Hi there,
My Wife(xxxxxx) was diagnosed with ICE(Irido-Corneal Endothelial) Syndrome
6 months ago (pls. see below the various reports from the doctors).
We are told that there is no cure/solution for this problem at this
time and that this situation can further lead to
a) Corneal transplanation
AND/OR
b) Glaucoma
Her condition has been getting worse(pls. see report below)
over the last 6 months and especially, over the last month
I have searched for ICE in few search engines including goo.., vivi...
and got some information including a few books. I'm requesting more
accurate help/direction from you.
Questions
=========
1) What is the latest research/treatment/cure(links and summary) on
her disease/syndrome ?
a) In the USA
b) elsewhere in the world(if the rest of the world is better than US)
c) Does USA have the best option for getting her treatment ?
c2) If not, which are the other options ?
2) Which hospital(s) has the best chance of treating her ?
a) Which doctor(s) has done considerable research and
has had success in treating ?
b) How do we go about narrowing down to few doctors/'research facility' ?
3) How much would it cost(approximately) for the treatment ?
a) Would a typical Employer provided Insurance provide for such a treatment ?
4) Is there any alternate medicine for this situation ?
Where would we start ?
(Note : We have tried Homeopathy medicine and Ayurvedic medicine for the last
6 months and have so far not found any improvements.)
INFO : None of her parents OR any close relatives have any eye, liver
OR heart diseases. She does not have any other illnesses at this point
or earlier.
Any other information leading to her treatment gladly welcome.
Thank you very much,
Best Regards,
anjanbacchu, Oregon
============xxxxxxxxx BEGIN REPORT NO. 0 ================================
Doctor in Bangalore. Dated 25th Jan 2004
NETRADHAMA, SUPERSPECIALITY EYE HOSPITAL, BANGALORE
Ms. XXXXX, is a bright young lady of 27 years, presented to us
on 21st Jan 04 with complaints of redness, watering and pain in the
right eye, on and off over a period of one year.
On Examination, uncorrected visual acuity was 20/20 OU, with IP
of 22mmHg OU, with full ocular motility. Right eye revealed corneal
edema with bullae in the inferotemporal quadrant with the rest of the
cornea being normal. Iris was stretched with atrophic patches.
There was 360° closure of the angle with irido-corneal adhesions.
Fundus revealed a cupping of 0.6. Rest of the findings in right eye
were within normal limits. Left eye examination showed normal anterior
segment. Gonioscopy showed open angles in all 4 quadrants. Fundus
examination showed optic disc cupping of
0.4 with rest of fundus being normal.
UMB (Ultrasound biomicroscopy) findings of right eye were
corroborative of the clinical findings.
A diagnosis of R/E ICE syndrome ?Chandler's variant was made.
She was started on Iotim 0.5% eye drops bd in both the eyes as
prophylaxis. This apart,
no other active intervention was felt necessary, as her vision was good.
The patient came back on 24th Jan 04 on an unscheduled visit.
She was referred by an ophthalmologist elsewhere who had recorded an
IOP of 28mmHg in the right eye. On examination, the corneal edema had
spread to the center and IOP of 28 mmHg OD was confirmed on
applanation. Rest of the findings were same
as before. On enquiry she admitted to not having started applying Iotim 0.5%
which was prescribed on her previous visit. She was started on Acetazolamide
sustained release caps(Iopar SR) 250 mg bd and Iotim 0.5% eye drops bd and
advised follow up after 4 days. Subsequently on follow up her IOP was 16 mmHg.
Dr. D
============xxxxxxxxx END REPORT NO. 0 ================================
============xxxxxxxxx BEGIN REPORT NO. 1 ================================
Shankar Netralaya, Bangalore Report Dated 8th Jan 2004.
Ms. xxxxxx, 27 yr old, female, (our MRD no : BNG 2468/ 906094)
was seen on 8th Jan 2004 with complaints of overlapping image since
10 days. She was diagnosed to have Irido-Corneal Endothelial (ICE)
syndrome, chandler's variant at the Shankar Nethralaya-Chennai. Patient
had come for a regular follow-up. On presentation, she was on Hypersol
eye drops 4 times per day in the right eye.
On examinations, her best-corrected visual acuity was 6/6 N6 in the
right eye and -0.25DS(6/6) N6 in the left eye. Extra ocular movements
were full. Slit lamp examination of the right eye revealed mild
blepharoptosis inferotemporal quadrant of the peripheral cornea showed bullous
keratopathy, extensive peripheral anterior synechiae, iridoschisis, and clear
lens. Left eye was within normal limits. Applanation tension was 19mmHg and
16mmHg in the right and left eye respectively. Four-mirror gonio revealed
360° closed in the right eye and left eye showed 360° angles structures open.
Fundus examination with indirect ophthalmoscope and +78.0D revealed 0.5-0.6:1
cup disc ratio in the right eye, 0.4:1 in the left eye, healthy neuro-retinal
rim, attached retina and healthy macula in both the eyes.
Repeat Applanation tension was 18 mm Hg and 16 mmHg respectively.
Ms. xxxxxx was re-explained about ICE syndrome - chandler's variant.
The possibility of corneal decomposition and Glaucoma and visual prognosis
was discussed and to have close follow-up. She was advised to continue
Hypersol 4-6 times a day and to review afer 3 months or as and when required.
Sd/-
Dr. C
============xxxxxxxxx END REPORT NO. 1 xxx ================================
============xxxxxxxxx BEGIN REPORT NO. 2 ================================
Shankar Netralaya Report Dated 25 Sep 2003
MEDICAL RESEARCH FOUNDATION, CHENNAI(MADRAS)
===========================================
Mrs. xxxxxx, a 27 yr old lady was seen on
24/Sep/2003 in our institute with history of watering since Apr 2003
in the right eye. She gave history of chicken pox at six years of age
which subsided without sequelae. Previous intraocular recording vary
between 16 mmHg in both the eyes with applanation tonometer and 28mmHg
and 21 mmHg in right and left eye respectively with teh Alpoff tonometer
elsewhere. She was suspected to have psoriasis and not on treatment. She
was using Hypersol Eye Drop three times a day in the right eye for
one week when presented here.
On examination, her visual acuity recorded 6/6;N6 in both eyes with
-0.25DS in the left eye and plano correction in the right eye. There was
a minimal ptosis in the right eye probably blepharospasm. Anterior segment
examination showed corectopia, iridoschisis like features and extensive
peripheral anterior synechiae and the inferotemporal quadrant of the
peripheral cornea showed bullous keratopathy. Corneal diameter in both
the eyes measured 10 mm horizontally and 9.5 mm vertically. Applanation
tension recorded 14 mmHg in the right eye and 13 mmHg in the left eye.
Gonioscopy showed retina 360° closed in the right eye. Left eye showed
open angles.
Fundus examination was within normal limits. Disc showed 0.6:1 cup
disc ratio vertically in the right eye and left eye disc ratio
vertically in the right eye and left eye showed 0.4-0.5 cup disc ratio.
The rim was healthy. Humphrey visual fields were within normal limits.
Consecutive intraocular pressure checks recorded between 14-16 mmHg in
the right eye and 13-15 mmHg in the left eye. Her pachymetry done
elsewhere showed 567 microns in the right eye and 554 microns in the
left eye. Specular microscopy done in our institute showed polymegathism
grade-V in the right eye with 1023 cell mm³ with 61% hexagonality.
Left eye showed 3184 mm³ and 69% hexagonality.
She was seen in the Cornea Clinic and was advised continue with the
hypersol eyedrops. She was seen in the Glaucoma Clinic and was diagnosed
as having ICE syndrome,? ICE chandler's syndrome variant. The chances of
corneal decompensation and development of glaucoma was discussed with the
patient and the need for regular followup is explained.
At present since the intraocular pressure is recorded normal and the visual
field's being normal, she was advised no treatment. She can continue with
Hypersol eyedrops four times a day in the right eye with tear supplements.
The option of using Tab. Acyclovir in case of exacerbation in certain centers
as practiced is discussed with the patient. At present it was decided not to
use the Tab. Acyclovir and can be reserved for exacerbation. She needs to
followup her intraocular pressure and corneal evaluation once in four months
and visual fields can be repeated if necessary once in eight months.
Sd/-
Dr. B
==========xxxx END REPORT NO. 2 xxxxxxxxxxxxxxxxxx==================------
============xxxxxxxxx BEGIN REPORT NO. 3 ================================
Narayana Nethralaya, Bangalore Report #3.Dated 26th July 2003.
Mrs. xxxxxx was first seen here on 22nd July 2003 with complaints
of watering and irritation in the right eye(RE) since 3 months.
On Examination, visual acuity was 6/6 N6 in both eyes, SLE of RE revealed
corneal decompensation with oedema and bullous keratopathy in the
inferotemporal quadrant with mild corectopia, broad PAS with iris atrophic
changes. A/S of LE was normal, IOP was 18 and 16 Hg in RE & LE respectively.
Corneal diameter was 10.5 mm in both eyes central corneal pachymetry was 557 m
in RE & 554 m in LE and affected periphery in RE, corneal thickness was 762 m.
Disc and fields were normal in both eyes. A diagnosis of ICE syndrome in RE
with predominant corneal and iris changes with no evidence of glaucoma at
present was made. Patient was put on lubricants and hyper tonic agents. She
has been advised review after 3 months.
Sd/-
Dr. A
==========xxxx END REPORT NO. 3 xxxxxxxxxxxxxxxxxx==================------ |
Clarification of Question by
anjanbacchu-ga
on
16 Feb 2004 12:56 PST
Hi leader,
Thank you for the clarification. I apologize for the delay in clarification.
1. A detailed study on ICE Syndrome for the patients of this disease.
Available on Amazon.com for $29, 128 pages. You might already know
about this.
RESP : Yeah, I have already ordered the book on Amazon.
2. A free report on ICE Syndrome for the patients from a medical
society. Free Report.
RESP : Good.
3. Other minor articles briefly outlining the facts about ICE Syndrome.
RESP : Good.
Where to Treat:
1. Information on the best hospitals in America which are known for
their eye care centers (Based on a detailed ranking criteria from an
authoritative magazine known for ranking US institutions AND another
ranking by the leading authority on Ophthalmology)
RESP : Good
2. Information on the top hospitals for eye care in Europe including
two medical centers that many claim to be the best in the world.
RESP : Good
Which Doctors:
1. Information on three doctors and their contact information, who are
known to be the leading specialists of ICE Syndrome in USA.
RESP : Good.
2. A very detailed Search Database that provides you information on
the Glaucoma experts, ophthalmologists and various other eye doctors.
RESP : Good
3. Names of societies that can help you in your research.
RESP : Good
Cost of Treatment
How much does it cost and if your employer will cover the costs?
(Based on the recommendations of a Senior Ophthalmology Resident at
NYU).
RESP : Good.
=========
I am trying to find how many of my questions got answered.
Most of Question 1 is left unanswered.
1a) -- although I want to know the "LATEST" research -- pointers to
a lil OLD research is fine but NEWER is preferable.
1b) I wanted to know about research outside of US ?
Also, do you have an idea how dated these are -- "Other minor
articles briefly outlining the facts about ICE Syndrome"
2) You have answered Question 2 to my expectation.
If you can add what research these doctors have done, that will
be more useful.
3) This seems to be answered too
4) How about my Q 4 ?
Thanks again, I look forward to hearing from you soon,
Best Regards,
anjanbacchu
|
