I had my right ICA aneurysm treated vía a Pipeline Stent and a couple of coils on the 2nd of June. The most painful thing I came home with was not brain related but more to do with a haematoma of the groin. The compression to stop the bleed left me severely bruised, swollen and with sciatica. I’m now more mobile and getting around the house easier. In the meantime my migraines disappeared (hooray! ) and only had minor headaches due to over stimulation. So I’m thinking I have come off lightly and the recovery is incredible!
Well I think I spoke too soon; as for the last couple of days I’m constantly exhausted and can’t concentrate on much (writing this is giving me a headache), my brain feels like it’s Cotton candy and my skull is made of led. My right eye feels like it’s swollen and if I don’t rest my vision feels ‘trippy’.
I will let you know. I’m having the procedure on July 24. I too, I am dreading the catheter/groin thing. I had discomfort for quite a while just after the arteriogram test that I had to see what was going on.
As women, I think we tend to over extend ourselves in every way. Our recoveries included!
My PEDs were placed 4 years ago. I didn’t feel back to my normal self, strength, headaches, etc., until around 6 months. The way the surgeon explained it to me and the hubby is that as the PEDs rebuild around the artery, there is swelling. It’s also your brain’s way of saying, hey, there is this foreign piece of something here, and I’m going to make sure you know it. As the PED embeds itself into the artery, the swelling begins to subside and the headaches lessen. That’s why a lot of PED recipients have full occlusion at 6 month to 1 year after insertion.
Hopefully, you’re feeling better every day, and that the groin swelling has gone down completely. I had compression after my 1st angio, but closure devices after the 2nd and 3rd. I’ll take the devices any day!
Best wishes,
Linda
Patty, thank you for your reply. How are you feeling about your procedure? I was so focused on getting through the procedure that I completely forgot about the catheter/groin! It's been a month since my procedure and my groin area is still tender and bruised. I have a few friends in the UK who had no swelling or major issues post op.
All the best with your surgery xx
Patty said:
I will let you know. I'm having the procedure on July 24. I too, I am dreading the catheter/groin thing. I had discomfort for quite a while just after the arteriogram test that I had to see what was going on.
I'm very NERVOUS about the procedure since only one surgeon has recommended it vs. craniotomy. One other surgeon recommended coiling to sacrifice the parent artery, but that sounded more risky than this procedure. The clipping procedure had a higher risk of damaging the nearby nerves while trying to get to the aneurysm. But I am trying to stay positive. There was no easy answer or solution to my case in particular--as 2 surgeons put it "you're not in an enviable position" as far as picking a treatment choice. All have risks and potential consequences, but I was ready to make a decision. I'm taking a leap of faith and hoping this was the right choice. It's actually on the 21st, not the 24--so hopefully, 3 weeks from now I will be back home from NYC to my home in PA and on my way to recovery! I'll let you know how it goes.
Patty,
I had to go back and take a look at your profile because I was unsure of where your aneurysm is located. I see that you have it listed as the PICA, an area with which I am unfamiliar. I also noted that you did see Dr. Rosennwasser at Jeff. Rossenwasser and the other neuro docs at Jeff happen to be some of the top neurosurgeons in this area. My PED surgery was done by Dr. Pascal Jabbour at Jeff. Dr. Jabbour proctorred the PED and has done hundreds of these PED surgeries himself.
The surgeon that you chose at NYU, I’m assuming has done the PED procedure in that PICA area? The reason I ask, is that the PED was intended for, and is most usually used in, the internal carotid artery; however it has been used in the middle cerebral artery and in the basilar tip as well. I can honestly say I don’t believe we have any members who have had it in the PICA. If I’m incorrect, I hope someone will speak up to that fact.
As far as the PED procedure goes, it is a breeze as compared to a craniotomy. I was overnight in ICU, home and in my own bed by noon the next day, and back to work within two weeks.
Please do keep us posted on how everything goes with your surgery. I do love seeing that the PED is able to be used in the different arteries of the brain. It certainly is much easier the procedure as compared to say a craniotomy.
Hi there I’m nearly 4 weeks post PED and have terrible stabbing eye pain due to swelling of the aneurysm now it’s starting to clot. It’s pressing on nerves behind my eye.
I was feeling fine last week and even did a few small jobs (I’m a self employed electrician)
But this week I am struggling to get out of bed due to the pain in my eye. I’m also experiencing double vision in my right eye ( really weird ). The neurologist said it will be temporary but does not know for how long.
Rich,
So sorry to hear of your eye pain. Hopefully, as the doc said, it’s just temporary and will subside quickly.
I’m not sure what you mean by swelling of the aneurysm? Did you mean swelling of the artery and that is pressing against the nerve? Was this seen by an MRA? Or was this an educated guess? Also, was this the doc who placed the PED? I know we place a lot of faith in our docs, but we also need to be our own best advocate when something isn’t right.
Are you still taking the plavix and aspirin regimen? I do know that those drug combinations are crucial to the PED being able to implant properly in the artery and the drugs work to keep
clotting to a minimum. Please do keep us posted as to how you’re making out with your eye pain. Hopefully it will subside soon and you’ll be pain free.
Hi Linda thanks for your response. I was told by both my surgeon prior to the operation and by the neurologist in the emergency room that once the aneurysm begins to clot, it can change shape and swell before starting to occlude. This is what appears to have happened in my case as confirmed by a CTA scan on Friday night/ Saturday morning. After a search for eye pain on this forum, it seems lots of people suffer the same sort of pain temporarily and this has given me great comfort. I can tolerate the pain, knowing it will subside eventually.
I’m still taking Plavix and aspirin (and have the bruises and nosebleeds to prove it !) along with paracetamol and gabapentine for the pain.
It’s great to be able to get advice and support from others on this forum.
Thanks for your support,
Richard
Jho - have you called your Neurosurgeon? In the meantime make sure you keep hydrated and eat protein. It may be your body saying you have done too much. I ruptured and had stabbing eye pain for awhile, maybe a year. I still get it when I overdo things. Doesn’t hurt to slow down and call the Doc
Good luck!
Sorry to hear about your experiences... I know first-hand how much it sucks. I am comforted by your words and saw my consultant today who confirmed its a normal part of recovery. He did say of its an ongoing issue, as in its constant and the pain doesn't lessen with painkillers and rest that I should get in touch. My mri isn't until September.
I hope the swelling subsidies soon... I guess the pain is a reminder that something is working x
Rich7469 said:
Hi there I'm nearly 4 weeks post PED and have terrible stabbing eye pain due to swelling of the aneurysm now it's starting to clot. It's pressing on nerves behind my eye. I was feeling fine last week and even did a few small jobs (I'm a self employed electrician) But this week I am struggling to get out of bed due to the pain in my eye. I'm also experiencing double vision in my right eye ( really weird ). The neurologist said it will be temporary but does not know for how long.
You know I think you are right about the hydration. The weather here has been really hot and I'm not drinking nearly as much as I did when I first got home from hospital. I have seen my consultant today. Pain is due to swelling... but they will keep an eye on it (no pun intended). Thanks for the reminder x
Moltroub said:
Jho - have you called your Neurosurgeon? In the meantime make sure you keep hydrated and eat protein. It may be your body saying you have done too much. I ruptured and had stabbing eye pain for awhile, maybe a year. I still get it when I overdo things. Doesn't hurt to slow down and call the Doc Good luck!
I'm finally able to respond! You'll probably see from my other responses today that I've seen my consultant. He also said that the levels/cocktails of blood thinners I had during the procedure and the hematoma means that the groin may take up to 4 months to heal :(
They will take me off Prasugrel (I haven't come across anyone else on this anticoagulant) for the angiogram so it shouldn't be a problem. I will however suggest a different method of closure.
Hope you are well x
Linda Z. said:
As women, I think we tend to over extend ourselves in every way. Our recoveries included!
My PEDs were placed 4 years ago. I didn't feel back to my normal self, strength, headaches, etc., until around 6 months. The way the surgeon explained it to me and the hubby is that as the PEDs rebuild around the artery, there is swelling. It's also your brain's way of saying, hey, there is this foreign piece of something here, and I'm going to make sure you know it. As the PED embeds itself into the artery, the swelling begins to subside and the headaches lessen. That's why a lot of PED recipients have full occlusion at 6 month to 1 year after insertion. Hopefully, you're feeling better every day, and that the groin swelling has gone down completely. I had compression after my 1st angio, but closure devices after the 2nd and 3rd. I'll take the devices any day! Best wishes, Linda
Jho - I’ve had problems with my groin since my last coiling which was a year ago. The Neuro Intern didn’t put enough pressure, my little Doc picked him up and moved him, then did a handstand on it. That was followed by sand bags for the next 12 hours. Even now if I overdo by lifting too much, walking too much or gardening too much, it swells. My doc said put ice on it to help with the pain. Take it easy and don’t do what I too often do…in other words listen and follow your Doctor’s advice:)
Linda, yes so far I have not found anyone on here with an annie arising from the PICA. It was misdiagnosed for 7 months by 2 local radiologists, neurologists, and surgeons as a benign tumor to be followed w/ MRI in a year. Aneurysms are not usually found in this area, hence the misdiagnosis. However, on my trips to Philly and NYC, the surgeons were very much familiar w/ PICA annies--probably because they see more cases overall. That was reassuring. Dr. Howard Riina up at NYU Langone Medical Center has used the PED in that area before. That was one of my first questions for him along w/ several others concerning my case in particular. I am going to give it a try, even though a few other dr.s recommended clipping as the choice of treatment. I feel that if for whatever reason the PED cannot be placed, he will not do it. Then I would have to go w/ plan B. He feels that to get to the annie in that area where some very critical cranial nerves are housed (just outside of my brainstem) would be risky. A few surgeons, along w/ him expressed this concern and that I would have difficulty swallowing or have the inability to swallow following surgery. That was very concerning to me! It has been a living nightmare for me for the past few months as I've had to try to decide between 3 evils as far as I'm concerned. Dr. Riina has given me the most hope so far, and since he performs both craniotomies and endovascular procedures, I have to trust that he is doing what he believes is best for my case. I leave my home in PA to head up to NYC along w/ my family on the 20th. I could use everyones support and well wishes. I'll let you know how it goes!
Linda Z. said:
Patty, I had to go back and take a look at your profile because I was unsure of where your aneurysm is located. I see that you have it listed as the PICA, an area with which I am unfamiliar. I also noted that you did see Dr. Rosennwasser at Jeff. Rossenwasser and the other neuro docs at Jeff happen to be some of the top neurosurgeons in this area. My PED surgery was done by Dr. Pascal Jabbour at Jeff. Dr. Jabbour proctorred the PED and has done hundreds of these PED surgeries himself.
The surgeon that you chose at NYU, I'm assuming has done the PED procedure in that PICA area? The reason I ask, is that the PED was intended for, and is most usually used in, the internal carotid artery; however it has been used in the middle cerebral artery and in the basilar tip as well. I can honestly say I don't believe we have any members who have had it in the PICA. If I'm incorrect, I hope someone will speak up to that fact.
As far as the PED procedure goes, it is a breeze as compared to a craniotomy. I was overnight in ICU, home and in my own bed by noon the next day, and back to work within two weeks.
Please do keep us posted on how everything goes with your surgery. I do love seeing that the PED is able to be used in the different arteries of the brain. It certainly is much easier the procedure as compared to say a craniotomy.
Linda, I really get how difficult your decision was to make. You were put between a rock and a hard place! I think the surgeon you've gone with sounds solid and you are right... as he does both procedures he can best advise you on the best treatment. My aneurysm wasn't located anywhere near as complicated or rare as yours but the morphology of mine and that it grew out of a malformed carotid artery made it an incredibly risky procedure. It was also the only option I had for treatment. So I understand how nervous you must be.
The best reassurance I had from my surgeon was that if at any point the procedure was putting me at risk he would stop it all together. So I was prepared to wake up with my life but not the stent. Put trust in your surgeon and take deep and calm breaths.
Thanks Jho, I think you meant me, Patty. I had replied to Linda’s question about my case and the use of the pipeline for the PICA.
Jho SerNa said:
Linda, I really get how difficult your decision was to make. You were put between a rock and a hard place! I think the surgeon you’ve gone with sounds solid and you are right… as he does both procedures he can best advise you on the best treatment. My aneurysm wasn’t located anywhere near as complicated or rare as yours but the morphology of mine and that it grew out of a malformed carotid artery made it an incredibly risky procedure. It was also the only option I had for treatment. So I understand how nervous you must be.
The best reassurance I had from my surgeon was that if at any point the procedure was putting me at risk he would stop it all together. So I was prepared to wake up with my life but not the stent. Put trust in your surgeon and take deep and calm breaths.
Party I'm so Sorry!! I'm so embarrassed.... and very forgetful.
Hugs Patty said:
Thanks Jho, I think you meant me, Patty. I had replied to Linda's question about my case and the use of the pipeline for the PICA.
Jho SerNa said:
Linda, I really get how difficult your decision was to make. You were put between a rock and a hard place! I think the surgeon you've gone with sounds solid and you are right... as he does both procedures he can best advise you on the best treatment. My aneurysm wasn't located anywhere near as complicated or rare as yours but the morphology of mine and that it grew out of a malformed carotid artery made it an incredibly risky procedure. It was also the only option I had for treatment. So I understand how nervous you must be.
The best reassurance I had from my surgeon was that if at any point the procedure was putting me at risk he would stop it all together. So I was prepared to wake up with my life but not the stent. Put trust in your surgeon and take deep and calm breaths.
That’s OK! I knew what you meant. I appreciate your support – – it means a lot. I hope your recovery is going well and that your groin will finally heal in the not-too-distant future.