My procedure

General personal-stories
1

Hi Everyone,

Well my procedure was done two weeks ago on April 18, 2012. I had 2 giant wide neck annies on my left ICA. The highest up was over 2 CM and the lower was 1.5 CM. These were found in early February by an incidental finding. I had a CT done on my jaw and the radiologist found the unruptured annies. They said I probably had them most of my life. I started the education process right away. Learned about the Pipeline Stent, bypass and occlusion (coils and clipping were not an option). I had an angiogram in early March, beautiful pictures of the yucky annies!

I did a ton of research on vascular options in the SF Bay Area. I decided that I had very good, competant care where I was at. The whole department works as a team, including radiology, going over options for each patient. I liked that my doctor wasn't making decisions in a vaccuum. My doctor called and talked to people throughout the country as well as the company who developed the Stent. I felt very well taken care of in terms of knowledge. Everyone said that my case is just what the Stent was developed for. My only concern was the experience in actually doing the Stent procedure. So, it turns out that the assisting doctor has done more than a dozen of the Stents and he has been a neuroendovascular radiologist for over a decade, he has a wonderful reputation. With both doctors being "hands on" and with 2 proctors in attendance I felt very comfortable. We decided to go for the Stent with occluding the artery as a last resort.

My husband and I decided that waiting or doing nothing wasn't a good option for us. We like to travel and I am a work out junkie. There was just too much risk for our taste.

I started the Plavix and Asprin 6 days pre-procedure. On procedure day I showed up very early. They did the balloon test first to determine that they could occlude if the Stent didn't work out. I was awake for the first 45 minutes then they put me under GA for placing the Stents. I went into the procedure room at around 8:30 or so. When I came out of the GA, still on the table it was 6:00 PM. That is about 8.5 hours under GA!

I went up to ICU right away after they woke me up. The doctots told me they could not place the Stents at all. They tried for more that 7 hours but the artery was pretty messed up (u turns and such) beyond the annies. They ended up occluding the left ICA. I spent 5 days in ICU with them trying to drive my BP up. Finally I was released to go home!

I am still trying to figure out what the new "normal" is for me. I am tired alot and even if I go out for a meeting or something else to do with work, I am home early to take a nap. I am blessed to have an amazing family that takes such good care of me and gives me time to work things out.

Right now I am dealing with problems with my eyesite. I went to an Optometrist who told me my left eye is turned in a bit, so I have double vision. I am also still dealing with very low BP.

I guess I am sad that they could not place the Stents, and a little angry over the fact that they had to occlude the artery (so permanent), but I'm sure that will go away with time.

Well, that's it for now. I am happy to answer any questions. Or if anyone has dealt with the artery being permanently occluded and can give me some insight, please feel free.

I hope this helps someone who is still deciding their options.

Rikki Lynn

2

Hi Rikki,

It sounds like your procedure went very well although the treatment was different from what you expected and that you are having a pretty good recovery. Thanks be to God!

Your new normal is not likely to be established for quite some time. Three weeks post surgery is a very short time for recovery from aneurysm treatment. Your emotions are likely to run high for a while especially as you sort out the side effect issues. Please be patient with yourself.

My annie was clipped so I can't speak to coiling and occlusion. However, there are many other BAF members who have coilings who can also address the side effects that you're having.

Take care.

Carole

Take care.

Carole


3

HI Rikki Lynn...

You are so early in your stages of Healing...it takes sometime to know what is your "new normal" ... and things that need to be addressed with the Doctors...even after 16 months from coiling...I find myself extremely tired at the end of the day...and headaches every few days...I think alot had to do with where my annie is located...now I have one behind my left eye...right now watching and waiting...

Since they couldn't get the stints in your annie's, have they given you another alternative...?

Gotcha in my prayers ~ Colleen

4

Hi Carole,

Thank you so much. I believed I would have the procedure and be "normal" 3 weeks later. Your answer makes sense, I just have to be patient with myself. I haven't even had my follow up with the doc yet.

Rikki

5

Colleen,

They blocked the ICA. When I woke up I was sad that they couldn't place the stents but you can't unblock an artery so here I am. I am so blessed that they found it before rupture and I have to keep that in mind when I think about my recovery. I think a month is forever but it really isn't at all.

Thank you,

Rikki

6

You continue to have my Thoughts and Prayers Rikki ~

7

Hello Rikki Lynn

I had a right 2.7cm giant carotid cavernous aneurysm that was fusiform in shape and too long for a stent. I had occlusion of the carotid artery and coils pit in the aneurysm in Dec 2011. So, it seems we are similar. I had double vision due to nerve compression and headaches before the diagnosis. The headaches got immediately worse and then after some improvement got worse again in January. This pain was nerve pain from the trigeminal nerve which is close to the aneurysm and the balloons the put n to occlude the artery. The pain responded to amitriptylline. Carbemazepine would probably have worked to. My GP (primary care doctor) probably wouldn't have recognised that pain as nerve pain, but I have a medical background so knew what it was.

I'm impressed you are back at work. I went back to work at the end of April, part-time initially, but I have quite an intellectual, demanding and pressurized job and I am struggling with fatigue and some difficulties with memory and understanding. I think I went back too soon. I'm trying to negotiate an easier role for the next few months. My recovery has been much slower than I expected, but my neuroradiologist and neurosurgeon didn't give me much idea about what to expect. I continue to improve, but suspect it will be a few more months before I can consider myself anywhere near 'normal'.

Was your BP low pre-procedure? I had low BP due to sodium loss at about 3 weeks and needed to increase my salt intake to compensate. Ask your Dr. Also, if the aneurysm is close to the pituitary gland it can affect hormones (e.g. ones that stimulate steroid production and raise BP) produced there.

I had a MRA at 3 months which showed the arteries opening up and improving the blood supply to the right side. The aneurysm was clotted and slightly smaller. As my double vision has improved more and I now barely notice it, I think it must now be smaller still.

I think we are fortunate our aneurysms didn't bleed and my reading suggests occlusion and coils is much less likely to cause late complications or the need for a re-do than a pipeline stent. Reading also suggests almost everyone has improvement in vision before 1 year.

It still feels early days for me. I hope your recovery will be quicker. Be patient.

Judith

8

Hello Judith and Rikki Lynn,

We seem to have had similar fixes. I had coiling and occlusion Dec. 2011 at Jefferson Hospital for neuroscience. This was done after a failed stent try in Nov where my artery was punctured and I leaked blood and dye into my brain and spinal column. YIKES! I am due for an MRA which I have not scheduled. Terrified. At least not an angio. I had my femoral arteries used 4 times!

My recovery was just awful. Headaches, depression, no energy, white spots on my right eye field of vision, sense of taste and smell completely screwed up. Only plus on that is that I lost 30 lbs! from not eating much beyond yogurt and saltines for a month.

By Feb, 2012, 3 months out, I was feeling better. Complely off plavix and that low presser drug. I believe that is what caused the depression. Went back to work on March 1st half time. Back full time May1st. I have a physically demanding job, as well as being in charge of a greenhouse complex. Lots of thinking! So tired all the time for a while. Now, 7 months out, I am thinking of starting yoga again. I often still take naps after work. My vision is getting better, although the neuro said it could take a year and no promises for complete recovery. My kids got me a Kindle so I could make the font bigger and I got large print books from library. Now I can read hardbacks, but not paperbacks. Sometimes my right eye hurts, but not much. The annie was behind it, pressing on a nerve. I was lucky to have had a symptom of drooped eyelid, which is completly gone now. YAY!

After all this, I know I am so lucky to be alive and not had a stroke. I am taking any and all supplements that are good for vascular health, including co-Q 10, quercetin, krill oil, and most important, Vitamin K2. I take supplements for vision - Jarrow Optimal Vision - check out vitacost.com for great prices on all supplements. I also take spirulina, which is supposed to help with radiation exposure. We sure had tons of that with the anigios, CT scans, and pocedures! I treated myself to a Vita-mix blender and drink a quart of green smoothies every day.

I might be totally crazy, I'll admit, but I think I am smarter now. Maybe a near-death experience made me clearer and more thoughtful. I don't know.

Keep in touch with me. I haven't met too many folks who had such huge unruptured annies and were coiled and occluded. xoxoxofrom Shelley

9

Hello Shelly and Rikki

It is good to find there are others with giant aneurysms that have had coils and read their experience. I don't know about you, but I was given very little idea about what to expect post procedure and I think that was because these huge aneurysms are fairly rare and the neurosurgeons and neuroradiologists don't really know. Certainly there is very little in the published medical literature about symptoms other than headaches or double vision. Perhaps we should start a 'group' for 'giant aneurysms' or for 'unruptured giant aneurysms' so there is an area for others like us to post. What do you think?

Judith

10

Judith,

Thanks for writing back! I think that would be a great group! Do you know how to start it?

I had been given the "temporary balloon occlusion" test before any fix was decided, and passed with flying colors! It was so exhilarating to squeeze the nurses and doctors hands and lift my feet and all that while being cheered on. Even Dr. Rosenwasser, my neuro was cheering me on, saying, "Only 14 minutes left, you're doing great!" I started to call him "coach"!

So, after the failed stent debacle, I sure was glad to have passed the occlusion test. I was terrified they'd want to do another try on a stent......We discussed that before I went home for a month to recover from the puncture and leak.

I don't have a medical background, so I'm not sure exactly what went on. We were very lucky to have symptoms!!! I do know that when I asked about the problem with my sense of taste and smell, I was simply told that it couldn't possibly be from anything they had done to me. Crazy, huh? Also, I was told that I would have headaches for a week. HA!

It was this site that gave me the most info about about post procedure. I feel like it is time to give back, although being on the site sometimes makes me scared and worried. I feel so good now, except for the tiredness.

When I went back for my 3 month check-up, it was very hard to be in the waiting room with a lot of other folks who were all probably there for the same sort of thing. Some of them were not in very good shape and I experienced some very strong emotions.

I am a truly lucky person, for sure.

Judith, do you live in Hampshire? I did a work exchange at Hillier's Arboretum twice. It is lovely there. I think it is in Hampshire.

Hugs from Shelley

11

Hi Shelley

I'll work out how to start a group.

Yes, I live in Hampshire a few miles east of Hilliers. I've never been, it is supposed to be wonderful.

Judith

12

New group called 'Giant Aneurysms' now available. I've included large aneurysms too (2-2.5 cm) as they are probably not covered by any other group either.

There is a discussion board there. If we and others in a similar situation use it it should mean in the future people with a new diagnosis have somewhere to go to meet people with similar problems.

Judith

13

Nikki,

HA! HA!

Great play on words!

Shelley