This was not a scientific survey.
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| 5 | 6 | 7 | 9 | 11 | 13 | 14 | 19 | 20 | 21 | 21 | 21 | 22 | 22 | 23 | 25 | 26 | 26 |
| 27 | 27 | 28 | 29 | 31 | 32 | 33 | 33 | 33 | 33 | 33 | 36 | 36 | 36 | 40 | 40 | 42 | 43 |
| 44 | 45 | 46 | 47 | 47 | 47 | 48 | 48 | 49 | 49 | 51 | 52 | 54 | 54 | 56 | 61 |
| Australia 8 (15%) | Canada 1 (2%) | England 3 (6%) | Ireland 1 (2%) |
| Italy 1 (2%) | New Zealand 4 (8%) | Singapore 1 (2%) | South Korea 1 (2%) |
| United Kingdom 2 (4%) | USA 30 (58%) |
Location?
| Above forehead - suctioned out of birth canal | Age 10 1/2 months head was hit |
| Back of head left of midline | Below right eye |
| Chin | Chin & nose |
| Face - forceps delivery resulted in bruising & swelling of face | Facial right cheek & chin |
| Forehead | Forehead split at 18 months old |
| Forehead, fell down stairs age 3 | Head |
| Head & face | Hit head when I fell down flight of stairs as a small child |
| Hit my head on a rock after falling off a horse at age 12 - left temple | Left forehead |
| Left side of cheek | Left side of face |
| Lip age 5 | Right jaw |
| Right occipital lobe | Right side |
| Right side of temple, cheek & chin | Right temple & forehead |
| Top of forehead just on hair line | Top of head, right cheek, right eye |
| Under nose right side | Underneath chin |
Comments:
Nothing that seemed out of the ordinary. I was a boy who played rough and I'm sure I banged my head against something when I fell etc., but I don't recall anything that sent me to the hospital.
if Yes, for how long? (Responding = 24) (Note: mo. = months and yrs. = years)
| 1 mo. = 1 | 6 weeks = 3 | 3 mo. = 2 | 4 mo. = 1 |
| 5 mo. = 3 | 6 mo. = 3 | 9 mo. = 4 | 12 mo. = 1 |
| 14 mo. = 1 | 2 yrs. = 2 | Not sure = 3 |
| Birth = 1 | 18 mo. = 1 | 2 yrs. = 3 | 2 1/2 yrs. = 2 | 3 yrs. = 2 |
| 3 1/2 yrs. = 1 | 4 yrs. = 1 | 4 1/2 yrs. = 2 | 5 yrs. = 1 | 6 yrs. = 2 |
| 7 yrs. = 1 | 8 yrs. = 5 | 9 yrs. = 4 | 10 yrs. = 2 | 11 1/2 yrs. = 1 |
| 12 yrs. = 1 | 12 1/2 yrs. = 2 | 14 yrs. = 4 | 15 yrs. = 1 | 16 yrs. = 3 |
| 16 1/2 yrs. = 2 | 17 yrs. = 1 | 18 yrs. = 1 | 25 yrs. = 1 | 33 yrs. = 1 |
| 36 yrs. = 1 | 40 yrs. = 1 | 45 yrs. = 1 | 49 yrs. = 2 |
Age symptoms ceased? (Responding = 27)
| Not Sure = 2 | 4 yrs. = 1 | 7 yrs. = 1 | 8 yrs. = 2 | 8 - 9 yrs. = 2 |
| 10 yrs. = 3 | 13 yrs. = 1 | 16 yrs. = 1 | 17 yrs. = 1 | 18 yrs. = 3 |
| 19 or 20 yrs. = 1 | 20 yrs. = 1 | 21 yrs. = 2 | 21 or 22 yrs. = 1 | 26 or 27 yrs. = 1 |
| 27 yrs. = 1 | 29 yrs. = 1 | 30 yrs. = 1 | 35 yrs. = 1 |
Comment: "possibly now, possibly not"
Age reactivated? (Responding = 6)
| 24 yrs. = 1 | 25 yrs. = 1 | 30 yrs. = 2 | 43 yrs. = 1 | 45 yrs. = 1 |
Comments:
"Never I hope."
"Not sure."
"Reactivated with birth of first child and again after the next two pregnancies."
Still Active (Yes or No)? (Responding = 48)
| Yes = 25 (52%) | No = 19 (40%) | Not Sure = 4 (8%) |
Comments: "Not sure" and "Unsure"
| 3 yrs. = 2 | 4 yrs. = 2 | 4 1/2 yrs. = 1 | 5 yrs. = 3 | 6 yrs. = 1 | 7 yrs. = 2 | 8 yrs. = 2 |
| 10 yrs. = 2 | 12 yrs. = 1 | 14 yrs. = 4 | 15 yrs. = 2 | 16 yrs. = 2 | 17 yrs. = 2 | 18 yrs. = 2 |
| 20 yrs. = 3 | 21 yrs. = 1 | 23 yrs. = 1 | 24 yrs. = 1 | 27 yrs. = 4 | 30 yrs. = 1 | 31 yrs. = 1 |
| 34 yrs. = 1 | 35 yrs. = 1 | 36 yrs. = 1 | 37 yrs. = 2 | 41 yrs. = 1 | 45 yrs. = 1 | 50 yrs. = 1 |
Diagnostic procedures? (Responding = 33)
| Biopsy | Blood test, MRI & CAT scan |
| By my General Practitioner | CAT scan & x-rays |
| Deep tissue biopsy | Dermatologist checking on a melanoma told me what it was & I followed up on the internet |
| Dermatologist, no special test done | Doctor, x-rays, plastic surgeon, specialist, specialist plasic surgeon |
| History, blood work (elevated autoimmune factors) | Just one look at me |
| Many, many tests | MRI |
| MRI & saw a neurologist who recognized atrophy | MRI, CAT scan, EMG, EEG |
| MRI, neurologic exam | My Doctor was treating someone else who had Parry Romberg |
| Neurological testing, blood testing, (it was 1977 & I can't remember) | Photos & x-rays |
| Physical exam by dermatologist | Physical, CAT scan, EEG |
| Plastic surgeon | Plastic surgeon & on visual only |
| Plastic surgery & Mayo Clinic | Punch biopsy |
| Skin biopsy, x-rays, teeth molds | Visual |
| Visual & MRI | X-ray of face & teeth, photos every few months |
| X-rays | X-rays & bone scan |
| X-rays, photographs, blood test, then checked every 6 months, then annually |
Comment:
"As a child, when the spot appeared on my forehead, it looked like a burn, or some kind of skin disease. I was taken to a dermatologist who gave me steroids (this was in 1955 or 56); and something
else (i don't know what) to darken my skin! (I am African American). Then they gave up and told my mother to put "Crisco" on the mark."
Age Chart for Romberg's 2003 Survey.
| ID # | Current Age | Age of Onset | Age Diagnosed | Had Surgery | Age of Surgery |
| 47 | 21 | 4 | Yes | 12 & about one every year | |
| 43 | 45 | Birth | 37 | Yes | 37 |
| 27 | 27 | 18 mo. | 5 | Yes | 10 to 20 |
| 31 | 6 | 2 | 5 | No | |
| 15 | 5 | 2 | 3 | No | |
| 49 | 7 | 2 | 4 | No | |
| 34 | 9 | 2.5 | 3 | No | |
| 40 | 14 | 2 to 3 | 7 | Yes | 14 |
| 33 | 22 | 3 | 20 | Yes | 12 & 21 |
| 4 | 43 | 3 | 7 | Yes | 35 & 37 |
| 35 | 33 | 3.5 | 12 | Yes | 11 to 12 |
| 37 | 42 | 4 | 4 to 5 | Yes | two in early 20's, 28 & 42 |
| 9 | 26 | 4 or 5 | 8 | Yes | 7, 9, 19 |
| 20 | 48 | 4 to 5 | Yes | 14 | |
| 46 | 31 | 5 | 5 | Yes | 10 |
| 36 | 54 | 6 | Yes | 23 | |
| ID # | Current Age | Age of Onset | Age Diagnosed | Had Surgery | Age of Surgery |
| 21 | 36 | 6 | 6 | No | |
| 7 | 13 | 7 | 8 | No | |
| 29 | 52 | 8 | 23 | Yes | 20 |
| 25 | 44 | 8 | 31 | No | |
| 22 | 36 | 8 | 34 | Yes | 34, 35 & 36 |
| 48 | 28 | 8 | 16 | Yes | 19 & 22 |
| 42 | 22 | 8 | 21 | Yes | 21 |
| 44 | 33 | 9 | 27 | No | |
| 14 | 11 | 9 | 10 | No | |
| 32 | 21 | 9 | 14 | Yes | 16, 17 & 18 |
| 3 | 56 | 9 | 16 | Yes | 48, 48, 49, 50 |
| 30 | 33 | 10 | 10 | Yes | 16, 18 & 21 |
| 51 | 23 | 10 | 18 | No | |
| 5 | 47 | 11 to 12 | 14 | Yes | 24 & 37 |
| 16 | 20 | 12 | 14 | Yes | 19 |
| 19 | 19 | 12 or 13 | 14 | Yes | 18 |
| 52 | 33 | 12 or 13 | 18 | Yes | 30 |
| ID # | Current Age | Age of Onset | Age Diagnosed | Had Surgery | Age of Surgery |
| 23 | 61 | 14 | 35 | Yes | 16 |
| 39 | 49 | 14 | 20 | No | |
| 6 | 25 | 14 | 15 | No | |
| 18 | 47 | 14 | 20 | No | |
| 1 | 32 | mid teens | 24 | Yes | 24 and 29 |
| 26 | 21 | 16 | 17 | No | |
| 50 | 47 | 16 | 27 | Yes | 36 |
| 38 | 33 | 16 | 30 | No | |
| 8 | 27 | 15 to 18 | 15 | Yes | 26 & 27 |
| 13 | 40 | 16 or 17 | 36 | No | |
| 2 | 26 | 17 | 17 | No | |
| 11 | 49 | 18 | 27 | No | |
| 17 | 29 | 25 | 27 | Yes | 27 |
| 12 | 36 | 33 | No | ||
| 45 | 40 | 36 | 37 | Yes | 37 to 39 |
| 24 | 48 | 40 | 41 | No | |
| 41 | 46 | 45 | 45 | No | |
| 10 | 54 | 49 | No | ||
| 28 | 51 | 49 | 50 | No | |
| ID # | Current Age | Age of Onset | Age Diagnosed | Had Surgery | Age of Surgery |
CAT Scan (Yes or No)? (Responding = 50)
Yes....21 (42%)
No......29 (58%)
if Yes, name of medication:
| Aspirin | Diprosone |
| Methotrexate | Methotrexate, Methylprednisolone |
| Methotrexate, Methylprednisalone | Plaquenil (2 responses) |
| Plaquenil, Doryx, Dovonex, Quinicrine | Plaquenil, Methotrexate |
| Plaquenil, Doxycycline, Oral Calcitriol, Monocycline | Vitamin B-12 |
Comment:
"Massive doses of vitamin B-12 directly into the affected area. It seemed to stop the En Coup De Sabre."
| 1 = 2 (4%) | 3 = 8 (16%) | 4 = 8 (16%) | 5 = 11 (22%) | 6 = 5 (10%) |
| 7 = 6 (12%) | 8 = 6 (12%) | 9 = 2 (4%) | 10 = 3 (6%) |
Comment: "Hard to say, never seen anyone to compare with."
Number of surgeries? (Responding = 29)
| 1 = 11 (38%) | 2 = 4 (14%) | 3 = 5 (17%) | 4 = 7 (24%) | 8 = 1 (3%) | 10 = 1 (3%) |
What type (types) of procedure was used? (Responding = 28)
| 1: Collagen implant through small incision behind ear 2: Silicone implant through same incision and also through small incision under chin 3: Removal 4: Tissue transplant from my lower abdomen. | Artificial bone & fat implant |
| Fat graph, Flap and remove excess (See Comment 1 below) | Fat graph |
| Fat graphs | Fat implantations two times & allograph transplantation, silicone injections from 7 to 17 |
| Fat injection | Fat injections (2 responses) |
| Fat injections from abdomen to cheek | Free flap to chin & cheek, artificial material to forehead & temple, liposuction & fat injections |
| Implant in upper cheek bone (left side) & fat graph from stomach area in lower cheek area | Injected silicone into forehead in 1972 |
| Microvascular Free Flap | Microvascular Free flap |
| Microvascular/take out extra tissue/cheek implant/lift up and secure hanging tissue | Para-scapular free flap to face and fat injections |
| Plastic implant, lipo & fat graft (See Comment 2 below) | Reconstructive on my affected eye lid |
| Reconstructive plates in my forehead & in my chin | Removal of mass - entire length of scalp, left of midline |
| (See Comment 3 below) | Silicone injections, surgery to drain the Silicone (See Comment 4 below) |
| Skin flaps, grafts, laser | Straighten nose & jaw, microvascular free flap |
| The first was a microvascular free flap. The second was a correction of the shape of the flap. The third was Medipore on the bone under the eye. Then about five were injections of fat in the lip and the cheek. | Type cartilage implant (nasal septum harvested & implanted in lower eyelid) |
| Type insertion of fat |
Comments:
| 1. | The first surgery was a fat graft (buttocks to cheek), the 2nd surgery was a 'flap' - a bit of flesh with it's own blood supply was taken from my groin and transplanted into my cheek and chin and top lip. The 3rd surgery was to remove a bit of the excess. |
| 2. | Implanted plastic onto the cheek bone and chin area, also filled in with a lipo (fat), the lipo reabsorbed and a second surgery was performed to redo the implant and add more lipo to the cheek, that became infected and the lipo came out again. The third surgery was a nightmare, they took the graft from my upper thigh (underwear line) and placed it in the cheek in layers, again after a week this too became infected and I spent 10 days in the hospital and had a post op infection surgery to try to retain the graft, it worked, although the graft fell into the cheek and didn't stay where they wanted it, it still stayed, but I see it reabsorbing. |
| 3. | Which did not stay in the areas but moved to healthy undamaged more pliable areas thus causing bad 'puffiness'. |
| 4. | First surgery the doctor took a fat graft from my buttocks and placed it in my cheek as well as filled in my lip (very painful healing process). For the second surgery, the doctor liposuctioned fat from my stomach and injected it into the affected cheek area in a horizontal and vertical pattern to rebuild the area. Also had an implant put into my left lip to make it less droopy. (The area that was liposuctioned hurt more during the healing process than my face). |
At what age (ages) was surgery (surgeries) performed? (Responding = 29)
| 7, 9, 19 | 10 | 10 to 20 | 11 to 12 | 12 & 21 |
| 12 & about one every year | 14 | 14 | 16 | 16, 17 & 18 |
| 16, 18 & 21 | 18 | 19 | 19 & 22 | 20 |
| two in early 20's, 28 & 42 | 21 | 23 | 24 & 29 | 24 & 37 |
| 26 & 27 | 27 | 30 | 34, 35 & 36 | 35 & 37 |
| 36 | 37 | 37 to 39 | 48, 48, 49, 50 |
Was the surgery (surgeries) a success? (Responding = 27)
Yes.......9 (33%)
No.........4 (15%) (See Comment 1 below)
Other....14 (52%)
| 1st absorbed, 2nd rejected & went septic, last was a moderate success. | 1st not a success, 2nd was an improvement. |
| 50% successful | 70% |
| Fixed one problem but caused another problem. | Somewhat; still need ointment & plastic wrap taped over eye at night; some cosmetic benefit. Can't look down any longer because lid obstructs view. |
| Sort of | Sort of - not perfect but I think I look better than I would if I hadn't had it. |
| Sort of, not happy with it | The first surgery was completely reabsorbed. As for the second one, I was supposed to have a follow up procedure 2 months later but I was pregnant with my first child and I haven't gone back. |
| The implant is fine. The fat has reabsorbed. | Yes & No (See Comment 2 below) |
| Yes, but have since atrophied. | Yes, I never had complications. The fat injected remained only in small part but I knew before undergoing the surgery. Anyway, the asymmetry is still visible. |
Comments:
| 1. | Comment from a "No" response: Neither injections nor draining were successful. |
| 2. | Implanted plastic onto the cheek bone and chin area, also filled in with a lipo (fat), the lipo reabsorbed and a second surgery was performed to redo the implant and add more lipo to the cheek, that became infected and the lipo came out again. The third surgery was a nightmare, they took the graft from my upper thigh (underwear line) and placed it in the cheek in layers, again after a week this too became infected and I spent 10 days in the hospital and had a post op infection surgery to try to retain the graft, it worked, although the graft fell into the cheek and didn't stay where they wanted it, it still stayed, but I see it reabsorbing. (Same comment as Comment 2 under question 13 above) |
Describe:
| Arthritis | Asthma & allergies |
| Celiacs disease | Fibromyalgia |
| Hay fever | High autoimmune factors: RF, ANA, etc |
| Localized Scleroderma (Morphea) | Lupus |
| Scleroderma & Celiacs. Tested postive for Lyme disease | Systemic Lupus Erythematosus |
| Underactive thyroid/Hashimoto's |
Comment:
"Asthma and allergies (mostly to environmental allergens) - dust, mold, fungus, smoke, most trees, pollen, grasses, dust mites, paper mites, orange blossoms."
Describe:
High.......3 (38% of "Yes")
Low.......5 (62% of "Yes")
Comments:
"Have always had low blood pressure but since diagnosis it has been elevated."
"Yes for awhile during the surgery period." (was addressing High blood pressure)
Bone Location:
| Cheek | Cheek |
| Cheek & chin | Cheekbone |
| Eyebrow | Face |
| Face, jaw, skull | Face, neck & back on left side |
| Forehead | Forehead, temple, jawbone |
| Jaw | Jaw, cheekbone, eye socket & temple |
| Left side of skull | Loss in jaw, chin & forehead |
| Right cheek, jaw and chin | Right cheek |
| Right forehead & scalp, right cheek, right side of chin, right brow bone |
Right side face, scalp, chin |
| Right side of forehead | Right side of forehead |
| Skull | Temple & jaw |
| Upper left jaw |
Muscle Location:
| Cheek | Cheek |
| Cheek, back, thigh on right side | Cheek |
| Chin | Eyelid |
| Face | Face & eye |
| Face, arm, ankle, buttock, back | Face, arm, back & chest |
| Face, neck & back on left side | Jaw |
| Jaw, cheek, eye, temple and tongue | Left cheek area & upper lip |
| Left side cheek, chin & forehead | Left side of skull |
| Right of face, below lip down to below jaw line | Right side face & chin |
| Right side of face from ear to mid cheek down to a bit below the jaw line | Right side of face |
| Excessive electrical activity | Lesion present on right side of brain (just behind right ear) |
| Lesions | My MRI found multiple small lesions in the gray matter near my right basal ganglia. |
| Seizures | Seizures |
| Seizures | Two lesions visible on MRI scan |
Comment: "Seizures from age 17 to about 22."
Describe:
| Atrophy of left side & small cleft | Atrophy on left side which goes into chin. |
| Discolored spot | En Coup de sabre, tissue loss |
| Fat loss on one side | Half of my chin is smaller, looks like a dimple on my chin. |
| I have an indention almost directly down the center of my chin but it is more on the left side. It almost looks like a deep cleft. It is also a little darker in color. | It used to go flat down, now it goes in right below my lip and protrudes out slightly. |
| Left side | Left side is smaller & is darker in color |
| Left side sunken & dark | Line running through one side, atrophied |
| Loss of fat on left side, discoloration | Loss of soft & bony tissue |
| Loss of soft tissue on right side. | Mild slightly thinner on left side |
| Muscle loss | No flesh on affected side & bone loss to jaw |
| One side smaller | Right is less full - dimple is off center |
| Small cleft in chin | Smaller on right side |
| Tissue loss | Tissue loss |
| Tissue loss | Tissue loss & slight puckering of skin |
| Tissue loss from right side of chin | Very little soft tissue there & shorter chin line on right side. Also nerve near surface & very sensitive. |
Other (specify):
| A lipoma was found in my left ear canal | Atrophy has caused it to stick out |
| Atrophy of lobe, whole ear smaller | Cartilage in right earlobe disappeared (contralateral to left facial hemiatrophy) |
| Earlobe thinning | Hearing loss is bilateral, MD's are unsure if linked to Rombergs |
| Left side is smaller than the other | My left ear is lower |
| Shape isn't exactly the same as other |
Location: (Responding = 32)
| Across cheek | Center in left side of forehead extending into scalp |
| Center of forehead | Center to left forehead |
| Chin | Crosses to right chin |
| Down entire face | Down forehead |
| Entire left side of skull | Face |
| Forehead | Forehead & past hairline |
| Forehead, by inside of eyebrow | From middle of skull to chin |
| Half way from back of head (left side) to forehead, reaching eyebrow | Left cheek |
| Left of center | Left scalp to left eyebrow, below right eye to below right jaw |
| Left side of forehead | Middle forehead up through middle of scalp |
| On left side of forehead & it goes back into my hair 3 inches | On right side of skull and goes down into forehead |
| Right cheek | Right cheek |
| Right forehead & scalp | Right forehead (double) |
| Right side | Right side of cheek & chin |
| Right side of forehead | Right side of my skull about 7 inches long |
| Tongue | Two - one from bridge of nose to crown (almost midline) and one from middle of left eyebrow to crown |
Comments:
"Forehead, right eyebrow, right cheek, in front of right ear & right jaw."
"Left side of whole head including face, neck to shoulder blade."
"Severe jaw clamping when younger, constant tingly sensation now."
Location:
| Angle of ear & jaw | Angle of ear & jaw |
| Cheek | Cheekbone, forehead right side |
| Cheekbone | Cheek, ear, eye, TMJ |
| Forehead | Forehead, right eyebrow, right cheek, in front of right ear & right jaw |
| Formerly left jaw hinge, currently around left eye | Jaw |
| Left - along trigeminal nerve | Left cheek |
| Left jaw line | Left side |
| Left side | Left side |
| Left side of whole head including face, neck to shoulder blade | Left temple & left mandibular junction |
| Right cheek & chin | Right side |
| Right side | Severe jaw clamping when younger, constant tingly sensation now |
| Temple, cheek & chin |
Comment: "Temple area only."
Comment: "Discoloration, atrophy of soft tissue. Looks like a big black eye."
Other:
| Dark area | Darkening of the skin & En coup de sabre |
| Dent in forehead above eyebrow | Dent in forehead |
| Discoloration | Discoloration & indentation |
| Discoloration, atrophy of soft tissue | En coup de sabre |
| Eyebrow on right side, partially missing | Fat loss, En coup de sabre |
| Furrows | Indentation along sabre scar |
| Loss of fat | Muscle/tissue loss |
| Skin discoloration | Slight blue discoloration |
| Tissue loss |
Comment: "Maybe - - somewhat thinner on left side, not noticeable."
| Gray patches | Bald spot in the middle of the top of head since birth |
| My right arm has no hair, while left does | - |
Comment: "Had frequent headaches in late teens, early 20s"
| I always thought they were sinus headaches because they occurred every time an area of low pressure came through. | Light sensitive |
| Forehead aches | Can't swallow as well as I used to |
Comment: "No - but have familial congenital "innocent" murmur."
Comment:
"Used to violently snap shut - my teeth are fractured as the result - doesn't anymore." (concerning jaw locking).
| Clicks | Shorter on left side |
| Jaw clicking when chewing | Overbite |
| I wear an NTI splint to help | Atrophy of the bone |
| Jawbone thinning | Sometimes can't even open my mouth. Investigations show some slow swallowing process, but not sure of reason, left untreated |
| Upper right part of lip is pulled up a little | Teeth - atrophied nerves to teeth on affected side makes them very weak |
| Collapsing palette causes sleep apnea. | Crooked smile |
| Crease above mouth on right side, mouth asymmetrical | Teeth affected |
Other:
| Curves up on right side & also indents | Pulled to one side |
| Sinus cavity is thinning | Left side smaller than right |
| Left of center | Nose is very asymmetrical |
| Nostril smaller, indent at base of nostril | A very little difference in the shape on the left side |
| Right of center | Looks a little more flat on the left |
| Hands | Left side of cheek |
| Left side of face | Whole side of face - but I think that may be more to do with the surgery |
| Left cheek sometimes | Cheek & chin |
| Dispersed over left side of body | Have lost feeling between some fingers of right hand |
| Cheek, lip, chin, after surgery | Cheek |
| Eyelid & upper cheek on right side | No "internal" feeling from Free flap surgery |
| All affected area sometime | Upper arm on unaffected side |
| Leg, arm & face | Left face |
Other:
| Indentation on back of skull | Build up of calcium along left side |
| Tenderness - Occipital neuralgia | Hair above mark on left forehead |
| Thin skin | Thinner than the right |
| Conflicts partial - seizures begin with an unpleasent, metalic taste in my mouth | Petit mal |
| Grand mal seizures in sleep | Grand mal seizures |
| Sometimes my vision became "wave" like motion in just split seconds |
| Affected area (right) | Along smile line |
| Both sides of face | Brown spot on cheek, white areas on cheek & nose |
| Cheek & chin | Cheek, temple, lips, neck, eye area, right side |
| Cheek, upper lip, neck, back | Chin |
| Chin | Chin & forehead |
| Chin & jaw | Chin, neck and side |
| Face | Forehead |
| Forehead | Forehead & around eye |
| Forehead over left eye | Forehead, above lip from cheek bone to lip line |
| Forehead, back | Forehead, chin |
| Forehead, temple, around right eye | Left side of chin |
| Left temple & left forehead | Neck, forehead, face, arm, torso, ankle |
| Right cheek, looks like a bruise | Right forehead, corner of lip, cheek & under eye |
| Right jaw | Right side just under eye |
| Right side of chin | Thigh |
| Under left eye |
Comment: "After surgery and onwards"
Thin.................31 (78% of "Yes")
Location:
| Affected area (right) | All affected areas |
| Both sides of face | Cheek, upper lip, neck, back |
| Chin | Chin |
| Chin & inside mouth | Chin & jaw |
| Chin, cheek, lips, neck, eye area, right side | Eyelid & forehead |
| Face | Forehead |
| Forehead | Forehead & chin |
| Forehead & neck | Forehead over left eye |
| Forehead, chin | Forehead, temple, cheek & jaw on left side |
| Left cheek | Left cheek area |
| Left forehead & left temple | Left side of face & right forehead |
| Neck, forehead, face, arm, torso, ankle | Right cheek & under |
| Right forehead | Right jaw |
| Right side | Scalp, forehead, chin, back |
| Under left eye & cheek area |
| Affected area (right) | Both sides of face |
| Cheek & forehead | Cheek, forehead, chin, nose |
| Cheek, forehead, lips, neck, eye area right side | Cheek, jaw & chin |
| Cheek, upper lip, neck, back | Chin, left cheek |
| Complete right side | Entire right side of face |
| Face | Face, ankle, ear, back |
| Forehead | Forehead |
| Forehead over left eye | Forehead, chin |
| Forehead, temple, around right eye | Forehead, temple, cheek & jaw on left side |
| Left cheek | Left cheek area |
| Left cheek area, cheek bone, temple, lip, forehead | Left face, right earlode & neck |
| Left side corner of mouth, into chin, right side-forehead. | Right |
| Right arm, chest, face, forehead, eye socket, left back | Right cheek & under |
| Right forehead, right cheek & chin | Right hemi-facial |
| Right side of cheek & chin. | Scalp, forehead, chin, back |
| Note: | At least one person reported more than one symptom: |
| 4 or (10%) reported only "Discoloration" | |
| 2 or (5%) reported only "Thin" | |
| 1 or (3%) reported only "Loss" | |
| 3 or (8%) reported both "Discoloration" and "Thin" | |
| 3 or (8%) reported both "Discoloration" and "Loss" | |
| 6 or (15%) reported both "Thin" and "Loss" | |
| 18 or (45%) reported all three of the above three skin problems | |
| 3 or (8%) reported all three of the above three skin problems plus "Other" |
Other...............3 (8% of "Yes")
| Affected skin areas quite brownish, tight & shiny with no fatty tissue underneath | Doesn't heal well |
| No pores on Rombergs side |
Other:
| Bone loss in upper jaw consistent with gum disease but came on very rapidly over about 18 months, and is only in that area | Fractured teeth from jaw spasms when younger |
| Top back molar on affected side is only a quarter of the size it should be (dentist thinks it may be my wisdom tooth, either that or the wisdom tooth is missing) | Several "baby teeth" never fell out, by the time they were pulled, they had no roots |
Other:
| Corneal irritation | Lightening flashes - cloudy |
| Loss of vision | Need reading prescription glasses for only left eye. |
| Optic nerve degraded on atrophy side | Optic neuritis, Horners Syndrome |
| I had very atypical case optic neuritis, where I lost most of my vision over the course of 9 months, and slowly regained a portion back | Right eye appears lower than left, perhaps because atrophy above left eye didn't allow forehead to grow same amount, but that isn't apparent, the eye alignment problem is |
| Vision maybe related to Celiac's disease |
| Arm, ankle, buttock, back | Arm, back, chest |
| Back | Discolored indentations on lower back |
| Left shoulder seems to be getting thinner | Left side: arm, hand & shoulder |
| Right calf | Right side of neck is discolored |
| Scaroidal patches lungs, uterus hardened (hysterectomy) | Small mark on neck, large patch on back |
| Tissue loss on side above waist |
if Yes, describe: (Responding = 14)
| ADHD - hyperactive type | Allergies & asthma |
| Aneurysm resulting in stroke | Asthma |
| Celiacs, Scleroderma | Colon polyps, osteoarthritis in knees |
| Diverticulitis - Had colon resection at age 35, gallstones |
High cholesterol |
| Irritable bowel syndrome | Lower back problems, Spondylolisthesis |
| M.S. | Spina Bifida |
| Systemic Lupus Erythematosus | Tingling sensations |
| Cold (5 responses) | Cold - feels pain |
| Cold weather | Don't like getting hot |
| Due to heat - - began in pregnancy | Extreme cold makes the areas that atrophied very sore |
| Feels cold | Hands & feet hurt, tingle & or turn red when too hot, blueish white when cold |
| Hate hot weather | Heat - when I get hot my face goes bright red, it feels like I am literally boiling inside |
| Left side feels strange in cold or hot temperatures | Mild/moderate Raynauds |
| My hands get very stiff & sore in the cold, I sweat excessively in the heat, anything above 70 degrees | My teeth on that side ache with extreme cold |
| Since surgery, lip gets hard when weather gets cold | To heat |
| Usually very cold |
"Yes, people staring, strangers asking 'what happened to your face'."
| Gets sick of being asked what kind of accident I had, or who has been hitting me | It is frustrating and isolating, even under the best of circumstances (I feel like I have been fortunate in so many ways, and yet at times I feel the tremendous isolation of being part of something so odd and so very rare. |
| My father committed suicide when I was 11. My mother has attempted more than once. This is part of my problem with depression. | Teasing from other kids |
"Dad had Parkinson's Disease, I had tick bite prior to PRS onset - doctors say it's not related but I wonder."
My son "seems to have a hearing loss.. taking to doctor to have that checked.. School work .. he seems to be slower than other students.. he does not stay focused, often goes blank and has a hard time remembering things…"
A Doctor from the "Cleveland Clinic was treating until recent retirement, will be going to replacement pediatric rheumatologist in April."
"I am curious to see the results of this survey. This is the first time I have ever participated in something so personal and revealing. I hope we can all gain valuable information from all of our shared experiences. Thank you for taking the time out of your busy lives to conduct and participate in this survey."
"I had silicone injections in right cheek and chin in 1974. The silicone has stayed in place, and has not given me any trouble. At age 30 I began to have eyesight problems, on the side of the atrophy. At age 44, I started having Grand Mal seizures in my sleep."
"I haven't followed thru with medical care to the extent which I should have, I'm sure that there is much more damage than I'm aware of. Example, my skull changes continuously, my eye is getting more and more receded, and is always bloodshot and dry."
"My daughter is 6, and aside from the physical signs of Romberg's, we have not noticed her to be in any pain or discomfort as of yet. I hope this is a good sign."
"One of importance matters is depression from our appearance. Since Rombergs make people nervous, he or she is not easy to maintain relationship with other people.(Everybody look my face!!) But doctors I met said that they don't know the cause of Rombergs. I think the cause of Rombergs is stress. I'm a Korean. In my country, there are few person who was diagnosed Rombergs. I think regional factors affect this disease."
"Rombergs is something I have been living with for over 47 years - you learn how to adjust and accept. There is no cure and apparently they haven't even found the cause. I have been told by doctors, that it could be caused from either severe emotional or physical trauma. Mine seemed to reactivate during difficult periods of my life and seemed connected to an inflammation somewhere in my body."
"Thank you for taking the time to do this for all of us."
"Thank you so much for this outlet, it's not just a face problem, there are a lot of other aspects to this disease."
"Thanks for all the time you are contributing to this!"
"Two children not affected as far as I know."
"While I don't feel that I have a psychological disorder, I do feel that my self esteem has been affected by the condition over the years. I use my hair to cover the affected side and find myself subconsciously adjusting my hair when meeting new people. I feel that since my operation, this has improved and my confidence has improved. I will probably consider another procedure at some time as the fat injections really need a few repeats to get the desired effect."
"You are saints to do this! THANK YOU!!!"
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This was not a scientific survey.
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Last Updated February 4, 2017