The Plan for March

My neuro has a new partner in his practice, and he is baffled as to why I am still having daily pain even though I have the shunt. The shunt was supposed to "make it all better".

So the immediate plan is to check my intracranial pressure via a lumbar puncture. Followed by an x-ray to check the setting on the shunt, since it's been 18 months since the last time it was adjusted. It's possible it has been somehow slightly tweaked out of the setting it needs to be set to.

Based on the findings of those two tests, we will possibly adjust the setting of the shunt. That could lead to a greater can of worms.....the easy part would be externally adjusting it with a mouse-like device that works like a magnet, very non-invasive. However, the surgeon's assistant discovered my shunt was not properly sutured into place so it floats around a bit, making it hard to adjust, and it might require surgury to adjust and suture down. They have avoiding this corrective surgery because I was previously considered a high risk for surgery, but I now think I'm in better health so maybe they'll go for it this time.

But, working in my favor this time around is I have lost some weight (as the neurosurgeon suggested) and the shunt is easier to feel through my skin. Maybe the external manipulation will be easier for them and the surgery will be unnecessary.

Regardless, I am first facing the lumbar puncture under fluroscopy guidance (so they don't nick the shunt or the tubing) sometime during March to check intracranial pressure, then the easy-peasy x-ray to check the numeric setting of the actual shunt. Maybe these two tests will lend answers to the head pain. If it's something as easy as a new setting on the shunt, I'm all for it.

Thinking of you Lynelle as you embark on your March plan. Sometimes just having a plan brings some sense of encouragement. Congrats on getting some weight off...that's always a great boost, for any of us!

Take Care.

Congratulations on losing weight, Lynelle

Hopefully they will find something to "tweak" so your shunt can help you more.

Cheryl

Wow Lynele-

I did not realize that you also were an IH sufferer. How do you feel about the surgery overall? Did it help, or did things stay the same? Do you wish you never did it, or are you glad that you did?

My daughter is not responding to the drugs that she has been Rx for her IH. She has been miserable for a year. I know that the surgery has risks and about a 50% effective ratio. I really would like to get feedback form others that have had it done.

What meds has Crystal tried specifically for IH? What are the neuro's thoughts?

One piece of advice--if you do a shunt, TRY and find a neurosurgeon who actually LIKES doing shunts. We have learned the hard way (personal experience and via the stories of others) that some nsgs don't like shunts at all, and they don't have the patience to fine tune a shunt(s).

Cheryl

I made the right decision to get the shunt. It is the LP shunt. The part I never should have messed with was getting a pressure measuing device inserted into my skull. It was removed within a week due to bleeding complications.

I knew there was the possibility that I would still suffer headaches even with the shunt, but the severity is much less. The frequency is the same (nearly constant).

My surgeon is pro-shunt. He is a pediatric neurosurgeon but also takes on adults. He travels the country giving lectures about IH and has published many studies.

I also take 300mg Topamax daily.

I started out being set at 100 on the shunt. A few months later I was adjusted to 150. I have a feeling I need to be adjusted back to 100.

Hi Lynelle,
you have a full month, I will keep my fingers crossed for you!
Bye

Crystal did not respond to Diamox and she has just increased Topamax to 100mg and has not responded to that either.

She is getting jaded by some of the people that she is talking to on the facebook IH site. I need her to have some positive experiences to at least try a surgery if that is recomended.

Any suggestions of nsgs in the Chicago area would be wonderful!!

Crystal may need to get a series of LP's or have ICP monitoring before a neurosurgeon would consider a shunt.

Some neurosurgeons will not shunt unless the person has pappiledema.

I can't recommend anyone in Chicago.

You might find recommendations on IH forums.

The whole shunt thing can be fraught with disappointment and failure.

One of our Chiari/PTC friends just went through eight shunt surgeries in eight weeks, and she is no better. She is being discharged from the hospital today...I can't even tell you how I feel about that. But her nsg gave it a valiant effort! Simply valiant. So very unbelievably complicated.

Cheryl

That poor thing! I hope her spirit isn't broken.

I just don't know what to do any more. She is starting high school next year and I want her to get to experience the good, the bad, and the ugly. She needs to date and fight and go to dances and hang out and do so many things that we have all taken for granted.

I give you all of the credit in the world. I have been feeling so defeated lately. I don't know how you have the strength that you have.

I think of poor Anna not being able to get up and it makes me so sad. Please give her a hug from us. When are you going to see Dr W again?

They are at Ronald McDonald House, and mom said Holly has been crying all day. Sooo heartbreaking. I think she has had 30 plus surgeries.

At least Anna had 17 great years before getting sick. Some Chiari kids didn't get that. They were sick from day one.

We are actually going to see a new neuro in Minneapolis on Tuesday. I just need some "quick" advice and assurance, I guess. I know he will be overwhelmed. I took my mother-in-law to see him for dementia seven years ago. He was nice enough to listen to the one minute version of Anna's story--long before she was diagnosed with all the Chiari/PTC crappo.

He said he would never take her case (back then)! Too complicated. Wait till he hears it now.

But he was nice, and I just want to ask him about what (if anything) is available in the Twin Cities. Infusions, blood patches, whatever might be out there.

I haven't forgotten about Dr. W though. He was so great. And you have good access to him.

Hugs to you, Mom. I know it is not easy doing this as a single parent. I have a great hubby who is willing to take us all over the country. It's just getting tougher to do it as we get older! We want real vacations, not this medical travel stuff!

Cheryl

Thanks for the hugs, and right back at ya.

Dr W wants to look at every detila of the labs from Crystal's hospital stay in June. He wants to make sure that there is nothing else that is being missed.

At our next appointment with him he would like to schedule an LP and every kind of lab immaginable because he thinks ther is a chance that we might be missing something else.

He explained why Crystal has been feeling faint in the shower and short of breath and it is due to medication that was Rx by the headache specialist. He never told us how low her BP would drop when she was on it and that this could be a side affect.

Tomorrow we meet with the headache specialist in Chicago.

Dr W is so wonderful and never makes us feel rushed. You can tell he really works for the patient. I was getting choked up in the office. This is just so overwhelming. Crystal basicly just had a blank stare the whole time.

I miss her smile.

Hopefully she will smile again soon!

I'm just curious about her seeing the headache specialist in Chicago. What will that be for?

I'm glad you are so comforted by Dr. W.

Cheryl

That was the doctor that we had been seeing since June at the Diamond Headache Clinic. He and Dr Wilken are pretty much on the same page with treatment ideas.

I figure that it is better to have more doctors working on her behalf.

This is just a follow up appointment.

Got i!

Cheryl