Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello All,
It's been a while since I've been on here. Life, or rather my health, has been all sorts of interesting.
My eyes had been bothering me. I was seeing "lightning" and some distortion in my peripheral vision, but it wasn't horrible. My thinking was that I would ask the doctor about it next time I saw him, which I did. He simply said I needed to see an eye doctor.
"That's fine," I thought. I need to get my contacts/eye glass prescription updated anyway. So, I waited a couple months until it was convenient.
When I finally saw my eye doctor (Optometrist) she suspected I may have Papilledema and referred me to an Ophthalmologist (a medical eye doctor). She also told me that I probably didn't want to lookup Papilledema because it would likely scare me.
Well, that's just swell.
The Ophthalmologist confirmed that I have Papilledema, which is a swelling of the optic nerve/disc caused by intracranial pressure. In other words, the fluid around my brain was at an increased pressure and was damaging my eyes.
Normally they would treat this with Diamox, but I'm in the Tolvaptan clinical trial to treat my PKD and, therefore, cannot take diuretics. With that limitation my Ophthalmologist didn't feel he could effectively treat my issues and referred me to a Neural-Ophthalmologist and wanted to prepare me for what would likely lead to surgery as my solution.
Well, that's just awesome.
If you haven't been keeping count the Neural-Ophthalmologist would be the fourth doctor I've involved for the problem, stretching over a few months. Meanwhile, the problem has escalated from "something I need to remember to ask the doctor about" to something that is seriously disruptive & has become quite painful. {Imagine trying to focus on a person when you essentially have fireworks going off in your eyes.}
I was told that the nerves in the back of our eyes don't have pain receptors, so the "lightning" that I'm seeing is actually the equivalent of "pain." But I also had general eye pain, and throw in some dizziness and feeling "loopy" for good measure.
Of course the Neural-Ophthalmologist wants to do his due diligence and rule out those nasty possible causes, such as a brain tumor.
Well, this is like a trip to Disney World. What a hoot!
So, I got an MRI, which finds:
1. Empty sella and optic nerve sheath dilatation which can be associated with idiopathic intracranial hypertension.
2. Diffuse cortical atrophy prominent for patient's age.
So, #1 shows I have eye nerve damage from the intracrnial pressure, which is exactly what the doctor suspected. However, #2 shows my brain is apparently rotting (or shrinking) too fast for my age. The doctor never mentioned anything about that, I guess I'm going to have ask.
Glad I got a copy of the MRI report. Always, ALWAYS, get copies of your medical records. And take them along when you see a new doctor.
The next test the Neural-Ophthalmologist wanted was a Lumbar Puncture (LP) (spinal tap), which I had done today.
I've heard horror stories about how painful a LP procedure is. I'm happy to report they were all lies. Getting the IV put in before the procedure was worse than the actual LP, although I'm a little sore and have a slight headache. Both are quite tolerable and I haven't taken any pain medicine.
The cerebrospinal fluid surrounds and protects the brain and on down the back to surrounding the spinal nerve, which is the fluid that a LP extracts. The doctor performing the LP said normal intracranial pressure is 11 mmHG. Mine was at 25 mmHg. So, he took took off some cerebrospinal fluid for testing and to reduce the pressure.
It will be a week or so before I get the test results back on the fluid, but my eyes are already feeling better and have far less "lightning." The dizziness and feeling "loopy" is gone.
Unfortunately I have no idea what the treatment will be to prevent increased pressure from occurring again. Also, I believe that surgery on my optic nerve is still a very real possibility.
From everything that I read chronic kidney disease can lean to intracranial hypertension, although I have no idea how those two things are connected.
The lesson I hope others can learn from this is that if you see "lightning" in your vision, get to a doctor. I've been told I have some permanent damage to my vision, although minor. Maybe others can avoid the pain and damage I haven't been able to.
It's been a while since I've been on here. Life, or rather my health, has been all sorts of interesting.
My eyes had been bothering me. I was seeing "lightning" and some distortion in my peripheral vision, but it wasn't horrible. My thinking was that I would ask the doctor about it next time I saw him, which I did. He simply said I needed to see an eye doctor.
"That's fine," I thought. I need to get my contacts/eye glass prescription updated anyway. So, I waited a couple months until it was convenient.
When I finally saw my eye doctor (Optometrist) she suspected I may have Papilledema and referred me to an Ophthalmologist (a medical eye doctor). She also told me that I probably didn't want to lookup Papilledema because it would likely scare me.
Well, that's just swell.
The Ophthalmologist confirmed that I have Papilledema, which is a swelling of the optic nerve/disc caused by intracranial pressure. In other words, the fluid around my brain was at an increased pressure and was damaging my eyes.
Normally they would treat this with Diamox, but I'm in the Tolvaptan clinical trial to treat my PKD and, therefore, cannot take diuretics. With that limitation my Ophthalmologist didn't feel he could effectively treat my issues and referred me to a Neural-Ophthalmologist and wanted to prepare me for what would likely lead to surgery as my solution.
Well, that's just awesome.
If you haven't been keeping count the Neural-Ophthalmologist would be the fourth doctor I've involved for the problem, stretching over a few months. Meanwhile, the problem has escalated from "something I need to remember to ask the doctor about" to something that is seriously disruptive & has become quite painful. {Imagine trying to focus on a person when you essentially have fireworks going off in your eyes.}
I was told that the nerves in the back of our eyes don't have pain receptors, so the "lightning" that I'm seeing is actually the equivalent of "pain." But I also had general eye pain, and throw in some dizziness and feeling "loopy" for good measure.
Of course the Neural-Ophthalmologist wants to do his due diligence and rule out those nasty possible causes, such as a brain tumor.
Well, this is like a trip to Disney World. What a hoot!
So, I got an MRI, which finds:
1. Empty sella and optic nerve sheath dilatation which can be associated with idiopathic intracranial hypertension.
2. Diffuse cortical atrophy prominent for patient's age.
So, #1 shows I have eye nerve damage from the intracrnial pressure, which is exactly what the doctor suspected. However, #2 shows my brain is apparently rotting (or shrinking) too fast for my age. The doctor never mentioned anything about that, I guess I'm going to have ask.
Glad I got a copy of the MRI report. Always, ALWAYS, get copies of your medical records. And take them along when you see a new doctor.
The next test the Neural-Ophthalmologist wanted was a Lumbar Puncture (LP) (spinal tap), which I had done today.
I've heard horror stories about how painful a LP procedure is. I'm happy to report they were all lies. Getting the IV put in before the procedure was worse than the actual LP, although I'm a little sore and have a slight headache. Both are quite tolerable and I haven't taken any pain medicine.
The cerebrospinal fluid surrounds and protects the brain and on down the back to surrounding the spinal nerve, which is the fluid that a LP extracts. The doctor performing the LP said normal intracranial pressure is 11 mmHG. Mine was at 25 mmHg. So, he took took off some cerebrospinal fluid for testing and to reduce the pressure.
It will be a week or so before I get the test results back on the fluid, but my eyes are already feeling better and have far less "lightning." The dizziness and feeling "loopy" is gone.
Unfortunately I have no idea what the treatment will be to prevent increased pressure from occurring again. Also, I believe that surgery on my optic nerve is still a very real possibility.
From everything that I read chronic kidney disease can lean to intracranial hypertension, although I have no idea how those two things are connected.
The lesson I hope others can learn from this is that if you see "lightning" in your vision, get to a doctor. I've been told I have some permanent damage to my vision, although minor. Maybe others can avoid the pain and damage I haven't been able to.
I'm so sorry to hear about the problems you're having. Hopefully the outcome will be the best possible for you. Like you, I'm inclined to save things up until I next see the appropriate doctor. Perhaps this isn't a good policy. I've been having some eye symptoms ( different from those you describe) so should perhaps not put off having a check until my next review, which isn't due until June.
Best wishes,
Chewitt
Sorry to hear what you are dealing with presently. I looked up causes of Papilledema on this link http://www.clinicaltrials.gov/ct2/show/NCT00769834 and it is related to chronic kidney disease and hypertension and even connective tissue issues which polycystic kidney disease is. I'm glad you described your symptoms. I have had "lightening" episodes in my eyes but since I've only been to an eye doc once in my life for driving glasses never mentioned it before. Another symptom is headache and vomiting. I have had nausea/vomiting over past 10-11 years which I have always been sent to a GI doc. I go to GI doc in Feb.to rule out huge cysts pinching off bile ducts. I am going to ask my GP if I should be seen by an eye doc to rule out papilledema. You said they usually treat it with diuretics. Isn't Tolvaptan a diuretic? Wouldn't that be helping the pressure of the cerebral spinal fluid too? My brother has PKD and had problems with the cerebral spinal fluid pressure. He doesn't like to discuss it with me but I am going to give him a call and see what treatment they gave him for that.
Best Wishes,
Jessica
Best wishes'
Jessica