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Old 12-08-2008, 01:45 PM   #1
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di88 HB User
saw another occuloplastic surgeon

Hi all,


So I saw another occuloplastic surgeon for a second opinion and she said that she would do a Levator resection given my current levator function. The first surgeon had told me that levator resection was a big no no for me given the underlying muscle disease. So I'm very confused right now.
I know some people have undergone the levator resection--Just wondering what your experience with this surgery was...if things didn't turn out well- what went wrong? Also, I think it was sarah's post that mentioned this--but just from my research cpeo cannot be passed down by men/ dads if the mutation is in the mitochondria since only mom's contribute mitochondria to the baby. CPEO can also be due to mutation in the nuclear DNA in which case it could have been passed down by the dad.

Also wanted to say thanks for that interesting HIV/ ophthalmoplegia article...

Thanks all

Last edited by Administrator; 03-25-2010 at 06:16 PM.

 
Old 12-14-2008, 04:49 AM   #2
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Re: CPEO Part 3

Hi di88

Thanx for making my post a little more clearer about males being able to pass on CPEO. You are obviously correct that its only mum that passes on mitochondria but CPEO also uses the Nuclear DNA (or in my case it does) so its a 75/25 split as to who passed it on with mum being 75%, therefore my boys have the same chance of passing it on shoiuld they have gotten it of me.

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Old 12-15-2008, 04:15 PM   #3
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Re: CPEO Part 3

Hey sarah,
Just wondering how your docs were able to exactly figure out that your mutation was in the nuclear DNA. I had this blood test done where they are supposed to be able to test for a few specific mutations (don't know if the ones they test for are nuclear or mitochondrial) but it was negative for me. Is that how you found out?

all the best

 
Old 12-21-2008, 03:52 AM   #4
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Re: CPEO Part 3

Sarah,

I have had two levator resections on my right lid only. The first in 1983 didn't last more than a year. I had a second in 1991. The last surgery and recovery was difficult. I wasn't diagnosed with CPEO yet. I remember my eye not closing at night for several months so I really had to spread the cream in it to prevent drying. A severe complication with this type of surgery, especially for CPEO, is cornea drying and ulcers. Ophthalmoplegia prevents the eye from rolling up during sleep exposing the cornea to air. Also, the ophthalmologist said my surgery was like wrestling a bear; it took over three hours. I read the notes, he described the muscle as fatty and flimsy, not normal and he had to remove 9 mm. Possibly another reason why we are not good candidates. However, the repair did make an nice arch in the lid, cosmeticlly more normal and like the other lid. The ptosis had progressed but the arch is still there. Some people said they don't even notice something is wrong. Many normals squint. I would say there's probably a lot of ptosis repairs done on undiagnosed CPEOs, in other words, not knowing there is or documenting the mito. It's still hard to get diagnosed and ptosis usually proceeds the ophthalmoplegia. My lid is now affecting my field of vision. But I have so much scar tissue I don't think the LR would be wise. I've asked a very good neuro-opthal at Wash U for anything, a sling, or maybe just taking a little tuck of skin, something and he always declined. Now, I'm thinking about going somewhere else because I do need to see. To compensate for the droopy eyelid my forehead muscles strain, so now the right eyebrow is raised. I wear bangs to cover it up. I wish this could be prevented but since it wasn't fixed.

It is really hard to say what would be best for you, we are all a little different. I would suggest trying to find a neuro-ophthalogist who has experience with eye movement disorders. Familiar with CPEO may be asking too much in some areas.


Good luck,

Sandy

Last edited by Administrator; 03-25-2010 at 06:17 PM.

 
Old 12-22-2008, 01:22 PM   #5
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Re: CPEO Part 3

Sandy,

hi thanks for your response. Seems like you have been thru a lot. The one surgeon I saw had similar concerns for me: corneal drying and ulcers etc. He said that a levator resction was not a choice for me cuz of the underlying muscle pathology. The second surgeon that I saw however said she only considered the amount of levator function when deciding what type of surgery to do and right now she would do a levator resection. I am supposed to follow up with her in a few months. You know even with how bad things are right now, I would not get the surgery if I knew that things wouldn't get worse. But knowing this disease, I know that my lids are only going to droop more and at some point I have to get the surgery. What's worse is that right now, my Left lid is affected much more than the right so cosmetically speaking it looks sooo bad. And I completely understand about the forehead straining---its awful, I also have to constantly look chin up to be able to see. Anway, I noticed that your location was listed as Illinois--I am from around Chicago--I hope you don't mind me asking where u are from in IL. Thanks for all your help.

Di

 
Old 12-23-2008, 08:13 AM   #6
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chchips1 HB User
Re: CPEO Part 3

Hi All:

Just thought I'd share...

Two weeks ago the NY Metro chapter of the UMDF along with a sponsor Transgenomics hosted grand rounds with Dr. Bruce Cohen at Hackensack Hospital in NJ. He is a neuro pediatric doctor specializing in mito disorders at the Cleveland Clinic. He was reviewing and discussing general info on mitochondrial disorders so there was a lot of information to take in. A couple of things stood out though with regards to CPEO

He actually recommended that those of us with symptoms of CPEO should also have our thyroids checked. Some thyroid problems will either mimic CPEO symptoms and or will axacerbate our symptoms. I haven't read or heard that anywhere.

Also mentioned was the new finding that AIDS treatments possibly causing a rise in CPEO cases (he left that topic very open ended saying that info was very new on this with a very limited study being done)

He also mentioned they expect more studies on twins. He mentioned a study being done but then sited, for example, patients he'd seen, one set of twins whose genetics were identical however one twin presented with severe symptoms of Mito disease(I forgot which), while the other twin was a normal kid with no symptoms. Very interesting info to me and also frustrating at the same time.

Also informative he reviewed nutritional treatments and general breakdown of which and what vitamins to take. I was taking a lot of the vitamins he reviewed however I have to re-adjust all my quantities since in many cases I haven't been taking enough. I guess you live and learn.. We all just have to be pretty diligent in our own care and in figuring out our own treatments... There is no set plan and everyone has a different set of dynamics.

Best wishes to everyone for a very Merry Christmans and to a happy healthy 2009!

Charlene e

 
Old 12-24-2008, 12:37 PM   #7
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Re: CPEO Part 3

hi all,
Charlene, thanks for the great info...how do you find out about these events?
I have heard about thryoid disease (specifically hyperthyroidism usually caused by Grave's disease) manifesting as cpeo. I think there is inflammation and fatty infiltration of the extraocular muscles in this disease and so the muscles don't work very well. As far as I know, ptosis is not a common symptom though.

You mentioned changing the supplements you were taking. I am going to start taking Coenzyme Q10 150mg per my neurologist. Could u by any chance post a list of supplements u take and the dosages. It would be very helpful.

Hope you have a wonderful holiday.

Thanks
Di

 
Old 12-31-2008, 06:50 PM   #8
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Re: CPEO Part 3

Hi Di,

I now live far, far south of Chicago in C'dale, but still have friends in Chicago and go there from time to time. I'm originally from Uptown, then Rogers Park, graduated from Senn High School.

Happy New Year, (real time 9 PM here)

Sandy

Last edited by moderator2; 12-31-2008 at 08:14 PM. Reason: disallowed use

 
Old 01-06-2009, 09:43 AM   #9
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Re: CPEO Part 3

Hi Di:
I joined the UMDF and found out about the local chapter who seem like a nice group. They've had a few events I haven't been able to make but this is one of the first grand rounds they've hosted. Very interesting. I just wish I could have stayed more for the question and answer. It was after 9pm and my energy was totally crashing with another hour or so to drive home.
I'm at work so when I get home I'll locate my notes. Dr. Cohen reviewed the nutritional program and based dosage on weight. This might also be available on the UMDF website for ********. They made a MITO 101 dvd to distribute to medical personell etc.... I believe the quantities he reviewed were similar to the dvd.

I did cut back on a few supplements to help save money...
Vitamin C being the first to go. He's mentioned that while it's a good overall vitamin that no studies had shown this to be beneficial to help improve energy transport. Patients who'd been on it and then stopped noticed no differences.
Vitamin E has been stopped for the moment. It was mentioned that they have found that E can inhibit energy transport and could possibly cause more problems. I'm torn because of benefits I heard of with E especially with memory in later years. A number of studies has shown that seniors who had been on a diet of 800 IU's of E for years had much lower rates of Alzheimers or senile dimentia. For the moment, my future memory will have to be put to the side until I figure this vitamin out.

UMDF is a good source for info and they need financial support so please join and urge others to donate to them. They were the first real source I had for some reliable info on CPEO.

Have a great day and I'll get back to you on the doses info.

Charlene

 
Old 01-10-2009, 09:59 PM   #10
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Re: CPEO Part 3

Quote:
Originally Posted by di88 View Post
hi all,
Charlene, thanks for the great info...how do you find out about these events?
I have heard about thryoid disease (specifically hyperthyroidism usually caused by Grave's disease) manifesting as cpeo. I think there is inflammation and fatty infiltration of the extraocular muscles in this disease and so the muscles don't work very well. As far as I know, ptosis is not a common symptom though.

You mentioned changing the supplements you were taking. I am going to start taking Coenzyme Q10 150mg per my neurologist. Could u by any chance post a list of supplements u take and the dosages. It would be very helpful.

Hope you have a wonderful holiday.

Thanks
Di
I recently found this website which I am finding interesting. I had a ptosis repair in 1976 that left my eyelid partially open requiring a second surgery to try to get it to close. I still have some exposure keratopathy and use eye drops during the day and lubricant at night. That surgery was well before my CPEO diagnoses in 2000 at Walter Reed. I was sent there by an astute otpthalmologist with an interest in inherited diseases. The diagnosis was based on ruling out other diseases and doing an EMG. I did not have a muscle biopsy for an actual mitochondrial based diagnosis. The neuro-opthalmologists still follow my ptosis once or twice a yearm and take pictures to document the level of the eyelids. This year some young residents sent me for another EMG which still showed only the eye and facial muscles were impaired, not the skeletal muscles (yet). The neurologist prescribed CoQ10, 600mg/day in 200 mg increments with each of my three main meals. Since this is taken orally, the actual amount reaching the mitochondria is probably about 10 to 15% of the dose. Now at 72 years old, I too have lost some vision from the droopy eyelids; have to tilt my chin up to see up; use my forehead muscles to raise my eyelids, wear bangs to obscure that fact and get annoyed with friends who doubt such a diagnosis and continue to ask why I don't just get an cosmetic lid lift.

The CoQ10 is expensive, but it offers me some hope that I may get the energy in those muscles to lift my eye lids again.

 
Old 01-11-2009, 11:30 PM   #11
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Re: CPEO Part 3

I just started taking Cyto-Q, it's more bio-available form of co-q 10 and covered by insurance. I do a multiple vitamin, super B complex and D. I don't believe my eyes will improve, just hope not to progress as fast. I also want reduce the damage of reactive oxygen species so go out of my way to consume anti-oxidants.

CPEO with single mtDNA deletion have been found to have a lot of humanin, a peptide that may protected us from Alzeimers, so don't worry about the Vitamin E.

Sandy

 
Old 01-13-2009, 02:17 PM   #12
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Re: CPEO Part 3

Hi Sandy and Everyone:

Mind if I ask how old you are and what is your current vision is like? I'm 45 and have noticed more changes in the last year than ever before. Mostly with my night vision and depth perseption (only when looking down or on closer objects). Naturally I've got the other problems but I can't stand losing that night vision. Even feel that when I wear sunglasses. My eyes can't take bright sun but then I try sunglasses and they sometimes feel like they're too dark. Gets frustrating.

FYI-Another source for Coenzyme Q10 is with Tishcon.

If you are a member of the UMDF they offer a 50% discount. The liquid form of CoQ10 from this company has been used in a few studies where it was proven that blood levels of CoQ increased. I've used other manufacturers and never experienced any great difference when I've gone off the supplement. I've just started with this liquid form so I'll let you know how it works in the long run.

Charlene

Last edited by moderator2; 01-13-2009 at 02:21 PM. Reason: posted disallowed website(s)

 
Old 01-13-2009, 02:22 PM   #13
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Re: CPEO Part 3

Hi Dianne1936

wow. Very cool to hear from someone with our problem at your age. I know I was diagnosed about 25 years ago and there was virtually no information at that time! You mentioned you were diagnosed in 2000 but how long have you noticed symptoms? When did you first discover double vision etc? We've been hearing about how some other medical treatments or problems can bring on the symptoms of CPEO. Would that be the case with you or have you been dealing with this since your 20's? Just curious and I'd love to hear alittle more about how it progressed for you. Everyone seems to have their own story to tell.

Thanks,
Charlene

 
Old 01-13-2009, 07:41 PM   #14
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Re: CPEO Part 3

As a child I had double vision several times but the diagnoses was lazy eye. No ptosis was noted in my 20s. I had some symptoms in my early 30s: My husband would get annoyed when I could not see something that he asked me to look at on his/driver's side of the car.By that time we were past it and I could not see it by just turning my head (eye muscles did not move the eye far enough to the side). I would have to turn around in the seat. He thought I was being difficult. I didn't know that I should have been able to see it. I have also had problems with night blindness and night depth perception since my 30s. I can't gauge the distance to the taillights ahead. I also have problems with bright light, some is probably from dry eyes so I make sure to have the lubricant eye drops and the dark glasses on hand. I tried Restasis but got no increase in tears and it burned. I read in the product brochure that only 17% are helped by it so I gave it up.
The surgery for ptosis of the right eyelid was in 1976 when I was 40. I did not know I had the ptosis because it did not interfere with my sight. With hindsight, that surgery should not have been done. My mother had many of the symptoms of CPEO but was never diagnosed. She died in 2004 at age 92. I have a close up picture of my great-grandmother as an adult which shows her ptosis. I think my CPEO came via my maternal Irish ancestors from County Kildare who migrated to the USA during the first potato famine. Maybe the rotten potatoes caused the mutation !!! My doctors are learning about this disease at the same time as I am. it is rare, but that could be due to a failure to recognize and diagnose it. I will try to find and sign up for the group mentioned in this thread.

 
Old 01-13-2009, 07:44 PM   #15
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Re: CPEO Part 3

Charlene,
I will try to find UMDF and join them.Thanks.
Diane

 
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