starting to worry

[Ziggy]

Sweet pea was shunted at 10d old, revised at 3 mo old when his baseline CT scan showed asymptomatic hydrocephalus. The neuro did the exam and said he looks great, but then we looked at the images and the problem was obvious. He's scared me a couple of times since then, but both times his head CTs have been clear. Now, however, he's super sensitive to noises and he's been cranky for two days. He's NOT a cranky kid, his other nickname is the world's sweetest baby, because he's just that mellow. But he won't let me be out of his sight at all yesterday or today, and he took almost an hour to calm down fully after I ran the food processor for 30 seconds yesterday morning.

I didn't think to check his head circumference today, I'll do that in the morning. If it's up, I'll call the NS on call.

Why can't he just have an "off" day or two without worrying me???

[Lifeisgood]

Hi Ziggy,
I can only imagine how worried you must be and how hard it must be to see Sweet Pea having an off day. I am praying that tomorrow is a better day for you both and that he is back to his old self. If you do need to call the NS, I pray that they are able to figure things out quickly.

[Ziggy]

well crud. I just measured him in his sleep, and it's up half a centimeter from just over a week ago. I'll check it again in the morning but it looks like I'll be calling tomorrow. I'm glad our ns clinic has an on call doc that can help us avoid the ER, but I really don't want to do this again.

[Ziggy]

Oh good, his head circumference is measuring the same this morning as it was at clinic last week. phew. i'll keep an eye on him today and may call the neuro nurse practitioner in the morning for an opinion.

[Christine1970]

I am not sure how to reply to the person who is concerned about noises and shunts.

This may not be encouraging but also encouraging..if that makes sense?

I am an adult with SB that is also shunted. I have never liked loud noises. Hate thunder, firecrackers and loud noise. My parents say that I have always been like.

Shunt issues were not a problem for me until I was 18 yrs old when I had my first revison from birth (10 days old). It had nothing to do with loud noise..it was because i fell and bumped my head.

I am not sure how this applies..but wanted to just encourage parents out there that those of us with shunts are more senstive to noise. I don't even like the tv loud.

[Ziggy]

Thanks, Christine. He's always been sensitive to lots of big sudden noise, but this is stuff that doesn't usually bother him, like my DH sneezing, or using the nebulizer (not super loud air compressor) or even just getting ice from the dispenser. Even applause today at an awards banquet had him near tears every time.

[nolda]

My daughter is also super sensitive to noises ever since her birth. She is going to be 28 and have found no changes at all in this regard. I also think this has nothing to do with shunt, she is having a shunt too. I have a tough time daily, day and night. In our neighbouring plot a new building is constructed, a commercial one and imagine what might be the noise and in the night she complaints of the street noise (vehicles passing, their honking etc.) She creates white noise to kill these noises. In the night she wakes up to the slightest move of mine on the bed. She does not sleep alone in the room during nights. I really can very well understand your condition. I keep you in my prayers. Prayers have helped me alot.:)

[dahliafaolan]

Now this might be something totally unrelated, but I also have trouble with noise sensitivity, but the noise sensitivity seems to be towards certain specific pitches. For instance, certain high pitches noises will make me feel like someone is driving an ice pick into my ear (which really made me HATE going get my hearing checked!).But I remember the doctor telling my mom that this sort of hearing sensitivity (it has a name, but for the life of me, I can't remember it right now) is common to Spina Bifida. Most of the time the sensitivity isn't bad enough to really bother me. For the most part, the pitches are so specific that I don't encounter them in my daily life. But I do tend to have a bit of anxiety related to the noises. When I was in junior high and high school during the changing of the classes, the noise of everyone talking and walking and the echoes of voices off the halls would set off a bit of claustrophobia and I would have to talk myself down from a panic attack. To this day, I still don't like to be in large crowds because of the noise.

[nolda]

Yesterday Michelle underwent a Spine MRI as well as brain scan. The MRI noise was unimaginably loud. She co-operated so well I coudln't believe it. I thought she must have come out of the anxiety. But no she hasn't. while going to bed she was same as before. Those who have spina bifida they are very sensitive no doubt about it.

[LisaJoy]

Did they not give her ear plugs for the MRI???

[Lifeisgood]

I am glad the MRI is behind her! I hope that the results are available soon.

Actally, it has only been during the past 10 years or so that they have started to give out earplugs for MRI's. I remember ALL of the MRI's that I had as a kid being earplug free. Including my very first one that lasted 2 and a half hours! (I made them stop because I had to go potty. They were gonna keep me in there another 20 - 30 minutes but I told em...Uh uh! I gotta go!)

[NerdaliciouS]

Would've never guessed people got given earplugs... I never did, lol.
Good thing it's over, though! :)

[LisaJoy]

That really surprises me -- it is loud enough to cause hearing damage!

[dahliafaolan]

That's rather odd. At my old hospital they had figured out a way for you to listen to music while it was going on.

[LisaJoy]

Perhaps we are not all talking about the same MRI machine -- I'm sure there are variations among brands and types of machines.

[leigh828]

I'm really glad to have found this thread about noises. My son, 9 months old, HATES certain sounds. If I turn the faucet on to run his bath water, crumpling newspaper, plastic shopping bags...hmmmmm...so do you think this is because of the shunt? Or just an SB thing?

[Lifeisgood]

Perhaps we are not all talking about the same MRI machine -- I'm sure there are variations among brands and types of machines.

Oh trust me, it was quite loud! These days I get earplugs though. I wish my hospital would get the machines where you could play music though. I would be a happy girl. :peace:

[dahliafaolan]

I'm really glad to have found this thread about noises. My son, 9 months old, HATES certain sounds. If I turn the faucet on to run his bath water, crumpling newspaper, plastic shopping bags...hmmmmm...so do you think this is because of the shunt? Or just an SB thing?I think it's just a SB thing because I don't have a shunt.

[nolda]

Did they not give her ear plugs for the MRI???

They did give her but not to me, as I was there with her all the through the test. It took an hour or so.

[nolda]

I asked the neurosurgeon about the noise sensitivity. He told me that he doesn't believe in, spina bifida having anything to do with sensitivity. It is totally unrelated. Michelle's MRI says she has a tethered cord, some fluid has accumulated near the surgery place he named but I don't get it exactly (Hydro... not Hydrocephalus) and also fat accumulated over there. Chiari II malformation, and a neurogenic bladder. We could see the large blader. The neurosurgeon has told us he will discuss with radiologist and will find the irritating nerve which gives her pain.

[Gymp]

Hi....
Here's a whole thread on noise and sleep,found here...

http://spinabifidaconnection.com/showthread.php?t=1306&highlight=loud+noise

On the noise coming from an MRI machine.It's all dependent on the type of scan you're getting (frequency/resonating factor) and how the imager is constructed,thick walled or thin walled.
Read more here...

http://www.mrisafety.com/safety_article.asp?subject=180

I myself can't get an MRI because of way too much metal in me which causes an unclear/blurred image.The broken harrington rod in my back is loose as well so it's kinda considered as shrapnel and could be pulled out during an MRI scan.

Happy scanning :-)
Gymp

[Lifeisgood]

Interesting article about the MRI Gymp!