I had the PED surgery in Feb. 2012. The doctor doubled my Plavix starting the day after surgery b/c my levels weren't quite where they wanted them to be. So I was on 150mg of Plavix and 325 mg of aspirin each day. I went in for a follow up blood platelet level count a week and a half later and my platelet levels were at 100 % and they should have been at around 40%. They cut my Plavix back to 75mg a day and I go back for another follow up in a week. I noticed after the surgery I started having little black "floaters" in both my eyes and some blurry vision. The surgeon's office told me to go see an opthamologist (sp?) which I did this weekend. They are referring me to a retinal specialist. Eye doctor seemed to think my vision issues are being caused by the PED device. Not sure what to think at this point..if it was the surgery or the meds that have caused my vision issues. Has anyone else experienced this??
Hi Rachel...I hope and pray that the retinal specialist is able to help you out...and/or direct you to the proper specialist...
Keep us posted...
~ I was coiled, so I can't help you out with the vision problem ~
Cyber~thoughts your way...~ Colleen
How is your vision now Rachel?
Thanks Colleen! : )
Hi Stephanie! Unfortunately my vision is still the same. I had to get my platelet levels re-checked this morning to see if I'm taking too much Plavix. Last week my levels were at 100% and after decreasing my meds, today there were still at 99%! The doctor told me to start taking it every other day and I'll go back in a week to get my levels checked again. I feel like a human pin cushion! I really believe the meds are causing my vision issues, so I want to see what happens when they get my levels adjusted properly.
How are you feeling about everything? Do you have any questions about the PED, etc? Please feel free to ask! Hope you are feeling well : )
Other than the vision, has everything else gone well? Headaches better? Are you back to work? I can only get a week and I am worried about that. I am sure I will think a plenty more questions.
Yes my headaches have gotten better. I still get them, but they are not as bad or as frequent. I got back to work a week after returning home so you should be right on schedule. It wasn't that I felt super terrible, I was just very weak and tired. That is the hardest part. You'll need to rest a lot for a few weeks, especially if you're working after week one. I just let some things go, like laundry, chores, etc. and just rested when I was at home. I also started exercising with my trainer again 2x a week and I started that back 2 weeks after surgery. If you want to text or call me anytime, my # is 405.830.9124
Thanks Rachel. I am feeling much better today. I hope they can get things figured out for you. I can imagine how frustrating it could be.
I appreciate the offer to text or talk. You will probably be hearing from me in the near future. I am very reassured after reading your posts. Please keep me posted:)
So glad you're feeling better today! I'm sure everything will continue to improve for me-I am keeping a positive attitude (most of the time!) ; ) Contact me anytime and please keep me posted as well!
Rachel,
I was on plavix once...initial was 300mg concomittant w/other anesthesia during an angio... then 75 mg /day for 8 weeks; which was stopped early and put on a full aspirin daily. but that was all due to reaction to plavix; and then bruising, etc. I was reduced to 81mg aspirin; and have been off it for years; and my platelet count remains in the lower range in blood tests.
Please bear with my confusion as to why they would reduce plavix if your platelet count had not dropped. I may be misinterpreting what I read (not intentionally; I am just slow at times to understand).
First for me, I had the three floater dots in one eye after coiling/stenting, long before plavix. When I was on plavix, my eyes went wild w/streaks/flashes, which I call platinum color, even when I first closed my eyes.
Watch for, and if the floaters are more wild at what time/ when, and if bright lights/darkness affect it or any other vision issues to be able to tell the retinal specialist.
Best wishes and prayers for recovery.
Pat
I have black floaters too. I also have something called "visual snow" which I started seeing three months after my PED surgery... Like there's a clear fuzzy filter over my vision, sort of like I'm seeing static on a tv. I saw a neuro-opthamologist last month and he said my eyes are perfectly healthy. Visual snow is an unknown phenomenon and they don't know what causes it. Very little research has been done regarding it. It may be a complete coincidence and completely unrelated to the PED.
If it makes you feel any better, my husband started seeing black floaters a few years ago in his late 20s and the eye doctor said it was normal and sometimes it happens with age, if you're not seeing bright flashes of light it's nothing to worry about. Of course you should always be more cautious when you've had an aneurysm and a device placed in your head! Let us know what your retinal specialist says, I'm really curious!
Hi Jess, thanks for writing! My specialist said pretty much what you already stated. The floaters are not related to the PED and there's not a lot they can do about it. I do find it a bit hard to believe that things are not related, but they are the doctors, so what can you do?! The floaters are more of an annoyance than anything, but I think I'm getting used to them at this point. Have you had any other issues after having your PED?
Rachel, do you have floaters in one or both eyes? If one, is it the same side as your aneurysm?
All this unknown is scary...
I've mainly had a hard time with headaches. It's been 8 month since surgery and occasionally I still have days when my headache is so bad that I spend most of the day on the couch. For some reason the last couple weeks have been rough and I can't seem to get rid of this headache! Not sure why they are so much worse right now. For a couple months or so I was feeling pretty good.
I did find out recently that I'm slightly anemic. My primary care doctor wasn't sure if taking Plavix/Aspirin has caused this, but she said it is possible. She prescribed an iron supplement 3x per day. I'm supposed to go back for a blood test to see if my levels have improved.
I've also had trouble with a swollen lymph node in the right side of my neck (same side as aneurysm/stent) not sure if that's related to the PED at all, but it makes me suspicious. I know what you mean about finding it hard to believe that things are not related.
It's definitely scary Pat! I have floaters in both eyes, but my left eye is worse. My PED was placed on my right side..nothing ever adds up to make much sense!
Hey Jess- The crazy thing is, I've had major headache problems as well. Are you taking anything for your headaches? I don't know if you saw a post I made yesterday (I think? lol), about what happened. I did have some headaches on and off after surgery, but about a week and a half ago they were excruciating where I couldn't even move (So I get what you're saying about spending the day on the couch!). Finally saw my primary care dr, had an MRI, which showed some areas of damage from small strokes. They don't know what caused the strokes and speculate they may have occurred during surgery. But the onset of severe headaches wasn't until almost a month after surgery. I don't have any deficits from the strokes but it's scary to hear that! They keep messing around with my plavix levels and assure me I will be fine. In the past 4 days or so I've been able to keep my headaches at bay during the day with extra strength tylenol (about 6 to 8 a day though) and I have to take a Lortab to sleep at night. I will wake up about 4 hours after I go to bed with a terrible headache on the right side where they did my surgery. I don't know if it's the pressure building up after laying down b/c I seem to do much better during the day. So strange about your swollen lymph node-it just seems like that would be related also, especially if you never had that problem before? My worst fear was having the PED surgery and coming out with more problems/ symptoms then I went in with and it seems that's what's happened.. very frustrating to say the least
Rachel... I wrote a bit about my experience with headaches a month out from surgery in another discussion feed...here it is:
(What you're describing sounds a lot like what I went through, just about a month after having two PEDs placed in my right carotid artery for a large fusiform cavernous sinus aneurysm in August of 2011. I actually ended up in the ER just about a month after surgery because of the pain, and because I feared something was wrong with my artery/stent. They put me on major pain killers (dilaudid) and did a CT scan. It turned out that my stent/artery were both sound and looked really good, and my aneurysm had actually shrunk dramatically in just under a month. My neurosurgeon said that some of the pain could have been cause by residual inflammation and they sent me home that evening with a prescription for pain killers and a round of steroids to help with the inflammation.
I hate taking pain killers and actually never had in my life until my aneurysm situation. After returning home I ended up only taking the dilaudid twice. As soon as I started taking the steroid I noticed improvement. At my 6 week check up with my neurosurgeon I was still struggling with headaches so he referred me to a neurologist that specializes in headache management. He also told me that many people who have been treated for aneurysms end up dealing with headaches/migraines off and on for the rest of their life, it's a matter of finding what works for each patient to manage these headaches.
So off I went to the neurologist. The neurologist I've been working with is great! She's very friendly and takes the time to listen and explain. She started me on a very low dose of Topamax (an anti-epileptic drug that is also used for migraine management), and told me to start taking Melatonin every night at bedtime. At the time I was have terrible stabbing headaches and Melatonin is supposed to help with this kind of headache. She also stressed that I needed daily exercise and exposure to sunshine. After three days on Topamax and Melatonin I noticed a definite improvement! I felt better than I had in weeks. After a few weeks I started having new visual symptoms and was worried that it was caused by the Topamax so I stopped taking it and they switched me to Gabapentin. Last month I saw a neuro-opthamologist and found out that I have a "visual phenomenon" called visual snow. So the eye symptoms were not caused by Topamax. I've been on Gabapentin for about 3 and half months now, it really helps and my headaches are less frequent and less severe. It still hasn't worked as well as the Topamax did though, so I will probably start taking that again now that I know it wasn't what caused my vision symptoms. I never had severe headaches or migraines until about a year leading up to my aneurysm diagnosis. I'm still dealing with headaches, but I feel much better than I did a few months ago and my neurologist is very hopeful that over time the headaches will calm down to the point where I won't have to take daily medications. I'm really hoping for this outcome!)
So for me headaches have been a big issue. I admit that I've dealt with a lot of anxiety since the PED placement. Especially when my headaches feel more severe and are mostly on the right side. I never had medical issues before I found out that I had an aneurysm, so it's been pretty scary and life changing for me. I'd be lying if I didn't admit that I think about my PED/Aneurysm just about every day, wondering if anything will go wrong. I used to be a pretty carefree person, now it's hard to push doubts and worries out of my head. That's probably common for people who have been through any serious health issue. I hate that there's no long term research/studies to help put my mind at ease.
So glad your strokes weren't serious! That would be really scary to find out! Glad your primary care Dr. sent you for an MRI. Sounds like you're in good hands. I had bad headaches prior to my PED placement and was taking tylenol about as often as you do every day for a few months and I started getting rebound migraines with visual auras. Taking tylenol consistently effects some people that way. If you continue to need it that often I'd suggest talking to your doctor or seeing a neurologist about finding other medications to help prevent/manage your headaches. There's a lot of options out there!
Really hope they get your Plavix dosage figured out soon! That would be really frustrating. I haven't had any trouble with my levels. I've been on 75mg daily with 325mg of Aspirin every day since the two weeks leading up to the surgery (a total of 8.5 months). Being on Plavix and Aspirin has really torn up my stomach though, so I have to be really careful about what I eat. I guess I don't tolerate Aspirin very well. Sensitive stomach, acid reflux. I really wonder how much these medications are affecting me overall... I'm hoping when I go off of them (hopefully in August) it will make a big difference and I'll feel more like myself again.
So glad I found this site! It's so nice to be able to connect with others who have been treated with the PED. My husband and family are always there for me, but it's just not the same as talking to someone who has actually been through it. My husband's favorite line is "everything will be okay" which part of me totally believes, then the other half of me is thinking "easy for you to say, you're not the one walking around with platinum stents in your head and a defective artery!". :)
Rachel...I get confused on the diff hemispheres alone;;;and, in some vision things, they are bilateral and/or contralateral...my memory never hols well...have to walk them thru with pictures...words,...
Can only suggest you pull up the anatomy of your eyes...and, ask your neuro and/or PCP...
Jess, I started out in Jan 2012 with the auerysm coiling and within 2 weeks I started getting silent migraines (migraines without headache). I get headaches to but the aura, which for me is jagged light, seem to come on their own. I found out what the jagged light was from the neurology surgeon when I had my 1 month follow-up. But what is even crazier is that I had a TIA 2 months post anuerysm surgery, caused by a tear in the right vertebral that they think was cause from the guide wires used for the coiling. In all the research that I have done, articles on vertebrel artery dissections have a strong link to the silent migraines. I started tracking the auras and they are pretty consitent and annoying. You are so right that it is hard for our loved ones to understand the magnitude of what we are going through. I to appreciate being able to find comfort in this forum. Kathy
Kathy and all...
It is unbelievable to have so much of the flashes/streaks being noted...it is like another hidden section of the minimally invasive procedures...they were far worse after my third major f/up w/record of off-label stenting...
You are blessed to have neuros who would step forward and explain the R VA; tho I am not at all surprised that you were not advised of its condition on d/c and potential issues... they do final angios for status...Just the fact that they told you after your TIA is exceptional in itself. My personal opinion...based on many others of us.
It is hard for each of us...w/o doubt the trauma and stress of loved ones.. especially those still working and running after the kids.
Thanks for what you shared... prayers for continued recovery...