My Daughter's Health - Update

Hmmmmm...it seems we ALL have such a "tonsil".

I wonder if this:

http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html



is what your daughter has?




http://www.emedicine.com/radio/topic149.htm




http://www.co-cure.org/chiari.htm






I wish you both well in getting it fixed!!!

Edgar, you and your daughter will be in my thoughts. Please keep us posted.

I like your new avatar, Diane!

I can't make heads or tails of this -- if it's serious, if it's not, nothin' -- hope it's un-serious and fixable. Thanks for the update though, have been thinking about her and hoping all is well.

Here is the condition Jean was diagnosed with:



Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain.

Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida. The scale of severity is rates I - IV, with IV being the most severe.


Cause
The cerebellar tonsils are elongated and pushed down through the opening of the base of the skull (see foramen magnum), blocking the flow of cerebrospinal fluid (CSF).

The brainstem, cranial nerves, and the lower portion of the cerebellum may be stretched or compressed.

Therefore, any of the functions controlled by these areas may be affected. The blockage of CSF flow may also cause a syrinx to form (syringomyelia).


Presentation
In infants, the most common symptoms are stridor and swallowing difficulties. In older children, upper limb weakness and breathing difficulties may occur. Patients may experience no symptoms or remain asymptomatic until early adulthood, at which point they will often experience severe headaches and neck pain. Fatigue, dizziness, vertigo, neuropathic pain, visual disturbances, difficulty swallowing, ringing in the ears, sleep apnea, impaired fine motor skills, muscle weakness, and palpitations are other common symptoms. Because of the complex combination of symptoms and the lack of experience with ACM1 had by many, even outstanding neurologists and neurosurgeons, many patients are frequently misdiagnosed.

Some patients may go an entire lifetime without having noticeable symptoms. Or, symptoms can be minimal, then turn severe suddenly due to head trauma which alters the condition of the spine, brain, or cerebellar tonsils and begins to cause more difficulties.


Treatment
Once these "onset of symptoms" occurs, the most frequent treatment is decompression surgery, in which a neurosurgeon seeks to open the base of the skull and through various methods unrestrict CSF flow to the spine.


History
An Austrian pathologist, Hans Chiari, first described these hindbrain malformations in the 1890s. A colleague of Professor Chiari, Dr. Julius Arnold, later contributed to the definition of the condition, and students of Dr. Arnold suggested the term "Arnold-Chiari malformation" to henceforth refer to the condition.[1]

Oh, dear.

Well, I guess knowing what is happening is a step; my thoughts are with you all.

Edgar--

Diagnosis news can be negative--or it can be a start to a cure.

Does she have a good surgeon lined up?

Hold your dominion.

Finally, after all this time!

I know it's scarey, but I'm with Noddy. A diagnosis is a good thing. Now energy and focus can be placed on fixing it. Medicine has come so far. I'm pulling for all of you. Thanks for the update.

She says in her above quoted email:
I am going to schedule an appt. with a neurosurgeon, that is in the medical center, so that I can get some more information on this, and see what he recommends -

So, for starters she is gathering information.

I tend to agree (with Noddy). It's not happy news, but at least action can now be taken to remedy the problem.

After 30 years, we have got what appears to be an accurate diagnosis. Far from being filled with trepidation, I am grateful and encouraged.

I'm glad the journey to health is beginning, you're in the early stages but you need to take these first steps, too.

It must be such a huge relief to finally know, edgar.
Here's hoping all goes well from here on.

Wishing you and your daughter the best, Edgar.

You and your daughter are in the thoughts of all of us, edgar. That may not help your daughter, but I hope it's some comfort to you.

I appreciate the words of support. Now that she is an adult, with her own family, mine has become mostly a support role. I offer what advice I can, but, she knows more about medical matters than I. So far, I haven't located statistics on success rates for the surgery.

Joining the rest in sending warm thoughts to you and your daughter, edgar. The surgery sounds daunting, but it's good to have a path and a plan after all this time.

Yesterday, my daughter was advised that the only way to correct her condition would be surgery. The neurosurgeon cautioned that the after effects of it could make her life far worse than it is now, that there is no way of advance knowing. He advised that, since she is now 33 years old, the problem will almost certainly remain static. He advised her to avoid the surgery, if she is able to live well enough as she is now, and to only consider it in the future if it becomes intolerable. So, no further action for the forseeable future. He gave her something that will control the dizziness, and she now plans to follow that advice.

Edgar--

Sorry there isn't a simple cure, but under the circumstances "static" is an excellent alternative.

I'd expect that she's disappointed, edgar, but it sounds like she's made the right decision given the advice she's received. Static is a vastly superior prospect to a continual worsening of her condition, though. The best of luck to her!