Diagnosis, Failed Pipeline Stent, now awaiting Permanent Balloon Occulsion on Dec. 20th

General personal-stories
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Hello to All!

My right eylid drooped a few months ago and then I had some pain behind my right eye. November 3rd I had an MRI and it showed an aneurysm size of 2.5 cm, right cavernous carotid.

My friend who is also my cardiologist got me an appointment the next morning with the neurosurgeon who admitted me immediately.

After an angiogram was done, it was determined that it was not in my brain, just outside behind my eye.

I also had another diagnostic procedure called a temporary balloon occlusion. I passed that with flying colors.

Dr. decided to try the pipeline stent. When feeding the wire in, my artery was pierced and dye and blood leaked out into my brain. YIKES! I spent the next couple of days in the ICU flat on my back with a major headache. At that point, I had been entered into 3 times in my femoral artery. Thankfully, all that goop got reabsorbed after 5 days.

Now I've been home awaiting Dec 20th, My date with my destiny to try a permanent balloon occlusion. 48 hour stroke watch in the ICU after that. I am terrified!

I am starting the Plavix again on Dec. 9th. I take 13.5 mg of low presser twice a day. No lifting at all. I have plenty of sick days, but I go into work to visit. My job is very physically demanding, so I can't do it now. I do not have the energy levels that I'm used to; I hope that will change in future.

I am so glad to have found this group! xoxo to you all from Shelley

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Hi Shelley,

Welcome to BAF. I didn't stumble across this site until just recently and I'm so glad I did. I had two pipeline stents placed in my right interior carotid artery this past July. I am one of the few people that do not respond to Plavix and my stents began to clot. I ended up in ICU again in September, they kept me in the hospital for 13 days trying to clear my stents with IV blood thinners because my surgeon didn't want to go back in so soon after the initial surgery. He switched me from Plavix to Effient. I went home for two days and the left side of my face drooped and I was right back in for the balloon angioplasty. I was terrified as well, but the angioplasty was successful, I had my follow up angio last week, stents are clear and annie is gone!

I actually thought my surgeon was going to find a problem because I have been VERY fatigued, much more so than after the initial surgery. I asked him when I was on the table if I could sign a consent for him to treat any problems while he was in there because I was so sure something was wrong (and that femoral artery has been through the wringer!) I signed the consent but he said it looks very good, there is a slight narrowing of the artery near the stents but nothing to treat or worry about.

Apparently, the fatigue is just a part of the healing process, I am looking forward to returning to work, but I'm concerned about the fatigue and fuzzy feeling I get in my head when I overdo it. My job is not really physically demanding but mentally stressful, long, very busy days, and I'm getting very anxious about being able to keep up. I expect to go back very soon so I guess time will tell.

Good luck with your surgery. You will be in my thoughts and prayers. Keep us posted.

Trish

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HI Shelly...You have my prayers for your upcoming surgery...

My one annie is coiled ... the other, like you, is small 2mm behind left eye...and considered not in brain either...they are watching this one, should it grow...

I can only imagine how terrified you are for the upcoming surgery...be sure to get Doctor to give you something for the really tough moments before you go into surgery...it could help you to get the rest...

Cyber~healing thoughts your way....Colleen

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I'm glad I found this particular discussion. I am so sorry you went through what you went through. Hope all is well now.

I had an unruptured 8.5 mm right internal carotid artery aneurysm fixed with pipeline. After a few days, I had a stroke as clots developed around the stent, broke away and got stuck in an artery, hence the stroke (mild). One of my arteries (not sure which) was at one point totally blocked but as it is located within the circle of willis, was being compensated by the other side/artery. My most recent CTA shows 20% recanalisation which my doctor explained meant it "unblocked" a bit. Your post made me think that anything could go wrong during a seemingly simple procedure such as this. I cannot imagine my femoral artery being accessed 3x in such a short space of time. You must have such a complex network of veins it took them this much and it gave them such difficulties.

I hope everything went well with your "date with destiny" and you are now very much on the mend. Prayers coming out to you.

Cris

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HI Shelley...

Can u give us and update on how you are doing?

Cyber~thoughts Colleen

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Hi to all you wonderful folks!

Sorry I haven't been in touch, but here goes:

I had the permanent occlusion done on Dec. 20, 2011 with onyx glue AND they coiled the aneurysm. Then the 48 hour stroke watch in the ICU. They tested my blood every hour because of the heparin they used in the procedure. Talk about sleep deprivation experiments! I did ask for the tylenol with codeine because it helped me sleep more than for the discomfort of the headache. By now I had become an expert at lying almost flat on my back for 24 hours until they removed the sheath in my femoral artery.

I was very lucky that in the previous month with the failed stent and the awful headaches from the blood and dye leaking that my friend who is a mindfulness meditation teacher showed me some techniques and guided imagery to help with the pain. As you all know, they can't really drug us a lot because we have to be able to say who we are, what date it is, what planet we're on,follow a very bright light, squeeze their hands, lift our arms up to carry the pizza box, etc. every couple of hours.

I went home just three days later. The Dr. told me I would have headaches for about a week. Well, that was so not true! I had a very bad time with the headaches for a long time. I still have them now, but nothing that advil can't help.

First, the great news is that I am fabulously fantastically doing great! I went back to work March 1st part time and now am up to 6 hours a day.

Now for some other news. I had terrible headaches and took the tylenol with codeine, but stopped after a while because the side effects were not worth it. Remember, one pill=2 prunes! I used extra strength tylenol which helped a bit. My sense of smell and taste were completely f**ked up. I ate yogurt and saltines for a month and lost 25 lbs. I was on low presser and Plavix. I looked up the side effects. YIKES! I had no energy and was totally depressed. I felt like shit. Finally my primary Dr. took me off the low presser and I felt a lot better. Then the neuro took me off the plavix and I started feeling more better.

No energy at all. I had to take a nap after taking a shower. Thank goodness I had friends and family who made me go out and take a ride and a walk in the park. I was pathetic. I couldn't sleep enough.

I started to feel better Feb 1st - 3 months after the whole shebang started. My appetite came back and that was so much fun. Then finally back to work. I bought a Vita-mix and have been drinking lots of green smoothies every day.

Oh, did I mention that the vision in my right eye was all screwed up? I saw white spots. Thank goodness my kids bought me a Kindle for Christmas so I could read. I also read large print books. I am also trying some hardback books; paperbacks are out of the question. Also, I couldn't stand any bright light. Thank God I could lower the light on the computer screen. Still haven't tried going to a movie......My vision is getting better, but it could take a long time, if ever if it is same. My drooping eyelid is almost gone. But, hey, I'm not complaining.

So, 5 and a half months later, I can finally write about this. I am a very lucky person. Thank you, Dr. Robert Rosenwasser and the nurses and staff at Jefferson Hospital for Neurosurgery in Philadelphia!!!!!!

Love and kisses and hugs to you all from Shelley

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Shelley...somehow I missed your initial input here, and am amazed at your excellent recovery abilities. Did Dr. Rosenwasser do the initial attempt at the Pipeline?

What all has he, or perhaps a prior neuro, explained about the blood and dye hitting the brain?

Did Dr. R talk to you about your vision issue; and/or refer you to a neuro-oph?

Shelly, I had horrendous vision damage, and, I did end up in months of vision therapy...and, had tremendous results; tho I was still sooooo slow in doing anything...now I am just so slow!

When will you be going in for your f/up exam?

Overall, I am delighted for you and your ability to return to work. Do you have fatigue days?

Hugs and prayers...

Pat

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Hi Shelly,

We have something very much in common. My right vertebrel artery was tore while have the coiling procedure done. I also had a 7 mm basilar tip wide neck anuerysm. Not a great place to have one. Was the tear intracranial or extacranial? I didn't find out about the tear till I had a TIA 60 days post coiling. What the tear is called is a Vertebral Artery Dissection. They do heal by themselves but you should make sure to ask about this for your own well being. Mine threw a clot which supposedly don't usually happen again. The healing process is anywhere from 3 to 18 months. Limited on what I can and can't do. I hope everything go well for you.

Kathy

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Shelley,

So very glad to hear from you and to know that you are doing fine. Your body has been through a lot, even more than most here, so it is natural for you to feel what you are feeling now - the tiredness, headaches, etc. We all had/have them to varying degrees. I was given oxycontin (opioid pain reliever similar to morphine) in the first few days after my procedure. I didn't tell the doctors I had headaches but they gave it to me so they must know I will be in pain. Off it now thank God. I find using ice packs works even better. I get icepick headaches regularly and trying to investigate what triggers it - stress? heat? etc.

All in all, I am glad to hear from you. Listen to your body for even though we'd like to think we are back to normal and can do the things we used to do (and yes, we still can) but we need to take it slowly to allow our body to heal to the best it can. Hugs and prayers to you.

Cris

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I'll try to answer some things. My aneurysm was 2.5 cm, not mm. Giant, they called it. I can't believe it didn't rupture!

When the artery was ruptured the first time around, they simply said I needed to let the blood and dye reabsorb. They never called it a tear. I was on steroids at that time. And in the ICU. Then they sent me home. I was told to not lift anything heavier than a newspaper.

I then went back in for the second time. The onyx was what glued my artery shut. I don't know if they put onyx in with the coils in the aneurysm.

Yes, Cris, the icepacks were a godsend!

When I had my follow-up, Dr. Rosenwasser was not available; I saw an associate. I knew that would happen. He is a very busy man. He had an emergency. I was told that they had fixed me, were done with me, I was doing fine and was now in the general statistical population for future strokes. I have to have a follow up MRA in June. My son insisted on seeing the images of what they had done, and I'm not sure I like looking at all that!!!!

The doctors told me to follow up with the retinologist. It wasn't suggested to go to an eye neuro.

I do feel better and better every day. The ice pick headaches are gone. I am going to try a Qigong class in May. I haven't been to yoga since November. I can only work in the garden for about an hour; I get so tired!

Kathy, I don't know where the hole was. It wasn't in my brain because my aneurysm was outside of my brain. But the blood and dye leaked everywhere. I was lucky that the hole was made before they started to put the stent in - that's what they said...

Pat, Yes it was Dr. Rosenwasser who tried the stent. And, yes, I DO have tired days. I am very fortunate to have great benefits at my job. I always had a paycheck and I have enough sick days and vacation days to cover the 6 hour days. Also, my boss and co-workers are very supportive.

I was interested to hear about the medical alert stuff and the USB. I think I will persue that avenue, so I don't have to worry about travelling. I have many opportunities to travel for work and family and I don't want to give that up.

Are any of you taking any supplements that help the brain and/or vision? I take a bunch, and also have been making and drinking my green smoothies.

Thanks for all of your caring and sharing! I hope we all get healed and can sometimes stop worrying about the future.

xoxoxo from Shelley

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Hi Shelley,
Wondering if you’ve posted anything else recently and how your doing now? I’m helping my mom decide on treatment and we were scared of the perm occlusion but you’ve really helped us in this decision! Her story begins exactly like yours with face/eye symptoms and 26 mm ICA nearly in same spot outside like yours. It’s still growing over the past month and it’ll be next month before Mayo or OU Health can get her in for repair. Also worrisome that surgeons disagree on intervention but I think your post has made us feel better about getting in weeks earlier with the surgeon recommending ICA sacrafice. Of course, our fear and emotions are just out of control after she lost her mom and sister to brain ruptures during her life. Thanks for sharing!

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Hey JD! Glad you found this topic. I hope @Shelley_D responds. Another way to try to reach her is through a PM. Just click on her avatar and you’ll see a blue bubble with the word “message”. Click on that and you can send the PM. Fingers crossed she hasn’t changed her email address. Otherwise I’ll have to close the topic, I usually give it a day but I think for this I’ll wait until the weekend.

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Thanks again. I’m learning how this site works so I think I sent her a message privately just now.

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Good for you! If you have any questions about the site, just reach out to me @Moltroub or the kind folks @ModSupport and one of us will get back to you. I’m on most every morning for a short time EST and the others are scattered around the world so be patient.

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Considering Dec 20th just passed. I’m praying that you made it through and can come back with some positive news. It’s ironic you spoke of headache, that was what discovered my annerysym. I never get sick or headaches really and I had one every day that was truly controlling my life. It’s impossible to do cement for 80 hour weeks while having a migraine. And it was caused by blood leaking out of my annerysym and I’m causing weight on different parts of my brain. I went from normal to very not normal very fast. That headache saved my life but my o my I don’t ever want it again. Sorry for rambling on. Hopefully as is well with you.

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