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Oh, Tess. I hope nothing is found wrong!! Unfortunately, adhesions

are very common with any kind of surgery, especially abdominal

surgeries. I have issues with them as well. Good luck with the CT

and I hope everything is ok......Marina

> Hi...I've had some problems lately with acid reflux and nausea, plus

an

> inabiliy to eat very much food. My surgeon is concerned things

might be

> " kinking " up from adhesions. He has ordered a CT scan with contrast.

> Hopefully it will turn out to be nothing...I sure DO NOT want another

> surgery. Prayers would be appreciated.

>

> Much love.....

>

> Tess

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Oodles of prayers being said for you Tess. Hopefully it isn't anything

that will require more surgery.

Is the swelling in your scalp gone? You've been having some really bad

days lately.

(((((((hugs)))))))

a

On May 3, 2005, at 6:36 PM, Grammi_Love@... wrote:

> Hi...I've had some problems lately with acid reflux and nausea, plus an

> inabiliy to eat very much food.  My surgeon is concerned things might

> be

> " kinking " up from adhesions.  He has ordered a CT scan with contrast.

> Hopefully it will turn out to be nothing...I sure DO NOT want another

> surgery.  Prayers would be appreciated.

>

> Much love.....

>

> Tess

>

>

>

>

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Tess:

Please know that my thoughts and prayers are with you

that everything with turn out just fine with your

CT........

Let us know how it goes.

Gentle Hugs,

Pat (your southern neighbor)

--- marina_troi <marina_troi@...> wrote:

> Oh, Tess. I hope nothing is found wrong!!

> Unfortunately, adhesions

> are very common with any kind of surgery, especially

> abdominal

> surgeries. I have issues with them as well. Good

> luck with the CT

> and I hope everything is ok......Marina

>

>

>

> > Hi...I've had some problems lately with acid

> reflux and nausea, plus

> an

> > inabiliy to eat very much food. My surgeon is

> concerned things

> might be

> > " kinking " up from adhesions. He has ordered a CT

> scan with contrast.

> > Hopefully it will turn out to be nothing...I sure

> DO NOT want another

> > surgery. Prayers would be appreciated.

> >

> > Much love.....

> >

> > Tess

>

>

>

__________________________________________________

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Dear Tess,

You are in my thoughts and prayers.

Love and Hugs,

Joan

>

> >

> > > Hi...I've had some problems lately with acid

> > reflux and nausea, plus

> > an

> > > inabiliy to eat very much food. My surgeon is

> > concerned things

> > might be

> > > " kinking " up from adhesions. He has ordered a CT

> > scan with contrast.

> > > Hopefully it will turn out to be nothing...I sure

> > DO NOT want another

> > > surgery. Prayers would be appreciated.

> > >

> > > Much love.....

> > >

> > > Tess

> >

> >

> >

>

> __________________________________________________

>

> ------------------------------------------------------------------------

>

> *

>

>

>

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Dearest Tess,

I am so sorry that you are having this problem now and I will

definetely pray that the doctors will find an answer for this that

will not encompass any more surgeries for you. Hopefully, it is just

something simple that a few days of a new medication will cure.

You are in my prayers always and I know better days are coming for all

of us.

God bless,

Althea

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Prayers would be appreciated.

>

> Much love.....

>

> Tess

You are my inspiration, Tess!! I always look forward to your posts. My

prayers and thoughts are with you, God Bless, Colleen

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You are all so dear and a blessing in my life. Thank you. I have my

scan today at noon. I was just thinking that a year + ago it was

difficult to do some of those tests as my weight made it both

uncomfortable and in some cases impossible (because of size and weght

limits), That is not an issue now!

My surgeon has me coming in Monday to go over things with him.

Much love...

Tess

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  • 2 years later...
Guest guest

I finished Chemo almost three years ago. I am working with a naturopath and

also my oncologist. I have been clear for almost four years now and eat totally

organic. I feel great.

thanks for the input, I am going to forgo the CT Scan.

Al

UNT1971@... wrote: Hi Al,

Of course you need to do what you think you should do....but....only

recently I read that CT scans now are known to actually " cause " cancer. Are

you

currently undergoing chemo? Are you doing alternative therapy?

My DH is working with a macrobiotic counselor for his prostate cancer. He

and a friend who also has prostate cancer and is also on this diet were

advised by their urologists to have a CT scan. Their counselors have shared

that

even doing a CT scan would set them back a good six months because of the

radiation. They both opted to not do CT but go with results of blood work.

What would be the benefit of a CT scan? I am scared of this radiation. I for

one have never had a mammogram. I was a flight attendant for 15 years. With

jets that fly at the altitudes of 35,000 ft and above a person is subjected

to exposure of radiation that is equal to a full set of chest X-rays for each

flight that is cross country. I for one have had enough radiation to last

more than a life time.

I hope you are well and feeling cancer free!

Sincerely,

In a message dated 4/30/2008 2:50:33 P.M. Central Daylight Time,

albertrhurt@... writes:

Hi everyone,

Greetings from Spokane Washington. I am coming up on my four year

exam and the Oncologist wants another CT Scan and blood test. I am

not concerned with the blood test. The CT scan is of concern because

of the amount of radiation and chemicals injected for the screen.

I have had at least 16 CT scans in the last four years and am

concerned about the radiation. Anyone have any thoughts before I get

the scan???

Thanks

Al

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

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Al,

I'm glad you are doing well.

ar

On Thu, 1 May 2008 13:04:13 -0700 (PDT), " Al Hurt "

<albertrhurt@...> said:

> I finished Chemo almost three years ago. I am working with a naturopath

> and also my oncologist. I have been clear for almost four years now and

> eat totally organic. I feel great.

>

> thanks for the input, I am going to forgo the CT Scan.

>

> Al

--

Arlyn Grant

arlynsg@...

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I would suggest you ask your oncologist if he/she even knows how

much radiation there is in a CT scan. Most Dr's don't know, and even

less people know how much rad. they are being sujected to. It's a

massive amount.

I just wanted to forwarn you and everyone else about the amount of

radiation in a CT scan. It's over 100 times the amount of a chest x-

ray...

http://www.radiologytoday.net/archive/rt_071904p22.shtml

.

--------------------------------------------------------------------

>

> Hi everyone,

>

> Greetings from Spokane Washington. I am coming up on my four year

> exam and the Oncologist wants another CT Scan and blood test. I am

> not concerned with the blood test. The CT scan is of concern

because

> of the amount of radiation and chemicals injected for the screen.

>

> I have had at least 16 CT scans in the last four years and am

> concerned about the radiation. Anyone have any thoughts before I

get

> the scan???

>

> Thanks

>

> Al

>

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I received a leaflet from the NHS shortly before my first CT scan

informing me that you receive approximately 4 years worth of radiation

in 20 mins. if that's any help.The real bummer is you don't even come

away with a sun tan!

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  • 11 months later...
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My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is

now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they

asked me about Justices scan because they say that they THINK the soft spots on

his head have prematurely fused together. I said he never had a scan in which he

never did, the CT replies that all kids have to have a scan before the helmet

and that someone along the way messed up and they are thinking that it isnt

plagio at all, it could be water on the brain or craniophephly(sp?)They were

shocked of no scan ever being done. Anyways I leave and next thing I know we

were getting the calls from neorosciences about a scan and needing it ASAP. So

my question is...Did everyone elses little ones have a scan before the helmet?

Also now I feel we are messing up and I dont want to continue the helmet process

until some one can say for sure what is up. They also said that a doctor cant

physically look at a little ones head and automatically say its plagio because

it could be several other things...Im confused and to be honest im scared for my

son. any help suggestions or anything would be appreciated.

Thanks,

, mom to Justice 6.5 months is second Starband

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I'm a little confused when you refer to CT in your post, you don't mean Cranial

Technologies, right? Because they do not make the STARBand. But I'm assuming

that you are referring to whichever ortho or helmet provider you are seeing for

helmet treatment....

In any case, to answer your questions, not every child gets a CT scan before

receiving helmet treatment, though many do because their doctors are overly

cautious. Our ped was one of those, she couldn't say for certain that it wasn't

craniosynostosis (premature fusing of the skull sutures) and she said x-rays

often don't show it, so instead of exposing my son to radiation twice (once for

x-rays that wouldn't do much good, and then again for a CT scan to get a clearer

picture), she just referred us to a neurosurgeon right away and a CT scan was

ordered. Thankfully, it wasn't cranio, just plagio.

It sounds like your helmet provider might have a protocol that entails a CT scan

must be done, though it is not the norm at every ortho location. Also, I believe

sometimes insurance requires a CT scan (but I could be wrong there). I know

craniosynostosis is premature fusing of the skull sutures, but what you describe

sounds more like a premature fusing of the fontenel (sp?), the large soft spot

in the center of the head where the suture lines meet. I'm not familiar with

that issue, but it sounds like if they have any concern at all, you should get

the CT scan done, just to be sure. It definitely would not be good to treat it

as plagio if it wasn't. Do you notice any changes to his head for the worse?

What led them to believe there was an issue with premature fusing? Has the scan

been scheduled? I would maybe leave the helmet off for now until you know

anything for sure. However, we had a CT scan and then had to wait a month to see

a neurosurgeon who finally told us the results of the scan (though I suspect if

there had been a serious issue, we may have heard from him sooner).

I hope it isn't anything serious. Please keep us posted.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is

now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they

asked me about Justices scan because they say that they THINK the soft spots on

his head have prematurely fused together. I said he never had a scan in which he

never did, the CT replies that all kids have to have a scan before the helmet

and that someone along the way messed up and they are thinking that it isnt

plagio at all, it could be water on the brain or craniophephly(sp?)They were

shocked of no scan ever being done. Anyways I leave and next thing I know we

were getting the calls from neorosciences about a scan and needing it ASAP. So

my question is...Did everyone elses little ones have a scan before the helmet?

Also now I feel we are messing up and I dont want to continue the helmet process

until some one can say for sure what is up. They also said that a doctor cant

physically look at a little ones head and automatically say its plagio because

it could be several other things...Im confused and to be honest im scared for my

son. any help suggestions or anything would be appreciated.

>

> Thanks,

>

> , mom to Justice 6.5 months is second Starband

>

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We did not have a scan to see if his head had prematurely fused together. My son has tort though, so maybe they figured that was the cause of the plagio. I know that it is very rare, so hopefully it is not the case with your son.

From: cobb6family <cobb6family@...>Subject: CT ScanPlagiocephaly Date: Tuesday, April 14, 2009, 12:40 AM

My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they asked me about Justices scan because they say that they THINK the soft spots on his head have prematurely fused together. I said he never had a scan in which he never did, the CT replies that all kids have to have a scan before the helmet and that someone along the way messed up and they are thinking that it isnt plagio at all, it could be water on the brain or craniophephly( sp?)They were shocked of no scan ever being done. Anyways I leave and next thing I know we were getting the calls from neorosciences about a scan and needing it ASAP. So my question is...Did everyone elses little ones have a scan before the helmet? Also now I feel we are messing up and I dont want to continue the helmet process until some one can say for sure what is up. They also said that a doctor cant physically look at a

little ones head and automatically say its plagio because it could be several other things...Im confused and to be honest im scared for my son. any help suggestions or anything would be appreciated. Thanks,, mom to Justice 6.5 months is second Starband

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Wedid not have any type of scans before my daughter was banded. That was back in 2002. She is now 7. Our specialist said he ordered scans sometimes when he wasn't positive it was plagio. But having said that I know many members dr's have ordered scans.

Please keep us posted on what you find out.

Angie

CT Scan

My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they asked me about Justices scan because they say that they THINK the soft spots on his head have prematurely fused together. I said he never had a scan in which he never did, the CT replies that all kids have to have a scan before the helmet and that someone along the way messed up and they are thinking that it isnt plagio at all, it could be water on the brain or craniophephly(sp?)They were shocked of no scan ever being done. Anyways I leave and next thing I know we were getting the calls from neorosciences about a scan and needing it ASAP. So my question is...Did everyone elses little ones have a scan before the helmet? Also now I feel we are messing up and I dont want to continue the helmet process until some one can say for sure what is up. They also said that a doctor cant physically look at a little ones head and automatically say its plagio because it could be several other things...Im confused and to be honest im scared for my son. any help suggestions or anything would be appreciated. Thanks,, mom to Justice 6.5 months is second Starband

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I'm so sorry they are putting you through this scare, and hopefully it's all for nothing.We were referred to a crainofacial plastic surgeon.  Our daughter had a bump on her head they suspected was a dermoid along with the plagio and severe tort.  We had an x-ray study done when she was two months old that confirmed what Dr. Rozelle thought.  She saw no signs that pointed to more serious issues.  The tort was completely muscular, the bump presented as a dermoid tumor, and there was no evidence of premature fusion.  We never had a CT scan done and went into the first helmet at four months old.  She had her surgery at 6 months to remove the tumor and help resolve the tort.

Not that there are any words of comfort for you right now, but Elly's surgeon deals with many cases of various premature fusings.  If that is the case (which would be rare) there are many children I see when we go to her office that have been treated for it successfully.  They are happy healthy toddlers and you'd never realize they had such a condition in the past.  Hang in there until you have more information.  Don't be afraid to ask questions of your medical team and demand answers.  I hope it's just a typical " CYA " move on their part.

 

Elaine (twin A), plagio & tort, 10 1/2 mos, 2nd helmet 1/5/09

MI

On Mon, Apr 13, 2009 at 8:40 PM, cobb6family <cobb6family@...> wrote:

My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they asked me about Justices scan because they say that they THINK the soft spots on his head have prematurely fused together. I said he never had a scan in which he never did, the CT replies that all kids have to have a scan before the helmet and that someone along the way messed up and they are thinking that it isnt plagio at all, it could be water on the brain or craniophephly(sp?)They were shocked of no scan ever being done. Anyways I leave and next thing I know we were getting the calls from neorosciences about a scan and needing it ASAP. So my question is...Did everyone elses little ones have a scan before the helmet? Also now I feel we are messing up and I dont want to continue the helmet process until some one can say for sure what is up. They also said that a doctor cant physically look at a little ones head and automatically say its plagio because it could be several other things...Im confused and to be honest im scared for my son. any help suggestions or anything would be appreciated.

Thanks,

, mom to Justice 6.5 months is second Starband

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Wow, I know this is scary. My son had a CT scan for craniosynistosis as well,

but that was because he was born with an asymetrical head shape. I was really

scared, until I found this cranial clinic's website

http://www.thecraniofacialcenter.org/deformations_howknow.html

and this particular page gives you a way to get an idea if it PROBABLY is

plagio. He tells you to look at the ears, but you will have to read it for

yourself. It gave me some reasurance before the they even did the scan, then

the scan confirmed that it was just plagio.

Hope that helps you too,

Annie

>

> My son, Justice, was placed in a Starband helmet on Jan,26 of this year and is

now in a second helmet. Anyways I was at the CT almost 2 weeks ago and they

asked me about Justices scan because they say that they THINK the soft spots on

his head have prematurely fused together. I said he never had a scan in which he

never did, the CT replies that all kids have to have a scan before the helmet

and that someone along the way messed up and they are thinking that it isnt

plagio at all, it could be water on the brain or craniophephly(sp?)They were

shocked of no scan ever being done. Anyways I leave and next thing I know we

were getting the calls from neorosciences about a scan and needing it ASAP. So

my question is...Did everyone elses little ones have a scan before the helmet?

Also now I feel we are messing up and I dont want to continue the helmet process

until some one can say for sure what is up. They also said that a doctor cant

physically look at a little ones head and automatically say its plagio because

it could be several other things...Im confused and to be honest im scared for my

son. any help suggestions or anything would be appreciated.

>

> Thanks,

>

> , mom to Justice 6.5 months is second Starband

>

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