First of all, let me begin by apologizing for our delay in posting an update. I know you have continued to check the blog and have been wondering how Mackenzie is doing.
Well, our delay in posting is good news! Although when we first returned home she was tired and needed extra rest, she is feeling so well now that she is actually busy getting ready for the new school year to begin in two weeks.
For those of you who are also involved in the Ehlers-Danlos, Chiari, and tethered cord world, you know there is no “cure” for these conditions. Surgery is often performed, however, to help minimize, prevent, and, in some cases, alleviate some of the debilitating symptoms associated with these conditions. We have come to understand that a key factor in achieving positive results with the surgeries is early diagnosis. Fortunately, Mackenzie’s journey from the time of onset of her symptoms to the time of treatment was a relatively short one, less than two years. There are other patients in similar situations who have struggled for 5, 10, even 20 years to find proper treatment and some have had less than optimal outcomes.
By medical standards, Mackenzie’s surgeries were successful. The anatomical abnormalities were corrected: Her tethered spinal cord was released by the first surgery and the Chiari malformation and cranial settling and instability were corrected by the second surgery.
By patient and parental standards, we can also thankfully call these surgeries successful. Let me tell you about some of the improvements:
Headache: She awoke from the anesthesia of the second surgery without a headache for the first time in almost two years, and, so far, she still has no headache.
Walking: She is now able to walk at a normal pace with a normal stride and is even able to once again walk on her tippy-toes. She is ready to sell her wheelchair and throw away her handicapped tags! :)
Tachycardia (rapid heart rate): Her heart rate returned to a normal rate and rhythm after the first surgery.
Joints: Her joints seem much stronger, and the aching and tingling has subsided.
Cognitive ability (thinking): This has also gradually improved. She has already finished reading one novel and has started a second.
Mackenzie has a followup appointment with Dr. Henderson on August 10th; she and I will fly to Bethesda on the 9th and will return home on the 11th. Thank you in advance for praying for our trip.
We, of course, will never be able to express our gratitude to all of you who have prayed for us and with us over these months. The Lord has answered these prayers in powerful ways. He has surely done more than we could have asked or imagined (Ephesians 3:20).
We ask that you continue to pray for Mackenzie, as her journey with these conditions will be life-long. We ask that you pray for continued improvement and strength in her body and mind.
We were challenged by a friend recently to make sure we praised the Lord as fervently as we prayed for Mackenzie. So, that is what we are doing—praising the Lord for His unending faithfulness.
We love you all,
Lisa & Mackenzie
PS—For any of you who suffer from Ehlers-Danlos, Chiari, tethered cord, and related neurological conditions, feel free to contact us directly at mackenziemathis@live.com if you have questions regarding her treatment. We have been helped tremendously by those who were willing to share information with us as we sought treatment, and we hope we are able to do the same for others.
Well, our delay in posting is good news! Although when we first returned home she was tired and needed extra rest, she is feeling so well now that she is actually busy getting ready for the new school year to begin in two weeks.
For those of you who are also involved in the Ehlers-Danlos, Chiari, and tethered cord world, you know there is no “cure” for these conditions. Surgery is often performed, however, to help minimize, prevent, and, in some cases, alleviate some of the debilitating symptoms associated with these conditions. We have come to understand that a key factor in achieving positive results with the surgeries is early diagnosis. Fortunately, Mackenzie’s journey from the time of onset of her symptoms to the time of treatment was a relatively short one, less than two years. There are other patients in similar situations who have struggled for 5, 10, even 20 years to find proper treatment and some have had less than optimal outcomes.
By medical standards, Mackenzie’s surgeries were successful. The anatomical abnormalities were corrected: Her tethered spinal cord was released by the first surgery and the Chiari malformation and cranial settling and instability were corrected by the second surgery.
By patient and parental standards, we can also thankfully call these surgeries successful. Let me tell you about some of the improvements:
Headache: She awoke from the anesthesia of the second surgery without a headache for the first time in almost two years, and, so far, she still has no headache.
Walking: She is now able to walk at a normal pace with a normal stride and is even able to once again walk on her tippy-toes. She is ready to sell her wheelchair and throw away her handicapped tags! :)
Tachycardia (rapid heart rate): Her heart rate returned to a normal rate and rhythm after the first surgery.
Joints: Her joints seem much stronger, and the aching and tingling has subsided.
Cognitive ability (thinking): This has also gradually improved. She has already finished reading one novel and has started a second.
Mackenzie has a followup appointment with Dr. Henderson on August 10th; she and I will fly to Bethesda on the 9th and will return home on the 11th. Thank you in advance for praying for our trip.
We, of course, will never be able to express our gratitude to all of you who have prayed for us and with us over these months. The Lord has answered these prayers in powerful ways. He has surely done more than we could have asked or imagined (Ephesians 3:20).
We ask that you continue to pray for Mackenzie, as her journey with these conditions will be life-long. We ask that you pray for continued improvement and strength in her body and mind.
We were challenged by a friend recently to make sure we praised the Lord as fervently as we prayed for Mackenzie. So, that is what we are doing—praising the Lord for His unending faithfulness.
We love you all,
Lisa & Mackenzie
PS—For any of you who suffer from Ehlers-Danlos, Chiari, tethered cord, and related neurological conditions, feel free to contact us directly at mackenziemathis@live.com if you have questions regarding her treatment. We have been helped tremendously by those who were willing to share information with us as we sought treatment, and we hope we are able to do the same for others.
3 comments:
Hello my dear! I have been requently checking on you, and am glad to hear it's for the better that there was no updates!! You keep at 'er and you will go far!
Yes, Dr. B did say that I think the most improvement for symptoms are seen if they are taken care of 2 or less years as of the onset of symptoms. You did it in good timing!
I head back to NY for my ICT and follow-up appointment with Dr. K and a NS in September, so I will find out the next step than! I just had my DEXA and will be getting the results tomorrow.
I have added a bunch of new stuff on my site. You should check it out and update everyone on your progress! :)
Take care darlin'!
<3 Kristen
great to meet you, lisa and mckenzie! i am so glad to hear that things are beginning to be a bit better. i just read thru your blog and i am sorry for all you go thru but inspired by your dedication, lisa - mckenzie is one lucky girl! do you have EDS too? how did you detect the chiari malformation? CT? i have type 3, and i had my doc do a CT just as a preventative measure, just my primary care ordered one. was that what they caught it on? i have a blog as well - DanielleDavisEDS.blogspot.com - love and hugs your way, both of you!! xo Dani
Praise God for such a clear and wonderful response to the surgery. My daughter went through decompression surgery when she was 3. She has mild autism as well. She could not tell us what and how bad she was hurting. After the surgery she was able to walk up and down steps and hills! We didn't know it but the Chiari pressures had taken away her depth perception. No Chiari and she could play and run like other 3 year olds!
God bless
Heather Laurie
www.specialneedshomeschooling.com
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