Appointment Yesterday

We took Anna to a new neurosurgeon yesterday in Wisconsin at UW-Madison. It was a productive appointment. He was very understanding of how difficult it is in Anna's case.

He asked Anna to try two non-invasive and inexpensive things before we see him again in a month.

The first would be to wear a cervical brace/collar 24/7 for one to two weeks. She was fitted for the brace at the hospital, and she'll start wearing it today. If she feels better wearing it, she may have some cervical instability. Many Chiarians have a condition called Ehlers Danlos Syndrome which is a connective tissue disorder. It has never been apparent that Anna has this condition, but wearing the brace may make her feel better, and it is worth a try.

The second thing will be more difficult. He wants Anna to lay in bed for two weeks. Not getting up for anything! She can lay on a flat pillow and move from side to side. He would like the head of Anna's bed lower than the foot of her bed. But eating in bed and doing everything else in bed...yikes...she is not so sure how this will go...

But he is considering the possibility she has a CSF leak, and this MAY make her feel better. He said if she gets up at all, then she has to start all over again. Laying flat for such a long period of time may make her head pain less. And that could be a clue.

He mentioned doing a myelogram in the future, looking for leaks.

The next time we see him she will have a new MRI she has never had before--a cervical flexion and extension MRI.

He doesn't think her Chiari is so much of an issue because she told him the ice pick HA's in the back of her head improved after her second decompression surgery. So he is thinking "leaking." So am I. I have been thinking that for a long time.

So I posted some articles about CSF leaks, in case anyone is interested in learning more.

I am on a private CSF leak forum where I learn soooo very much. It is a small group of people who post there, but there are two physicians, one nurse practitioner, a nurse, and two pharmacists who are leakers and who so willingly share their knowledge and experience there with the rest of us non-medical people. They and others go to the cutting edge leak doctors (only a few of those in the U.S.).

Very grateful for yesterday's appointment--that this neurosurgeon would even see Anna to begin with and that he started formulating a plan.

Cheryl

you found a doctor who listens, who cares, and who has a plan. i'm so glad for all of you. it's a very interesting plan, and your ronda's friends are all praying and pulling for you, waiting and hoping. love, dianne

I hope it works. Lying in bed for two weeks will be difficult but if it brings some answers, what a blessing that would be!

Alli

Read your Caring Bridge update this morning and was so happy to know you had a Dr. that was listening and willing. So thankful for that.

Being in bed flat for all things will be difficult, but it can be done. My 4 mos of that was on my side, but it is a struggle. I will pray that Anna will be able to give this a true attempt to see what can be learned from it. She's endured so many tests/sugeries....I'd tell her, this test will be a breeze!

Continuous Love and Support my Friend.

Thank you...we are open to helpful hints

She is going to ask her G.P. to cath her for this.

She spends most of her life in bed, but this will be a bit different with no getting out of bed for anything! Yikes again

Cheryl

hi i will be thinking of you and anna, hoping you get a positive result from the 2 weeks in bed, especially with her pillow being lower than her feet, not the most comfy of positons to be in,

i am sure you are an expert by now, so i dont mean to lecture but be careful of pressure sores, they are a nasty thing, once they get going,

all the best x

Anna started wearing the hard cervical collar today, and it is pretty much an instrument of torture. I don't think she can stand this very long. May not even last 24 hours.

Cheryl

Oh...I feel for her and hope that this will give her some relief. It sounds extreme but then so does surgery. It sounds like you have a good doctor though...one who is willing to try something simple and see if it helps before doing something more radical. From my experience with the UW doctors, most are willing to try the simple first and "do no harm" if they can help it. Will keep both of you in my thoughts and prayers.

Becky

Lying down for that long would be so hard! I hope she is doing okay....must be so hard on you too Cheryl. Thinking of you all.

She hasn't started the laying down part yet. We are just trying to deal with this collar. Sent an email to the nsg's nurse practitioner. The cervical collar stretches her neck, pulls her head up, and hits up against her surgery scars in the back of her head. None of which feels good or normal.

Cheryl

Wow, I hope that they can adjust that before the lying -down starts... it shouldn't be pressing against scar area, IMHO...

I have been wondering how it was going... how about lots of music, or audio books?

Please keep us posted, dear Cheryl...
Holly

Wow Cheryl...The possibilty of a CFS leak would scare me so. I had a CFS leak 10-14 days after surgery....Fortunately, the surgery scar was so new that we became aware of it because it was literally leaking out of the surgery site and down my back. We were luckily headed for a post-op appointment and the nuero's assistant put a cup below the scar and collected it! My Mom was FLIPPIN' out! They went in and i guess "tidied" up and it stopped.

I am praying for Anna. I feel so for her, considering she is my age and has been struggling for so long in such unbelievable pain. I pray that God brings her healing, her doctors understanding, and her family comfort as you continue to deal with her condition.

I was talking to my Mom about Anna actually, and she put you and Anna on her prayer list. I think she identifies more with you, in the helplessness that you feel in not being able to help her....I can't imagine the helplessness she felt and you feel in being a parent and watching your child hurt. You, other mothers dealing with children with illnesses and my Mom...are the some of the STRONGEST women I know.

God Bless you and ANNA!

Laci

I hope this works for Anna. I can't imagine how tough laying flat for two weeks would be. My thoughts are with you both.

My cousin's daughter had Ehlers-Danlos pretty badly. She is often in a wheelchair. My mum sees her on days that she is out of the chair and looking normal and makes all sorts of judgements eg that my cousin must have Munchaussens by proxy as there was nothing wrong with her and she was dancing at my wedding. Makes me so angry! I was dancing at my wedding but felt horrendous and was vomitting every hour, and all our guests were saying how good it was I 'didn't have a migraine for the wedding'. People know so little. You'd think my mum would know better, but she really doesn't get it. I'm glad Anna has you.

Amy

Cheryl, That does sound like torture! I had to wear a cervical collar for a long time when I was in my twenties, after a car accident. It was miserable. The laying flat in bed would be so hard. Anna is a brave woman to try all these things that she knows will be painful. I wish her the best and that she gets some improvement.
Hugs,
Cindy

It was a rigid cervical collar that she was fitted for. I wish it would have helped.

Day three of bed rest now. Not fun for either of us. I wish she felt better doing it. Yesterday was better than today (brain pain wise).

I totally get where he is coming from, and I totally agree it is worth trying.

She gets a medal when it's all over.

Thanks for the empathy

Cheryl

Yes, a medal is definitely in order!

Or a crown!! Fits better since it sits atop the head, I figure..hehe

Hope this works, I'm crossing fingers and toes.

Fingers crossed for both of you. You both get a Medal when it is over.

Mary Anne

This morning was interesting

Anna's home health nurse came for her weekly visit. She was just marveling how awake Anna was and talkative also. Usually Anna is out like a light and can barely talk in the morning. But this morning she was totally "with it."

Anna told her, over all, her pain has been better since starting bed rest.

She woke up in zero pain this morning.

But with Valsalva movements, her head pain gets bad. That is guaranteed. And you have to do Valsalva, when you do everything in your bed! Her doctor did not want to cath her...

My heart leaped when I heard Anna say she has noticed somewhat of an improvement.

We have to try and keep this up until a week from Sunday.

This whole experiment is to help sort out the possibility she has a spinal fluid leak somewhere. Laying flat could help the leak, if there is a leak. Bed rest is the number one treatment for CSF leaking. Hard as it is to do.

Cheryl

Wow. that's positive! I'm so pleased Everything is crossed for it to continue.

Amy

On day seven of complete bed rest with Anna's head being lower than her legs/feet.

Wednesday was so amazing when she forgot to take her pain medication for most of the day. The reason being, she didn't need it!

She went hours without head pain.

Having Anna on bed rest (to this degree) is suggesting to us that her head pain is at least, partially orthostatic.

She has been asked about orthostatic head pain by so many doctors. Her answer was always vague because she truly didn't know.

Laying in bed her normal way...which is with her head elevated due to acid reflux...is different than laying this way!

"Hanging like a bat", LOL, is proving to be beneficial. When she lifts up her head at all, the terrible pain comes back. Laying like she is helps it lessen or completely resolve.

It isn't perfect though, and it isn't a cure, but maybe it is a clue pointing to CSF leaking.

One more week to go.

I'm very realistic about the difficulty in diagnosing and treating CSF leaks, having read leak forums for the past 18 months or so. It can be terribly frustrating, even more than what she has already been through. So few doctors who have extensive experience in treating CSF leaks. A handful, maybe.

The neurosurgeon we saw earlier this month sent a three page report. I was amazed how closely he listened to Anna's story, the three of us telling it. He nailed it, in his report. In his words, "a long and complicated history." Kudos for him.

Wish us luck for the second week of this

It is hard, but Anna is a trooper.

Cheryl

Wow! That sounds so positive! I hope that this is the answer.

It does definitely sound as though you both deserve medals. It must be so difficult for her, but your daughter seems to be dealing with it really well. And it sounds so positive

Good luck next week.

Liz

That is so wonderful. I hope this helps in solving the mystery...sounds like it's a solution for short term relief. Can't imagine "hanging like a bat" is a practical every day solution but if it helps. Best wishes for the upcoming week.

Amazing! How Anna must need a break from the unrelenting pain. We will keep up the prayers for both of you. How is your DIL doing?
Hugs,
Cindy