Re: Naion eye progression
Thank you Scott for answering all my questions ?? the dr did tell me not to do anything dangerous bc I need to keep that good eye. We are going on vacation the end of march and she did say no snorkeling or scuba diving now. Wondering if that is just for now or forever. Do you know if people with NAION can go in airplanes?
On Sun, Feb 19, 2023 at 9:52 PM Scott MacCumber via <scottmac1234= [email protected]> wrote:
Hi Lisa, I don¡¯t have sleep apnea. After much testing, it revealed no typical risk factors except for small cup to disk ratios in both eyes. 0.2 in affected eye and 0.1 in good eye.? Always good bp,?on no medications and overall health was very good.? The only thing different in my life for the 3 months leading up my naion was a lot of stress at work and at home.? Can¡¯t be sure but I think that messed with my otherwise normal bp.
8 years later, don¡¯t think about it so much, and just trying to stay healthy to save my good eye.
Take care...Scott On Sunday, February 19, 2023, 7:45 PM, Lisa f <Lisabieznieks@...> wrote: Gosh,, thanks for sharing. I have sleep apnea do you? Seems like quite a few of us do? On Sun, Feb 19, 2023 at 9:25 PM Scott MacCumber via <scottmac1234= [email protected]> wrote:
Further to Lisa¡¯s question about progression. ? August 22 was normal checkup. October 8 was first photo of naion. November 4 shows further hemorrahaging. At that point I had lost my central vision. April 15 shows how it has looked since then,
Scott
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Re: Naion eye progression
Hi Lisa, I don¡¯t have sleep apnea. After much testing, it revealed no typical risk factors except for small cup to disk ratios in both eyes. 0.2 in affected eye and 0.1 in good eye. ?Always good bp,?on no medications and overall health was very good. ?The only thing different in my life for the 3 months leading up my naion was a lot of stress at work and at home. ?Can¡¯t be sure but I think that messed with my otherwise normal bp.
8 years later, don¡¯t think about it so much, and just trying to stay healthy to save my good eye.
On Sunday, February 19, 2023, 7:45 PM, Lisa f <Lisabieznieks@...> wrote: Gosh,, thanks for sharing. I have sleep apnea do you? Seems like quite a few of us do? On Sun, Feb 19, 2023 at 9:25 PM Scott MacCumber via <scottmac1234= [email protected]> wrote:
Further to Lisa¡¯s question about progression. ? August 22 was normal checkup. October 8 was first photo of naion. November 4 shows further hemorrahaging. At that point I had lost my central vision. April 15 shows how it has looked since then,
Scott
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Re: Naion eye progression
Gosh,, thanks for sharing. I have sleep apnea do you? Seems like quite a few of us do?
On Sun, Feb 19, 2023 at 9:25 PM Scott MacCumber via <scottmac1234= [email protected]> wrote:
Further to Lisa¡¯s question about progression. ? August 22 was normal checkup. October 8 was first photo of naion. November 4 shows further hemorrahaging. At that point I had lost my central vision. April 15 shows how it has looked since then,
Scott
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Further to Lisa¡¯s question about progression. ? August 22 was normal checkup. October 8 was first photo of naion. November 4 shows further hemorrahaging. At that point I had lost my central vision. April 15 shows how it has looked since then,
Scott
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Re: Immunotherapy induced NAION
Hi Lisa, I first noticed a loss of vision in the bottom half of my left?eye on October 6, 2014, but I still had my central vision. ?3 1/2 weeks later I lost my central vision and on November 4, 2015, a picture taken by my optometrist showed that I had more hemorraghing, either as a result of continual progression or a second attack in that eye. ?And on November 26th, my neuro-ophthalmologist said I still had some swelling of the optic nerve. ?So mine took a while to settle down, probably 2 months. ?It does take getting used to in the first few?months. ?My vision seemed different depending on the lighting. ?As for glasses, they can¡¯t help the field of vision that is lost but what I have done is kept the same prescription I had to assist me with my remaining peripheral and upper eye vision.
That¡¯s my experience...Scott?
On Sunday, February 19, 2023, 6:06 PM, Lisa f <Lisabieznieks@...> wrote: Idk.. this is so new for me I had 20/ 20 vision before this happened so I¡¯m not used to my eye being blurry. Maybe the eye has settled in. When I¡¯m outside it¡¯s different , when I close the other eye it¡¯s different so I¡¯m just getting used to it I guess. It¡¯s just interesting to hear other¡¯s experiences. I was at the neurologist opthamology 3 weeks ago and she said she will see me in 6 weeks to get my vision checked. I asked about glasses and she said to wait the six weeks for that. Do most people with this get glasses to help? Lisa, ? I am not a doctor* so I don¡¯t know. Its just that I personally had not heard of progression going longer than a couple of weeks, and I know that there are some things that have similar symptoms to NAION (some of which are actually treatable). So I just wanted to alert you in case. But it sounds like you got top-of-the-line care. Not everyone does.? My apologies. ? Best,
Adam
? *I can tell you that my NO advised me not to exercise until the optic disk swelling went down¡ª6 to 8 weeks. ? Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away? Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
Idk.. this is so new for me I had 20/ 20 vision before this happened so I¡¯m not used to my eye being blurry. Maybe the eye has settled in. When I¡¯m outside it¡¯s different , when I close the other eye it¡¯s different so I¡¯m just getting used to it I guess. It¡¯s just interesting to hear other¡¯s experiences. I was at the neurologist opthamology 3 weeks ago and she said she will see me in 6 weeks to get my vision checked. I asked about glasses and she said to wait the six weeks for that. Do most people with this get glasses to help?
Lisa, ? I am not a doctor* so I don¡¯t know. Its just that I personally had not heard of progression going longer than a couple of weeks, and I know that there are some things that have similar symptoms to NAION (some of which are actually treatable). So I just wanted to alert you in case. But it sounds like you got top-of-the-line care. Not everyone does.? My apologies. ? Best,
Adam
? *I can tell you that my NO advised me not to exercise until the optic disk swelling went down¡ª6 to 8 weeks. ? Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away? Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
Lisa, ? I am not a doctor* so I don¡¯t know. Its just that I personally had not heard of progression going longer than a couple of weeks, and I know that there are some things that have similar symptoms to NAION (some of which are actually treatable). So I just wanted to alert you in case. But it sounds like you got top-of-the-line care. Not everyone does. ?My apologies. ? Best,
Adam
? *I can tell you that my NO advised me not to exercise until the optic disk swelling went down¡ª6 to 8 weeks.
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From: [email protected] < [email protected]> On Behalf Of Lisa f Sent: Saturday, February 18, 2023 7:52 PM To: [email protected]Subject: Re: [NAION] Immunotherapy induced NAION ? Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away? Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
And PS, if my explanation wasn't clear before... that is very similar to what happened to me...partial darkness at the beginning, followed by full field of vision loss (the tissue paper effect) in the affected eye.
I think so.? Mine was a couple weeks of changes before it settled into what I have now.
Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away? Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
I think so.? Mine was a couple weeks of changes before it settled into what I have now.
Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away? Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away?
Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ? ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse. ? Take care, Adam ? ?
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From: [email protected] < [email protected]> On Behalf Of Lisa f Sent: Saturday, February 18, 2023 4:07 PM To: [email protected]Subject: Re: [NAION] Immunotherapy induced NAION ? Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
STAY HYDRATED!
Diane Keasler
Life is the school, love is the lesson.
On Saturday, February 18, 2023 at 04:07:04 PM EST, Lisa f <lisabieznieks@...> wrote:
Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION
Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡?
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Re: Immunotherapy induced NAION- Migraines
Thanks so much, Clare, for sharing the events of your "perfect storm."? I find it so helpful to know what may have contributed to others' NAION onset and what might be good for me to avoid.
Diane Keasler
Life is the school, love is the lesson.
On Saturday, February 18, 2023 at 12:18:26 PM EST, Clare C via groups.io <chcommon@...> wrote:
Hi All,?
I have had right sided migraines with and without aura's since I started BCP in my 20's.? My NAION is in my right eye.?The headaches (HA's) have lessened after menopause (I am now 61) but still persist.? Aura's usually not present anymore.? Anecdotally, while hiking on vacation 9 days before my NAION episode, I experienced a bad altitude HA.? The HA resolved but did persist intermittently for the next several days but not at the same intensity.
?
?
2 days before my NAION episode I did note some blurring/rippling in my visual field that resolved.? It is this area that is now affected permanently so in hindsight something was already going on within my eye.? On the day of my NAION episode I had a massage.? While prone with my head was resting in the cradle, I suffered eye pain/pressure in my right eye which resolved with repositioning.? (I've had massages for over 30 years due to a back issue and never experienced eye pain with a massage prior to that day).? That evening, several hours later, I noted the visual defect in my right inner eye that persists to this day.? My ophthalmologist told me there may be a connection between crowded optic disc and venous congestion leading to compartment syndrome and NAION but most of the time the cause of our NAION is unknown (as we all know).? He?advised me to avoid laying my head in a massage cradle and to try and avoid exercises when I work out that would have the blood pooling in my head.? I think that is a reasonable suggestion.? He did suggest that I may want to pursue better control of my HA¡¯s.??
?
Something upset the eye¡¯s autoregulation, I will never know for sure.? I suspect it was a combination of many factors that led to my NAION episode, a "perfect storm" so to speak.? I too suspect there is a relationship between have migraine HA and NAION, perhaps it sets us up for developing NAION (along with our crowded eye structure).? Hopefully there will be more research in this area.???
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Re: Immunotherapy induced NAION
No, it has never changed/gotten better once it stabilized after the swelling went down. That is, at the beginning it was dark at the top and I could see the bottom half.? Now it's mostly not so dark but pretty blurry in my whole field of vision in that one eye...like looking through tissue paper.
On Sat, Feb 18, 2023, 11:25 AM Brandi Coronado < bdc@...> wrote:
Bobbie, did your vison ever get better and if so how long before it did? Thanks, Brandi? ? On Saturday 18/02/2023 at 6:58 am, Bobbie James wrote: Debra, I too have had migraines since my 30s, I'll say.? I'm 61 now and had my NAION episode right after I turned 58.? I sort of stopped having migraines when I hit menopause, but still get headaches on the regular.? I feel like there has to be a connection there... but I've no science to back that up...
Does anyone have any research?or experience with the connection between Migraines with or without Aura and NAION? I have had MWA's?since 23 years old (I am now 72; NAION in left eye preceded by MWA in lower left eye that would not go away). Going to top Headache Neurologist at Weil?Cornell in NYC who says there is some research but not enough?to make the connection yet. DEBRA BROWN-GROSSMAN, MPH, RDN, CDEPediatric and Adolescent Nutrition Specialist Adult Nutrition and Weight Management Consultant 518-888-2929? ?fax: 518-751-2403
Hello,? Yes, please share which?Dermatological immunotherapy you used. A few weeks ago, I?completed a 12-day round of?Fluorouracil topical 5% that my NO pre-approved. I have not noticed any vision change, but my migraines have returned. Thank you,
Do you know the cream you were prescribed? I was just prescribed SLUOROURACIL and CALCIPOTRIENE.
I was chatting to my neuro-opthamologist about the possibility of my past immunotherapy treatment (for skin precancers) causing my NAION. He said it was a strong possibilty although he has no evidence of it being the cause.?
I was using a topical immunotherapy ointment which raises the level of beta interferon levels in the body. The theory is that the higher levels of interferon leads to the immune system putting down deposits in the optic nerve.
In doing some research myself I came across a couple of articles.
Ocular side effects of biological agents in oncology: what should the clinician be aware of?
Ocular side effects of novel anti-cancer biological therapies
Has anybody else had immunotherapy and developed NAION shortly after?
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Re: Immunotherapy induced NAION- Migraines
Hi All,?
I have had right sided migraines with and without aura's since I started BCP in my 20's.? My NAION is in my right eye.?The headaches (HA's) have lessened after menopause (I am now 61) but still persist.? Aura's usually not present anymore.? Anecdotally, while hiking on vacation 9 days before my NAION episode, I experienced a bad altitude HA.? The HA resolved but did persist intermittently for the next several days but not at the same intensity.
?
?
2 days before my NAION episode I did note some blurring/rippling in my visual field that resolved.? It is this area that is now affected permanently so in hindsight something was already going on within my eye.? On the day of my NAION episode I had a massage.? While prone with my head was resting in the cradle, I suffered eye pain/pressure in my right eye which resolved with repositioning.? (I've had massages for over 30 years due to a back issue and never experienced eye pain with a massage prior to that day).? That evening, several hours later, I noted the visual defect in my right inner eye that persists to this day.? My ophthalmologist told me there may be a connection between crowded optic disc and venous congestion leading to compartment syndrome and NAION but most of the time the cause of our NAION is unknown (as we all know).? He?advised me to avoid laying my head in a massage cradle and to try and avoid exercises when I work out that would have the blood pooling in my head.? I think that is a reasonable suggestion.? He did suggest that I may want to pursue better control of my HA¡¯s.??
?
Something upset the eye¡¯s autoregulation, I will never know for sure.? I suspect it was a combination of many factors that led to my NAION episode, a "perfect storm" so to speak.? I too suspect there is a relationship between have migraine HA and NAION, perhaps it sets us up for developing NAION (along with our crowded eye structure).? Hopefully there will be more research in this area.???
|
Re: Immunotherapy induced NAION
Bobbie, did your vison ever get better and if so how long before it did? Thanks, Brandi? ? On Saturday 18/02/2023 at 6:58 am, Bobbie James wrote:
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Debra, I too have had migraines since my 30s, I'll say.? I'm 61 now and had my NAION episode right after I turned 58.? I sort of stopped having migraines when I hit menopause, but still get headaches on the regular.? I feel like there has to be a connection there... but I've no science to back that up...
Does anyone have any research?or experience with the connection between Migraines with or without Aura and NAION? I have had MWA's?since 23 years old (I am now 72; NAION in left eye preceded by MWA in lower left eye that would not go away). Going to top Headache Neurologist at Weil?Cornell in NYC who says there is some research but not enough?to make the connection yet. DEBRA BROWN-GROSSMAN, MPH, RDN, CDEPediatric and Adolescent Nutrition Specialist Adult Nutrition and Weight Management Consultant 518-888-2929? ?fax: 518-751-2403
Hello,? Yes, please share which?Dermatological immunotherapy you used. A few weeks ago, I?completed a 12-day round of?Fluorouracil topical 5% that my NO pre-approved. I have not noticed any vision change, but my migraines have returned. Thank you,
Do you know the cream you were prescribed? I was just prescribed SLUOROURACIL and CALCIPOTRIENE.
I was chatting to my neuro-opthamologist about the possibility of my past immunotherapy treatment (for skin precancers) causing my NAION. He said it was a strong possibilty although he has no evidence of it being the cause.?
I was using a topical immunotherapy ointment which raises the level of beta interferon levels in the body. The theory is that the higher levels of interferon leads to the immune system putting down deposits in the optic nerve.
In doing some research myself I came across a couple of articles.
Ocular side effects of biological agents in oncology: what should the clinician be aware of?
Ocular side effects of novel anti-cancer biological therapies
Has anybody else had immunotherapy and developed NAION shortly after?
|
Re: Immunotherapy induced NAION
Debra, I too have had migraines since my 30s, I'll say.? I'm 61 now and had my NAION episode right after I turned 58.? I sort of stopped having migraines when I hit menopause, but still get headaches on the regular.? I feel like there has to be a connection there... but I've no science to back that up...
Does anyone have any research?or experience with the connection between Migraines with or without Aura and NAION? I have had MWA's?since 23 years old (I am now 72; NAION in left eye preceded by MWA in lower left eye that would not go away). Going to top Headache Neurologist at Weil?Cornell in NYC who says there is some research but not enough?to make the connection yet. DEBRA BROWN-GROSSMAN, MPH, RDN, CDEPediatric and Adolescent Nutrition Specialist Adult Nutrition and Weight Management Consultant 518-888-2929? ?fax: 518-751-2403
Hello,? Yes, please share which?Dermatological immunotherapy you used. A few weeks ago, I?completed a 12-day round of?Fluorouracil topical 5% that my NO pre-approved. I have not noticed any vision change, but my migraines have returned. Thank you,
Do you know the cream you were prescribed? I was just prescribed SLUOROURACIL and CALCIPOTRIENE.
I was chatting to my neuro-opthamologist about the possibility of my past immunotherapy treatment (for skin precancers) causing my NAION. He said it was a strong possibilty although he has no evidence of it being the cause.?
I was using a topical immunotherapy ointment which raises the level of beta interferon levels in the body. The theory is that the higher levels of interferon leads to the immune system putting down deposits in the optic nerve.
In doing some research myself I came across a couple of articles.
Ocular side effects of biological agents in oncology: what should the clinician be aware of?
Ocular side effects of novel anti-cancer biological therapies
Has anybody else had immunotherapy and developed NAION shortly after?
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You¡¯re right. No one knows for sure and it seems everyone¡¯s story is a little different. I took Amoxicillin and then two weeks later I got NAION. I¡¯ve been told it was a coincidence. Probably so. ?I was also under some stress at the time.?
Trying to be extra careful, but this sinus infection has really wiped me out.?
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On Feb 17, 2023, at 5:49 PM, GaryGBrown via groups.io <bhmvol@...> wrote:
?And no one knows if the ibuprofen or the cortisone shot had any effect either.?
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And no one knows if the ibuprofen or the cortisone shot had any effect either.?
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GaryGBrown