New Member with many questions

Welcome Greetings and Introductions
1

Hi my name is Barb. I do not have Chiari malformation. I was asked by a friend to try to advocate for her daughter who does have the malformation,but is refusing to accept the diagnosis. I used to work at a school and had her daughter as a student of mine. She and I formed a special bond and I was her favorite teacher. Not bragging,just stating so you understand our relationship . Her mom and I are hoping that her respect for me will help convince her to get treatment before she has more damage. Currently she only suffers from the horrible headaches. She had those headaches in second grade,but was not diagnosed until three years ago at age twenty.

Along with her being close to her, I am a carrier of an infant mortality rare disease. My daughter is a carrier as well. I have lost my son and grandson to that disease,so I have understanding and compassion for those of you who suffer Chiari malformation.

From my internet search I have seen that the best surgeon for this is a Dr.Herzeg (so) at Columbia St. Mary’s hospital. That is very encouraging since we are fortunate to live in Milwaukee,where his clinic is. I will be contacting their clinic as well.

Now for my questions:
1-is Chiari a slow moving progression, or can it show more symptoms quickly.
2- is it possible for her to just have the headaches and not have any progression?
3-Are there are symptoms to watch for prior to actually developing a new progression?
4-I read that there could be a genetic component developing Chiari.
Is it possible to have her 4 year old tested to see if she is affected as well?
5- Does anyone have have a good way to bring the subject up and attempt to convince her that treatment is important?
6- Does the surgery stop the progression? And if so is that permanent ?

Thank you all for allowing me into your group. I am sending prayers and light to all of you. May you be blessed.
Gratefully ,
Barb

2

Hi, Barb! It is always heatwarming to see people like you- researching Chiari to help someone close. :)

From reading posts in this forum, I've learned that many people have been suffering for years with headache(some from childhood, some from their 20-ies), until diagnosed at, say 40. They may not have any other symptoms, or maybe they just don't pay atention to them. Others have had to suffer with many symptoms, going through years of doctors appointments, tests and misdiagnoses. It is thought that we can be born with the condition( or aquire it after a head trauma) and becoming symptomatic with stress. There can also be no apparent cause for Chiari becoming symptomatic.

Chiari is very complicated and very poorly understood. Doctors, even Chiari specialists don't understand how it works. That is why noone can make predictions about the progression overall. I think some predictions can be made only when there already is nerve damage(syringomyelia). That is how I understand it, I'm not a doctor.

Doctors are not sure whether it is genetical. Of this I am sure. There is a documented case of triplets, every one of them having Chiari.

Most likely there is no need for her daughter to be tested, other than for family to have peace in their mind. It is thought that most Chiari patients are asymptomatic. You can ask a specialist, if the child should be tested. If she is not tested, I suggest someone to keep in mind the possibility of Chiari in case she ever develops some symptoms.

Chiari is a structural defect. The whole surgeries purpose is to make more space around the brain for csf regain a normal flow. The surgerie will not fix the defect. It is usually done when the patient is getting worse, if there is a symptomatic syringomyelia(fluid filled cyst in the spinal cord that can cause permanent nerve damage), or Chiari is puting pressure to optic nerves(which can progress to permanent blindness in matter of weeks or months). Again, this is how I understand it, there might be other cases when the surgery is needed that I am not aware of. Generally, most chiarians do not need the surgery(even if they are really bad).

It will be easier to approach her if you have an idea on why she is in a denial. What does she know about Chiari? Is it possible she is too afraid of the unknown? If she is aware of the possible symptoms, she might be afraid of not being able to take care of her daughter later in life.

Or is it because her mother is so concerned? My grandmother reacts very emotionally to even slightly bad news. She expresses great pain and concern, so it's really difficult to talk to her. It is easier to diminish the problem and act as if it's not a big deal.

There can be other reasons.

I have found a great deal of valuable info about Chiari on this youtube channel.

You can approach her by saying you did a researc and ou have good news, then telling her most chiarians don't need surgery, Chiari doesn't mean she is doomed to get worse, and how lucky she is to be diagnosed while she only has headaches. Tell her about most people being misdiagnosed for years while their condition is worsening. Thell her this means she already knows which doctor to see and where to look, in case if she develops new symptoms(like tingling, in arms, legs, numbness- this might mean a syrinx, but in her case it can be treated before she gets nerve damage for life). I consider these upsides such a great news!

Try to figure out the most likely cause of her denial and it will be easier to shape the approach from that.

If she doesn't want to listen, just put a thought in her head. Let her sit on it for a while.

Hope this helps. Sorry if something doesn't make sense, because english isn't my first and my head isn't working well.

Best wishes,

Kristine

3

Kristine, thank you so much for your informative reply. It is difficult to find much information about Chiari on the Internet,but I read what I could find. The same is true for Menkes,the rare disease I lost my son and grandson to. I am so grateful that your administrator allowed me to join your group. I did speak with Sarah yesterday and was able to find out her concerns. They are very legitimate,but together she and I will come up with strategies to surmount them. The boond I made with he when she was young is still very intact and she trusts me. That is a huge help.i told her that I will be with her every time she needs me to be.
She and her mom were not totally clear about what has been recommended as treatment. I think that should be the initial clarification. I told her that we are blessed to have Dr. Herzeg at one of our local hospitals. She stated that she had spoken with him,but didn’t say what he suggested. She said that his PA told her that he was the best surgeon,but Sarah thought she was just exaggerating.
I am fairly sure that Saah is in a position that she will follow up and recontact the dr. Sarah said that she has pain in her trapezoid muscles recently.
I will be reading information on this support group,so that I will become more educated about this condition. Thank you all for your kindness . I’m hoping that Sarah will join soon so she can see how people cope with this horrible disease. Prayers for all. Barb

4

Barb, if Sarah wants to join please ask her to mention in her application that you recommended her (if she can use your screen name that would be helpful) so that I recognise her straight away. We have so many new members applications every day that it can become a bit of a blur for me. Thanks, Jules

5

A huge problem to people with Chiari, as with any invisible or rare illness, is that family members, friends and even doctors don't believe them. Or they think because they had surgery, they are fixed and their complains are not legitamate anymore. It is explained very well in this presentation.

I wish everyone had someone like you and Sarah's mom beside them. :)

6

Jules-thank you for allowing me access to your group. I will definitely tell Sarah to mention that I ever red her,so the connection stays intact . I hope that I am able to be informed enough to be able to be a positive support for her. Thanks, Barb

7

That is exactly what Sarah said happened to her. I witnessed on of her headaches at school and was so concerned about her that I walked her home. I wasn’t sure she was in any condition to safely walk alone. She was accused of being over dramatic or just looking for attention. Amazingly she never had x-rays or an Mir for all those years. Thank you so much for your information . This is very complex and i will need to keep asking questions as we work throng this for her. We are currently looking at maybe seeing if we can get this scheduled at the beginning of summer. That would take care of day care issues. I am also looking into getting SSI for her at least on a temporary basis while she deals with this medical issue. Further, I will be talking to a social worker at the hospital to see if there is some packages of services she would qualify for. She is a single mom who is currently employed,so if I can connect her with services and guarantee her beloved daughter will be ok, I am sure she will be freer to take care of her health. You are an angel on earth. Thank you gratefully, Barb



Fugu said:

A huge problem to people with Chiari, as with any invisible or rare illness, is that family members, friends and even doctors don’t believe them. Or they think because they had surgery, they are fixed and their complains are not legitamate anymore. It is explained very well in this presentation.

I wish everyone had someone like you and Sarah’s mom beside them. :slight_smile:

8

Dear. Fugu, I have already messed up and responded to your last post without moving down to you post,so your reply is posted under Jules post. I tried to copy and paste under you post but was unsuccessful . Sorry. Thanks for the support… Barb