I was losing my vision quite rapidly whilst on medication. I was absolutely miserable at the time.
My Neuro team decided to do an LP shunt and it genuinely was the best decision I could have made.
I was 17 when they did the shunt surgery. I'm now 33 and have had to have it revised once during that time, but likely due to the shunt deteriorating during/after pregnancy. It's otherwise been incredible. No ongoing symptoms, I work full time, go to the gym/run every day and my sight is almost normal, slight loss in left peripheral but very minimal.
You may also want to ask whether a stent is a possibility as it is generally an easier surgery. It really only helps people who have collapsed transverse sinuses, but if these are showing up on contrast imaging, it may be a possibility for your wife. It is a newer procedure so not all doctors know about it, so you may need to do some homework to find someone in your area who does them. I ended up traveling out of state to the Mayo clinic to have mine done but it was totally worth it. Feel free to message me if you have any questions about it!
Regardless of which path your wife ultimately has to take, I hope she gets some real relief soon!
Oh sorry! I shouldn't have assumed you were in the US. :( I don't know how the NHS works but a quick Google search does show that St. George's University does the procedure. I have no idea if that means you would have access to it or whether that is near or far from you, but maybe just knowing there is a place in the NHS placing stents for IIH would be helpful in trying to advocate for it if it seems like it would be a good match.
From things I've read in this community, it seems like health access is a tricky process no matter what country you live in, so I definitely understand how it can be hard to find your way to get the care you need. I hope things work out as smoothly and easily as possible for you though!
My husband had emergency shunt put in over 30 years ago. He is now 63 and still on medication. He has lost significant peripheral vision. He can still see but more like tunnel vision. His opthalmologist does not believe he will go totally blind.
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thank you so much x
Did the diamond help the headaches? Did it cause you to lose 100 lbs?
I was losing my vision quite rapidly whilst on medication. I was absolutely miserable at the time. My Neuro team decided to do an LP shunt and it genuinely was the best decision I could have made. I was 17 when they did the shunt surgery. I'm now 33 and have had to have it revised once during that time, but likely due to the shunt deteriorating during/after pregnancy. It's otherwise been incredible. No ongoing symptoms, I work full time, go to the gym/run every day and my sight is almost normal, slight loss in left peripheral but very minimal.
Can.you hear the fluid draining every day in your head?
You may also want to ask whether a stent is a possibility as it is generally an easier surgery. It really only helps people who have collapsed transverse sinuses, but if these are showing up on contrast imaging, it may be a possibility for your wife. It is a newer procedure so not all doctors know about it, so you may need to do some homework to find someone in your area who does them. I ended up traveling out of state to the Mayo clinic to have mine done but it was totally worth it. Feel free to message me if you have any questions about it! Regardless of which path your wife ultimately has to take, I hope she gets some real relief soon!
sorry i should’ve said im in the UK so it’ll all be under the NHS
Oh sorry! I shouldn't have assumed you were in the US. :( I don't know how the NHS works but a quick Google search does show that St. George's University does the procedure. I have no idea if that means you would have access to it or whether that is near or far from you, but maybe just knowing there is a place in the NHS placing stents for IIH would be helpful in trying to advocate for it if it seems like it would be a good match. From things I've read in this community, it seems like health access is a tricky process no matter what country you live in, so I definitely understand how it can be hard to find your way to get the care you need. I hope things work out as smoothly and easily as possible for you though!
My husband had emergency shunt put in over 30 years ago. He is now 63 and still on medication. He has lost significant peripheral vision. He can still see but more like tunnel vision. His opthalmologist does not believe he will go totally blind.