I'm realizing this is all a matter of perspective. My 11 yr old, Tasia, was diagnosed with CM, Type 1 just months ago after my noticing her nystagmus which led from the optometrist to the neurologist, 2 MRI's and now the second neurosurgeon consultation in 3 days. She spent her 11th bday on a plane to her first consultation. My story is not unique, but this leaves me a window to share. Here on the Big Island of Hawaii, contending with medical issues leads to island hopping. As a single mother with little support, it's up to ME to man the reigns and be diligent not for just her, but my own medical issues. Mine are not the focus but what is is STAYING POSITIVE and STRONG at a time that can be very scary! Tasia is all I have and this road has been long and tiresome. We've lived in AZ for 9 of her 11 yrs so this move has located us to a situation that's like going BACK in time as the Big Island doesn't have the medical facilities as Oahu. Not cheap nor convenient, but possible. I've had to stop working for my own medical reasons and will face her surgery within the next month. I'm fearful, unaware of the caretaking involved at home. We will have to fly after 3 days of her surgery and am concerned of the flight itself (elevation an issue? Transporting onto a plane?). We've had to commute as it is for all consultations, which is a production in itself. Then will I know what to do? Her 6th grade will be lost? How am I to afford not working to care for her? Will I be able to handle all this emotionally? Financially? As a single mom with no additional help, inc her father, will I stay sane? YES! The fears are strong, but my determination is stronger.

BTW, her MRI shows there is hydromelia from C5-T7 and there is bulbomalacia. This explains her lack of coordination and nystagmus. As a very active mother, I often wondered why she was so uncoordinated and instead of letting it frustrate me, I accepted her for who she was. Her social skills may be affected due to her self consciousness of not fitting in. I am addressing her QUALITY OF LIFE....WILL THE SURGERY HELP HER? My parents of Vietnamese descent, naive to the woes of such a foreign disorder, as they ironically are, are dubious if surgery is necessary. Of course it's not NECESSARY, but I'm opting, at times questioning if this is best at her tender age of 11. They want me to wait until she's older, but I explain this is not something that'll be outgrown. As it is, this will be a milestone within the next month, and I'll be grateful to not fall to tearful pieces. Which I will when she's not looking.

So apparently my post is more of matters of the heart. And I ask for prayers. And it may be convenient or selfish that I've found faith as of late including my sobriety, but it's brought me focus, direction, HOPE AND POSITIVITY, which we know we can all use in a time of distress, suffering, negativity and worry.

But I write this with blessings counted that she's alive. And that the only mourning she faced today was the nail she lost this morning after it was crushed in a door sill over a month ago. Little does she know her suboccipital decompressive craniectomy, C1 laminectomy and duraplasty blah blah blah blah, ....aka brain surgery to her beautifully naive capability ( I was lucky she remembered how to say "cerebellum" upon her explanations to others said with such naivete. hahaha).

It's just past 1am and as a woman who's phobic of mice, I just heard one caught in my catch and release contraption that Tasia convinced me to buy. Again, it reiterates perspective because this baby mouse I've seen scuttering earlier has a demise that makes Tasia's surgery even more hopeful. The sun will rise and she's blessed to have mommy take her to an Hawaiian Festival with her friends, adding to another beautiful day as we take one at a time. Can't say this mouse will have the same. Love and ALoha, friends. Gina

Please don't assume I take light of any of your pain!! I'm so saddened by the posts I've read! But we're not alone. No answers given here, just a little more support, yah? Thank you for your time.....


#2

You are a very strong woman. My son who is 14 had the surgery in June. His Chiari had been missed on previous MRI’s and CT scans. His quality of life was so bad it was 2 weeks from diagnosis to surgery. As a mother I only wish he had the surgery years ago. You are doing the right thing by addressing it now. My son was blessed to have had the surgery and is in the healing process. I won’t lie. The recovery period was very difficult for both of us. I am not one that likes to take medication but Ativan helped me get through the first 3 weeks post op. The most critical thing I noticed was making sure the pain medicine was given on time. Don’t let the pain get a head of itself. Also, my son had to take an anti nausea pill with each medication dosage to help with the vomiting from the medication or pain we don’t know which. You not working righr now is a blessing in disquise as you can be there to help your daughter through the recovery period. If you meed financial help don’t be afraid to ask for it or creat a fund me page. People are very generous and will help. As far as getting on a plane after the surgery ask your surgeon about this. Maybe if you can gets some funds you will be able to avoid that. School will take care of itself. Get an IEP for the school and take all the help they will give you. They shouls be able to provide some type of help to get her through the year. My son had an IEP and got a medical excise for the last quarter of school becauee he had been to sick to attend. We felt bery bullied by the school. I had to educate them on Chiari. That helped. In the end their job is to educate our children. That is what taxes pay for they work for you. I wish you the best of luck and will keep you both in prayer.


#3

Please excuse my typos in my previous comment. I should have read ever it before posting it.


#4

Dear Lisa, Thank you so much for reassurance! I'll admit that I'm afraid that I'll be unprepared for her recovery process. Muscling her for the restroom, baths, feedings, medical attention....all of that is my apprehension although the loving, nurturing, attentiveness will come easy. She's sees me as her rock and this time it will truly be tested. My family have offered to help but with my mother who tends to be dramatic (if Tasia so as much sneezes, she may have 3 layers of jackets and a bowl of cream cheese to comfort. lol It's happened before). But frankly, I'll want to be her right hand wo-man, anyway. And my sister is of some help but my rock is 2500 miles away who's my extremely supportive boyfriend. Financially, the beauty of living in Hawaii is their medical insurance provided for single mothers like me. Which is a God send because I considered moving to San Diego but her condition was found before those wheels spun and this has been advantageous for her and I. Therefore the nature of GRATITUDE reals me towards seeing the glass half full! I am struggling financially but have confidence it'll work out as it has thus far. She'll be in pain, but she'll be comforted by love. She's young, hence her resillience is high and needn't worry about bills, relationships, work, peer pressure, status and her naivete will shelter her from the pains of the 'real world' at this point. She'll bounce back because she's seen her mother do so. And she won't know self pity so much as living life on life's terms. And importantly, she'll find the comfort in the Higher Power of God which her impressionable age doesn't question like those who cry, "Why ME? What God punishes me like this?" waah, waah, waah but believe that more is to be revealed. And with this power, this child already thinks her 5 foot nothing, 105 # mommy can beat anyone up and withstand all pain. Shhhh....need not tell. lol. The schooling is my concern because her memory seems faulty at times, but that very well not be due to Chiari but just being an 11 yr old. Regardless, I don't want her to miss a year since I already see some social anxiety and don't want to add to it.

As it is, I may a candidate for Ativan or the likes, andI don't like medication either. I took no pain killers for my surgery and now am more than willing to administer hers. Is it liquid form? And she's very likely to get nausea too. UGH! My poor baby will break my heart. So yes, timing is of the essence. Okay, as I have no issues with being out of work becuase her welfare is of the utmost priority, I also have to remember so is my sanity. But I've been groundedly positive and pray I will continue to be so. My bf will be flying out but he can't stay understandably because he has 2 young children he has to care for as well. But the blessing is the love and support provided to empower me further. Thank you, Linda for taking the time to address and reassure me that this is a good thing for her! And it seems your son is doing well ,considering. We have a long road ahead because we never know how the long term affects will be but as we've been doing, taking it one day at a time....one moment at a time....we're doing what we can, right? God BLess you and I hope to hear further updates from you regarding you and your son. Love and ALoha, Gina

P.S Didn't notice your typos when your message was so clear! :-)


#5

I'm sending my best wishes to you and your daughter.

You truly are strong! :)


#6

Thank you, Fugu. Sometimes being strong is the only choice you have…:slight_smile:


#7

Gina, I am new here as our 17 year old daughter has been diagnosed with CM-1 we went so far from meeting 9-14 with her neurologist on her first MRI to 9-17 for CSF MRI and today we were back in talking plan of action. It is all overwhelming. Like you, I live remote (Alaska) have you asked the dr about the flying? I will keep you and your child in my thoughts and prayers. Please keep us posted on her journey

Lisa


#8

Lisa, we just visited from our 2nd opinion this week. My frustrations did not lie in the actual travel anymore, because they both reassured me that the travel wasn't an issue.....but they both had different opinions on the urgency of her condition. One was practically, "let's do ASAP", the othe was, "let's do it next summer if you want." This spiraled me into indecision . But what I've learned from the concenses, Lisa, is the urgency on your behalf. Is she in pain? What are her symptoms? I'm am a loving beast yet with a practical approach that wants my baby comfortable. Prayers for you daughter as well! Hang in there, the resolution is there! I'd love to know more about her conditions status. This condition has so many variables we have to respect and consider....I will pursue a THIRD opinion before any further steps are taken. As it is, she's pain free. TIme will tell,friend. We'll be ok...chin up! ALoha, Gina


#9

Whoa, am I addressing 2 different Lisa's here? If so, consider it a sign....xoxoxoxo


#10

Gina, My name is Lisa Mikula and I think you replied to be since I was the last to respond. Our daughter Jocelyn was in a car accident 10 months ago. It was a horrific freak accident. She was the passenger and the only injury. Born with her right eye optic nerve under developed her left eye took the brunt of the injury. She was temporarily blind. Since the accident this young women has been complaining of headaches in the back of her head. Sometimes, her face and eyes become puffy when the headaches are really bad. She sleeps ALOT. Her back hurts as well. Neruologist said yesterday that he would consider her case very mild, the measurement is 8.3 MM, velocity could not be measured here so compared to seattle she had high spinal fluid movement. My gut tells me to find alternatives other than decompression surgery. I asked where her's was located and he said very high near c5. this is all I think about not knowing what to do or how to help. Like you, I want to seek multiple opinions. I hope that you get the answers. I hope I find my hope and strength because right know I just want to know WHY!

Lisa mikula


#11

My prayers for your daughter. I myself had my first surgery at 11. It was the greatest decision my parents could have made for me! I am still dealing with CM but Im here!
Im glad your daughter has you because love and Faith are what keep me going


#12

You are in my prayers….