Just Diagnosed

[Guest guest]

My daughter, who is 22 and has had symtoms we were told was due to CFS since she

was 9, was just recently diagnosed as having a Chiari 1 Malformation by Dr. Dan

Heffez of the Chicago Institute of Neurosurgery and Neurosciences. Of course,

it is a tentative diagnosis based solely on the MRI's of her head and cervical

spine. I was told that Dr. Heffez would want her to come to Chicago for 2 days

of extensive out-patient testing to confirm the diagnosis. I'm very interested

in hearing from anyone who has had any experience with Dr. Heffez in particular,

but would also appreciate greatly hearing from anyone who has had surgery with

any doctor for this condition and to find out how you are doing and if you would

recommend it to other chiari patients. My son has not had MRI's done as yet,

but also suffers from the same symptoms as his sister and most likely he also

has a chiari as well. I'm quite sure that my husband had this condition, but

since he is deceased, I can only guess. From what I've been told by my

sister-in-law about my husband's mother (who I never knew) she also had similar

symptoms. I'm convinced that this is a genetic malformation that is passed on

from one generation to the next...not necessarily affecting every off-spring.

My one daughter shows no signs of the condition and I pray she never does. I

look forward to hearing from anyone who would be kind enough to answer this

email and thank you very much for your help in advance. We all have been

suffering for many years. Sincerely,

[Guest guest]

I stepped on a nail at work .I walked around on my heel for 3 months then had surgery to remove a peice of shoe rubber out of my left foot.started burning on the scar & having back pain from walking crooked & right hip pain from abnormal gait.Ihad bi lateral SI & facet joint injections done;no help for back pain.now i know for sure i have rsd & arthritis & tarsal tunnel on the right side & Bilateral compressive neuropathy at L5 my name is robert

Tom Nation wrote:

Hi, is your name Bill? Where do you have RSD at, and how did it happen?Mine started with a can falling from the bottom of a plastic grocery bag. Alot of the time it happens by an incident that you would never dream couldcause so much problems! Were you like me and not know what RSD is beforeyou were diagnosed? Something I want to tell you right up front--there arepeople on here with varying degrees of RSD--so don't automatically assumeyou're going to be as bad as some are on here. I saw some pictures ofpeople in the worst stages on a web site and freaked out--which only got medeeply depressed. Mine has stayed in my foot for 3 years, and now I have aspinal column stimulator which is helping with the walking/standing, sothere is hope of the doctors finding ways to make you more comfortable andthat it won't migrate. Do you have a pain management specialist? I hopeyou'll feel better by having people to talk to that understand what you'regoing through.Sincerely, just diagnosed> plez write me>>>>

[Guest guest]

>

> I stepped on a nail at work .I walked around on my heel for 3

months then had surgery to remove a peice of shoe rubber out of my

left foot.started burning on the scar & having back pain from walking

crooked & right hip pain from abnormal gait.Ihad bi lateral SI & facet

joint injections done;no help for back pain.now i know for sure i

have rsd & arthritis & tarsal tunnel on the right side & Bilateral

compressive neuropathy at L5               

                       

my name is robert

Hi ,

I first want to welcome you to our family, you may speak your mind

here, we all know what you are going though. I didn't see the

medications you are taking but hope the pain docs started you on a

neuropathic drug like neurontin or topomax.

Almost every one that has rsd, it seems to me anyway from my five

years of experience, has some sort of trouble with discs in their

backs. I have T9 compression fracture, L4-L5 herniations, basically

my back is a mess. There is really nothing we can do about it but let

it heal over time. I am of the understanding that the more surgery we

have the worse off we get. Just try to write in often and together

we will beat this thing. I know there is a cure around the corner, it

may be a few more years but they are doing great things with ketamin

IVs over in Germany and the FDA just approved doing some studies here

in the USA. So, there is hope out there.

Take care and again welcome.

Hugs and a pain free minute,

Deborah (Deb)

Debgena@...(Deborah Genatossio)

Founder of  RSD-CRPSofAmerica

providing support for many years for

all RSD patients and families.

E-mail us anytime @RSD-CRPS of America

Deb, Jo, Felice and Cyndi moderators 

The material presented here does not reflect the views of

professionals.

Please remember we are not professionals. Members may discuss uses

and

dosages for therapeutic products that have not been approved by their

own

doctor.   A qualified health care professional should be consulted

before

using any therapeutic product discussed on this list. All members

should

verify all information and data with their own healthcare

professional before

employing any therapies discussed in this group.

(outgoing mail protected by Norton antivirus)

[Guest guest]

Deb have you heard of the antibiotic minocin?I beleive my doctor is gonna try to put me on this med after i stop taking my augmentin for my strep that he found in my blood.i tried to get ssd & ssi in tex & now in sc turned down but i,m appealing gg tc ttyl " wrote:

> > I stepped on a nail at work .I walked around on my heel for 3 months then had surgery to remove a peice of shoe rubber out of my left foot.started burning on the scar & having back pain from walking crooked & right hip pain from abnormal gait.Ihad bi lateral SI & facet joint injections done;no help for back pain.now i know for sure i have rsd & arthritis & tarsal tunnel on the right side & Bilateral compressive neuropathy at L5 my name is robertHi ,I first want to welcome you to our family, you may speak your mind here, we all know what you are going though. I didn't see the medications you are taking but hope the pain docs started you on a neuropathic drug like neurontin or topomax. Almost every one that has rsd, it seems to me anyway from my five years of experience, has some sort of trouble with discs in their backs. I have T9 compression fracture, L4-L5 herniations, basically my back is a mess. There is really nothing we can do about it but let it heal over time. I am of the understanding that the more surgery we have the worse off we get. Just try to write in often and together we will beat this thing. I know there is a cure around the corner, it may be a few more years but they are doing great things with ketamin IVs over in Germany and the FDA just approved doing some studies here in the USA. So, there is hope out there.Take care and again welcome.Hugs and a pain free minute, Deborah (Deb)Debgena@...(Deborah Genatossio) Founder of RSD-CRPSofAmericaproviding support for many years for all RSD patients and families.E-mail us anytime @RSD-CRPS of AmericaDeb, Jo, Felice and Cyndi moderators The material presented here does not reflect the views of professionals. Please remember we are not professionals. Members may discuss uses and dosages for therapeutic products that have not been approved by their own doctor. A qualified health care professional should be consulted before using any therapeutic product discussed on this list. All members should verify all information and data with their own healthcare professional before employing any therapies discussed in this group.(outgoing mail protected by Norton antivirus)

[Guest guest]

,

Hi, I'm Tonia.

I was just reading your post.....with all thats been going on in my house, its amazing I even have time to sit here! lol

My back is messed up now mainly due to having 6 lumbar sympathetic blocks done, plus from the way I've had to walk for the past 2 yrs.

I was working for a road construction company..flagging, when an old lady in her late 70's/early 80's hit me in the back of the knee going about 4 mph. She took off, which made it an hit and run.

Well, since then, its spread from my knee to my right foot, leg, hip, lower back and abdomin (due to miscarriage and D & C, the surgery made it spread)....that has been dx'd. Undx'd is my shoulders and arms. Can't get them taken care of until I'm done fighting with W/C.....they aren't arguing I got hit, but they are fighting the dx of RSD. I found out that if it would of stayed in the knee, they would of only had to pay for the knee problems...but where its RSD, that means they'll have to pay for full body injury instead.

I've seen too many of their quacks....and finally got fed up with it and went and found my own doc, 550 miles away.

Until then, which was Jan 2002, I hadn't been on any meds...except for pain killers I've gotten from the ER (wow, a whole 10 pills each time), and one of their docs actually did put me on Neurontin for 3 months back in 2001, and I wish it would of worked.

At the begining, all they gave me at this last doctor was antidepressants along with a form to sign saying I wouldn't injure myself...

Then, in June, when I got pregnant again (and this is the LAST!), I started seeing a baby doc, who put me on Tylox.....tylenol and oxycodone....in August. My very first time of actually being on pain killers in 2 yrs.

My lawyer sent me to a psych who dx'd me with Severe Major Depression due to Chronic Pain, and said that he does not see me working anytime in the foreseeable future. He's also gonna go and take over all of my meds in Febuary when this baby is born....which from the sounds of it will be Paxil, 2 other antidepressants, Topomax and a different type of pain killer that is stronger than the Tylox.

So, see, it takes time to find a doc that will actually help....and it may not even be a regular "doctor" that does it! I've seen Ortho's, Neurologists, Ansteologists and a Neuropsychologist who put in her report that I was more mental than any inhouse patient they've ever had! lol....can ya tell that was from the one that W/C sent me to?? idiots

Didn't mean to write a book here.....just letting ya know that you are not alone in this....feel free to vent (let out some major anger in "nice" vocabulary.....trust me, they really get ya when you cuss...I've gotten "yelled" at it myself QUITE a few times!), laugh, ask questions, answer questions if ya know them, let us know anything funny that happens that day, or anything bad....Whatever you feel like typing!

Tonia

P.S....I'm one of the younger ones here...I'm only 28! hehehe, picking on some of the others!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here