More than one stent- complex/difficult aneurysm

General
1

Has anyone had a stent within a stent.

More specifically, has anyone had a reg. stent like the neuroform stent and then had the PED (pipeline embolization device stent) placed within their previous stent?

If so, have you experienced Any complications?

I have a Large (almost Giant- although maybe giant now, if it has grown)

Vertebrobasilar aneurysm.

I first ruptured in Jan. 2013. I had stent assisted embolization (coils and stent,neuroform)

then it rebled, about a month later (or a week after my first 2 week follow-up from the first rupture/hospital stay) in Feb. 2013. I had more coils placed inside the aneurysm.

long story short. They still want to try and place the PED stent.

(this would be their second attempt. First attempt was last Nov., after several hours they were unsuccessful. They were unable to get through the previous stent's struts to deploy the PED, and I also had catheter induced spasms, and that is when they decided to stop)

They set me up w/ Dr. Neil Martin for a Bypass surgery(UCLA)(would have been STA-PCA :superficial temporal artery-to post cerebral artery bypass, with coiling off one of the vertebral arteries/anni) That was in JUne. Unfortunately, they had complications w/ getting the lumbar drain in my back, needed to make an incision in my back. Once in, the drain was too slow. (to drain the cerebral spinal fluid) and they decided to stop. Then after they released me from the hosp. My back incision got infected. w/ staph and cellutitis. So back to the hosp. for another week. Was sent home w/ a PICC line for IV antibotics, and a wound-vac(they reopened the back incision, cleaned it out, and now I have a large hole/wound)-so I have in home nurse care. In the meantime, they said they think the Bypass would be too risky(which started but never got to the critical part- still had my head shaved, the STA dissected, then just wrapped up, closed up w/ staples) and I need to look into all endovascular options.

So frustrating!!!!!

Im afraid Of the PED. When I woke up in Nov. and they told me it didnt work. Honestly I was very relieved. I was so happy. I felt like it was a sign it wasnt meant to be!!!

sure I was at risk, but I wanted them to find a diff. solution.

Well, the bypass plan didnt really go as hoped, and now, I feel that too wasnt really meant to be. Im still being watched over. Surgeon said he didnt want irreversible consequences for me...

Back to the endovascular surgeon I go.

They told me they want to try a new software that would help them see better- If this works, it would be to guide the catheter through stent's struts to deploy the PED...

another option I was told was to close off one of the vertebral arteries to relieve pressure going into the aneurysm/ ( we have to vertebral arteries- he thinks by closing off one, it should still be enough to get blood flow to circulate to the rest of the brain by the little branches that we have in the neck...)

so, if the software proves to be not helpful, that would be the next plan..

BUT, I recently got an email in response to my questions regarding all the radiation Ive had- and they still would want to move fwd w/ the PED.

I wrote them this:

Physician-patient communication before and after interventional fluoroscopy

Operators should always ask the patient about any previous history of interventional fluoroscopy before undertaking another procedure. It is important to communicate the details of the procedure, patient dose, and immediate and potential long-term health effects to patients and their primary care providers.

Before procedure

Patients should be counseled on radiation-related risks, as appropriate, along with the other risks and benefits associated with the procedure. If patients are likely to have multiple interventional fluoroscopy procedures in a short period of time, they should be informed if there is a possibility that significant radiation exposures may accompany these procedures and may cause potential short-term and long-term radiation-related health effects.

After procedure

After a procedure, the measured or estimated radiation dose should be reviewed (Miller 2004), and appropriate steps should be taken to insure adequate patient follow-up:

  • Schedule a follow-up visit 30 days after the procedure for all patients who received a radiation skin dose of 2 Gy or more or a cumulative dose of 3 Gy or more.
  • Send the interventional fluoroscopy procedure description, operative notes, doses and information about possible short-term and long-term effects to the patient's primary care provider.
  • The patient and primary care physician should be specifically requested to notify the operator if observable skin effects occur.
I wasn't informed after my failed PED deployment
It wasn't until my hair fell out - it happened to be on the same day as my 2 week f/u appointment. I came in and showed You both what had happened!!
It is only then I was told- Yes, this happens sometimes...
I remember how frustrated I was that no one warned me
and then remember Duckwiler very briefly mentioning (over the phone) that I may get some form of cancer- the lining of the brain? something like that
I also remember Melle saying- well, we're trying to save your life now....Like I need this to be done, I don't have an option really.
ok.. But I still would like to be informed!!!
I believe it was Dec 26th I had a CTA scan (after Nov's failed PED deployment)
then I had an angio in Feb2014 because Dr. Martin didnt like the reconstructed images from CTA
WHICH- dont know why the CTA was at all necessary if knowing they want very specific images for a bypass- why didnt just wait for me to have an angio?
Im assuming CTA is less radiation, angio is more- but Angio's provide better images/info?
After the incomplete bypass, my back incision got infected. In the hospital I had to have an MRI
I also remember having xrays while in the hospital
Just curious if either of you know what my levels are?
and am I going to get any information on the related risks etc!
Thank you,
....
His ressponse:

"It is usually my custom to talk about radiation, and I thought that I did. I am sorry if I did not, or if this was not stressed in our discussions. Radiation exposure is always an issue, but considering your aneurysm and the hemorrhages, the larger issue is stabilizing your aneurysm. Certainly there are risks with the amount of radiation you have had. As you say, I mentioned the risk of delayed tumor formation. That remains true. But your risk of the aneurysm rupturing is an immediate risk and a far higher risk than the radiation exposure. We do try and minimize the exposure, but with a difficult aneurysm such as yours, long procedure times are inevitable.

On the other question you had, I have now used the new artifact reduction algorithm, and it is quite good. My expectation is that it will help us to navigate the stent. If you would like us to try, in one procedure, to do the angio and pipeline stent, we can. Please let me know"

I still feel uneasy about the pipeline. Not sure if it's instinct or fear telling me no to do it...

I do know Im still at major risk- and wish there was a guarantee I could be helped

w/o any further complications.. I know, I know...

so back at my research-

If any have experiences and/or advice

I would greatly appreciate it thank you!

176-UCLAscanLTvert1EDITED.jpg (240 KB) 177-BackAngio.Edit.jpg (620 KB)
2

THIS was my 6 month f/u notes from my Dr. I had from the first/second bleeds... before I was sent to UCLA:

179-6monthAngioNotesLLUMCEDIT.jpg (658 KB)
3

Some other questions-

Has anyone had more than One stent- like 2 enterprise stents placed within another stent?

Has anyone had an artery closed off- more specifically, a vertebral artery?

4

Hi Mamika...Gosh what a journey to date...You poor thing, one thing after another...I wish I had some great information and help...but sorta told the same thing when I was concerned about the radiation. I admire you for pursuing this and writing to the Doctor intelligently and eloquently. It is hard to do this when we are sick and going through so much ... and I know on top of it you are a mom which keeps you busy... I am hoping someone can help you out ... I will share your post with our members and see if someone can give you more insight...~ Thoughts and prayers our to you ~ Colleen

5

Our daughter, Megan, has 2 PED stents inside a big PED stent. Installed in April 2013.......

Go to Emory University in Atlanta for PED....Dr. Dion is the best.

6

You poor thing - they have really put you through the ringer. I only have coiling and 1 stent 2011 and luckily have not had anything go wrong (at least with the annie).

I, too, worry about the radiation, although I don't remember if I ever asked my surgeon (which I now can't do because he moved to another state). I have had a lot of scans, mri's, etc. - at least 3-4 per year because of past cancer, (cancer free for 13 yrs). I started to do my own research on how much radiation is involved with angios, but I didn't get very far - most of what I found said that machines can vary a lot. My doctor did tell me that CTA is less radiation and that except for the angio 3 months after surgery that he would prefer me to have CTA's annually unless something showed up.

Do you have the ability (insurance) to have a 2nd opinion? I think you badly need one. I feel so bad for what you have been through.

7

I have a stent with in a stent. The first one was implanted in Jan. 2012. Six months later I went in for my check up and it had not worked the way it should have. On June 8,2012 I had a second one put in. It went inside the first. Ten days later I went blind in my left eye. Back to the hospital I went. That night I had an emergency CT done. They could find not anything. I spent the night there and had MRA done by my surgeon the next morning. Results came back the Annie was gone! What had happened was that it shrank so quickly that my optic nerve could not handle the released pressure. The blindness left within a few hours. However, I do get optic migraines. They last just a few seconds, or about one minute. They don't hurt but I feel a slight pressure. I hope this helps.

8

I really appreciate it,Colleen.

9

Wow 2 PED's within another PED...

Im worried about the fact that it's off label/contraindications for use in my case-

I was under the impression that If I were to have a stroke in the area where my anni is- I die.

I wish your daughter the best, and I would appreciate updates!

I know the PED has worked wonders for so many already.

Wonder if I had the PED placed in the first place, when I first ruptured, would it have successfully diminished my anni??

They say coils and stent -flow diverter,like the neuroform is pretty much protocol.

10

WOW, that must have been very scary at first!!

So awesome your anni is gone!! I already have coils so I don't think mind would dispappear- I would still be left w/ a mass ,if the PED were able to seal it off from ever rupturing again.

I worry that the PED will do it's job (seal off the aneurysm) but later down the line- it can also occclude the small perforators- I stroke- I die.

I worry about the fact that it is fairly new, and it's already had recalls on certain lots.

I've had 2 doctors advise me against it. (the PED)

One said he would do 2 enterprise stents (and was told well, same issues can occur as the PED- when you add multiple stents)

another Doc, said he would add more coils, but be prepared to add another stent

since then, I know my coils have moved up, and there is more room to add more coils- but they dont think it would be a long term solution because of where the anni is- one of the vertebral arteries is pushing blood flow right into it. So, they said another option would be to close off the other vertebral artery to relieve pressure into the aneurysm, and also adding more coils into the aneurysm.

I need to make sure if that would be a safe option though.

11

Mamika....I am feeling overwhelmed reading your status / options and viewing your images...

Have/has the doctor viewed the images with the known implanted stent(s) with you?

Did the first stent(s) not provide sufficient flow diversion?

Or, is it in another area?

So much to read / comprehend...be back later..

Hugs and prayers,

Pat

12

Also, what adds difficulty to my situation is that the artery leading to my anni is a bit malformed- meaning its more of a squiggly line than a straight line-

So the stent I have (neuroform) bends with that artery. The neuroform stent has open links. which is why when they tried to do the PED in Nov. they had a hard time getting through-

it is difficult to 'see' and they tried different techniques to get the leader to turn- it would weave in and out of the struts of the stent. PLease see attached image of an example of how the stent has these openings as it bends w/ the artery)

Neuroform: flexible stent designed for treatment of intracranial wide-necked and fusiform aneurysms. The system is composed of an open-cell design with two connectors between adjacent segments. This allows for significant flexibility and decreases the likelihood of branch vessel obstruction

.I also think that the PED stent not being able to be deployed back in Nov. was a sign- it shouldnt go there-

I imagine that it can perhaps get a kink esp. w/ the other stent I have already there.

I just keep hoping third times a charm- as in third time of adding coils into the aneurysm would finally just occlude. They just don't think it is a long term solution-

My siutation is complex and rare.

I have a large anni in a bad spot!

Wish it could be just clipped- again-too risky to do, and was also told that with those coils already there -its not possible. One Dr., Dr. lawton at UCSF said over a phone consult- he would try to clip,(he lieks that it's not completely coiled thinks there is enough room for a clip) and plan b would be the bypass. (this was before I decided to go for the bypass at UCLA) of course he would need an angio- their own imaging...

When I passed his plan onto my doctors at UCLA- they said it was too risky- cant be done - it can rupture on him, etc...

I'm thinking of sending my images to Dr. Spetzler and getting an opinion from him.

When I was going through the decision process of choosing to do the bypass- I was told by Dr. Martin that only two other surgeons in the nation have the experience to do the type of bypass that was needed for me- He said Dr. Lawton at UCSF and Dr. Spetzler.

I've had a phone consult w/ lawton-

and I just wasnt willing to take the risks he was suggesting

and he said its something I would have to choose- to accept the possible consequences-like the loss of facial nerves (since there are a lot of nerves in the area of my ani that can be damaged- irreversible consequences) and not have to worry about the aneurysm anymore.

PLus he's in S.F

The bypass was a very complex surgery- not many like the one planned for me have been done-

If I was going to do it, then I rather stay closer to home- where my fam. could visit. Or if anything major happened it'd be easier on all if I was closer.

(UCLA is still a little over an hour from me)

I have yet to get an opinion from Spetzler. I need to send my images and money order for him to review them. I'm wondering if I should send the images I have now, or wait till after the diagnostic angio UCLA wants me to have using the new software to help them see better through the artifacts and not have them do more coils/PED at this point.

I just know they think Im at high risk of rupturing again, and that the rupture can be catastrophic for me

( I have been very lucky thus far)

178-Neuroform.jpg (114 KB)
13

Only have one large anni Pat.

The first rupture I had they I had a stent and coils put in.

but a month later it rebled- so they put in more coils.

The stent I have I guess does not do such a good job of diverting the blood from my aneurysm

It large/wide neck.

14

written by Spetzler- just suggest reading at least the conclusion in the first section

http://http://neurosurgery.med.wayne.edu/pdf/nn_-_bypass_for_basilar_aneurysms_neurosurgery_2013.pdf

.....

Vertebrobasilar junction aneurysms are rare, with an incidence of 0.5%

Aneurysms located at the vertebrobasilar junction are uncommon lesions and are often associated with fenestration of the proximal basilar artery.1, 2 Surgical access to the vertebrobasilar junction is difficult, and local anatomy is complex due to the presence of perforators to the brain stem and lower cranial nerves.

15

Our daughter's first surgeon tried like all get out to rush her to Florida for a coiling procedure. Had that happened, she probably would not still be alive.

She is doing very well so far.

16

that is sort of what I thought...tho I did not know which area of the basilar...e.g. at its formation off the VAs or at its bifurcation to the PCAs... or possibly somewhere in between...

I am amazed / difficulty understanding...how more coils were needed in a month...and , the potential not addressed with you on/ before discharge?

Do you have the angio images of that neuroform stent? Have the images been reviewed/explained to you? Seems like the large wide-neck would have been diagnosed and the right size place...or possibly two initially???

I just keep thinking of questions to ask...

Hugs and prayers... for each step...