[lorigood243]

my swelling is just crushing my insides...the doctors arent offering any way to help me.
i am calling around to the neurologist offices to see who treats rsd and if they would try the mannitol drug on me. but then i was hinking if i had major liposuction done...would it kill me or could it really help me.

i know we have some medical folks here, i would appreciate your help.
my pain is still bearable by the swelling is getting overwhelming. what if it doesnt stop...whats going to happen to me? im trying not to panic..i just wish i knew that there was a plan to help me. my primary care doctor wouldnt return my calls this week...i called 4 imes and his secretary said she was sorry ..he told her to tell me to call the new pain mgt doctor. it really pset me that he wouldnt call me. i was just in the hospital 2 weeks ago because i coulndt take the pain at home anymore i was a mess!

sorry for rambling...i just dont know where to turn to
i appreciate your help
Lori

[gramE]

liposuction takes out tissue, not water. Maybe after getting the swelling down, but I doubt anyone would consider you before.

[lorigood243]

oh i see i didnt know that...

thanks

[Jomar]

I'm sorry but I'm still confused.
Or maybe I missed the info somewhere.

Do the dr s say it is fluid building up that causes the swelling, or some other type of tissue overgrowth? Or they have no clue....

If excess fluid is the case why not insert a "drain" of sorts?
Or a "water pill" or something to see if it helps.

If tissue growth,
I can see why they might not want to do exploratory surgery due to possible spread, but if it is pretty much body wide already... it might be worth it to ease your discomfort.

[lorigood243]

hi JoMar

the swelling is in each cell, so a drain wont work because its not a pool of fluid. regular water pills takes water off in a different way..i am told through your vascular system where swelling affects your whole body. mine affects just where i had surgery and the rsd kicked in. some drs have said that my body keeps sending white blood cells to the area because it thinks there is an infection, but there isnt an infection so white blood cells keep coming to heal the area. i have whats called piited edema..you an press your whole hand into my stomch and leave a deep hand impression. its so horrible and uncomfortable. i am getting desperate for help. i am going to find a nuerologist next week to see if they can help me with the diuretic i found called mannitol. it acts differently then regular water pills and has been used for rsd inflammation and it works! im hopeful. it has to be given in the hospital by IV

Originally Posted by Jo*mar

I'm sorry but I'm still confused.
Or maybe I missed the info somewhere.

Do the dr s say it is fluid building up that causes the swelling, or some other type of tissue overgrowth? Or they have no clue....

If excess fluid is the case why not insert a "drain" of sorts?
Or a "water pill" or something to see if it helps.

If tissue growth,
I can see why they might not want to do exploratory surgery due to possible spread, but if it is pretty much body wide already... it might be worth it to ease your discomfort.

[Jomar]

If the MDs aren't able to offer much else, I don't know if your ins would cover alternative treatments..but
have you considered a naturopath, and/or I don't know if acupuncture would be too invasive with the needles, and if you did try either one it would have to be experts in the field of course.

I don't know if many RSDers have tried naturopathy care as a treatment..I don't recall it being mentioned very much at all.

but i would look into it if I was in this situation and MDs weren't responsive with care or treatments...

[lorigood243]

thank you for thinking so much about me today JoMar, i appreciate you!

about 9 months ago when i was diagnosed with RSD is was seeing an accupuncurist but wasnt seeing any change or benefit after a couple months and then i just couldnt afford it anymore, when i first got sick 5 years ago i was desperate or help and went the whole naturopath way for about 9 months to change no help, but i tried. i am just going to pray that i can find a neurologist that will try the mannitol on me. i found several articles that my friend Pat just sent me where the drs are successful treating rsd patients with mannitol. so i am hoping to find one that will give it to me. its just a diuretic, its not like its narcotics.
thanks again!
Lori

[daniella]

What type of doctor suggested this? I have never heard of this treatment and personally would never try it. This could lead to so many problems in my eyes.
As for swelling I have that now but it goes in phases of extreme and is just in my rsd areas and why I feel a diuretic for me would not help. I do feel meds that help with the nerves could help settle the swelling. I remember a video I watched about ketamine infusions and with that it helped for ex the sores people got as well. I wonder if ketamine would help your symptoms? Feel better

[lorigood243]

thanks Daniella

many years ago before i knew i had RSD...a plastic surgeon cut me hip to hop to remove all the swollen tissue..at that time he took off 25lbs. i became deathly ill after that surgery...i went code blue while i was in recovery..and lots of bad health problems occured, i am so miserable that i was thinking what if i had liposuction...because could it remove all the cells that are swelling up and then i could have some relief. i have over 80lbs of swelling on my abdomen, its crushing me..and so far no way to get relief. so even if the liposuction tool might hurt some of my nerves...if they could remove all this swelling, i think i could deal with the pain, hell i deal with pain as it is.
but no doctor reccomended this, it was my own idea kicking it around.
its probably a bad idea,,i am an inch from desperate. i am worrying about getting sepsis..will the doctors be able to save me if i get sepsis. i dont want to die from this. i need a doctor to help me. i am going to call aq bunch of neurologists tomorow and find a new internist too. i have a busy day tomorrow.
blessings
Lori

Originally Posted by daniella

What type of doctor suggested this? I have never heard of this treatment and personally would never try it. This could lead to so many problems in my eyes.
As for swelling I have that now but it goes in phases of extreme and is just in my rsd areas and why I feel a diuretic for me would not help. I do feel meds that help with the nerves could help settle the swelling. I remember a video I watched about ketamine infusions and with that it helped for ex the sores people got as well. I wonder if ketamine would help your symptoms? Feel better

[daniella]

I just responded to your neuro post.
I know when things get so bad one may try a procedure etc that may not be the best for them because of being so desperate. I would never in a million years get any type of plastic or surgery even like botox which some use for pain. I think there is too much risk in damaging other nerves or flaring the current rather then settling it down.
I think it is a good idea to see a neurologist. Have you also thought of maybe going to a hospital where different specialties look at your condition like Mayo or John Hopkins?