Re: Re: Just released from hospital again!!

[Guest guest]

Tonia- I mentioned isordil to dr moore for spasms. He said if the nitrates and

the calcium channel blockers didn't work then chances are the isordil will not

work either. He has done 30 myotomies, he is ranked top 5 in VA for laparoscopic

surgery currently. He told me VA is not a " hotbed " for esophgeal intervention.

He asked me to encourage you to go to penn. Or cleveland. I asked him to operate

on dakota when we first got his diagnosis, he refused. He said, " go to the

best. " He signed dakotas petition when we fought insurance company. I know you

are scared. Remember how scared I was. You helped me so much. I am so grateful

to you. is waiting for you to take control. Go and see what doc L has to

say. We love you and james...angela

Sent from my Verizon Wireless BlackBerry

Just released from hospital again!!

> > >

> > > Yes AGAIN we had to rush to hospital for the intense spasms!

> > > They had to admit him again to get the pain under control but this

time....... they gave him wayyyyyyyyy too much. They put him on a liquid diladid

and he went out cold.They said (nurses) this was normal . I began t watch his

respirations and heart beat and was getting freaked out. His heartbeat was over

150 beats a minute,his breaths were 1 every 20 seconds, and he wouldnt wake for

nothing.He would even start to vomit and couldnt move his head at all.I would

hold his head up and clean his mouth out.He done this many times.I called the

nurses in who said again...this was normal.I knew damn well it wasnt.Even after

his open myotomy he wasnt like this.Ice cold rags would not even move him! I

demanded a Dr!

> > > Once he came in they instantly started taking him off everything.He was in

respitory distress!!!!!!

> > >

> > > It took 8 - 10 hours after they took him of everything to get him to wake

up and be able to talk normally.Next step was some shot to get all meds out of

his system and wake him abrubtly in pain they said and send him to ICU.He

finally began to improve

> > >

> > > At this point they said they could only give him oxycodone for pain.This

doesnt help him at home so of course it didnt help in the hospital when he had

another spasm.But what could we do cause he couldnt take all that medicine

again. They done a barrium swallow when he was barely able to even drink on

there command to see if anything was in his E causing the spasms.They didnt see

anything but I noticed he esophagus has changed greatly since only July. His

esophagus used to come straight down,now it has a huge curve at the upper

part(kinda like a L shape or like the drain under your kitchen sink. I dont know

what that is about and if that could be causing whats going on.

> > >

> > > After 3 days they decided to let him go home as they could do no more but

at the same time said he did not need a esophectomy done. What do they know?

They nearly killed him with medicine overdose!

> > > even got seen by a psych Dr as said he was gonna kill himself,

he couldnt take it anymore.Pysch Dr said he appeared fine.They should have saw

him hours before we he was flipping out about having this disease sand couldnt

get pain under control again.Before they let him go, he had to agree to go

straight to his Counselor appt he had yesterday. So we went of course.

> > > They did decide to try him on another medicine called Isordil 3 x a day

to help with the spasms. Anyone taken these for that?

> > >

> > > So as of now he takes Elavil 50 mg for antidepression,Isordil 3 x a day

for spasm control(hopefully they say) and prilosic incase he has acid, and then

oxycodone for pain 10 mg.

> > >

> > > These Drs were so against the thought of him having this ectomy at a young

age.But how does he go on like this? He has been in hospital 3 times past month

for intense pain. I just dont know how much more any of us can take.Of course

what these Drs say meen nothing but how can they think that way when they se

whats going on with him

> > >

> > > You all know when I post I need your advice,support, help , and thoughts

about whats going on. JAmes is one day about having the surgery and the next day

when not having a spasm , hes not sure.

> > >

> > > Tonia- Who is just over whelmed and soooooooooo worried about her son

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I work with dr moore and his partner dr spencer who is a thoracic surgeon. While

both have done myotomies they encourage most patients to go to penn. Or

cleveland. I let dr moore read your post from my blackberry. I'm on call today

and was at work when your post came through. Dr moore expressed concern about

the narcotics and the quality of life james is having to endure. He is not

convinced pain management is the best way to handle this. he believes james

needs attention asap from someone who is an expert in achalasia. The local docs

you have been dealing with, ER docs, don't seem to be doing much except trying

to control symptoms. Which translates, throw drug on it. Dr moore also feels

james need to see an expert, Doc L. You have been dealing with local docs

everytime you have to rush james to the ER. dakota is doing well. He has been

awarded his black belt in muay tia kickboxing. Last feb. We were on our way to

cleveland, this jan. He's a blackbelt. Thanks to you in no small part. I just

want to encourage you to get james to Doc L. He maybe able to free him from this

vicious cycle of pills and hospitals.

Sent from my Verizon Wireless BlackBerry

Just released from hospital again!!

> > > >

> > > > Yes AGAIN we had to rush to hospital for the intense spasms!

> > > > They had to admit him again to get the pain under control but this

time....... they gave him wayyyyyyyyy too much. They put him on a liquid diladid

and he went out cold.They said (nurses) this was normal . I began t watch his

respirations and heart beat and was getting freaked out. His heartbeat was over

150 beats a minute,his breaths were 1 every 20 seconds, and he wouldnt wake for

nothing.He would even start to vomit and couldnt move his head at all.I would

hold his head up and clean his mouth out.He done this many times.I called the

nurses in who said again...this was normal.I knew damn well it wasnt.Even after

his open myotomy he wasnt like this.Ice cold rags would not even move him! I

demanded a Dr!

> > > > Once he came in they instantly started taking him off everything.He was

in respitory distress!!!!!!

> > > >

> > > > It took 8 - 10 hours after they took him of everything to get him to

wake up and be able to talk normally.Next step was some shot to get all meds out

of his system and wake him abrubtly in pain they said and send him to ICU.He

finally began to improve

> > > >

> > > > At this point they said they could only give him oxycodone for pain.This

doesnt help him at home so of course it didnt help in the hospital when he had

another spasm.But what could we do cause he couldnt take all that medicine

again. They done a barrium swallow when he was barely able to even drink on

there command to see if anything was in his E causing the spasms.They didnt see

anything but I noticed he esophagus has changed greatly since only July. His

esophagus used to come straight down,now it has a huge curve at the upper

part(kinda like a L shape or like the drain under your kitchen sink. I dont know

what that is about and if that could be causing whats going on.

> > > >

> > > > After 3 days they decided to let him go home as they could do no more

but at the same time said he did not need a esophectomy done. What do they know?

They nearly killed him with medicine overdose!

> > > > even got seen by a psych Dr as said he was gonna kill

himself, he couldnt take it anymore.Pysch Dr said he appeared fine.They should

have saw him hours before we he was flipping out about having this disease sand

couldnt get pain under control again.Before they let him go, he had to agree to

go straight to his Counselor appt he had yesterday. So we went of course.

> > > > They did decide to try him on another medicine called Isordil 3 x a day

to help with the spasms. Anyone taken these for that?

> > > >

> > > > So as of now he takes Elavil 50 mg for antidepression,Isordil 3 x a day

for spasm control(hopefully they say) and prilosic incase he has acid, and then

oxycodone for pain 10 mg.

> > > >

> > > > These Drs were so against the thought of him having this ectomy at a

young age.But how does he go on like this? He has been in hospital 3 times past

month for intense pain. I just dont know how much more any of us can take.Of

course what these Drs say meen nothing but how can they think that way when they

se whats going on with him

> > > >

> > > > You all know when I post I need your advice,support, help , and thoughts

about whats going on. JAmes is one day about having the surgery and the next day

when not having a spasm , hes not sure.

> > > >

> > > > Tonia- Who is just over whelmed and soooooooooo worried about her son

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Tonia wrote:

> ... I do believe we will be heading to see Dr L soon. ...

When you do there are some question that may be good to ask. Is the pain

actually spasm pain or some other kind of esophageal NCCP? Could the

pain be neuropathic or due to adhesions? If from spasms, what kind of

spasms and where in the esophagus? Can any surgery or dilatation be done

with a chance of making a difference on the muscles that spasm? What are

the chances that in time the pain will become less or even go away

without doing anything? What are the long-term risks of cancer with and

without an esophagectomy? What are the other long-term risks of an

esophagectomy.

> ... We want to see if this new medicine works(isordil) and what pain managment

has to say. ...

I also think you would want that information before looking at other

options. The odds may not be great that something good enough will be

found but I think there is at least a chance and some peace of mind in

knowing that you checked it out.

notan