Thank you

General personal-stories
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Hello All,

First I want to say thank you to everyone that reached out to welcome me, it is very heart warming. My journey down this road began two weeks ago and I am still trying to completely wrap my head around all of it. I was at work and started to feel ill (dizzy, light-headed, sick to my stomach, and very sensitive to light). I honestly thought it was a migraine, which I have had in the past, and asked a co-worker to handle my meetings for the rest of the day, instead she took one look at me and said, "no, I'm taking you to the ER". I tried to argue, but thankfully she won and took me straight to the ER. After 10 hours, a CT scan with the dye in it, and a lumbar puncture, I left with the diagnosis of a 7mm x 4mm aneurysm. On July 24th I had a cerebral angiogram and was given the results on July 28th when I met with the top neurosurgeon in Spokane, WA (where I live). What he had to tell me was very disheartening as I have a fusiform aneurysm and he does not have the ability to operate on it himself. He has referred me to Dr. Delashaw at Swedish Medical in Seattle, but I am now waiting for my insurance company to approve going out of network, as there is not a surgeon in network that can perform the surgery on a fusiform aneurysm. I am hoping to get an answer from the insurance company today or tomorrow. While my condition is not emergent, Dr. Carlson in Spokane did say that it definitely needs treated in the next 2 months. I am a single mother of two amazing teenage girls, who are my biggest supporters and the greatest loves of my life, and I worry about them more than myself through all of this.

If anyone has had the wrap procedure, I would appreciate hearing more about it, the procedure, the pros and cons, the recovery time, etc.

Thank you all again,

Lisa

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Hi Lisa...I have seen a few have the wrap procedure here at BAF...but alas I cannot remember their names...I am hoping someone can give you some information...so I am going to share your post and hopefully we will hit on those people to help you ~ Thoughts out to you ~ Colleen

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Best wishes for your referral, Lisa. There is a search box in the upper right corner. Try searching for "wrap" and see what comes up.

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Lisa,

I had the wrap procedure done on a second aneurysm that was forming when my surgeon went in to do a clipping on another aneurysm. My neurosurgeon explained that by wrapping the aneurysm that it will promote scar tissue to grow on the artery giving it strength and will keep it from growing. As for the procedure itself, it is a craniotomy because the wrap is done on the outside of the artery. So the recovery time is the same as having a clipping done, due to the craniotomy. I have another friend that also had a different kind of clipping done. I have not seen anything like what she describes but is it a clamp type thing that encompasses all the way around the fusiform aneurysm and she also had some other surrounding arteries wrapped because her surgeon said they looked weak. She is doing quite well. Due to location will determine how large of an area of the skull needs to be removed in order to access it. I pray that your insurance covers this other specialist and that you are at peace with having the surgery. Please let me know if you have any other questions.

God Bless,

~ Carol

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Thank you so much Carol. This helps. I am very at peace with having surgery, more so than I am waiting and wondering daily what will happen, when and how. I am an avid runner and have been told by the surgeon to stop until the surgery is done. Honestly, not running is harder for me than anything as it is how I relax and get in touch with my feeling.

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Thank you dancermom. I will try that!

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Thank you Colleen!

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Hi Lisa. I had a dilated artery wrapped via a craniotomy back in May, and as best I can tell from what I've seen on this forum, the recovery is very much like those who have had a clipping. We all have slightly different versions of the same thing, so I think our recoveries are also slightly different, depending on the situation, but I can tell you that tomorrow it will be exactly 3 months from my surgery, and I'm doing great. I'm essentially back to normal routines, but my eyes do get tired easier (I work in front of a computer all day), and I'm still not running or swimming yet because my incision took a little longer to heal than most, but I'm an unusual case there.

Once you have your surgeon lined up, he'll be able to tell you exactly how he is going to perform the surgery, which will help you figure out some of what your recovery will be like (ie, where your incision will be). As you get closer to your surgery, and as you recover, let me know if you have any other questions that I might be able to help with. Good luck with the insurance!!!

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If you can message me I want to tell you something about wrapping. Please message me. Jen

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Hi Lisa

Saw you post and thought I would reply.

I was diagnosed 2 years ago with 5 aneurysms, they were found by accident whilst looking at an other issue.

1 was in the Basilar region and was coiled, the second one was right side Ophthalmic and has also been coiled, at my last scan a few months ago, these two are occluded/fixed.

There is no growth in the remaining 3 which are 2 x right side Middle Cererbral Artery (MCA) and one left side MCA.

The sizes range a from 10mm x 4mm fusiform right side MCA to the others being 6mm bulbs.

The info from both my Neuro Radiologist and my Neuro Surgeon is as follows, both eminent specialists in their fields here in Oxford England: Scan once a year and watch them, manage blood pressure, a 75mg asprin a day.

The big one 10mm is a fusiform one which is at a junction and difficult to get at, I even discussed the possibility of bye passing this one, can be done but risky.

Trust me when I say I have explored all possibilities, as an engineer I understand hydraulics and that is exactly what we are talking about here, it is just the hydraulics of the brain and what happens when a vessel bulges and pops, which is the same as a car hose or a pipe in your heating system at home.

The bottom line is when, if ever, will they pop, I am fortunate that I never had any symptoms at all and would never have known had I not had a scan for another reason.

The one thing that I am adamant about is that I will not let someone cut 2 holes in my head, as open surgery is more risky than endovascular treatmenty for all the obvious reasons.

Secondly, endovascular treatment techniques are advancing year on year, both from the equipment used and the surgery techniques themselves, in other words, what was not possible a year ago is now possible by endovascular procedure's.

If the is anything that I have learnt in the last few years since being diagnosed with these little buggers, is that Acceptance is the name of the game, accept that you have them, accept that one may pop and the resultant risks and also accept that it will may never pop!

Live a healthy lifestyle, watch you blood pressure, learn not to get to Pxyzxy Off with life and have a annual scan, for let me tell you I have spoken to the best Surgeons in the UK and the US and aneurysms is an in- exact science, in other words they cannot accurately predict the outcome/future one way or the other.

What they can tell you, is the risks of damage and life expectancy if one pops and this info is pretty accurate.

Have a look at a study done by David O Wiebers from the Mayo Clinic, this gives you some good insight into these little buggers, but is not an absolute answer, it is just an opinion but a well researched and informative start to understanding these vile things.

Lisa, all the above is just bumf but it is bumf relating to my experiences over the last 2 years, I hope that it is thought provoking for you and helps you.

Please feel free to contact me at any time.

Best wishes and kind regards

Martin Connolly

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I had an aneurysm wrapped by a surgeon at Yale last year (where I was taken by ambulance). Two weeks later I found two of the top surgeons in NYC just to get second and third opinions (at NYU and at Columbia) and each of them separately told me that wrapping wasn’t right and I wouldn’t live to see my kids grow up unless I did the surgery all over again. They couldn’t even believe a Yale surgeon would do such a thing to me. I had the surgery re-done and it was successful. I had to clip because the shape of my aneurysm was not coilable. Since then, three other top rated world class neuros have also told me that wrapping is not the way to go. One is a family friend and he said it is something that has been shown many years ago not to be a good solution long term. Look up the best neuro hospitals and docs rankings - I see only one near you - U of Washington Medical Center in Seattle. Go and let them tell you what’s best for you. Good luck.

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I believe wrapping is a good solution to an inoperable aneurysm, which was why my surgeon wrapped one of mine. It was no where near the size it would need to be in order to clip it or coil it. And the location of mine as it grows may not have been a good candidate for any of the treatments out there as it is at a trifurcation. It is being watched to make sure there are no problems with it.

I am so glad that your clipping surgery was a success - absolutely wonderful news. I sure hope that your recovery has gone well, as well.

Take Care,

~ Carol

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Hi Lisa…Really sorry to hear you have a fusiform and it 's a real shock when you find out that you have a aneurysm . I also have a fusiform they told me mine is between 10 to 11mm.
I was in a car accident head on in Jan last year. I was driving my sister and two brother and my brother in law back from visiting our mother in hospital the weather was really bad we were in a line of traffic and it was dark about 7.30 at night. A car came from the other side of the road everything happened so fast,but thank god we got out alive they all had broken bones and my sister broke a bone in her back. I didn’t have anything as the airbags went of .
About 6 weeks after that I got a pain in my head but I do suffer from migraines but this pain was on ther other side of the head. My doctor sent me for a CT scan which came back showing a abnormality,which I then had to have a MRI scan and they found the aneurysm .
I then went to see a Nuro surgeon he told me that they would go ahead and coil it so just go home and wait till then send for me.
That was in July of last year and I waited and waited but my headache 's we’re getting worse I am a very energetic 59yr old I love gardening but I couldn’t do that even. Because every time I was bending down for a while my head got worse I got pins and needles in my hands and still do everyday it’s what wakes me up.
December 18th last year my headache got really bad so I went to A&E they admitted me and I was there for 3 days but then I started to be sick so they did a lumber puncture and then that night I was transferred to another hospital which has a Nuro side to it and it is 3 1/2 hrs away from we’re I live . By the way I live in Ireland,the next day I went to have a anniogram, followed by a neurologist came to see me and she put me on Inderal 10mg tablets 6 a day,which keeps the pressure down in my head and told me not to take any painkillers as they would make my migraines worse.
But this pain I get is at the side of my head above my ear were as the migraines start at the back of my head but still at the same side of the head.
But when I got out of hospital 2 days before Christmas the pain got easier in my head. But 5 days after that I was back in hospital …I got a clot in my leg were they did the anniogram was put on injections straight away came out a week later then was on warfarin for 6 months.
Had to see the neurosurgeon in March of this year he told me their was only two ways to go with this and that was clipping or a by pass. He said that the clipping and bypass we’re relatively new so the figures of a successful operations are not released.
I went to see him again in July after another MRI scan and he told me that because it hasn’t got any bigger or changed they will monitor me and he will see me in 18 months.
Sorry if I have gone on a bit ,but I thought the more information you know it might help you.
My only worry is can this be down to money ,sometimes I do wonder are they just trying to fob you off or are the fusiform’s just best to leave alone I don’t know ?
I am going to be a grandmother in 3 weeks as my son and his partner are having there baby in England so I Have to fly to see them,but I will fly I cannot let this thing rule my life and you will also carry on and it will be the first thing on your mind when you wake up and when you go to sleep. I do feel for you as I know what I was like but keep strong eat well take thing steady.I am a full time carer for my mum who is 99 and my husband is partial disabled so I am the driver and I do get stressed.
There is no point in saying don 't worry but please god you will be OK.
My thoughts are with you
Misha

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Why do you think you need yours to be wrapped? I had endovascular…in Buffalo, NY. Teaching hospital. Dr. Hopkins… He has trained several who are now all over the country. Also ‘out of network’…had to be board approved, etc. I was awake…completely trusted my doctors…for the stent placement with the coils added 3 months later…giving the stent a chance to take hold. They go through your femoral artery…through your heart and up to brain. Mine were in my right carotid artery up in the circle of willis. I had it done 10 years ago. I get checked with MRI/MRA…every 1 to 2 years. All’s well. My only problem…that kept me from returning to work in a few weeks was after each procedure I bled from the incision internally, leaving me black and blue …huge area…abdomen, leg. I have had an angiogram once since and they brought in 2 doctors (happened to be in the building) who were from Europe…they closed my incision with what they referred to as ‘the European method’. No problem with bleeding at all that time…as they had promised me. So… if you have the chance/choice to have endovascular with the European closure…would be great. I know it depends on where your aneursym is. Good luck to you… Keep us informed. Btw…we all are in total shock when we find out…I was just a walking zombie… Luckily they started to take care of things within a month and a half of finding out… Breathe deep. Sue

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Hi Carol, totally hear you. I would just say this - my surgeons at Yale swore that mine was not operable. And I could have believed them - my husband and parents did. But when I did the research and surfaced two expert surgeons - two of the best - they totally disagreed. And then were able to obliterate my aneurysm. Your case might be completely different, of course. I would just want to know that the best neuros agreed it’s inoperable before I accept that. My best to you :slight_smile:

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I completely agree, Jennifer. Always good to seek another opinion. Things change all the time and new procedures are out there. The location of the one I had clipped can now actually be done through the nose and through the back of the sinus - absolutely amazing and my clipping was done in Sept 2012. I am glad that you sought the opinions of the other neurosurgeons and were able to be treated differently.

~ Take Care

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I am waiting for the second opinion, but my insurance has to approve going out of network. Thank you all for your feedback, I am now more overwhelmed than ever! So many opinions and a lot to consider.

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Awe, so sorry Lisa. We sure didn't want you to be even more overwhelmed. I sure do pray that insurance will give their approval so you can have some peace of mind. Take care and keep us posted. <3

~ Carol

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I am also so sorry…the overload on info can be overwhelming…it is just so shocking for all of us at first…just knowing. People around you don’t ‘get it’. But, you will be okay…lots of different procedures to fix you up. I just meant to let you know of another option. I often take a break from this site, etc. …can still be overwhelming this far out from my procedures.

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Hi Lisa, I had an ear problem so I went to an ENT specialist. She ordered an MRI with contrary, and found my annie. (Nothing to do with ear problem) I got two opinions and was told about the two different options. Coiling or clipping. Both suggested clipping because of my age (49 at diagnoses, 50 at surgery) I actually never even considered coiling…I wanted it GONE. I’m a teacher so I scheduled my surgery accordingly with the summer to heal. May 7, 2013 I had it done. When my surgeon went it, he realized it was attached at a place where the corotid artery meets the left optic nerve. I would have lost sight in my left eye had he done a clipping so he wrapped it. (Clipping would have cut off blood flow to my eye)

Needless to say I had not researched this before because it was never introduced to me as an option, nor have I really looked into it since because it’s done. I don’t want to go through the procedure again. I had my year checkup about 6 weeks ago had he said everything looks exactly like it should look. The annie is smaller, and scar tissue has healed all around it. He said I do not have to see him again. He doesn’t suggest a yearly scan (MRA?) because of the amount of radiation. Which is fine by me. I really, really trust my surgeon, so I have let it go. I wanted it gone, but I am also glad I have my eyesight.



As far as recovery? It was easier than I ever imagined. Almost too good to be true. One night in ICU, two more night in the hospital then home. I was tired for a few weeks…took plenty if naps! We went shopping for Mother’s Day flowers the day after I got home. I did not want to sit around. I started walking immediately, not power walking but walks. I taught summer school 6 weeks later, which is a half day and less stressful, and I was ready for fulltime in September. NO bending over (pressure) and no heavy lifting. I was very careful with that. I followed all the instructions. No hair coloring for three months!!!



Everyone has their story and this is mine. I hope all goes well with you. Trust your surgeon, accept the help from other people during recovery, and hold your family close. My thoughts and prayers go out to you and all of the people here on this page. Keep me posted…