The Romberg's Connection 2009 Survey Results

Other Types of Treatments

Page 89. V. Treatment for Rombergs cont.: Other Types of Treatments (page 1 of 3)
1. Select any treatments used:

Treatments

Responses
(21)

% of Number responding

Acupuncture

33%

Hormones

Light therapy

13%

Massage

53%

Naturopathic medicine

33%

Topical vitamin D

Number responding = 15 / percent responding = 10% of total respondents (143).
Note: This was a multiple choice question.

Page 89. V. Treatment for Rombergs cont.: Other Types of Treatments (page 1 of 3)
2. For "Other" treatments, please enter:

Other Treatments

Responses
(20)

% of Number responding

Chiropractic Therapy

Large doses of Omega 3's

Calendula Oil

Keeping vitamins and minerals in the body

received collagen injections when I was a child

botox needle

Frequency Stimulation

silicone liquid injections into the affected areas.

Bio Alcamid injection

N-Acetyl Cysteine (strong antioxidant)

fish oil - high dose 10 - 15 mLs per day

taking herbal anti-inflammatories

on anti-inflammation diet

I will also try facial gym

PMMA (Dermal Filler) injections

creams to apply to burn skin down initially

homeopathic treatment

Cosmetic - Bio-Alcamid

fatty grafts implanted

silicone injections

Number responding = 14 / percent responding = 10% of total respondents (143).
Note: This was a multiple choice question.

Note: For the rest of this Treatment section, only the first few
words of the "Other Treatments" will be shown.

Page 90. V. Treatment for Rombergs cont.: Other Types of Treatments (page 2 of 3)
1. How long was this treatment used:

Medication

Responses
(34)

How Long Was This Treatment Used

Acupuncture

6 months

so far - 7 months

6 months

for about 1 year

one year with good results (the pain is over)

Hormones

Light therapy

6 months, 3 times a week for 2 months

Massage

3 months

Only a few weeks with a massage therapist, now I massage myself

1 1/2 years

8 years

12 months

several months

so far - 7 months

Naturopathic medicine

since December 2008

8 years

Since diagnosis 5 months ago. Still using it.

four months

Topical vitamin D

1 year

List of "Other Treatments" Follows

Chiropractic….

Large doses of….

12 months

Calendula Oil

2 weeks

Keeping vita….

keep up daily

received col….

injections from age 7-15, 6 times a year or more

botox needle

current

Frequency….

2 times

silicone liquid….

about 2 years

Bio Alcamid….

N-Acetyl Cys….

3 months

fish oil - high….

2 years

taking herb….

on anti-inflamm….

I will also try….

facial gym - beginning now, very enthusiastic about it

PMMA (Derm….

PMMA injections - the appearance is better, maybe it prevents future atrophy

creams to apply….

a year

homeopathic….

Cosmetic - B….

Bio-Alcamid - 2 times injected

fatty grafts….

fatty grafts - lasted for about 10 years

silicone injections

silcone injections - lasted about 25 yrs

Medication

Responses
(34)

How Long Was This Treatment Used

Number responding = 20 / percent responding = 14% of total respondents (143).
Note: This was a multiple choice question.

Page 90. V. Treatment for Rombergs cont.: Other Types of Treatments (page 2 of 3)
2. Please list any side effects with this treatment:

Medication

Responses
(21)

Side Effects With This Treatment

Acupuncture

none, none, none, none

Hormones

Light therapy

none

Massage

none, none, none

Naturopathic medicine

Major improvement in overall health.

Positive side affects. He has grown in height and weight. No colds or flu.

Topical vitamin D

List of "Other Treatments" Follows

Chiropractic….

Large doses of….

Calendula Oil

none

Keeping vita….

seems to slow the progression

received col….

none-collagen would reabsorb within a week

botox needle

Frequency….

None.. and no apparent benefit as of yet.

silicone liquid….

Silicone moved from under the tight skinned Romberg's areas into normal areas resulting in hard lumps which made the difference between the non-fat Romberg's areas & the now silicone areas far more noticable, had to have an operation to try to drain the silicone out but this did not work.

Bio Alcamid….

infection

N-Acetyl Cys….

fish oil - high….

taking herb….

on anti-inflamm….

I will also try….

none

PMMA (Derm….

PMMA - possible pain? not sure if the pain is from PRS or from PMMA

creams to apply….

none

homeopathic….

Cosmetic - B….

none

fatty grafts….

fatty graft. - one was infected and needed to be replaced

silicone injections

Medication

Responses
(21)

Side Effects With This Treatment

Number responding = 14 / percent responding = 10% of total respondents (143).
Note: This was a multiple choice question.

Page 91. V. Treatment for Rombergs cont.: Other Types of Treatments (page 3 of 3)
1. When treatment ended, did the symptoms reappear after a period of time:

Treatment	Responses (27)	Yes	No	Undecided
Acupuncture	3	66% (2)	33% (1)
Hormones
Light therapy	2	100% (2)
Massage	6	42% (3)	14% (1)	28% (2)
Naturopathic medicine	2			100% (2)
Topical vitamin D
List of "Other Treatments" Follows
Chiropractic….
Large doses of….	1	100% (1)
Calendula Oil
Keeping vita….	1			100% (1)
received col….	1	100% (1)
botox needle
Frequency….	1			100% (1)
silicone liquid….	1	100% (1)
Bio Alcamid….	1	100% (1)
N-Acetyl Cys….	1			100% (1)
fish oil - high….	1			100% (1)
taking herb….
on anti-inflamm….
I will also try….	1		100% (1)
PMMA (Derm….	1		100% (1)
creams to apply….	1		100% (1)
homeopathic….
Cosmetic - B….	1	100% (1)
fatty grafts….	1		100% (1)
silicone injections	1		100% (1)
Treatment	Responses (27)	Yes	No	Undecided

Number responding = 17 / percent responding = 12% of total respondents (143).
Note: This was a multiple choice question.

Page 91. V. Treatment for Rombergs cont.: Other Types of Treatments (page 3 of 3)
2. Please rate how effective you think this treatment was:

Medication	Responses (32)	No Change	Some Improvement	Good Improvement	Great Improvement	Total Improvement
Acupuncture	5		60% (3)	20% (1)	20% (1)
Hormones
Light therapy	2	50% (1)	50% (1)
Massage	7	25% (2)	25% (2)		37% (3)
Naturopathic medicine	3		66% (2)		33% (1)
Topical vitamin D
List of "Other Medications" Follows
Chiropractic….
Large doses of….	1				100% (1)
Calendula Oil
Keeping vita….	1		100% (1)
received col….	1	100% (1)
botox needle	1				100% (1)
Frequency….	1	100% (1)
silicone liquid….	1	100% (1)
Bio Alcamid….	1			100% (1)
N-Acetyl Cys….	1		100% (1)
fish oil - high….	1		100% (1)
taking herb….
on anti-inflamm….
I will also try….	1		100% (1)
PMMA (Derm….	1		100% (1)
creams to apply….	1					100% (1)
homeopathic….
Cosmetic - B….	1			100% (1)
fatty grafts….	1				100% (1)
silicone injections	1					100% (1)
Medication	Responses (32)	No Change	Some Improvement	Good Improvement	Great Improvement	Total Improvement

Number responding = 20 / percent responding = 14% of total respondents (143).
Note: This was a multiple choice question.

Page 91. V. Treatment for Rombergs cont.: Other Types of Treatments (page 3 of 3)
3. Comments for Other Types of Treatments:

Responses (12)
Chiropractic treatment and massage therapy along with high doses of Omega 3's.
While painfully slow, we believe we may have found a treatment that works in reversal of some symptoms.
Had my own body fat injected by a plastic surgeon under affected areas. Was reabsorbed in the scalp but some hair started to grow - some stayed in the forehead. Mild success.
Silicone injections made my face worse.
The appearance was good / but my body rejected the material (Bio-Alcamid).
He was diagnosed just four months ago. Been on the naturopathic treatment for the whole time. Atrophy may have slowed down, hard to tell. But is gaining weight, growing in height and has so far avoided cold season entirely.
I developed a depression in my cheek area about a month after stopping the UVA treatment. It makes me wonder whether the UVA sped it up or if it was controlling the Rombergs, and stopping the UVA made the progression speed up. No one can tell me that.
Anti-oxidants and fish oil - no improvement in symptoms seen, I am just aiming to slow the progression. I think the evidence backing these treatments in a variety of inflammatory and/or degenerative conditions is very positive and I am hopeful they can work just as well in PRS.
Hard to tell, it has only been 2 months.
We are still trying with homeopathic treatment and some changes are there...
The massage helped the face feel more refreshed and 'lighter'. It must have helped with blood circulation. I don't know if it would help to stop the atrophy or help plump up the face again.
The naturopathic medicine is hit and miss until we can figure out the right combination. We believe it is slowing the atrophy. It is helping his general health. He really hadn't grown much in the last two years. Now he is growing in both weight and height. Has not caught any of the colds or flu that his siblings have brought home. His overall health has greatly improved.

Number responding = 12 / percent responding = 8% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.

As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.