Re: Re: Whe is there adult coordinated care for MItos? / Gallbladder

[Guest guest]

Adam,

I am still eating low fat because fat bothers me. I actually have more

bile now in my stomach since the surgery. I'm not sure why and that

sure doesn't mean that you would have the same thing.

Can you postpone surgery and maybe have it done at a larger hospital

that would be more willing to work with you? Anesthesia folks aren't

used to having to "change" the way they do things. I had to cancel a

colonoscopy because the anesthesiologist refused to even look at the

mito precautions. I had even already spent the night in the hospital

and was prepped for the procedure. He refused to treat me

appropriately, so I got up off the table and left. The poor surgeon

just stood there and didn't know what to say or do.

AdamM321@... wrote:

Hi ,

I wonder why you are still eating low fat? It was my understanding

that the right fat in the diet was important for people who have mito

problems. ?? I have gone for many months on a low fat, almost no fat

diet, and low protein. I feel a major difference when I can get fat

and protein in my diet.

I had surgery for another problem back in March of 2003. I wasn't

diagnosed at that point with the mito problems. I just got my record

of which anesthesia they used. They used 10 different meds, which

surprised me. Two were to prevent nausea, one was for blood pressure,

two were for pain and the rest were anesthesia. I did have Propofol.

I did have problems after that surgery with the muscles in my chest and

my throat. for a month after that. Also some nuerological problems.

The trouble with that article is that it tells you what to avoid, but

it didn't tell you what to use instead. The anesthesiologist said

there were only two meds on the list that could be changed. He gave me

the name of two substitutes they could use. How do I know that I won't

have other problems with those, since I never had them? It is very

frustrating.

My surgery is scheduled next week, and I am considering postponing it

for a couple of reasons.

Thanks for the input, I appreciate it.

Adam

In a message dated 1/1/2004 9:24:32 AM Eastern Standard Time,

writes:

Message: 5

Date: Wed, 31 Dec 2003 15:21:16 -0800

Subject: Re: Where is there adult coordinated care for Mitos?

I had a good mito doc that the anesthesia department consulted with. I

haven't really changed much of my eating habits since the surgery. I

always kept to a rather low fat diet anyway. I had gallstones for

about

8 or 9 years before they became bothersome.

I would at the very minimum make sure that they don't use ringer's

lactate, take MH precautions and don't use propofol. If you can get

them to order the carnitor by IV too, it should help. Have you had

surgeries before that you had trouble with? If so, get the anesthesia

report from that surgery and tell them you had problems with what was

used. It is YOUR body, so you have the right to expect to be treated

to

have the outcome be the best for YOU!

When is surgery scheduled?

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the

postings and consult with their physicians regarding changes in their

own treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

[Guest guest]

Adam

When I had my surgery a year ago and met with two different

anesthesiologists, I was told that propofol was used because people didn't

get melignant hypothermia. Those that they used and were approved by my mito

doc were ones that increased the risk of MH, so they just had the MH cart in

the operating room. I also had an awake intubation due some previous

problems. If you have myoclonus, you should not succyscholing (wrong

spelling)

laurie

> From: AdamM321@...

> Reply-To:

> Date: Fri, 2 Jan 2004 08:48:02 EST

> To:

> Subject: Re: Whe is there adult coordinated care for MItos? /

> Gallbladder

>

> Hi ,

>

> I wonder why you are still eating low fat? It was my understanding that the

> right fat in the diet was important for people who have mito problems. ?? I

> have gone for many months on a low fat, almost no fat diet, and low protein.

> I

> feel a major difference when I can get fat and protein in my diet.

>

> I had surgery for another problem back in March of 2003. I wasn't diagnosed

> at that point with the mito problems. I just got my record of which

> anesthesia they used. They used 10 different meds, which surprised me. Two

> were to

> prevent nausea, one was for blood pressure, two were for pain and the rest

> were

> anesthesia. I did have Propofol. I did have problems after that surgery with

> the muscles in my chest and my throat. for a month after that. Also some

> nuerological problems.

>

> The trouble with that article is that it tells you what to avoid, but it

> didn't tell you what to use instead. The anesthesiologist said there were

> only

> two meds on the list that could be changed. He gave me the name of two

> substitutes they could use. How do I know that I won't have other problems

> with

> those, since I never had them? It is very frustrating.

>

> My surgery is scheduled next week, and I am considering postponing it for a

> couple of reasons.

>

> Thanks for the input, I appreciate it.

>

> Adam

>

>

> In a message dated 1/1/2004 9:24:32 AM Eastern Standard Time,

> writes:

>

>> Message: 5

>> Date: Wed, 31 Dec 2003 15:21:16 -0800

>>

>> Subject: Re: Where is there adult coordinated care for Mitos?

>>

>> I had a good mito doc that the anesthesia department consulted with. I

>> haven't really changed much of my eating habits since the surgery. I

>> always kept to a rather low fat diet anyway. I had gallstones for about

>> 8 or 9 years before they became bothersome.

>>

>> I would at the very minimum make sure that they don't use ringer's

>> lactate, take MH precautions and don't use propofol. If you can get

>> them to order the carnitor by IV too, it should help. Have you had

>> surgeries before that you had trouble with? If so, get the anesthesia

>> report from that surgery and tell them you had problems with what was

>> used. It is YOUR body, so you have the right to expect to be treated to

>> have the outcome be the best for YOU!

>>

>> When is surgery scheduled?

>>

>>

>

>

[Guest guest]

adamm4321 wrote:

Hi Laurie,

I talked to the anesthesiologist and he didn't say that to me. I am thinking I need to have the mito specialist talk to the anesthesiologist rather than my trying to talk to him. I don't understand the ins and outs of it and the whole MH thing is confusing to me. I don't know if I am at risk for that. The problem is the surgery was to be at a large hospital in Boston, not at the NEMC. So it is hard for my mito to talk to people at another hospital, but I am going to try to arrange it on Monday. The holiday season doesn't help.

So they continued the intubation after you were awake, Laurie? That must have been scary. Did you have breathing problems before? I had surgery in March and had choking for weeks afterward. I kept choking on my saliva and food and drink. It would start coughing fits, which were very painful with stitches healing. That happened to me about 10 times a day and would wake me up in the night. Very scary. I had very painful weak muscles in my upper body for a month. [i normally have them but they were greatly exacerbated.] I had neurological pain down both legs for awhile. I also had hyperglycemic problems too, and developed pneumonia. I woke up with teeth rattling shaking that lasted for about 6 hours. They told me that lots of people have shaking, but I have my doubts that everyone has shaking like that. I had not been diagnosed with mito at the time. No one knew what to make of me. Sounds like autonomic issues.

Needless to say it was not a good experience and I am not eager to have surgery again. If I didn't have to I wouldn't. I have had gallbladder problems for a long time and they are beyond manageable. I have been barely eating more than liquids and pureed veggies and fruit for 2 months.

What is myoclonus? Muscle spasms of small muscle fibers mostly. What is succyscholing? succinylcholine is a depolarizing drug, muscle relaxant

Adam

Adam

When I had my surgery a year ago and met with two different

anesthesiologists, I was told that propofol was used because people

didn't> get melignant hypothermia. Those that they used and were approved by my mito> doc were ones that increased the risk of MH, so they just had the MH cart in> the operating room. I also had an awake intubation due some previous problems. If you have myoclonus, you should not succyscholing (wrong

spelling)

laurie

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Re: Whe is there adult coordinated care for MItos? / Gallbladder

Hi Laurie,I talked to the anesthesiologist and he didn't say that to me. I am thinking I need to have the mito specialist talk to the anesthesiologist rather than my trying to talk to him. I don't understand the ins and outs of it and the whole MH thing is confusing to me. I don't know if I am at risk for that. The problem is the surgery was to be at a large hospital in Boston, not at the NEMC. So it is hard for my mito to talk to people at another hospital, but I am going to try to arrange it on Monday. The holiday season doesn't help.So they continued the intubation after you were awake, Laurie? That must have been scary. Did you have breathing problems before? I had surgery in March and had choking for weeks afterward. I kept choking on my saliva and food and drink. It would start coughing fits, which were very painful with stitches healing. That happened to me about 10 times a day and would wake me up in the night. Very scary. I had very painful weak muscles in my upper body for a month. [i normally have them but they were greatly exacerbated.] I had neurological pain down both legs for awhile. I also had hyperglycemic problems too, and developed pneumonia. I woke up with teeth rattling shaking that lasted for about 6 hours. They told me that lots of people have shaking, but I have my doubts that everyone has shaking like that. I had not been diagnosed with mito at the time. No one knew what to make of me. Needless to say it was not a good experience and I am not eager to have surgery again. If I didn't have to I wouldn't. I have had gallbladder problems for a long time and they are beyond manageable. I have been barely eating more than liquids and pureed veggies and fruit for 2 months.What is myoclonus? What is succyscholing?Adam > Adam> > When I had my surgery a year ago and met with two different> anesthesiologists, I was told that propofol was used because people didn't> get melignant hypothermia. Those that they used and were approved by my mito> doc were ones that increased the risk of MH, so they just had the MH cart in> the operating room. I also had an awake intubation due some previous problems. If you have myoclonus, you should not succyscholing (wrong> spelling)> > laurieMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

OK.. I am seeing Boston here. You can consult with Dr Mark Korson NEMC or Dr Sims at Mass General. Mass General has dealt with Mito patients and Dr Korson has a Mito Clinic in Boston. Their information is online and I know Dr Korson will help you because he was very helpful when we needed him for my grandson Branden even though Branden was not his patient.

Let me know if I can help you even more.

Adam - You are actually in a good area.

Alice

Re: Whe is there adult coordinated care for MItos? / Gallbladder

Hi Laurie,I talked to the anesthesiologist and he didn't say that to me. I am thinking I need to have the mito specialist talk to the anesthesiologist rather than my trying to talk to him. I don't understand the ins and outs of it and the whole MH thing is confusing to me. I don't know if I am at risk for that. The problem is the surgery was to be at a large hospital in Boston, not at the NEMC. So it is hard for my mito to talk to people at another hospital, but I am going to try to arrange it on Monday. The holiday season doesn't help.So they continued the intubation after you were awake, Laurie? That must have been scary. Did you have breathing problems before? I had surgery in March and had choking for weeks afterward. I kept choking on my saliva and food and drink. It would start coughing fits, which were very painful with stitches healing. That happened to me about 10 times a day and would wake me up in the night. Very scary. I had very painful weak muscles in my upper body for a month. [i normally have them but they were greatly exacerbated.] I had neurological pain down both legs for awhile. I also had hyperglycemic problems too, and developed pneumonia. I woke up with teeth rattling shaking that lasted for about 6 hours. They told me that lots of people have shaking, but I have my doubts that everyone has shaking like that. I had not been diagnosed with mito at the time. No one knew what to make of me. Needless to say it was not a good experience and I am not eager to have surgery again. If I didn't have to I wouldn't. I have had gallbladder problems for a long time and they are beyond manageable. I have been barely eating more than liquids and pureed veggies and fruit for 2 months.What is myoclonus? What is succyscholing?Adam

[Guest guest]

I cheated. I got it off the Dr. Cohen's article.

Laureta Fitzgerald wrote:

Thanks . I knew you would know how to spell it.

laurie

Reply-To:

Date: Fri, 02 Jan 2004 12:48:14 -0800

To:

Subject: Re: Re: Whe is there adult coordinated care for MItos? /

Gallbladder

adamm4321 wrote:

Hi Laurie,

I talked to the anesthesiologist and he didn't say that to me. I am

thinking I need to have the mito specialist talk to the

anesthesiologist rather than my trying to talk to him. I don't

understand the ins and outs of it and the whole MH thing is confusing

to me. I don't know if I am at risk for that.

The problem is the surgery was to be at a large hospital in Boston,

not at the NEMC. So it is hard for my mito to talk to people at

another hospital, but I am going to try to arrange it on Monday. The

holiday season doesn't help.

So they continued the intubation after you were awake, Laurie? That

must have been scary. Did you have breathing problems before? I had

surgery in March and had choking for weeks afterward. I kept choking

on my saliva and food and drink. It would start coughing fits, which

were very painful with stitches healing. That happened to me about

10 times a day and would wake me up in the night. Very scary. I had

very painful weak muscles in my upper body for a month. [i normally

have them but they were greatly exacerbated.] I had neurological

pain down both legs for awhile. I also had hyperglycemic problems

too, and developed pneumonia.

I woke up with teeth rattling shaking that lasted for about 6 hours.

They told me that lots of people have shaking, but I have my doubts

that everyone has shaking like that. I had not been diagnosed with

mito at the time. No one knew what to make of me. Sounds like autonomic

issues.

Needless to say it was not a good experience and I am not eager to

have surgery again. If I didn't have to I wouldn't. I have had

gallbladder problems for a long time and they are beyond manageable.

I have been barely eating more than liquids and pureed veggies and

fruit for 2 months.

What is myoclonus? Muscle spasms of small muscle fibers mostly. What is

succyscholing? succinylcholine is a depolarizing drug, muscle relaxant

Adam

Adam

When I had my surgery a year ago and met with two different

anesthesiologists, I was told that propofol was used because people

didn't> get melignant hypothermia. Those that they used and were

approved by my mito> doc were ones that increased the risk of MH, so

they just had the MH cart in> the operating room. I also had an awake

intubation due some previous problems. If you have myoclonus, you

should not succyscholing (wrong

spelling)

laurie

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Adam

When I had surgery for a knee arthoscope, I was given Propofol and

Succyntocholin (closer, but still not spelled correctly). My entire body

went into hyper-extension, so they couldn't put the ET tube in. They had to

give me massive doses of a muscle relaxant to get it in and then I didn't

come out of the anesthesia. I was still intubated when I awoke due to very

slow breathing on my own (probably due to the muscle relaxants). They told

me they would put the tube in while I was still awake as a precaution. It

really wasn't that bad. The numbed my throat which was the worse part and

once they got a small enough tube, it went right in. They talked to me and

explained everything as it was done, so I was comfortable with it.

Myoclonus is when a body part jumps for no reason. I have had my limbs

(including fingers and toes) do this for several years. I've recently had my

entire body jump and now get the same thing internally.

laurie

>

> Reply-To:

> Date: Fri, 2 Jan 2004 13:58:42 -0700

> To: < >

> Subject: Re: Re: Whe is there adult coordinated care for MItos? /

> Gallbladder

>

>

> Re: Whe is there adult coordinated care for MItos? /

> Gallbladder

>

>

> Hi Laurie,

>

> I talked to the anesthesiologist and he didn't say that to me. I am

> thinking I need to have the mito specialist talk to the

> anesthesiologist rather than my trying to talk to him. I don't

> understand the ins and outs of it and the whole MH thing is confusing

> to me. I don't know if I am at risk for that.

>

> The problem is the surgery was to be at a large hospital in Boston,

> not at the NEMC. So it is hard for my mito to talk to people at

> another hospital, but I am going to try to arrange it on Monday. The

> holiday season doesn't help.

>

> So they continued the intubation after you were awake, Laurie? That

> must have been scary. Did you have breathing problems before? I had

> surgery in March and had choking for weeks afterward. I kept choking

> on my saliva and food and drink. It would start coughing fits, which

> were very painful with stitches healing. That happened to me about

> 10 times a day and would wake me up in the night. Very scary. I had

> very painful weak muscles in my upper body for a month. [i normally

> have them but they were greatly exacerbated.] I had neurological

> pain down both legs for awhile. I also had hyperglycemic problems

> too, and developed pneumonia.

>

> I woke up with teeth rattling shaking that lasted for about 6 hours.

> They told me that lots of people have shaking, but I have my doubts

> that everyone has shaking like that. I had not been diagnosed with

> mito at the time. No one knew what to make of me.

>

> Needless to say it was not a good experience and I am not eager to

> have surgery again. If I didn't have to I wouldn't. I have had

> gallbladder problems for a long time and they are beyond manageable.

> I have been barely eating more than liquids and pureed veggies and

> fruit for 2 months.

>

> What is myoclonus? What is succyscholing?

>

> Adam

>

>

>

>

>

>> Adam

>>

>> When I had my surgery a year ago and met with two different

>> anesthesiologists, I was told that propofol was used because people

> didn't> get melignant hypothermia. Those that they used and were

> approved by my mito> doc were ones that increased the risk of MH, so

> they just had the MH cart in> the operating room. I also had an awake

> intubation due some previous problems. If you have myoclonus, you

> should not succyscholing (wrong

>> spelling)

>>

>> laurie

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

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

>

[Guest guest]

Thanks . I knew you would know how to spell it.

laurie

>

> Reply-To:

> Date: Fri, 02 Jan 2004 12:48:14 -0800

> To:

> Subject: Re: Re: Whe is there adult coordinated care for MItos? /

> Gallbladder

>

>

>

> adamm4321 wrote:

>

>> Hi Laurie,

>>

>> I talked to the anesthesiologist and he didn't say that to me. I am

>> thinking I need to have the mito specialist talk to the

>> anesthesiologist rather than my trying to talk to him. I don't

>> understand the ins and outs of it and the whole MH thing is confusing

>> to me. I don't know if I am at risk for that.

>>

>> The problem is the surgery was to be at a large hospital in Boston,

>> not at the NEMC. So it is hard for my mito to talk to people at

>> another hospital, but I am going to try to arrange it on Monday. The

>> holiday season doesn't help.

>>

>> So they continued the intubation after you were awake, Laurie? That

>> must have been scary. Did you have breathing problems before? I had

>> surgery in March and had choking for weeks afterward. I kept choking

>> on my saliva and food and drink. It would start coughing fits, which

>> were very painful with stitches healing. That happened to me about

>> 10 times a day and would wake me up in the night. Very scary. I had

>> very painful weak muscles in my upper body for a month. [i normally

>> have them but they were greatly exacerbated.] I had neurological

>> pain down both legs for awhile. I also had hyperglycemic problems

>> too, and developed pneumonia.

>>

>> I woke up with teeth rattling shaking that lasted for about 6 hours.

>> They told me that lots of people have shaking, but I have my doubts

>> that everyone has shaking like that. I had not been diagnosed with

>> mito at the time. No one knew what to make of me. Sounds like autonomic

>> issues.

>>

>> Needless to say it was not a good experience and I am not eager to

>> have surgery again. If I didn't have to I wouldn't. I have had

>> gallbladder problems for a long time and they are beyond manageable.

>> I have been barely eating more than liquids and pureed veggies and

>> fruit for 2 months.

>>

>> What is myoclonus? Muscle spasms of small muscle fibers mostly. What is

>> succyscholing? succinylcholine is a depolarizing drug, muscle relaxant

>>

>> Adam

>>

>>

>>

>>

>>

>>

>>

>>> Adam

>>>

>>> When I had my surgery a year ago and met with two different

>>> anesthesiologists, I was told that propofol was used because people

>>>

>>>

>> didn't> get melignant hypothermia. Those that they used and were

>> approved by my mito> doc were ones that increased the risk of MH, so

>> they just had the MH cart in> the operating room. I also had an awake

>> intubation due some previous problems. If you have myoclonus, you

>> should not succyscholing (wrong

>>

>>

>>> spelling)

>>>

>>> laurie

>>>

>>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained herein

>> are not necessarily those of the list moderators. The author of this e mail

>> is entirely responsible for its content. List members are reminded of their

>> responsibility to evaluate the content of the postings and consult with their

>> physicians regarding changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends one is

>> automatically moderated or removed depending on the severity of the attack.

>>

>>

>>

[Guest guest]

You are correct that the full benefits of the Mito clinic are in the planning stages as that are to include live biopsies which are not yet done there but what he has there is far better than you will find in most cities in the US. Doctors who know anything about Mito are few and far between. Dr Korson literally saved the life of my grandson during a very serious episode so I hold him in high regard. He will be our guest in the MDA chat in May and I'm really looking forward to that.

Since you are a patient with his office, you might be able to send him an e mail and ask him to provide you with some help. If this isn't possible, I would call and explain that you have a medical emergency and need a consult. The worst thing they can do is turn you down. You might get lucky though and get a positive response.

Dr Sims would be my second choice and I know that she has adult mito patients who go to Mass General for care. If your surgery is at Mass General - and I think I picked that up from your original mention of a "large" hospital in Boston - not NEMC - I would definitely get her into the picture.

Good luck with this Adam. Anytime any of us face surgery, it's scary. We have to be our own advocates. I know my last surgery - we had the pre-op with the anesthesia department and gave them the information about the diagnosed MH family member. We explained the mito protocol but when I was being preped for surgery, my daughter noticed that they had hung ringers and immediately told them that I couldn't have them. I was not even thinking about looking at the IV pole at that time so I was very glad she was there. I hope you have lapriscopic surgery since it is so much easier on your system.

Please keep us informed on your progress with this. FYI - I am from New England - Rhode Island to be exact - and if I were still there, I would see Dr Korson. I am a patient of Dr Cohen and still consider him my Mito doctor even though I now live in New Mexico.

Alice

Hi Alice,Thanks for that info. I am already familiar with Dr Korson. I am working with someone else in his department as he has a 5 month wait for an appt. As far as having a clinic, I believe that is in the planning stages and not a reality at this point. I will look into the doc at Mass General, to see if that would be another option.Thanks so much...Adam

[Guest guest]

Adam

I think Alice made a good suggestion. My sister ( on list) always try

to be at each others surgery to pick up things like ringers being hung. This

is especially important during the recovery period when you can't advocate

for yourself.

Another anesthesia option is a spinal.

laurie

>

> Reply-To:

> Date: Sat, 03 Jan 2004 12:52:16 -0000

> To:

> Subject: Re: Whe is there adult coordinated care for MItos? /

> Gallbladder

>

> Hi Alice,

>

> Thanks for that info. I am already familiar with Dr Korson. I am

> working with someone else in his department as he has a 5 month wait

> for an appt. As far as having a clinic, I believe that is in the

> planning stages and not a reality at this point. I will look into

> the doc at Mass General, to see if that would be another option.

>

> Thanks so much...

> Adam

>

>

>

>

>> OK.. I am seeing Boston here. You can consult with Dr Mark Korson

> NEMC or Dr Sims at Mass General. Mass General has dealt

> with Mito patients and Dr Korson has a Mito Clinic in Boston. Their

> information is online and I know Dr Korson will help you because he

> was very helpful when we needed him for my grandson Branden even

> though Branden was not his patient.

>>

>> Let me know if I can help you even more.

>>

>> Adam - You are actually in a good area.

>>

>> Alice

>>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

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

>

>