Update

[Guest guest]

Cara,

I am so glad to read of your successful surgery. Keep up the good work!

Dr. Steve

> >

> > Doing well. Still in some pain. Right more late. Jeff shaw

> >

>

[Guest guest]

Hello Audrey, I wondered where you had vanished. I hope that

your husband will soon be fully on the road to recovery, but perhaps he too

should see Dr Peatfield. Doctors don't appear to realise that those who have

the symptoms of hypothyroidism but who are not being diagnosed or treated

properly, run the risk of suffering dangerous consequences, and

some of these are serious mental problems, seizures, heart disease, diabetes

including misdiagnosis and complications, constipation resulting in colon

cancer, all female problems (due to high amounts of dangerous forms of

oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis,

breast cancer, miscarriage, heavy periods and cramps, bladder problems leading

to infections, anaemia, elevated CPK, elevated creatinine, elevated

transaminases, hypercapnia, hyperlipidaemia, hypoglycaemia, hyponatraemia,

hypoxia, leukopaenia respiratory acidosis and others....

It is perhaps his not taking thyroid hormone replacement that

has caused his heart problem and he should talk to Dr Peatfield about this, and

if required, start on a very low dose and build up gradually. He is doing the

right thing in getting his adrenals boosted. Is there any chance he can get his

ferritin, vitamin B12, vitamind D3, magnesium, folate, copper and zinc tested

to see whether any of these are low in the range. His GP should do these tests

for him. However, do get the results with the reference range and post them

here so we can help check them out.

With

a reverse T3 problem, then you HAVE to take T3 only. Taking any form of T4

(even that in natural thyroid) will cause you the problems you are probably

experiencing, so I would say you need T3 sooner rather than later.

Delighted

to hear that you have had three pain free days - now don't get excited and

start doing too much again putting yourself back where you were before. Take

things easy.

Luv

- Sheila

As for me. I have now heard from Dr P and he agrees with all of the

advice I have been given on TPA and thinks I may have reverse T3

problems so is asking for temp and pulse chart together with a month's

diary so that he can assess me more. He has suggested I gradually go up

to 6 NT but if of no benefit then I may have to take T3. I have tried

increasing the HC to 30 a day but it is preventing me from getting a

good night's sleep so I think I may have to stick at 20mg and take it

earlier in the day split into 10-5-5.

No virus found in this message.

Checked by AVG - www.avg.com

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[Guest guest]

Hello

Audrey, I am pleased that you are starting to feel better, and wonderful that

you have done a pile of ironing - how good does that make you feel? However,

don't go overdoing things - which is easy once you start to feel better,

because you could so easily knock yourself back again to where you were before.

However, I would try increasing with half a tablet (30mgs) every three weeks

instead of a quarter, otherwise you will be ages before you really get the full

benefit. If increasing by half a tablet is too much, the next day drop it by a

quarter.

A very Happy Christmas and a very Health New Year to everybody

too.

Luv - Sheila

Hello Sheila,

I thought I would just drop in to update you

before Christmas.

As you are aware my Genova results of a few

weeks ago showed that I was at the exhaustion stage. However, with your

help and that of the group as well as that of Dr P I raised the HC took

Nax plus the NT I was already taking. I began to feel better

immediately but then owing to me taking to much NT to quickly I became hyper

and my pulse went up to 160 and my heart thumped badly. Now I realise I

should have taken it more slowly so having dropped back to one grain I am

gradually increasing by a quarter tablet every three weeks and am now up to one

and three quarters of NT plus four NAX and 20/30 of HC.

Today I have manged to complet a pile of

ironing(I used to have to send this out to be done)and was so thrilled to have

achieved this. My health is slowly but surely improving. But as I

have been ill most of my adult life and seriously so for the past twelve years

I wonder how long it will be before I regain full health bearing in mind that I

am almost 75.

In closing I would like to wish everyone a Very Happy Christmas and healthy New Year.

Love Audrey

[Guest guest]

That is great news. Glad you get back in touch. Who was your surgeon.

Sandy

>

> I haven't been on this site in years - but I was dx with achalasia in 2004 and

had surgery in 2005. I guess I can say I'm about 90% symptom free. I can eat

what I want. Sometimes food gets a little stuck and I have to wait and breath.

If I just relax it will go down. I've had some minor scares with relapses, but

they went away. Redid scope last year and no dysplasia. I'm thankful that the

surgery has worked.

>

[Guest guest]

G wrote:

> I haven't been on this site in years -

Thanks for the update.

notan

[Guest guest]

Dr. Anvari in Hamilton, Ontario

> >

> > I haven't been on this site in years - but I was dx with achalasia in 2004

and had surgery in 2005. I guess I can say I'm about 90% symptom free. I can

eat what I want. Sometimes food gets a little stuck and I have to wait and

breath. If I just relax it will go down. I've had some minor scares with

relapses, but they went away. Redid scope last year and no dysplasia. I'm

thankful that the surgery has worked.

> >

>

[Guest guest]

If they are really telling us everything!

From: Ariel Monserrat <wolvenwood@...>iodine Sent: Sat, March 12, 2011 7:52:44 PMSubject: update

Japan Rates Fukushima Accident 4 Out Of 7

Japan has ranked the accident at Fukushima nuclear facility as a 4 on a 7-point scale, Ria Novosti reports:

The Japanese authorities have described the accident at the Fukushima nuclear power plant as a "nuclear accident with local consequences" in a report to the International Atomic Energy Agency (IAEA), the DPA news agency said. The report assigned the accident the level 4 on the international INES scale that runs from 1 (anomaly) to 7 (major accident), the news agency said. According to the IAEA's definition, a level-4 accident is defined as having "local consequences," such as a "minor release of radioactive material."from the huffington Post.Looks like the disaster has been limited, at least thus far.BB, Ariel-- Ariel MonserratPublisher & Managing EditorGreen Egg zinewww.greeneggzine.com

[Guest guest]

Hi Jane

Also he said that too many doctors take notice of the TSH result without taking

anything else into consideration.

As far as the Synathene test is concerned he felt it almost useless in my case

as I am borderline.

He was happy for me to consult him via Skype.

Having gone back and forth to him for advice and wondering what course to take

I continued to not take any other medication.

He is correct about doctors taking too much notice of the TSH

and little else - this is probably because the British Thyroid Association have

it on their web site that to reach a precise diagnosis of hypothyroidism ONLY

thyroid function test results should be used, and they don't say anything about

considering a patients symptoms and signs, family history, performing a

thorough clinical examination etc - so doctors listen to the BTA and just go by

blood test results. He is also correct about the synacthen test. It will not

show low adrenal reserve (or adrenal fatigue as some of us call it), so unless

you feel you are on the verge of 's disease or Cushing's syndrome, it

really is a waste of your time and the hospital's time.

Exactly what medications did you discontinue taking?

We had planned a holiday so off we

went, by which time I had developed a cold. I then suffered with a

migraine, first day really bad with a horrible sickness feeling, followed by

two more days of permanent headache..................but we were on holiday and

I battled on.

On our return I again contacted the

doctor in Paris as I had started to have puffy eyes in the mornings, feeling

more tired and had already put on 2-3kilos!!

He advised me to restart the DHEA and Thyroid-S @ 1 per day.

I started these on Thursday last, 3 weeks after stopping everything.

How

much DHEA were you taking?

He also felt that a Reverse T3 test would

be a good idea.

Not so simple, or so I thought.

I contacted the laboratory who usually do my blood tests and they advised that

they could send a sample to a lab in Paris at a cost of 76€.

I was able to go to my local nurse and the sample has been sent off - it will

take about a month to get the result.

TSH and Free T3 at the same time as follows:

TSH 0.23

Free T3 0.9 ng/l (or 1.39 pmol/l).

In

order to help interpret your thyroid function test results, we need to know the

reference range for each of the tests done. TSH is suppressed, which it usually

is when taking natural thyroid extract or even synthetic T3 but I need to know

the ref. range for fT3 before I can comment. What was your Ft4 result? Reverse

T3 can be worked out if you have both TOTAL T3 and FREE T3.

So life goes on, not much different

to before, except my clothes are a little tighter and I can jog more easily.

Sounds like a contradiction in terms.

When

you increase your Thyroid-s (and you should be doing this after a week of being

on 1 tablet) you should start to feel better. What are you taking for your 'borderline'

adrenals? Have you been tested to see where your levels of ferritin, vitamin B12,

vitamin D3, magnesium, folate, copper and zinc are in the reference range. If any

of these are low, your thyroid hormone cannot be fully utilised at the cellular

level.

Luv -

Sheila

[Guest guest]

Hi SheilaExactly what medications did you discontinue taking?I had been taking the following:-Thyroid-S 60mg - 3 per dayCynomel 25mcg - 2½ per dayHydrocortisone 1omg - 2 per dayDHEA 15mg - 1 per dayHow much DHEA were you taking?As aboveIn order to help interpret your thyroid function test results, we need to know the reference range for each of the tests done. TSH is suppressed, which it usually is when taking natural thyroid extract or even synthetic T3 but I need to know the ref. range for fT3 before I can comment. What was your Ft4 result? Reverse T3 can be worked out if you have both TOTAL T3 and FREE T3.These were my earlier results before stopping the medication:TSH <0.005 mUI/lFree T3 6.5 ng/l (2.40 – 5.00 ng/l) or 10.01 pmol/l (3.70 – 7.70 pmol/l)Free T4 9.4 ng/l (9.40 – 17.0 ng/l) or 12.00 pmol/l (12.0 - 22.0 pmol/l) After 3 weeks of no medication:TSH 0.23 mUI/lFree T3 0.9 ng/l (2.40 - 5.00ng/l) or 1.39 pmol/l (3.70 - 7.70 pmol/l)I have not had a test showing total T3.When you increase your Thyroid-s (and you should be doing this after a week of being on 1 tablet) you should start to feel better. What are you taking for your 'borderline' adrenals? Have you been tested to see where your levels of ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc are in the reference range. If any of these are low, your thyroid hormone cannot be fully utilised at the cellular level.I have a result from 09/2010 for ferritin of 203 (ref range 15 to 150) prior to that 220 in 04/2010, 216 in 11/2009, 237 in 09/2008, 131 in 07/2008, 159 in 05/2008Vitamin D (D2 + D3) 42 ng/ml (ref range 30 - 80 ng/ml) in May 2009 - I take a Vitamin D capsule every 6 months.No tests for the others though,Janex

[Guest guest]

Hi Jane, you certainly were taking a lot of thyroid hormone

replacement and no wonder your shaking hands stopped and you could run more

easily when you stopped taking them all. This is an indication you were on far

too much and now you have started back again, you really do need to be cautious

in the way you increase your dose. Am I correct in that the tests were done

after stopping your thyroid hormone replacements or were they done after

starting back on Thyroid-s. Had you taken your Thyroid-s on the morning your

blood was drawn for the test? Did they test your free T4 this last time? You

must be feeling pretty awful with such results.  I would get the Reverse T3

tested through Genova Diagnostics. You can get a discount on this test by

mentioning that you are a member of Thyroid Patient Advocacy (see FILES, then

'Discounts on Tests and Supplements'). If the results comes back showing you do

have a Reverse T3 problem, you would need T3 only until this has cleared. have

you increased your Thyroid-s since you first started it, or introduced any T3.

Luv - Sheila

Exactly what medications did you discontinue taking?

I had

been taking the following:-

Thyroid-S 60mg - 3 per day

Cynomel 25mcg - 2½ per day

Hydrocortisone 1omg - 2 per day

DHEA 15mg - 1 per day

TSH 0.23 mUI/l

Free T3 0.9 ng/l (2.40 - 5.00ng/l) or 1.39 pmol/l (3.70 - 7.70 pmol/l)

I have not had a test showing total T3.

[Guest guest]

Hi Sheila Am I correct in that the tests were done after stopping your thyroid hormone replacements or were they done after starting back on Thyroid-s. I had only restarted Thyroid-S for one day.Had you taken your Thyroid-s on the morning your blood was drawn for the test?I never take any medication on the morning of a blood test. Did they test your free T4 this last time?No You must be feeling pretty awful with such results. Actually not too bad, a bit tired, but I have been jogging (about 25 minutes 3 times a week), cycling and I teach a fitness class once a week. I would get the Reverse T3 tested through Genova Diagnostics.My blood sample has gone to a lab in Paris for this test. I have to say a big thank you for your help and information.I am still awaiting further replies from the doctor in Paris, but he tends to be busy and using Skype only as a means of communication is not easy.Janexx

[Guest guest]

, my test showed that same thing too but I still had spasms.  Achalasia is

a funny thing and there still might be some abnormal function with the nerves

that control the " E " .  In my opinion I would stay away from the botox.  As for

seeing another doctor out of your area well it can be done and still paid for. 

I had to push the issue to see my surgeon because he was out of network.  Yes I

had to jump through some extra hoops but in the end it is my health not the

insurance companies.

 

<font face= " comic sans ms " color= " #ff0000 " size= " 5 " > in Georgia

</font><img src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

From: s <ravenstorm2008@...>

Subject: Update

" Achalasia Group " <achalasia >

Date: Tuesday, June 28, 2011, 10:13 AM

 

I saw my doctor this morning and I am definitely going to have surgery. He

did tell me that there are no surgeons in Bangor Maine so the closest place

is Portland Maine. He did recommend Boston or Dartmouth but agrees that

MaineCare isn't likely to pay for me to have surgery there if it is

available at all in Maine. I am putting off surgery till after the first of

the year so that I can finish college and at least enjoy the summer. He did

say that I could have another botox injection if needed to help me get by

until surgery.

He was questioning the spasms I told him I was having. He told me my

manometry test showed no motility at all so he said that I shouldn't be

experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

will try that to see if it helps.

I will see him again in December or sooner if things worsen enough for me to

even consider another botox injection. At that time I will get referred to

the surgeon and he will take it from there. The surgeon he would refer me to

is Roy Cobean.

S

[Guest guest]

MaineCare is the state's version of medicaid and they are real jerks about

covering things that are needed. I'm surprised they haven't pitched a fit

over some of the tests. I am going to meet with this surgeon and see how

many he has done. If I am not satisfied, I will contact MaineCare and pitch

a fit of my own over the need to see a surgeon who specializes in myotomies

for achalasia.

I am definitely going to avoid another botox injection. I'm doing pretty

good right now and hope that it lasts until I get surgery. I am trying to be

more proactive with my health. MaineCare has no problem with me seeing a

doctor in-state. It is the out of state option that they will fight. I am

ready to fight if needed so I will wait and see what happens now.

S

-- Update

" Achalasia Group " <achalasia >

Date: Tuesday, June 28, 2011, 10:13 AM

I saw my doctor this morning and I am definitely going to have surgery. He

did tell me that there are no surgeons in Bangor Maine so the closest place

is Portland Maine. He did recommend Boston or Dartmouth but agrees that

MaineCare isn't likely to pay for me to have surgery there if it is

available at all in Maine. I am putting off surgery till after the first of

the year so that I can finish college and at least enjoy the summer. He did

say that I could have another botox injection if needed to help me get by

until surgery.

He was questioning the spasms I told him I was having. He told me my

manometry test showed no motility at all so he said that I shouldn't be

experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

will try that to see if it helps.

I will see him again in December or sooner if things worsen enough for me to

even consider another botox injection. At that time I will get referred to

the surgeon and he will take it from there. The surgeon he would refer me to

is Roy Cobean.

S

[Guest guest]

,

I have taken the Levsen or Nulev as a dissolveable tablet under the tongue, it

helps with the spasms.  The only thing is the manufacturer stopped making it in

Nulev (name brand), the generic for both is Hyoscyamine and it is mint flavored

and the mint increases my spasms.  The other tablet I take for spasms is

Donnatol or generic Belladonna Alkaloids/Phenobarbital.

 

" " Phenobarbital is in a group of drugs called barbiturates (bar-BIT-chur-ates).

Phenobarbital slows the activity of your brain and nervous system.

Belladonna alkaloids produce many effects in the body, including reduced muscle

spasms in the digestive or urinary tract, and reduced fluid secretions from

certain glands or organs. " " (http://www.drugs.com/mtm/donnatal.html)  The only

problem is the manufacturer of Donnatol is stopping the manufacturer of the

Donnatol, be sure if you inquire about it ask for the generic.

 

It has been good to me.  I have been taking it for going on 30 years.   I

also have what they consider the vigorous version of Achalasia.  I had my

myotomy in 1999 and now do not have as many spasms but still need the anti-spasm

medication along with an acid control. 

 

Maybe this will help.  At first my doctor was also like yours, did not believe

I could still be having spasms, but he listened and researched.  I like a

doctor that listens and helps his patience.  I also still from time to time

still have to have a dilation.  But I am holding my on weight wise and can eat

most anything I want to.  Be sure to talk, talk, talk to you doctor until he

listens. 

 

Good luck.

 

Sharon Cline

 

 

 

From: s <ravenstorm2008@...>

Subject: Update

" Achalasia Group " <achalasia >

Date: Tuesday, June 28, 2011, 10:13 AM

I saw my doctor this morning and I am definitely going to have surgery. He

did tell me that there are no surgeons in Bangor Maine so the closest place

is Portland Maine. He did recommend Boston or Dartmouth but agrees that

MaineCare isn't likely to pay for me to have surgery there if it is

available at all in Maine. I am putting off surgery till after the first of

the year so that I can finish college and at least enjoy the summer. He did

say that I could have another botox injection if needed to help me get by

until surgery.

He was questioning the spasms I told him I was having. He told me my

manometry test showed no motility at all so he said that I shouldn't be

experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

will try that to see if it helps.

I will see him again in December or sooner if things worsen enough for me to

even consider another botox injection. At that time I will get referred to

the surgeon and he will take it from there. The surgeon he would refer me to

is Roy Cobean.

S

[Guest guest]

Hi ,

If food is sticking often I'd suggest surgery earlier than later, so you don't

stretch your esophagus much more. Not sure if my visualization is correct, but

it is like stuffing a stretchy sock (or pantyhose if you are that old) It will

keep stretching, but doesn't come back.

About the spasms, if you doctor isn't aware that spasms are common and

unpredictable with us, then he/she isn't that experienced. Our doctors don't

really have any solutions for them, but they know we can have some serious

spasms.

If possible, at all, it is so much better to get to a surgeon that has done a

significant number of myotomies. It is worth the hassle, in my opinion.

If you opt for the surgery earlier, most of us are back to pretty functional

activities, except for lifting, in a weekend. You have to be careful, but you

can still go places and do things, and probably eat well.

>

>

> From: s <ravenstorm2008@...>

> Subject: Update

> " Achalasia Group " <achalasia >

> Date: Tuesday, June 28, 2011, 10:13 AM

>

>

>

>

>

>

> I saw my doctor this morning and I am definitely going to have surgery. He

> did tell me that there are no surgeons in Bangor Maine so the closest place

> is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> MaineCare isn't likely to pay for me to have surgery there if it is

> available at all in Maine. I am putting off surgery till after the first of

> the year so that I can finish college and at least enjoy the summer. He did

> say that I could have another botox injection if needed to help me get by

> until surgery.

>

> He was questioning the spasms I told him I was having. He told me my

> manometry test showed no motility at all so he said that I shouldn't be

> experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

> will try that to see if it helps.

>

> I will see him again in December or sooner if things worsen enough for me to

> even consider another botox injection. At that time I will get referred to

> the surgeon and he will take it from there. The surgeon he would refer me to

> is Roy Cobean.

>

> S

>

>

[Guest guest]

- if you want to go out of state - your best bet is to find the doctor you

want in Mass. and have their office fight the battle with MaineCare - they will

do it and they have experience and kwow who to battle with.

Many of us have been down this road before and the insureance people really do

know what they are doing.

DONT settle for someone who does not have the experience you need.

Keep us posted

~ in NC

>

>

> From: s <ravenstorm2008@...>

> Subject: Update

> " Achalasia Group " <achalasia >

> Date: Tuesday, June 28, 2011, 10:13 AM

>

>

>

>

>

>

> I saw my doctor this morning and I am definitely going to have surgery. He

> did tell me that there are no surgeons in Bangor Maine so the closest place

> is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> MaineCare isn't likely to pay for me to have surgery there if it is

> available at all in Maine. I am putting off surgery till after the first of

> the year so that I can finish college and at least enjoy the summer. He did

> say that I could have another botox injection if needed to help me get by

> until surgery.

>

> He was questioning the spasms I told him I was having. He told me my

> manometry test showed no motility at all so he said that I shouldn't be

> experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

> will try that to see if it helps.

>

> I will see him again in December or sooner if things worsen enough for me to

> even consider another botox injection. At that time I will get referred to

> the surgeon and he will take it from there. The surgeon he would refer me to

> is Roy Cobean.

>

> S

>

>

[Guest guest]

My insurance had a fit with the Levsen so it got changed to the Hyomax which

is the generic version. This one you let dissolve on your tongue then wash

it down. It doesn't have a mint flavor but it isn't too bad. My doctor at

least listened and is trying this so hopefully it works.

S

-- Update

" Achalasia Group " <achalasia >

Date: Tuesday, June 28, 2011, 10:13 AM

I saw my doctor this morning and I am definitely going to have surgery. He

did tell me that there are no surgeons in Bangor Maine so the closest place

is Portland Maine. He did recommend Boston or Dartmouth but agrees that

MaineCare isn't likely to pay for me to have surgery there if it is

available at all in Maine. I am putting off surgery till after the first of

the year so that I can finish college and at least enjoy the summer. He did

say that I could have another botox injection if needed to help me get by

until surgery.

He was questioning the spasms I told him I was having. He told me my

manometry test showed no motility at all so he said that I shouldn't be

experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

will try that to see if it helps.

I will see him again in December or sooner if things worsen enough for me to

even consider another botox injection. At that time I will get referred to

the surgeon and he will take it from there. The surgeon he would refer me to

is Roy Cobean.

S

[Guest guest]

Hi ,

I would add my support to what Sandy wrote to . Between now and the winter,

the esophagus can continue to deteriorate and you can continue to struggle. The

operation will not ruin your summer, but it could make your winter more

arduous.  Please consider not putting off the inevitable, for the chances are,

that in the long run, you will be better off doing it now.

________________________________

From: Sandy <sandycarroll@...>

achalasia

Sent: Wed, June 29, 2011 10:35:17 AM

Subject: Re: Update

 

Hi ,

If food is sticking often I'd suggest surgery earlier than later, so you don't

stretch your esophagus much more. Not sure if my visualization is correct, but

it is like stuffing a stretchy sock (or pantyhose if you are that old) It will

keep stretching, but doesn't come back.

About the spasms, if you doctor isn't aware that spasms are common and

unpredictable with us, then he/she isn't that experienced. Our doctors don't

really have any solutions for them, but they know we can have some serious

spasms.

If possible, at all, it is so much better to get to a surgeon that has done a

significant number of myotomies. It is worth the hassle, in my opinion.

If you opt for the surgery earlier, most of us are back to pretty functional

activities, except for lifting, in a weekend. You have to be careful, but you

can still go places and do things, and probably eat well.

>

>

> From: s <ravenstorm2008@...>

> Subject: Update

> " Achalasia Group " <achalasia >

> Date: Tuesday, June 28, 2011, 10:13 AM

>

>

>

>

>

>

> I saw my doctor this morning and I am definitely going to have surgery. He

> did tell me that there are no surgeons in Bangor Maine so the closest place

> is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> MaineCare isn't likely to pay for me to have surgery there if it is

> available at all in Maine. I am putting off surgery till after the first of

> the year so that I can finish college and at least enjoy the summer. He did

> say that I could have another botox injection if needed to help me get by

> until surgery.

>

> He was questioning the spasms I told him I was having. He told me my

> manometry test showed no motility at all so he said that I shouldn't be

> experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

> will try that to see if it helps.

>

> I will see him again in December or sooner if things worsen enough for me to

> even consider another botox injection. At that time I will get referred to

> the surgeon and he will take it from there. The surgeon he would refer me to

> is Roy Cobean.

>

> S

>

>

[Guest guest]

The only problem with trying to get surgery sooner is that if I had to have

an open procedure it might conflict with the start of classes in August. The

botox is still working so I'm not having the buildup of food like I used to.

I can actually feel when the food passes into my stomach. I also eat a lot

of mushy foods since they are easier to swallow. At first I had hoped to

have it done around the end of May but I couldn't get an appointment with my

doctor until June 28th. Since I have to lose time from work. Having surgery

in January will set us up better by allowing us to plan ahead to cover

expenses normally covered by my paycheck. My employer can't afford to be

without me during the summer. Right now our office manager is on vacation

for 3 weeks and I am the only one who can do her job while she is gone. Plus

this gives them time to train extra help before I am out of work. If my

symptoms suddenly worsen then surgery will be a top priority, but right now

I feel it is better to wait which may give me more time to work on getting

MaineCare to allow me to have the surgery in Boston as opposed to Maine. At

least the hospital in Maine is a very good one, they fix a lot of mistakes

that Bangor makes. The best doctors Maine has are found in Portland. Right

now I'll take it one day at a time and see what happens.

S

-- Update

> " Achalasia Group " <achalasia >

> Date: Tuesday, June 28, 2011, 10:13 AM

>

>

>

>

>

>

> I saw my doctor this morning and I am definitely going to have surgery. He

> did tell me that there are no surgeons in Bangor Maine so the closest

place

> is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> MaineCare isn't likely to pay for me to have surgery there if it is

> available at all in Maine. I am putting off surgery till after the first

of

> the year so that I can finish college and at least enjoy the summer. He

did

> say that I could have another botox injection if needed to help me get by

> until surgery.

>

> He was questioning the spasms I told him I was having. He told me my

> manometry test showed no motility at all so he said that I shouldn't be

> experiencing any E spasms. He did give me a prescription for Levsin(sp) so

I

> will try that to see if it helps.

>

> I will see him again in December or sooner if things worsen enough for me

to

> even consider another botox injection. At that time I will get referred to

> the surgeon and he will take it from there. The surgeon he would refer me

to

> is Roy Cobean.

>

> S

>

>

[Guest guest]

Hi -

I too add my support for sooner rather than later. I'm on day 10, and although I

am very attached to my blender, I am going on long walks & doing all same things

I would have been doing before surgery if I weren't so tired & weak from not

eating....really, 1 week of " stay home " type recovery, and then now 4 days of

doing most of my normal things - just no strenuous stuff like lifting or running

yet.

On Jun 29, 2011, at 4:33 PM, RICHARD FRIEDMAN wrote:

> Hi ,

>

> I would add my support to what Sandy wrote to . Between now and the

winter,

> the esophagus can continue to deteriorate and you can continue to struggle.

The

> operation will not ruin your summer, but it could make your winter more

> arduous. Please consider not putting off the inevitable, for the chances are,

> that in the long run, you will be better off doing it now.

>

>

>

> ________________________________

> From: Sandy <sandycarroll@...>

> achalasia

> Sent: Wed, June 29, 2011 10:35:17 AM

> Subject: Re: Update

>

>

> Hi ,

>

> If food is sticking often I'd suggest surgery earlier than later, so you don't

> stretch your esophagus much more. Not sure if my visualization is correct, but

> it is like stuffing a stretchy sock (or pantyhose if you are that old) It will

> keep stretching, but doesn't come back.

>

> About the spasms, if you doctor isn't aware that spasms are common and

> unpredictable with us, then he/she isn't that experienced. Our doctors don't

> really have any solutions for them, but they know we can have some serious

> spasms.

>

> If possible, at all, it is so much better to get to a surgeon that has done a

> significant number of myotomies. It is worth the hassle, in my opinion.

>

> If you opt for the surgery earlier, most of us are back to pretty functional

> activities, except for lifting, in a weekend. You have to be careful, but you

> can still go places and do things, and probably eat well.

>

>

> >

> >

> > From: s <ravenstorm2008@...>

> > Subject: Update

> > " Achalasia Group " <achalasia >

> > Date: Tuesday, June 28, 2011, 10:13 AM

> >

> >

> >

> >

> >

> >

> > I saw my doctor this morning and I am definitely going to have surgery. He

> > did tell me that there are no surgeons in Bangor Maine so the closest place

> > is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> > MaineCare isn't likely to pay for me to have surgery there if it is

> > available at all in Maine. I am putting off surgery till after the first of

> > the year so that I can finish college and at least enjoy the summer. He did

> > say that I could have another botox injection if needed to help me get by

> > until surgery.

> >

> > He was questioning the spasms I told him I was having. He told me my

> > manometry test showed no motility at all so he said that I shouldn't be

> > experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

> > will try that to see if it helps.

> >

> > I will see him again in December or sooner if things worsen enough for me to

> > even consider another botox injection. At that time I will get referred to

> > the surgeon and he will take it from there. The surgeon he would refer me to

> > is Roy Cobean.

> >

> > S

> >

> >

[Guest guest]

My biggest problem is that my job requires continuous heavy lifting. I work

in a cash office lifting tills and heavy change trays a lot. Plus I also

need to run a register where I have to lift heavy products. I don't know if

the surgeon he would refer me to does laparascopic surgery or not. If not

then I don't want to risk the chance of affecting my last semester at

college. I am already thinking that I am going to push for at least being

out of work for 3 weeks if they do laparascopic surgery. If not then I am

out for a bit longer. I am taking it day by day and if the symptoms start to

get worse then I will contact my doctor and get him to set up the referral

with the surgeon.

Since I am the assistant office manager I need to be available all summer

cause they can't be short a person for even a short period of time. It has

been rough with the office manager being on vacation. Thank goodness she

will be back next week. We only have 4 office employees and two of them also

work in other departments.The store manager has been really good about

allowing me to keep water in the office so I can stop spasms as soon as they

start.

-- Update

> > " Achalasia Group " <achalasia >

> > Date: Tuesday, June 28, 2011, 10:13 AM

> >

> >

> >

> >

> >

> >

> > I saw my doctor this morning and I am definitely going to have surgery.

He

> > did tell me that there are no surgeons in Bangor Maine so the closest

place

> > is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> > MaineCare isn't likely to pay for me to have surgery there if it is

> > available at all in Maine. I am putting off surgery till after the first

of

> > the year so that I can finish college and at least enjoy the summer. He

did

> > say that I could have another botox injection if needed to help me get

by

> > until surgery.

> >

> > He was questioning the spasms I told him I was having. He told me my

> > manometry test showed no motility at all so he said that I shouldn't be

> > experiencing any E spasms. He did give me a prescription for Levsin(sp)

so I

> > will try that to see if it helps.

> >

> > I will see him again in December or sooner if things worsen enough for

me to

> > even consider another botox injection. At that time I will get referred

to

> > the surgeon and he will take it from there. The surgeon he would refer

me to

> > is Roy Cobean.

> >

> > S

> >

> >

[Guest guest]

After having my Heller and Dor Fundo last July I think I was off for 5

weeks.As soon as I went back they expected me to carry out my regular duties

which meant lifting 80-100 pound cables out of shipping boxes and then hanging

them back on cable racks.I was concerned because they told me not to do it, but

I had no adverse effects luckily.

> > >

> > >

> > > From: s <ravenstorm2008@>

> > > Subject: Update

> > > " Achalasia Group " <achalasia >

> > > Date: Tuesday, June 28, 2011, 10:13 AM

> > >

> > >

> > >

> > >

> > >

> > >

> > > I saw my doctor this morning and I am definitely going to have surgery.

> He

> > > did tell me that there are no surgeons in Bangor Maine so the closest

> place

> > > is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> > > MaineCare isn't likely to pay for me to have surgery there if it is

> > > available at all in Maine. I am putting off surgery till after the first

> of

> > > the year so that I can finish college and at least enjoy the summer. He

> did

> > > say that I could have another botox injection if needed to help me get

> by

> > > until surgery.

> > >

> > > He was questioning the spasms I told him I was having. He told me my

> > > manometry test showed no motility at all so he said that I shouldn't be

> > > experiencing any E spasms. He did give me a prescription for Levsin(sp)

> so I

> > > will try that to see if it helps.

> > >

> > > I will see him again in December or sooner if things worsen enough for

> me to

> > > even consider another botox injection. At that time I will get referred

> to

> > > the surgeon and he will take it from there. The surgeon he would refer

> me to

> > > is Roy Cobean.

> > >

> > > S

> > >

> > >

[Guest guest]

Hi ,

When do you have a follow up with doctor?  Can you drive or ride a bike yet?

Priti

> Hi ,

>

> I would add my support to what Sandy wrote to . Between now and the

winter,

> the esophagus can continue to deteriorate and you can continue to struggle.

The

> operation will not ruin your summer, but it could make your winter more

> arduous.  Please consider not putting off the inevitable, for the chances are,

> that in the long run, you will be better off doing it now.

>

>

>

> ________________________________

> From: Sandy <sandycarroll@...>

> achalasia

> Sent: Wed, June 29, 2011 10:35:17 AM

> Subject: Re: Update

>

>   

> Hi ,

>

> If food is sticking often I'd suggest surgery earlier than later, so you don't

> stretch your esophagus much more. Not sure if my visualization is correct, but

> it is like stuffing a stretchy sock (or pantyhose if you are that old) It will

> keep stretching, but doesn't come back.

>

> About the spasms, if you doctor isn't aware that spasms are common and

> unpredictable with us, then he/she isn't that experienced. Our doctors don't

> really have any solutions for them, but they know we can have some serious

> spasms.

>

> If possible, at all, it is so much better to get to a surgeon that has done a

> significant number of myotomies. It is worth the hassle, in my opinion.

>

> If you opt for the surgery earlier, most of us are back to pretty functional

> activities, except for lifting, in a weekend. You have to be careful, but you

> can still go places and do things, and probably eat well.

>

>

> >

> >

> > From: s <ravenstorm2008@...>

> > Subject: Update

> > " Achalasia Group " <achalasia >

> > Date: Tuesday, June 28, 2011, 10:13 AM

> >

> >

> >

> >

> >

> >

> > I saw my doctor this morning and I am definitely going to have surgery. He

> > did tell me that there are no surgeons in Bangor Maine so the closest place

> > is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> > MaineCare isn't likely to pay for me to have surgery there if it is

> > available at all in Maine. I am putting off surgery till after the first of

> > the year so that I can finish college and at least enjoy the summer. He did

> > say that I could have another botox injection if needed to help me get by

> > until surgery.

> >

> > He was questioning the spasms I told him I was having. He told me my

> > manometry test showed no motility at all so he said that I shouldn't be

> > experiencing any E spasms. He did give me a prescription for Levsin(sp) so I

> > will try that to see if it helps.

> >

> > I will see him again in December or sooner if things worsen enough for me to

> > even consider another botox injection. At that time I will get referred to

> > the surgeon and he will take it from there. The surgeon he would refer me to

> > is Roy Cobean.

> >

> > S

> >

> >

[Guest guest]

Hi Priti-

I could drive as soon as I stopped taking painkillers. And I had my follow up

appt at 10 days instead of 14 just because of scheduling. So far so good.

On Jul 16, 2011, at 6:58 PM, Preeti Mahajan <priti19.mahajan@...> wrote:

> Hi ,

>

> When do you have a follow up with doctor? Can you drive or ride a bike yet?

>

> Priti

>

>

>

> > Hi ,

> >

> > I would add my support to what Sandy wrote to . Between now and the

winter,

> > the esophagus can continue to deteriorate and you can continue to struggle.

The

> > operation will not ruin your summer, but it could make your winter more

> > arduous. Please consider not putting off the inevitable, for the chances

are,

> > that in the long run, you will be better off doing it now.

> >

> >

> >

> > ________________________________

> > From: Sandy <sandycarroll@...>

> > achalasia

> > Sent: Wed, June 29, 2011 10:35:17 AM

> > Subject: Re: Update

> >

> >

> > Hi ,

> >

> > If food is sticking often I'd suggest surgery earlier than later, so you

don't

> > stretch your esophagus much more. Not sure if my visualization is correct,

but

> > it is like stuffing a stretchy sock (or pantyhose if you are that old) It

will

> > keep stretching, but doesn't come back.

> >

> > About the spasms, if you doctor isn't aware that spasms are common and

> > unpredictable with us, then he/she isn't that experienced. Our doctors don't

> > really have any solutions for them, but they know we can have some serious

> > spasms.

> >

> > If possible, at all, it is so much better to get to a surgeon that has done

a

> > significant number of myotomies. It is worth the hassle, in my opinion.

> >

> > If you opt for the surgery earlier, most of us are back to pretty functional

> > activities, except for lifting, in a weekend. You have to be careful, but

you

> > can still go places and do things, and probably eat well.

> >

> >

> > >

> > >

> > > From: s <ravenstorm2008@...>

> > > Subject: Update

> > > " Achalasia Group " <achalasia >

> > > Date: Tuesday, June 28, 2011, 10:13 AM

> > >

> > >

> > >

> > >

> > >

> > >

> > > I saw my doctor this morning and I am definitely going to have surgery. He

> > > did tell me that there are no surgeons in Bangor Maine so the closest

place

> > > is Portland Maine. He did recommend Boston or Dartmouth but agrees that

> > > MaineCare isn't likely to pay for me to have surgery there if it is

> > > available at all in Maine. I am putting off surgery till after the first

of

> > > the year so that I can finish college and at least enjoy the summer. He

did

> > > say that I could have another botox injection if needed to help me get by

> > > until surgery.

> > >

> > > He was questioning the spasms I told him I was having. He told me my

> > > manometry test showed no motility at all so he said that I shouldn't be

> > > experiencing any E spasms. He did give me a prescription for Levsin(sp) so

I

> > > will try that to see if it helps.

> > >

> > > I will see him again in December or sooner if things worsen enough for me

to

> > > even consider another botox injection. At that time I will get referred to

> > > the surgeon and he will take it from there. The surgeon he would refer me

to

> > > is Roy Cobean.

> > >

> > > S

> > >

> > >

[Guest guest]

Hi -

You and your son are really going through a rough time. I wish the medical

staff could offer you some relief or at least sympathy. How awful.

A motility test shows how much peristalsis (if any) is happening. Those are the

wave like involuntary muscle contractions that push things down the esophagus.

It is also called a manometry test. For me, I had no peristalsis -- so

swallowing is a combination of the voluntary muscles at top and gravity.

On Aug 16, 2011, at 9:36 AM, Monicqua wrote:

> Good morning. To get right down to it, last week was terrible for my son and

I. On Monday, I left work early cause he called me saying that he was vomiting.

That night around 8 pm he was admitted in the hospital since I took him to the

ER earlier that day. He didnt eat anything until Tuesday evening around 7 pm and

then he had a chest x-ray on Wednesday, the doctors nor the nurses did anything

to comfort us. It was like we were there just living while waiting on them to

say something or do something. Finally Wednesday at 6:30 pm the surgeon that I

had been requesting to see came to the room. We talked about the options and

what he thought was best, he did the heller on my son in 2007 only opening the

top of his esophagus, now he wants to do the same to the bottom. Dr. Schindler

also suggested I go ahead with the dilation on Thursday for some relieve for now

at 40 cm ( the adult level). That took place on at noon followed by a barium

swallow to make

> sure no holes were in the esophagus. Friday morning my son was vomiting again,

he only had jello and gatarade to drink but that came up because the barium was

still sitting there. By Friday evening after another x-ray it showed that it had

moved down into his intestines good sign. Saturday we left the hospital waiting

now for a motility test and the follow up visit next week. What does the

motility test prove? His esophagus is already damaged from 17 dilations.

>

> Monicqua

>

>