New update page 4. Choroidal Osteoma, update post #47 - Page 2

MrsDuck · 04-08-2015, 10:49 AM

It sounds like you found a great doctor. Praying for answers and healing.

knitlove · 04-08-2015, 11:19 AM

Praying

Katigre · 04-08-2015, 12:17 PM

When is your next appointment?

Sent from my Nexus 5 using Tapatalk

Pragmatist · 04-08-2015, 12:46 PM

Amythestmama · 04-08-2015, 08:57 PM

Quote:

Originally Posted by Katigre

When is your next appointment?

Sent from my Nexus 5 using Tapatalk

I don't know yet. I'm in a bit of a quandary because I'm not supposed to take Ibuprofen but Tylenol isn't even coming close to helping with my headache. They asked why I take Ibuprofen every 4-6 hours every day and I said bc my head hurts. They said that's too much ibuprofen. But I have to function you know? So when I call tomorrow about my next appointment, I need to ask what to do about the headache. I've been bad today and just gone ahead and taken Aleeve which is also a no no because it can increase bleeding. But I can't lay in bed all day because my head hurts so bad.

Little Forest · 04-08-2015, 09:06 PM

Sorry if I missed it, but have you had a dr investigate the cause of those HAs to rule out something sinister as a cause and try to come up with a treatment?
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mom23sons · 04-09-2015, 06:48 AM

Wow, what a scary experience. Will be praying they can restore your vision and that the costs are less than expected!

sweetpeasmommy · 04-09-2015, 09:41 AM

Praying

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Amythestmama · 04-10-2015, 09:43 PM

Had blood work drawn today. The dr okay'd taking Ibuprofen or whatever helped my headache. My appointment is Wednesday the 15th. My vision isn't any better, I can't sew for very long at a time bc I can't see right in front of me unless I close my left eye and when it's open, everything is wavy and weird. It makes me feel dizzy. Now that I've been thinking about it, I've had this headache around my left eye and on the left side of my head for about 3 months non stop. I've had weird episodes of dizziness in the last 3 months too. I never really thought about it but I wonder now if it's all connected.

Anyway. Now I have a bad cold again!

I wish it would go away already! I've had more colds since fall than I've ever had before in my life!

Hermana Linda · 04-10-2015, 09:57 PM

I was wondering if it was connected. Definitely ask the doctor.

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Amythestmama · 04-14-2015, 09:10 PM

Well, good news and bad news.
I have a Choroidal Osteoma with complications- choroidal neovascular membranes. Basically, an abnormal bone growth that is pressing hard into my eye with abnormal blood vessel clusters that are bleeding or could bleed anytime.
Bad news- there's nothing they can do about it. The dr said where it's at, surgery isn't an option. He said we could try shots of Lucentis at $3000 a shot and see if that helped slow/stop temporarily the growth and bleeding of those blood vessels. He said that if there was no improvement after 2-3 shots, then we'd discontinue them bc it would be pointless to dump that much money into something that wasn't helping anyway. The osteoma will keep growing and eventually it will force the retina to separate and I will go blind. It could be soon, it could be later, who knows?? It could be 6 months or 10 years.
Good news?? It's only in one eye and probably will only be in one eye.

Guess we'll take it huh? At least it's not a brain tumor like some people in my family have died from around my age!!
I don't know what to think. Ideas?

Hermana Linda · 04-14-2015, 09:13 PM

And

that it's not worse.

tempus vernum · 04-14-2015, 10:12 PM

I am sorry to read this

Glad it's not worse and praying for wisdom.

Little Forest · 04-14-2015, 10:19 PM

Oh, wow, I am so sorry to hear that. That is some news to take in.

He sounds like a good doctor. And, you are in God's hands too.

Praying for the best for you in whatever happens, and for good health and vision to remain in the other eye for the rest of your life!
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sweetpeasmommy · 04-14-2015, 10:29 PM

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04-08-2015, 10:49 AM	#16
MrsDuck Rose Bouquet Join Date: Dec 2012 Posts: 714	Re: Wet Macular Degeneration when you're only 35?? It sounds like you found a great doctor. Praying for answers and healing. __________________ ****************** Mrs Duck Blessed to be a Stay at Home-schooling Mama to: DS1 - Snugglebug - Nov. '08 DS2 - Wiggles - May '12

04-08-2015, 11:19 AM	#17
knitlove Rose Garden Join Date: Jan 2007 Location: Seattle area Posts: 21,260	Re: Wet Macular Degeneration when you're only 35?? Praying __________________ Wife to a wonderful DH for 19 years. Momma to my 29 weeker Early Bird who is thirteen and my little Wiggle Worm born 33 weeks who is nine. How do I have a teenager?! I don't feel ready for this.

04-08-2015, 12:17 PM	#18
Katigre Rose Garden Why thank you, it is naturally blue... Join Date: Mar 2005 Posts: 21,278	Re: Wet Macular Degeneration when you're only 35?? When is your next appointment? Sent from my Nexus 5 using Tapatalk

04-08-2015, 12:46 PM	#19
Pragmatist Rose Garden Join Date: Apr 2008 Location: Idaho Posts: 4,924	Re: Wet Macular Degeneration when you're only 35?? __________________ Sara (ISTJ) married to V since 7/99 Strawberry Shortcake- 3/07 Huckleberry Pie- 9/11

04-08-2015, 09:06 PM	#21
Little Forest Rose Garden Rich in girls. Join Date: Jun 2009 Location: Perth hills, Australia Posts: 6,915	Re: Wet Macular Degeneration when you're only 35?? Sorry if I missed it, but have you had a dr investigate the cause of those HAs to rule out something sinister as a cause and try to come up with a treatment? Posted via Mobile Device

04-09-2015, 06:48 AM	#22
mom23sons Rose Bouquet Join Date: Oct 2014 Location: Maine Posts: 614	Re: Wet Macular Degeneration when you're only 35?? Wow, what a scary experience. Will be praying they can restore your vision and that the costs are less than expected! __________________ Amie, wife to JB and mom to 3 amazing teenage sons. IT 19, CP 17 and EG 15. DON to the elderly . Living as simple as can be in Maine.

04-09-2015, 09:41 AM	#23
sweetpeasmommy Rose Garden Join Date: Aug 2008 Posts: 30,329	Re: Wet Macular Degeneration when you're only 35?? Praying Sent from my iPad using Tapatalk __________________ Amy eNFp Wife to ISTJ DH 1997 Mom to one Sweet Boy 10/2004

04-10-2015, 09:43 PM	#24
Amythestmama Rose Garden Join Date: Mar 2006 Posts: 8,470	Re: Wet Macular Degeneration when you're only 35?? Had blood work drawn today. The dr okay'd taking Ibuprofen or whatever helped my headache. My appointment is Wednesday the 15th. My vision isn't any better, I can't sew for very long at a time bc I can't see right in front of me unless I close my left eye and when it's open, everything is wavy and weird. It makes me feel dizzy. Now that I've been thinking about it, I've had this headache around my left eye and on the left side of my head for about 3 months non stop. I've had weird episodes of dizziness in the last 3 months too. I never really thought about it but I wonder now if it's all connected. Anyway. Now I have a bad cold again! I wish it would go away already! I've had more colds since fall than I've ever had before in my life! __________________ A- INFP Mama to dd M age 12.5; ds J age 11.5; ds K age 10; and ds Q age 7.5 Sewing4GirlsToday

04-10-2015, 09:57 PM	#25
Hermana Linda Administrator "air-mannah Leen-dah" it means Sister Linda in Spanish Join Date: Mar 2005 Posts: 51,859	Re: Wet Macular Degeneration when you're only 35?? I was wondering if it was connected. Definitely ask the doctor. Sent by Tapatalk from my phone __________________ My pages: Why Not Train A Child? and the FB Page as well as @WhyNotTrain on Twitter Read about how my husband was Pulled From The River By God

04-14-2015, 09:10 PM	#26
Amythestmama Rose Garden Join Date: Mar 2006 Posts: 8,470	Re: Wet Macular Degeneration when you're only 35?? Update page 2 Well, good news and bad news. I have a Choroidal Osteoma with complications- choroidal neovascular membranes. Basically, an abnormal bone growth that is pressing hard into my eye with abnormal blood vessel clusters that are bleeding or could bleed anytime. Bad news- there's nothing they can do about it. The dr said where it's at, surgery isn't an option. He said we could try shots of Lucentis at $3000 a shot and see if that helped slow/stop temporarily the growth and bleeding of those blood vessels. He said that if there was no improvement after 2-3 shots, then we'd discontinue them bc it would be pointless to dump that much money into something that wasn't helping anyway. The osteoma will keep growing and eventually it will force the retina to separate and I will go blind. It could be soon, it could be later, who knows?? It could be 6 months or 10 years. Good news?? It's only in one eye and probably will only be in one eye. Guess we'll take it huh? At least it's not a brain tumor like some people in my family have died from around my age!! I don't know what to think. Ideas? __________________ A- INFP Mama to dd M age 12.5; ds J age 11.5; ds K age 10; and ds Q age 7.5 Sewing4GirlsToday

04-14-2015, 09:13 PM	#27
Hermana Linda Administrator "air-mannah Leen-dah" it means Sister Linda in Spanish Join Date: Mar 2005 Posts: 51,859	Re: Wet Macular Degeneration when you're only 35?? Update page 2 And that it's not worse. __________________ My pages: Why Not Train A Child? and the FB Page as well as @WhyNotTrain on Twitter Read about how my husband was Pulled From The River By God

04-14-2015, 10:12 PM	#28
tempus vernum Rose Garden I am the mountain. I am not the storm and the storm is not me. -Ian Cron Join Date: Mar 2005 Posts: 28,913	Re: Wet Macular Degeneration when you're only 35?? Update page 2 I am sorry to read this Glad it's not worse and praying for wisdom. __________________ ~Spring always comes after winter~ 2 Corinthians 4:16 “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ”

04-14-2015, 10:19 PM	#29
Little Forest Rose Garden Rich in girls. Join Date: Jun 2009 Location: Perth hills, Australia Posts: 6,915	Re: Wet Macular Degeneration when you're only 35?? Update page 2 Oh, wow, I am so sorry to hear that. That is some news to take in. He sounds like a good doctor. And, you are in God's hands too. Praying for the best for you in whatever happens, and for good health and vision to remain in the other eye for the rest of your life! Posted via Mobile Device

04-14-2015, 10:29 PM	#30
sweetpeasmommy Rose Garden Join Date: Aug 2008 Posts: 30,329	Re: Wet Macular Degeneration when you're only 35?? Update page 2 Sent from my iPad using Tapatalk __________________ Amy eNFp Wife to ISTJ DH 1997 Mom to one Sweet Boy 10/2004

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