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Where to go with undiagnosed sudden decline of vision in one eye?
I'm sorry for the long post …
To begin, I had a hysterectomy on December 4, 2018. The physician informed my husband that my heart rate had “bottomed out” during surgery. He told him that medicine was given, via IV, and that it returned to normal. Following the surgery, my blood pressure was elevated. It actually resulted in a delayed discharge. After I came home my BP continued to be elevated. I spoke to my doctor about it over the phone. Being that I felt fine and was not experiencing any other issues, I wasn’t extremely concerned. On the morning of January 15, 2019, I woke up with extremely blurred vision in my right eye and a severe pain/pressure behind my right eye (felt like I had been punched in the eye). In addition to my eye, I also felt severe pain/pressure behind my right ear and in my neck. The pain/pressure in my neck radiated into my right shoulder. I experienced several nose bleeds in my left nostril. My blood pressure and heart rate was elevated. I contacted the office of my primary care physician and they told me that I needed to go to the emergency room. I try to avoid any hospital because I am on a transplant medicine and I have a suppressed immune system. I thought I would wait it out and see if it would get better. The next morning, January 16th, I was still experiencing the symptoms. My husband took to me an urgent care that was within a local hospital. After all, it wasn’t an emergency department and they advertise that they are “the ONLY Urgent Care in the valley located within a hospital, allowing for the reduced costs of an urgent care with the full support of a hospital”. They diagnosed me with an ear infection and performed an EKG to rule out a, more serious, heart issue. From there, they prescribed me an antibiotic for the ear infection and sent me to the emergency department at a different hospital, which they are affiliated with. I was sent with the EKG printouts and a letter (from the NP that had evaluated me at the urgent care) stating concerns regarding the eye pain/pressure. In the ER my BP became dangerously high (176/139). I was immediately given medicine via IV and also given nitroglycerin to put under my tongue. The ER doctor repeated the EKG and told me that it wasn’t my heart. Despite what he had told me, he continued to order a chest x-ray and admitted me to the hospital. The next day, January 17th, I was seen by a cardiologist and he ordered a heart echo. He returned to inform me that he was going to discharge me but wanted me to return for an outpatient stress test (which took place in his office within the hospital). I mentioned the pressure/pain behind my eye, ear and the neck pain the every doctor (cardiologist and hospitalists) that entered my room prior to my discharge. They all just brushed it off. My discharge papers noted for me to follow up with my family doctor and to return to the cardiologist office for a stress test. The only answer I was sent home with was, “It’s not your heart”. Ummm, Hello! …. The NP at the urgent care center told me that. Needless to say, I wasn’t pleased with any of the services that I received. I was discharged on Thursday evening (1/17/19) and my husband contacted my optometrist the next day (1/18/19). They told him to bring me into their office immediately. At this time, my BP was still extremely elevated and my vison had not improved. The eye doctor was in disbelief that they discharged me due to my BP still being dangerously high and no improvement in my symptoms. Obviously, returning to the hospital was going to be a waste of time and money. She was so concerned that she wanted me to come back on Monday (1/21/19). She also gave us her cell phone number and instructed us to call her if I had ANY changes, good or bad, in either eye. Now, I finally felt a sense of comfort knowing that a medical professional actually showed a great deal of concern/worry. I followed up at her office on Monday. She was still concerned due to the exam and tests concluding that the vision in my right eye had not improved. She referred me to a local ophthalmologist. She said she wanted to see me on Wednesday, January 23rd, so that she could continue to monitor my vision closely because the specialist couldn’t see me right away. On Wednesday (1/23/19), following more testing and her exam, she told us that my vision had actually started to decline even more. She didn’t want to wait for that specialist to see me so she referred me to a different ophthalmologist. The next day, January 24th, I returned to the hospital/cardiologist office for the outpatient stress test. Following the stress test, I was seen by the ophthalmologist … actually two ophthalmologists. They performed more testing and wanted me to follow up in their office the following Monday, which I did. At that visit, on January 28th, following further evaluation, they discussed some potential concerns, as well as possible causes. From there, I was sent to the local trauma centers emergency department so they could order an emergency MRI (only way to get it done immediately without having to wait for insurance approval). They voiced a concern that a medicine (Prograf) that I was on for another health condition could be the cause of my symptoms. With that being said, they felt it would be best to send me to Duke Eye Center because the doctor who prescribed the medicine/treats a previous/current health condition (liver condition) is at Duke, as well. With that being said, I have been seen at Duke Eye Center several times (2/4/19, 2/18/19, 3/4/19 and 4/17/19) by two different eye specialists (ophthalmologist and a neuro-ophthalmologist) and also had a lot of testing done on my eyes. On March 1st, I consulted with the neuro-ophthalmologist and informed him that the vision in my left eye had started to have “episodes” of blurred vision, which come and go, and can last for hours at a time. As of my last visit on April 17th, I am still occasionally experiencing the blurred vision episodes in mu left eye and my right eye has never showed improvement. The neuro-ophthalmologist gave me good vibes the first time I seen him. I could just tell that he was extremely intelligent and I had confidence that he would find the underlying cause of my symptoms and come up with a successful treatment plan. After all, I have had a very good experience with the Gastroenterologist/Hepatologist, at Duke University Hospital, which has successfully treated my other health condition for several years. Therefore, I had no reason to not think that Duke Eye Center would be any different. Unfortunately, that wasn’t the outcome. On April 17th, I was told that my brain was not accepting/trusting the signals that my eye was sending. He continued to tell me that there isn’t anything that he can do and that my vision could eventually return to normal on its own. However, my vision has declined each time I have returned for a visit … not once have I been told of any improvement. I struggled with what I was told the entire (5 hour) trip home, throughout the night and I’m still struggling today (4/18/19). I’m not sure where to go from here. What I do know is that I'm not going to settle with the conclusion I was given yesterday. I just can’t just sit around, waiting to see if my vision ever returns to normal … not with it continuing to decline. Could it be something related to the hysterectomy? Is it something else? Is there any hope? Any advice would be appreciated.
To begin, I had a hysterectomy on December 4, 2018. The physician informed my husband that my heart rate had “bottomed out” during surgery. He told him that medicine was given, via IV, and that it returned to normal. Following the surgery, my blood pressure was elevated. It actually resulted in a delayed discharge. After I came home my BP continued to be elevated. I spoke to my doctor about it over the phone. Being that I felt fine and was not experiencing any other issues, I wasn’t extremely concerned. On the morning of January 15, 2019, I woke up with extremely blurred vision in my right eye and a severe pain/pressure behind my right eye (felt like I had been punched in the eye). In addition to my eye, I also felt severe pain/pressure behind my right ear and in my neck. The pain/pressure in my neck radiated into my right shoulder. I experienced several nose bleeds in my left nostril. My blood pressure and heart rate was elevated. I contacted the office of my primary care physician and they told me that I needed to go to the emergency room. I try to avoid any hospital because I am on a transplant medicine and I have a suppressed immune system. I thought I would wait it out and see if it would get better. The next morning, January 16th, I was still experiencing the symptoms. My husband took to me an urgent care that was within a local hospital. After all, it wasn’t an emergency department and they advertise that they are “the ONLY Urgent Care in the valley located within a hospital, allowing for the reduced costs of an urgent care with the full support of a hospital”. They diagnosed me with an ear infection and performed an EKG to rule out a, more serious, heart issue. From there, they prescribed me an antibiotic for the ear infection and sent me to the emergency department at a different hospital, which they are affiliated with. I was sent with the EKG printouts and a letter (from the NP that had evaluated me at the urgent care) stating concerns regarding the eye pain/pressure. In the ER my BP became dangerously high (176/139). I was immediately given medicine via IV and also given nitroglycerin to put under my tongue. The ER doctor repeated the EKG and told me that it wasn’t my heart. Despite what he had told me, he continued to order a chest x-ray and admitted me to the hospital. The next day, January 17th, I was seen by a cardiologist and he ordered a heart echo. He returned to inform me that he was going to discharge me but wanted me to return for an outpatient stress test (which took place in his office within the hospital). I mentioned the pressure/pain behind my eye, ear and the neck pain the every doctor (cardiologist and hospitalists) that entered my room prior to my discharge. They all just brushed it off. My discharge papers noted for me to follow up with my family doctor and to return to the cardiologist office for a stress test. The only answer I was sent home with was, “It’s not your heart”. Ummm, Hello! …. The NP at the urgent care center told me that. Needless to say, I wasn’t pleased with any of the services that I received. I was discharged on Thursday evening (1/17/19) and my husband contacted my optometrist the next day (1/18/19). They told him to bring me into their office immediately. At this time, my BP was still extremely elevated and my vison had not improved. The eye doctor was in disbelief that they discharged me due to my BP still being dangerously high and no improvement in my symptoms. Obviously, returning to the hospital was going to be a waste of time and money. She was so concerned that she wanted me to come back on Monday (1/21/19). She also gave us her cell phone number and instructed us to call her if I had ANY changes, good or bad, in either eye. Now, I finally felt a sense of comfort knowing that a medical professional actually showed a great deal of concern/worry. I followed up at her office on Monday. She was still concerned due to the exam and tests concluding that the vision in my right eye had not improved. She referred me to a local ophthalmologist. She said she wanted to see me on Wednesday, January 23rd, so that she could continue to monitor my vision closely because the specialist couldn’t see me right away. On Wednesday (1/23/19), following more testing and her exam, she told us that my vision had actually started to decline even more. She didn’t want to wait for that specialist to see me so she referred me to a different ophthalmologist. The next day, January 24th, I returned to the hospital/cardiologist office for the outpatient stress test. Following the stress test, I was seen by the ophthalmologist … actually two ophthalmologists. They performed more testing and wanted me to follow up in their office the following Monday, which I did. At that visit, on January 28th, following further evaluation, they discussed some potential concerns, as well as possible causes. From there, I was sent to the local trauma centers emergency department so they could order an emergency MRI (only way to get it done immediately without having to wait for insurance approval). They voiced a concern that a medicine (Prograf) that I was on for another health condition could be the cause of my symptoms. With that being said, they felt it would be best to send me to Duke Eye Center because the doctor who prescribed the medicine/treats a previous/current health condition (liver condition) is at Duke, as well. With that being said, I have been seen at Duke Eye Center several times (2/4/19, 2/18/19, 3/4/19 and 4/17/19) by two different eye specialists (ophthalmologist and a neuro-ophthalmologist) and also had a lot of testing done on my eyes. On March 1st, I consulted with the neuro-ophthalmologist and informed him that the vision in my left eye had started to have “episodes” of blurred vision, which come and go, and can last for hours at a time. As of my last visit on April 17th, I am still occasionally experiencing the blurred vision episodes in mu left eye and my right eye has never showed improvement. The neuro-ophthalmologist gave me good vibes the first time I seen him. I could just tell that he was extremely intelligent and I had confidence that he would find the underlying cause of my symptoms and come up with a successful treatment plan. After all, I have had a very good experience with the Gastroenterologist/Hepatologist, at Duke University Hospital, which has successfully treated my other health condition for several years. Therefore, I had no reason to not think that Duke Eye Center would be any different. Unfortunately, that wasn’t the outcome. On April 17th, I was told that my brain was not accepting/trusting the signals that my eye was sending. He continued to tell me that there isn’t anything that he can do and that my vision could eventually return to normal on its own. However, my vision has declined each time I have returned for a visit … not once have I been told of any improvement. I struggled with what I was told the entire (5 hour) trip home, throughout the night and I’m still struggling today (4/18/19). I’m not sure where to go from here. What I do know is that I'm not going to settle with the conclusion I was given yesterday. I just can’t just sit around, waiting to see if my vision ever returns to normal … not with it continuing to decline. Could it be something related to the hysterectomy? Is it something else? Is there any hope? Any advice would be appreciated.
While you post is long it offers no useful information. What is your visual acuity in each eye, what did the visual field test show, what did the optic nerve OCT show. What is the working diagnosis?
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