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

January 2, 2004

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?

January 2, 2004

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

January 3, 2004

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

>

January 3, 2004

Hi Laurie,

Wow, looks like you haven't been having any fun either..sorry to hear

that. Thanks for sharing about the Propofol reaction. Puts a face

to the cautions.

Adam

> 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

>

January 3, 2004