Too Much Brain To Contain
I have a rare disease called Chiari Malformation. I need to have surgery, Chiari Decompression and C1 Laminectomy.
This fund will pay for my co-pays, deductibles and travel expenses. My current medical expenses are so high due to the costs of conquering cancer three times and being diagnosed with a connective tissue disorder as well. This added expense has to be paid before they will do the surgery.
My husband and I both, cannot tell you how difficult it is to ask for help. We feel at this point...we are running out of options. My surgery is scheduled on February 23rd, 2015. We believe with your help...we WILL reach our goal!
We understand if your not in a place to help. We also greatly appreciate all prayers and positive thoughts! :)
love and light,
Steve and Therese Lawson
HERE WE ARE 9 MONTHS LATER
My surgery didn't go as expected. I ended up with a damaged lung, an aneurysm behind my right eye. The aneurysm was 5mm after the surgery. The last MRI showed it has grown to 8mm. This was done over a month ago. This has also caused the autoimmune disease I have to worsen. I can't take the meds I need to help because of the aneurysm. I was told yesterday, I'm too high risk.
Now, my husband needs surgery on his back because it's broken. They may not be able to fuse and put plates because it is so arthritic. On top of that, he is going through a cardiac pre-op so he may be released to have his foot surgery. Evidently his e kg came back abnormal. On his birthday he fell and broke his foot so badly that they are going to take bone from his leg and place a plate, pins and screws. His foot will be fused. He will never be able to walk without a cane again.
Thanks to Dave and Leen Cramer, I have a safe and reliable car to take to Stanford. We are overwhelmed by their kindness.
We now have an account set up at Tri Counties Bank in Weaverville for those who would rather not use this website and donate directly to the account.
We will do our best to keep you updated. We hope that you can make a small donation. However, we understand what it's like to struggle financially. Wether you are able to make a donation or not; we humbly ask for your positive thoughts and prayers. :-)
love and light,
Steve and Therese
As far as myself. My surgeries are still on hold the aneurysm is slowly growing but fully encapsulated. So no leaking. I ask that you keep us both in your prayers. I have faith that this year will be a good one and that God will guide the surgeons and help us get through this. I've also added some information on my brain disease to help those that don't know what it is. Many people have asked I hope this helps. Love and light, Steve and Therese Lawson. :)
There are hundreds of symptoms of Chiari Malformation. Many get blown off or some don't even know they have them. Some NS's say the main or only symptoms are headaches, which is not true and some uneducated doctors and surgeons will say that a herniation must be a certain size, which the current research shows is definitely not true. Please do your own research on these conditions, NS's and see an expert Chiari Neurosurgeon that is very knowledgeable in chiari and its many related conditions and disorders.
*Headache (esp. if daily OR at lower back of head, but can be anywhere on the head)
* Painful tension in neck
* Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or “halos” / nystagmus
* Tingling / numbness in the extremeties
* General imbalance / clumsiness
* Memory loss
* Restricted movement
* Intolerance to bright light / difficulty adjusting to light change
* Vertigo from position change or sudden standing
* Difficulty walking on uneven ground / feeling ground under feet
* Poor / degraded motor skills
* Difficulty driving
* Difficulty negotiating steps
* Pressure / pain in the neck
* Pressure / pain behind the eyes (soreness in the eyeballs)
* Back pain
* Neck spasms
* Ringing in ears (like the tone heard in a hearing test)
* Pain when changing position
* Tingling / crawling feeling on scalp
* Intolerance to loud / confusing sounds
* Decreased sensation to touch in extremeties
* Decreased sensitivity to temperature
* Pain & tension along ear / eye / jawline
* Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
* Spontaneous vertigo
* Hand tremors
* Poor blood circulation / cold hands & feet
* Sinus / mucous problems
* Sleep apnea
* Decreased muscle tone
* Pressure in ears / ears feel stopped up
* Difficulty reading / focusing on text
* Depth perception problems
* Burning sensation in extremeties / shoulder blades
* Menstrual problems / severe cramping during period
* Fluid-like sound in ears (like water running)
* Loss of sexual interest / lack of sensation in pelvic area
* Pulling sensation while sitting / standing
* Intense itchiness w/profuse sweating
* Slurred speech
* Gag reflex problems / lack of gag reflex
* Pressure / tightness in chest
* Loss of bladder control
* Frequent urination
* Dehydration / excessive thirst
* Electric like burning sensations
* Unequal pupil size
* Loss of taste
* Popping / cracking sounds in neck or upper back when stretching
* Loss of smell / problems with sense of smell
* Dry skin and lips
* Sudden / abrupt changes in blood pressure due to awkward position of head
* Hiccups associated with drinking carbonated beverages
* Skin problems
Other: migraines, oscillopsia, lump in throat, color blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, “strangling” feeling, “floating” sensation, thickening of finger joints
The following is a list of related conditions.
Neurally Mediated Hypotension
Numerous hormonal imbalances
Empty sella syndrome
Central Sleep Apnea
Ehlers Danlos Syndrome
Tethered Cord Occulta
Spina Bifida Occulta
Cranial Cervical Instability (CCI)
Autism / Autism Spectrum
MCAD Mast Cell Activation Disorder/Mastocytosis
CCSVI Chronic Cerebrospinal Venous Insufficiency
MS Multiple Sclerosis especially for EDSers
APS Antiphospholipid Antibody Syndrome
Lordosis / Loss of Lordotic Curve
*Sensory processing disorder
My surgeries have been put on hold until the aneurysm in my brain; behind my left eye is gone. I'm getting the feeling I may not be getting the surgeries I need for quite sometime. However, I will be starting chemo creme for skin cancer in October. This will be my 4th time dealing with cancer. I know I will kick it's butt!
Just finished my 5th sleep study. I failed that one too! Let's just add chronic obstructive and non-obstructive sleep apnea to the bunch of diagnoses. Lol
Looks like I will be coming back for the 6th time to readjust my bipap machine.
Wish me luck! love and light, therese
It has been an eventful last couple of weeks. Before my husband and I went to Stanford last week; I was able to visit my parents in Vancouver, WA. For a couple of days. I cannot tell you how good that was for my soul. I really missed them. I am blessed to have them in my lives.
I cannot say the visit to Stanford was as fun. I believe seeing my parents gave me enough fuel to make it through those couple of days and the travel as well. I finally got my butt out of bed 2 days ago. It feels good to go out on my back deck and breathe in the fresh air. Listen to the creek and the wildlife around me. Boy...think I needed that too! lol
OK...out with what's up. All of my surgeries have been put on hold indefinitely. This includes the aneurysm, Chiari and disc repair of the discs in my neck. I've been loosing around 5 pounds a week. The pain in my head/neck is causing nausea and fatigue. I'm also having a difficult time with my hip and the Raynaud's Syndrome.
They have added a new med for the Raynaud's. Froze several more cancer spots from my face. In October, I will be starting the chemo cream.
They also want to run more tests as they feel the Thyroid Cancer is hiding in other places besides my lymph nodes.
Sooo...here we go again. I get to feel like a test subject again. lol
Seriously, my husband and I have faith that I WILL get through this!
Thank you for your continued prayers and positive messages and the donations from those of you that are able. They mean so much to us both!
love and light, steve and therese lawson