After spending three solid days in testing and conferencing with my neurologist it is confirmed. I did not want to “let the cat out of the bag” until I knew for sure but here I am. I had hoped to NOT have to make this post but I will make it just the same.
For the past 6 months I have been experiencing rapid onset of disturbing neurological symptoms. I mean to say CAT and out comes DOG. I start a sentence and just go blank in the middle of it. I have to stop often and rarely finish a sentence. My eyes blink at different rates. I have relatively no feeling left in my right arm and hand. I choke on everything. I wake up in the middle of the night choking so hard I see stars. My ears ring constantly, sometimes so badly that I cannot hear people speaking. Headaches that go on for weeks. Pressure in my head that is so immense that I feel like my head might explode. The only remedy for it is prescription pain killers. I have started to stutter. I black out for seconds at a time. A few weeks ago I left the house without shoes on and arrived at my destination before I realize that I had none.
All of this adds up to a diagnosis of:
Frequent Unprovoked Seizures every 2-3 minutes (lasting up to 30 seconds) in the temporal lobe as documented by the EEG on Wednesday.
Arnold Chiari Malformation with a 10 mm herniation and a near complete blockage of the CSF flow in my brain with swelling in the right side.
Basically my whole brain is being squeezed and is swelling and is loosing its padding. I am in more pain than I can even describe and its constant. I have yet to find a way to relieve it except with narcotics. One cannot live on narcotics.
From here I am on a drug trial which will last 6 weeks. At that point the drug will be at its peak performance in my system. Depending on what symptoms I am still showing on scans and in practical application we will decide whether to proceed with a craniotomy procedure to remove a portion of my skull and dura to allow my CSF to flow around my swollen cerebral tonsils.
The thing that I know is that I know too much. I have done enough research about Chiari to be armed for Kyleigh (remember that Kyleigh has a 5 mm herniation also classified as an ACM) and I know what this means. There is NO CURE for this. This is a degenerative disease. There is no FIX … no BETTER. The best HOPE for Chiari patients is to control their patient and treat their symptoms because you cannot FIX the cause. The only proposed treatment (the craniotomy) is a radical brain surgery in which they remove a portion of your skull.
I told Dr. Leung when I walked into his office that I had Chiari and he said “we’ll see” but I knew I did. I knew it but I had hoped not. I had honestly hoped for a tumor. Something that was cut and dry. Cut, medicate and done. For me, for this person who like to “fix” things this is the worst possible scenario for my “need to fix” brain.
But, this will be, like everything else in our lives. A journey. I have been given this for a reason and eventually I will figure out the purpose. I have learned a lot and been blessed with many great friends in the medical community. I know, most of all, that if David faced Goliath… I can face this, and win.
This week has been a very sobering week. We are trying to plan a last minute getaway to the gulf coast but are having a hard time finding somewhere to stay. Before I look at the possibility of brain surgery and medications and all that I want to spend some time with my family. I want to dig my feet in the sand and enjoy the ocean. I want to watch my kids build sand castles on the same beaches that I used to run down when I was a child. I grew up going to Pensacola, Navarre and Gulf Shores and sense we have NEVER gotten to take a family vacation I am determined to get there before … the inevitable.
If you are out there and praying. I cannot ask you to pray for a miraculous healing just as I never asked for that for Kyleigh. I can however ask, that you will prepare the hearts and minds of my neurologists, radiologists, specialists, neurogsurgeons, and all in the medical community who will touch my case. I ask that you would pray for blessings for their lives and families. That they would be shown favor. That they would be given knowledge and wisdom beyond their years. I ask that you would pray for peace for our family. That God would grant us grace to see this journey through also and live to tell the story just as we have Kyleigh. We know that it will not be easy. But if I had to choose this journey for me or Ky… I am SO glad its me and not her.
Also… if you know of anyone who has a condo in the gulf area who might be willing to let us rent it from them (I have a TIGHT budget) please let me know!
For tonight… I am taking my meds and hoping not to experience any of the side effects that are on the pages they give you. I am going to enjoy some pizza and my new guilty pleasure “Royal Pains” – the show on USA… its great if you have not seen it! And wake up tomorrow to a new day, with a new resolve to make this new life work.
Good night.
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Amber,
You will be on the top of my prayer list. My heart goes out to you and your family. You have been such an inspiration to so many, and such a place of comfort for me through some tough times.
I think about your family often, and will continue to do so.
In sisterhood…
Mel
Dear God- I am shocked to read AMber’s post. Shocked and crushed. Please send her the grace that carries us through. PLease let the meds help and hte surgery (if needed) bring relief. PLease heal her. Grant her family the help they are going to need. Keep Kyleigh well. Strengthen their marriage. Miraculously intervene in their finances. Be their shield and defender. In JEsus’ name!
Jessica
http://www.fromthebanksofjordan.bogspot.com
Amber, is there any way this is NOT related to what Kyleigh has? Seriously, there has to be a link… right? Not that you have time to deal with that now, but speaking from the land of VACTERL that is not really (or only) VACTERL… Kyleigh has been as “off” as Eithene and now you- it just doesn’t add up.
Just my two cents worth
You will be HEAVILY in my heart.
Jessica
Omgosh Amber….I am in tears and almost speechless! I am so sorry to hear this. I know your strength and I KNOW you KNOW our God can & will heal this! You have my prayers my friend. I also may be able to help you with a stay in Orange Beach. Tell me when you want to come Email me at daphnejerkins@gmail.com.
Lots of love to you and you family. I hope that K has been feeling well.
Love to you my friend!!!
Daphne
Amber,
I live here on the Gulf Coast. I’ll put out some feelers and see if I can find something.
You’re in our prayers!
-Pam
I just talked to Roddy…..we have a place!! I need to know when you can be here to make sure it’s available and if so, it’s yours! He is meeting with the owner {his dad} in the morning, so shoot me the dates as soon as you see this!;)
Praying, praying, praying. I realize you do not know me… I came across your blog through the blog of a family I know from Lexington and as an individual who one day hopes to be a child life specialist I got interested.
I was diagnosed in April with a chronic incurable disease and though I cannot even begin to relate to the extent at which this will effect your life… I too have suffered from immense chronic pain and I want you to know you’re in my prayers.
I will share that Dr. Leung is an amazing doctor who treated my migraines with such a compassion and understanding that I will never forget him… it was several years ago and I can still share that about him. I know you’re in good hands.
Please know that I am praying for you.
I am sorry to hear this. However, Chiari is NOT a degenerative disease. It is a birth defect. The defect is when the skull is deformed, causing the tonsils and such to herniate into the spinal canal. The removal of the base of the skull, near the neck, doesn’t always help with the tonsils. Recovery is very difficult for adults. It is better for some children, but there are side affects. Like nerve damage, which causes constant pain. So many doctors think it is all in a person’s head, when actually isn’t. Medications to block the nerve pain helps.
My 8yr son chiari has been decompressed and is doing fairly well for how bad his chiari was. He still has the syrinx in his spinal cord, which hasn’t gotten worse nor better. However the nerve pain really gets to him. His neck hurts if he holds his head forward or back to long. He sleeps with a memory foam pillow…excellent for those with chiari and decompressed.
Without surgery Daniel would have died. Not did his the cerebellum tonsils herniate, but his brain stem did as well. He has emergency decompression right away as he started to not be able to see or walk. He never had seizures, but was always screaming and banging his head…he hurt and wanted it to stop.
He still hurts, but runs and is very fast. Chiari is also in the category of Dysautonomia. He also has Fibromyalgia. Daniel is as trooper and handles what he can very well. Nothing slows him down and lives pretty normal despite the pain. But Chiari is not a disease.
Am,
Simply unbelievable. I have no words…. God is in control and this must be for a GOOD reason. ??
All that online time you spent researching Ky’s conditions, she really did save you afterall, just like you said!
When you guys get here, let me know asap so we can all go out on our boat and go tubing and camping at the point, aka the beach you can only get to by boat.
My 6 year old nephew, Allan, lives with us now, and he would love to meet your kiddos.
I love you Am, God is going to do a miracle in you and through you, just like he has done in your marriage, and in Ky.
I have an unopened box of ALL the Disney Princess Barbie Dolls for her to take home when you come visit!
You can stay a few days with us, if you can stand our remodeling project(s). It’s FREE anyway, you do not need a coupon…hehe!
I am still looking for you a resort, so let me know if you find something before me.
We love you all….
Hi! I follow your blog from Eithene’s.
Melody
I’m sorry to hear of all of these complications.
Natalie, my daughter, has a 22+mm herniation. We wanted to do the least invasive because of her underlying disorder. Her neurosurgeon drilled away C1 and part of C2. It is not the BEST fix, but it is much better without entering the brain.
We will pray for you and your family!
http://www.caringbridge.org/visit/natalieholmes
Amber,
You are in my Constant Prayers – I felt soemthing the other day when I posted on your FB… I wished it was TRUE – I know you and your FAITH… Hang in there my FRIEND!! If you need anything – LEAN ON US PLEASE!!!
Enjoy your vacation time with your family – that is IMPORTANT!! (Hope the Daph’s Condo will work out – Love U Daph)
Just remember you are not alone in the journey ahead of you!!
Lots of LOVE, HUGS and PRAYERS, M
I will continue to keep you and your family in my prayers.
Amber,
I am so sorry to hear of these most recent turn of events. I want you to know that I keep you and your family in my daily prayers and I will continue to do so. I know that we serve an awesome God and he will bring you through this just as he has in other circumstances. Lean on him and he will direct your paths. If you need anything, please keep Josh and I in mind.
Love,
Jessica, Josh & Chloe
Dear Amber,
I was so shocked and saddened to read your most recent post. You, your family, and the doctors who treat you will all be in my prayers. Though I am not as eloquent as you or some of the previous posters, please know that I am thinking of you.
Amber, I am so sorry to hear of this. How scary this must be. I think it is much harder, speaking on the perspective of mom , to deal with medical stuff for our children then it is for us. Because like you said, ,, we know to much.
I will pray for you and pray that the decompression surgery helps your symptoms.
http://www.caringbridge.org/visit/margaretreed1
I meant to say that its harder to deal with our medical problems then it is our children’s health problems.
Our 16 year old daughter has Chiari I. Initial minimally invasive surgery (1.5 X 2.5 cm bony craniotomy and C-1 laminectomy)by our local neurosurgeon has helped only slightly. We have just returned from Colorado after seeing Dr. Oro and are very impressed with him. I would recommend that you consider a visit to Dr. Oro. His website is http://www.chiaricare.com/Welcome.html. We plan to pursue further surgery with Dr. Oro if our daughter’s headaches persist. Best wishes. Jim L.
Oh Amber… I am praying with you and for you. I am in utter shock right now as I am sure you are. Don’t ever forget just how big our God is! I am praying for a miracle, for a complete healing and nothing less! I love You, Troy, Ky, Ross, and Owen and am praying for the very best. Please e-mail or call if you need anything!
Amber — I am praying that you and your family will find strength to cope with this journey. I know you are so strong and have such a strong faith in God that you will make it through and find understanding in what is happening. I will also be praying for the doctors, nurses, surgeons, etc, that are providing you care. I hope you are able to take your vacation and soak up the sand and the sun. Please keep us updated.
Amber!
I am praying, praying praying! May God let you know that He is keeping you in His hands, and on His great loving heart! In spite of what you say, I *AM* asking for a miracle of healing, and for all the other things you ask us to pray for.
LET ME KNOW what I can do.
Much Love,
Renee
You are in my thoughts & prayers!
Amber, I am praying for you and your sweet family. I just wanted to let you know I am thinking of you and praying for the best.
Love,
Amy
Amber and Troy,
Just know that we love you and want to help with WHATEVER you need when you get back from your trip. We will keep you and your family in our prayers.
Sheila and Greg
As I read this tears are rolling down my face. I am so sorry that you and your family have to go through this. You always think that your situation is the worst ever until you read someone else’s situation. I will pray for you and your family to be strong and continue to draw strength from our Almighty God and for HIM to give the doctors the knowledge to help you to live as normal of a life as you can so that you can enjoy your beautiful family.
Amber,
Loads of hugs and heartfelt prayers go out to you, your family and the doctors and staff who will be caring for you.
Never give up hope that you may be a miracle for all to see and a witness to God’s power and grace!
I am waiting on the physical addy and i will email and text it to you-
can’t wait to see you all!
BE SAFE! XOXO Daph
Amber –
I just want you to know that you will be in my prayers and if there is anything we can do for you, please let us know. I know you will find the strength to get through this situation as you have with every other obstacle in your life. Continue to be strong.
Amber,
You do not know me, however I have been following your blog for months and am deeply saddened by your post.
Please try to get a second opinion about the best course of treatment, my daughter’s neurosurgeon is Dr.Ellenbogen in Seattle, WA. I am sending this link http://vimeo.com/5387881 and hope this is useful.
My prayers!
I just want you to know that i have just started a yahoo group “advocate4ourkids” in an effort to be a voice to others. My son had a chiari malformation and hydrocephalus. he had two decompressions of his chiari. First one didn’t work, six weeks later had another and it helped him tremendously! He didn’t gag like he did before surgery, he didnt have the pain he had prior to surgery, he was a different kid…it sounds like the pain and suffering you are having now, would be helped by surgery, but what i want to warn you of is that by removing the portion of the skull, Sam was then at risk for other injuries and due to his hydrocephalus, and his extremely large, heavy head, he hit his head alot. In April he rolled off my bed and hit his head right where he had the surgery for his chiari and he ended up having a brain stem injury and we lost him BUT…i want to tell you that if doctors would have listened to me five days before Sam passed, i think he might have survived. He had swelling and i think that’s what killed him was the swelling..and that is something that they could have done something about. So give it lots of thought…But know that it does help some…
http://www.caringbridge.org/visit/samueldavidschweinberg
Amber, You are definitely in my prayers, as is your whole family. I cannot imagine what you guys already have gone through and then for you to have to endure this, it pains me. I really hope you guys can have a little family getaway before you decide on what to do and/or surgery!! Also, my husband and I and some friends were able to go to The Fray concert here in Houston last night (thank you to his work for the free tickets and my mom happening to be in town to baby sit woo hoo!!!) and that song you talked about in your taking back what’s yours post really meant a lot more to me hearing it live and then somewhat referencing it back to what you said- amazing. They were so great live and it was at an outdoor venue in the woods, gosh it was just wonderful!! Anyhow just wanted to thank you for your posts and how real you are in them. You are in my prayers!!
Amber,
My thoughts and prayers are with you and your family. I am so sorry to hear all that you are going through.
Thinking of you, Claire
Amber, I will keep you and your whole family in my thoughts. I would tell you to remain strong, but it appears you already are. Big hugs, Amy
Amber…if anyone has already been through enough in their lifetime, it is you and your family. I am so sorry that you have to endure more…more than anyone should have to. My thoughts are with you. Sending a big hug your way.
Amber-
Your story about Ky had touched my heart and now this is almost too much. I hope you feel as strong as you sound in your writing. I know we don’t ‘know’ each other, but your faith has moved mountains…I will pray that it can do that again! We don’t believe because we see, we see because we believe. I will continue to pray for you and your family with more special intention!
Holly (Franklin, TN)
Amber-
I found your blog through looking at another blog and I just wanted to let you know that the doctors discovered that I had Chiari when I was 4 years old and I am now about to be 22. I have had 2 craniotomies and I have a spinal shunt that drains the CSF. If you have any questions or just want to talk to someone who has gone through alot of the same things you are more than welcome to email me. I do want to let you know that with the doctors’ care and lots of prayers you will definetely be able to live a normal life with Chiari, speaking from someone who has. You are in my thoughts and prayers! Avery H.
I am not sure how I got to this site today… I came from Bentley’s page and I believe it was directed by God. First I want to say I am so sorry that you have to face yet another battle. I have not been through your blog to read your entire story on Kyleigh but it listed her on Bentley’s page as a heart baby so I can only imagine… I will be praying for you family. But the whole reason I commented– My mom has (had) Chiari Malformation. She found out 2 years ago next month. She had to undergo the surgery to re-form the skull around the brain stem/spinal cord to remove the pressure that was causing her so many of the (exact same) problems you have been experiencing. While it was not an easy recovery and she did face many setbacks- she has a quality of life now that she has not had for so long. She is able to go weeks at a time without one single headache- something she had not experienced in any of my life. She is able to watch my 10 month old baby and spend time with him without worrying that she may not be able to remember what she is doing while watching him. She is able to laugh without feeling like she is going to explode from pressure. I can tell you first hand, that surgery saved not only my mom’s life, but also let her be the person that she wanted to be. The person who was lost in all the pain. I do recommend doing a deep research before settling with a doctor- my mom’s first surgery resulted in a staph infection that I will always believe was due to the ignorance of her doctor to the symptoms after her surgery. She had to undergo a 2nd surgery 6 months later, which set back her recovery. But as I said…she is a living miracle now. I pray that you find peace with whatever decision you make and I pray that God sends the right people in your direction to encourage you. I pray that this will not take you down, but lift you up- knowing that you are in God’s hands. This came as a surprise to you- there are no surprises to God.
Amber,
I am so sad to hear about your diagnosis. After all you have went through with Ky. If there is anything you need, please please let me know. I’m in Nicholasville so it’s not that far away.
thinking and praying for you all!! I am speechless and so sad you are having to go thru this.
Thought maybe you would be interested in this, Amber.
http://www.baylieforbrains.com/
Thought you might be interested in applying for an all expense paid family trip to Disney World. It really is a great program! http://www.kiddskids.com/
Wishing you the best from here on out.
Hi Amber, my name is Dee Dee Huey. You stayed in my sister’s (Pam Quinley) condo in Gulf Shores. I wanted to let you know that you have really blessed our lives, simply by being you. Your story has touched us in many ways. We are truly blessed by you. As I read your stories, I can’t help but feel that you are a might woman of God. You are just amazing. You have encouraged me with your walk. Your trials and tribulations have made you stronger. When you could have cursed God, you have chosen to bless Him and bring Him glory. I know that he is very pleased with you. I just wanted to say hi and that I was thinking of you. We will be following your story. May God grant you the peace that passes all understanding. Keep acknowledging Him. He will guide your path.
Love,
Dee Dee Huey
Thanks so much for the link! I just checked it out and the applying child must be 5 years old so we have to wait two years but I will definitely keep it in mind! We do live in a Kidd Kraddick area so we would be eligible! It touches my heart that he does that because so many kids like Ky DO slip through the cracks! Ky is not “dying” she is living with her disease so she is not eligible for “Make a Wish” but I truly feel that she has been through more than ANY child ever should have to.
I have no words…I am speechless…my heart hurts after reading this, God must have big plans for you, I admire your strength and know this will cause you to touch so many more lives..some how making the world a smaller place…God bless you and your loved ones Amber..you are in my prayers.
I just came across your site today. And then back tracked to see what type of neurological issues you were having. I will start praying today. And I won’t stop. I will pray for the miracle you do not feel you can ask for and for everything you asked us to.
Prayers have been said for you and your family and all persons involved. I will continue to lift you all in prayer.
I am sending my prayers up to the Lord!!!
http://www.bartonchiro.com/custom_content44529_arnoldchiari_malformation.html
I know this is a suggestion which may be construed as advice, but I have had significant experience seeing the miracles that have happened as a result of something that seems unconventional to me as a person who depended heavily on medical doctors to fix my issues. I didn’t believe that it had a chance in hell of working for me until I actually experienced the relief and healing.
Upper cervical chiropractic, specifically Atlas Orthogonal (sometimes also referred to as Gonstead technique) is a gentle manipulation (not the crack your back/neck type …VERY VERY different from that)
I have experienced ABSOLUTE miracles in pain, health and healing of migraine suffering through this.
If you haven’t considered it I would strongly suggest finding an atlas or Gonstead specialist in your area (or travel to one) it may just be a viable and strong relief for some or all of the symptoms.
http://www.atlasorthogonality.com/PatientSite/aboutAO.html
I just cannot explain what a miracle submitting myself to speak to and be examined by an Upper Cervical specialist did for my life and my health!!! MIRACULOUS RESULTS!
My prayers are with you and your family now! God be with you!
Jessie
Thanks Jessie! I will look into that. I am never opposed to treatments as I truly believe that God sends just the right people and doctors into our lives to be a blessing to us!
I’m frequently looking for brand-new articles in the internet about this matter. Thankz.
my friends and I seriously would like to thank you, this was good to read.