regarding lipomas

[Guest guest]

Hi Steve,

For we started to notice them when he was about nine years old. We

weren't sure what they were at first. They thought it was lymphangianoma sp?

which scared us to death. But when they did his first surgery they decided

it was just a lipoma. It was affecting his ability to move his arms, so it

was thought to be possibly wrapped around his spinal column but fortunately it

was not.. By the time of the removal it was about 3 inches wide by about 6

inches long and raised about 3 inches off the top of his skin, right across

the top part of his back, shoulder area connecting to his neck. He had a hard

time moving his head. He has a length heteroplasmy at NT471 and 2 other

length variants. It grew back within 4 months time and was removed a second

time, it is currently re growing again. The problem with it is that he suffers

from Complex regional pain syndrome and the surgeries send him into pain that

is so severe that it is worse than him dealing with the lipoma. We had to

turn to narcotics the last removal to help him coup with the pain which I

didn't like at all! So we really have to think about it before we have this

next

one removed. If you touch the back of his neck it sends him through the

roof. He has a hypersensitivity to the removal site. At this point, we have

not

noticed any other lipomas on him, but he is a very big boy for his age so it

is a bit hard to tell. He unfortunatly weighs 235 pounds and is 13 years old

5 ft 5 inches, a big boy! There is an area on his left leg we are watching

that I am afraid is a lipoma growing, but we shall see. I can't imagine him

dealing with multiple areas due to the CRPS that he deals with. I hope this

answered your questions, if not just ask again I will try to answer them as

best I can.

O.

Mom to Kira almost 16 yrs- Mitochondrial Myopathy- Maternally Inherited

Dysautonomia-Cyclic Vomiter-Complex Regional Pain Syndrome- ASD/VSD mitral valve

repair 2000-G tube 1999

13yrs- Mitochondrial Myopathy-Maternally Inherited Dysautonomia-

Complex Regional Pain Syndrome- Lipoma removals 2004/2005 upper neck area.

Krisalynn 10 yrs- Mitochondrial Myopathy Maternally Inherited Dysautonomia-

Complex Regional pain Syndrome set off by compound break of arm

2005-hypertonia of the bladder

Enrique- The dad of the group!

[Guest guest]

Hi

My attention jumped to ' " Lipoma removals 2004/2005 upper neck area " . Do

you know anything more about what may have caused these lipomas? Can you say

anything more about when they began, how big, etc.? Or any more about his

diagnosis, especially any mtDNA or biopsy/ETC/OXPHOS tests?

I have MSL (multiple symmetrical lipomatosis) and MERRF A8344G, and lots of

lipomas including the upper neck area. I've posted here in the past (search

" lipomatosis " if you wish) but have not encountered anyone with such lipomas on

this list. Hence my interest. BTW I've had lipomas removed (they grow back

within WEEKS) including some major operations, but never more than the usual

wound-recovery pain. How long did the pain last, for ?

Steve D.

Re: To Enrique

Hi Shayna,

This is the mom to the group with Complex Regional Pain Syndrome,

Enrique doesn't do a lot of the medical stuff for our family usually. I sent

the

post so I thought it would be ok to answer for him. The type of pain they

get most often is a burning nerve like pain. It can be very intense, they do

have the muscle pain as well where they just ache for no reason at all

really, but it is my understanding that the burning nerve like pain is more

the CRP

from Dr. Boles.

had to use narcotics at one point to control his pain. We went

through pain management at Children's La to try and help him. It was awful

pain that he had at that point from the lipomas being removed, he could hardly

stand the pain. It is very hard to watch them be in such pain when it flairs

up.

Kira will get hot burning pain and her arms will swell up and will be

really red and hot to the touch. We use the Ibuprophen 600-800 mg and sleep

for her. Sometimes heat/cold to it will relieve the pain but not always.

As for Krisalynn, hers wasn't kicked off until she compound broke her arm.

It swelled really bad in the cast and the burning pain was almost intolerable

for her. The doctor from Loma accused her of being a baby and over

reacting, and told me it was just a compound break and to not baby her, until

I

could get him to talk to Dr Boles and have him explain to this idiot what

was going on.( I am not angry at this doctor now am I LOL) We iced her cast

with a continuous ice machine that she kept on for 8 hours at a time and gave

her anti swelling medication along with codeine., split her cast to allow for

the swelling and of course elevated it. It flairs up every once in awhile for

no apparent reason now on and off and for the most part icing it and high

amounts of ibuprohen seem to help her. We have not found any magical

treatment per say for it although Dr. Boles is trying. My kids all take

amitriptaline as well which helps with the dysautonomia, which could in turn

help with

the CRP, but I am not totally sure on that.

My family was in Dr. Bole's study which he presented at the symposium. I

have not seen what was published as of yet but hope to. I don't know if he

has it out as a full publication or not, but I will ask him and let you know.

If we can answer any more questions just let me know. It is a crazy thing

to deal with, I can tell you that!

O

Mom to Kira almost 16 yrs- Mitochondrial Myopathy- Maternally Inherited

Dysautonomia-Cyclic Vomiter-Complex Regional Pain Syndrome- ASD/VSD mitral

valve

repair 2000-G tube 1999

13yrs- Mitochondrial Myopathy-Maternally Inherited Dysautonomia-

Complex Regional Pain Syndrome- Lipoma removals 2004/2005 upper neck area.

Krisalynn 10 yrs- Mitochondrial Myopathy Maternally Inherited Dysautonomia-

Complex Regional pain Syndrome set off by compound break of arm

2005-hypertonia of the bladder