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Archive for the ‘info’ Category

Update From Cris Day 5

Sorry to all of you that this didn’t get out sooner.  Yesterday was a big day for Amanda.  She was eating better, moving around a lot better, and just overall feeling good…all things considered.  They took away her happy button (pain pump) and started her on oral pain killers.  It’s a step that she’s showing progress.  In addition, they removed almost all of her IV lines, so no more tangle of plumbing being connected to her.  It sounds like a small thing, but it gave her a sense of freedom.  She saw a physical therapist for the first time and she did a session of hall walking with her.  We had our close friends Mike and Fred stop by to see Amanda (and Kate), which brightened her day.  Mike was visiting from out of town and it happened to work out that he could come by the hospital and see her before his flight left town.  It was good to see him leave on an airplane and not arrive by helicopter (sorry Mike…Amanda approved that joke since she was feeling better).

By the end of the day she was finally in her own pajamas and feeling good.  Overnight though, her progress from the previous day caught up with her.  She was feeling pretty rough this morning (pain and fatigue) but as the day has progressed, feeling better.  A few solid meals in her, a lot of quiet rest (and a Vanilla latte from Starbucks) has put her in a much better mood.  They changed some of her meds up on her and they seem to be working well.  We’ve got a couple of visitors coming later, but that may be all she can handle today.  Tomorrow will hopefully be much better and if you are interested in stopping by, let me know.  There is talk of possible release tomorrow, but we are not at all rushing things and feel whenever they decide is right is fine by us.  Amanda has continued to make sure I let everyone know how much the email support means to her.

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Late Night Update

Hey, it’s Jess again.  It’s about 11:15pm here in Salt Lake.  We drove down this evening so we could take Kate to the zoo tomorrow and see if I could charm my way into see Amanda sometime tomorrow.  The Magic 8 Ball says “Bwahahahaha! You have a better change of being crowned Miss America!” (have you seen me?  those aren’t good odds), I’m going to try anyway.

I actually had a chance to speak with Cris on the phone this evening, we do need to know where and when to pick up Kate.  He said Kate is doing great! She had her first sleep over and was quite content playing with her new friends.  She is very matter of fact about what is happening with Amanda and is taking it all in stride.   Of course her parents did a great job bringing it to her level which probably made it easier for her.  I’m sure this eases Mandy’s mind some,  we had spoken about her concerns about how all of this would impact Kate many times.

Cris also told me Mandy has had a rough day.  I imagine 6 weeks of anticipation and build up, delays on surgery day with a killer headache, anesthesia and your body readjusting to a more ‘normal’ (that word always cracks me up but anyway…) function would do a number on one’s system.  Not to mention all the little things that pop up on a day to day basis and the thoughts that bounce around inside your mind when you’re looking at brain surgery.   They decided to change her pain meds this evening to see if that will help eleviate some of her discomfort.
He also shared with me that he is reading your emails to her as they come in and saving them in a “surgery” folder so at some future date Mandy can read them for herself.  He expressed their gratitude and appreciation for the outpouring of concern, prayers, best wishes and love several times.  I took it upon myself to tell him that everyone understands that the two of them are unable to respond to every email at this time.

Since we will be in and out all day tomorrow,  I’m not sure when I’ll get to update.  Please continue your prayers, positive thoughts, candle burning or whatever it is you do, that the med change will bring her some comfort and much needed rest.  (And hope the Magic 8 Ball was wrong. 😉 )

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Answering Questions

There are 2 main questions that I keep hearing over and over again:

  1. How  will I know how surgery goes?
  2. How are you doing?

To answer the first one — we’re going to update as many ways as possible, while putting as little stress on Cris as possible.  As things come up he’ll make phone calls to a handful of people (immediate family and closest friends), send an email update and then word will trickle from there.

One of my wonderful friends has been asked to post updates here on the blog.  After they post, they will show up on Facebook, but it may take a couple of hours.

When Cris gets some time he might add his updates here as well.  When I’m feeling up to the task, and Cris brings the laptop to the hospital, I’ll add my two cents.

So I guess the answer is, to primarily watch here for updates.

In regards to #2.  I’m having brain surgery in 5 days.  I’m starting to freak out.  I’m trying to take time to myself, to spend time with those important to me and to not completely lose it.  There are moments of calm and peace that are unexpectedly punctuated with tears and a desire to hug those I love. And at the same time I look forward to the life that starts after surgery.

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The Surgery

As surgery creeps closer and closer (21 days!) I can no longer coincidentally forget to post about its specifics.  😉

The object of Chiari treatment is to stop the progression of symptoms, and relieve the existing ones. This may be accomplished by decompression of the brain stem, cerebellum and spinal cord, as well as re-establishment of spinal fluid circulation.

Thankfully (in my opinion), the surgery is performed with the patient asleep under general anesthesia. An area of hair about 2 inches wide is shaved at the back of the head from the bottom of the hairline to midway up the pack of the head. An incision is created from the occipital area at the back of the head down to the upper neck.  Once the incision is opened, the neurosurgeon will begin the task of exposing the skull and spinal vertebrae.

Decompression is achieved by removing the bony structures that are compressing the brain stem, the spinal column and the cerebellum. Bone is removed at the base of the back of the skull (posterior fossa decompression )and from the back part of the cervical one (C1) vertebrae (cervical laminectomy). In rare case, the lamina (roof bone) of C2 is also removed. The goal of the surgeon is to remove as little bony structure as possible.  There needs to be sufficient space created to allow the tissues to decompression and expand, but if too much bony structure is removed it can allow the brain to “slump” down into that newly created opening.  Thus creating more problems.

Once the sections of skull and vertebrae are removed the team will work to expose the dura mater of the brain.  The dura is a tough membrane that covers the brain and spinal column.  It is responsible for containing the cerebrospinal fluid.  The dura needs to be opened to allow decompression; it will not allow much decompression unaltered. In some cases, marked crowding is present despite opening of the dura.  In these cases the tips of the cerebellar tonsils are shrunk with electrocautery.  The tonsils are no longer functional brain tissue (due to the compression and lack of blood flow) so no damage will be done by shrinking them.

A patch of tissue will then be sewn into the opened dura to allow room for expansion.  Dr. Schmidt uses a bovine product called durepair as the patch.  Over time it will degrade and my dura mater will regrow to cover the area of decompression.

The tissues are then closed with stitches and staples are used to close the skin.

After surgery I will spend 24 hours in the intensive care unit at the hospital.  My total stay at the hospital will be 3-5 days.  The length of stay is dependent on how quickly I can get pain management under control and start moving around on my own.  After being released from the hospital we will stay down in Salt Lake City an extra couple of days to allow me to rest more before making the 3-4 hour drive back to Idaho Falls.

Recovery differs from patient to patient.  For the first 4 weeks I cannot lift anything heavier than a gallon of milk.  After that I can add 5 pounds every week.  At that rate it will be early December before I can even attempt to life Kate again.  Coupled with the lifting restrictions are restrictions on housework, cleaning, driving, etc.  I was told to expect to do nothing the first 6 weeks after surgery besides rest and focus on getting well.  After the initial recovery, we will discuss setting up physical therapy to help rebuild the strength and use of my neck.

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Treatment for Chiari

I don’t know if there is a defined “cure” for Chiari.  There is treatment for it, but like other conditions such as multiple sclerosis or fibromyalgia, it’s something you will live with the rest of your life.  Sometimes treatment can halt the progression of symptoms; sometimes treatment can reverse symptoms to allow you to live a normal life;  sometimes treatment is only temporary and symptoms will return years down the road.

Treatment for Chiari malformation depends on the severity and the characteristics of your condition.

In asymptomatic cases, there is no need for medical intervention.  Patients are scheduled for brain MRI’s periodically (typically once a year) and contact their neurosurgeon/neurologist if symptoms appear.

For patients that have tolerable symptoms or wish to hold off on surgical intervention, prognosis is typically pharmaceutical in nature.  Pain medications are used in conjunction with therapy to manage the symptoms.

Surgery is the approach doctors use most often to treat Chiari malformation if symptoms are interfering with the quality of life, if the symptoms are getting worse, or if the nervous system is being compromised. The goal is to stop the progression of changes in the anatomy of the brain and spinal canal, as well as ease or stabilize symptoms. When successful, surgery can reduce pressure on the cerebellum and the spinal cord, and restore the normal flow of spinal fluid.

Obviously I am NOT asymptomatic so simply monitoring the herniation is not an option.  I feel that the symptoms are affecting the quality of my life.  Whether or not the neurosurgeon(s) view(s) my symptoms in the same light remains to be seen.

Ultimately I want to find relief from this.  At least parts of it.  But there is a huge amount of uneasiness and fear about having the back of my head cracked open.

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Chiari Malformation

Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.  When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brain stem can cause neurological signs or symptoms.

Joe-Jane-Chiari

Chiari malformation is diagnosed when the cerebellum herniates 3-5 mm below the cisterna magna (horizontal line “A”); typically the cerebral tonsils are 0-3mm above it.  Point B on the illustration shows where the chiari measurements are taken for diagnosis.  Mine currently measures 8mm.  Solidly past the diagnosis criteria.

shapeimage_2

Headaches, often severe, are the classic symptom of Chiari malformation. They’re typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation also can experience:

  • Neck pain (running down the shoulders at times)
  • Unsteady gait (problems with balance)
  • Poor hand coordination (fine motor skills)
  • Numbness and tingling of the hands and feet
  • Dizziness
  • Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
  • Vision problems (blurred or double vision)
  • Slurred speech

Less often, people with Chiari malformation may experience:

  • Ringing or buzzing in the ears (tinnitus)
  • Poor bladder control
  • Chest pain, in a band-like pattern around the chest
  • Curvature of the spine (scoliosis) related to spinal cord impairment
  • Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep.

Some people with Chiari malformation also develop a condition called syringomyelia, in which a cavity or cyst (syrinx) forms within the spinal column. Although the mechanism connecting Chiari malformation with syringomyelia is unclear, it may be associated with injury or displacement of nerve fibers in the spinal cord. When a cavity forms, it tends to be filled with fluid and can additionally impair the function of the spinal cord.

abnormal_50

Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.  It affects about 1 in every 1,000 people.

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