My "complicated" health

General
1

Hi there, figured I'd explain my story in a little more detail. Thanks to those who have replied to the more specific questions/worries I've posted.

Until Dec. 2011, there was pretty much nothing interesting in my health history. Then, I had a mild stroke. Luckily with no deficits. However, I did learn: 1) I had a DVT in my right leg which had absolutely no symptoms, 2) I have a PFO (small opening in heart, 25% of people have this), and 3) I have Protein C deficiency (clotting disorder), likely inherited from my dad (history of clots). So, I went on lifetime Warfarin and have been doing fine with it. It has reduced my worries greatly.

Now, on July 15 of this year, I had a brief episode of double vision. Having learned to not take weird things like this lightly, I went to the ER. Ruled out a stroke, thankfully, but an aneurysm was discovered incidentally. Said it wasn't related to double vision (no explanation for that really).

Was referred to neurosurgeon in Seattle and have met with him and had a angiogram. The aneurysm is behind my left eye and is 5 mm with a wide neck. The 2 surgeons I spoke with agreed that coiling with a stent would be best. I have been ready to say "yes! let's do it!" until I started researching. Actually, I was fearful of joining a forum because I was afraid I would read mostly stories of things that went wrong. And, to be honest, reading stories on here does scare me because of things that have gone wrong.

I am 49, married, and have the most precious 11 year old daughter. I want to be here for her, and am so scared of either ignoring the aneurysm or of taking action and something going wrong. I still have a lot of life to live! In reading about stents, I am concerned because they are so new and don't have a long track record. Feel better about the coiling, since it's been around longer. That stent will be in there forever and I'm worried with my clotting tendency that I'll have a stroke during the operation or I'll always be worried about getting one after. Since the aneurysm isn't causing symptoms and is small, I'm wondering if I could live with the fear of rupture and do nothing.

I'm thinking I need to schedule another meeting with the surgeon and get some more specific mathematical odds from him. And also consider getting a different surgeon's opinion. I guess it's fear of aneurysm bursting vs. fear of putting something in my body which will form a clot leading to stroke. Or of messing with something that maybe didn't have to be messed with - I feel fine now - what if I don't after the procedure? I am thankful I live in a time where there are options, but it still all seems kind of dicey.

So, there you have it. Glad to be on this site and hearing from others. :)

2

Hi Karene

Can I ask what Neurosurgeon you have met with? I recently had my surgery (clipping) done at Harborview Hospital. I met with several surgeons before I decided 1) coiling or clipping and 2)the doctor that was best for me.

I can give you some feedback if you like. My surgery was very successful and luckily I did not suffer any of the possible risks. I am recovering "with flying colors" as my surgeon put it.

Terri

3

Karene, thank you for sharing so much... First prayers for your health for you all for your right decisions...

My interest is jogged by you...because I so consider (personal opinion from aneurysmal experiences)... the likeness of ischemic and/or hemorrhagic stroke symptoms...

First, to ask about your testing/diagnosis of a "stroke" when you were so young...you were blessed you even got that diagnosis...Was a CT or ultrasound or MRI done?

Was your stroke in the same location of your now diagnosed aneurysm?

You were blessed sufficient testing was done in ER...however, I personally disagree that double vision is not a symptom...also reaction to light (photophobia) can occur...especially if leak/rupture...at least, mine.

My question to the docs would be the (potential) growth level in each of those three years...if whatever the testing you had in 2011 could/could not have displayed (visualized) it then?

This type of potential growth per year would be most critical for you in your research for your decision...

For info (if you do not have it already; e.g. supplied by the docs you met with), you can go to the FDA site for data on the various stents approved for cerebral implants...

The easiest way (for me) are just searching by an FDA #: they are kept in annual order...w/all other approved devices... can be tracked in those annual groups by the "category" column...

The Pipeline (the newest?): P100018 in 2011;

Neuroform: H020002 in 2002

Cordis: H060001 in 2006 approved in 05/2007 (cannot remember which annual list it is in)

There are many other brand names...can track them under the "category" column...

You may have been provided the brand name on the presentation to you...

Of interest (to me) has been that the FDA approvals are generally anatomically specific of artery(ies)...

and, most approved for use concomitant w/coiling of wide-neck aneurysms...

Many of us end up w/stents, off-label, for non-wide neck aneurysm minimally invasive therapy.

My aneurysm, post leaks/ruptures, was initially diagnosed as 6mm; then 7mmX5mm...in the formal record and as Left Internal Carotid Artery, supraclinoid segment...likely distal to yours. It was also noted as a Hunt and Hess Grade 1 and Fisher Grade 1 in the formal written records...

There are a number of Seattle members here...who may give you referral data, for a second opinion...

A lot of our input may also appear to be dicey...we can only share our experiences...and our records...

There are two books listed in the BAF main pages that I noted as "Two Books" in this forum...

Prayers you will get lots of input from members to assist you in questions to ask your doctors, whether of the first and/or second opinions...

Pat


4

Great to hear that Terri! I met with two doctors at Swedish: David Newell and Yince Loh. Did you look at other places besides Harborview?

5

Terri...so thank you...It is exciting, comforting, rewarding...to hear the stories like yours...I pray for so many others...

Hugs and continued prayers,

Pat

6

I too met with Dr. Newell. He is one of the top docs in the state. He really seemed to know his stuff. Dr. Laligam Sekhar at Harborview (a world renowned doctor) was the one I chose to do my surgery. It is just my opinion, but both my husband and I felt he was friendlier and more personable than Dr. Newell. With Dr. Sekhar I felt like Terri with an aneurysm rather than just another aneurysm. I hope that makes sense.

Also, I felt more comfortable with Dr. Sekhar's approach. Now, you and I are two different people with two different aneurysm's. So I am just explaining ME. My aneurysm is located in the anterior communicating artery. It is between the two hemispheres. Dr. Sekhar did an ear to ear cut of the scalp and took out a piece of skull in my forehead to approach the aneurysm head on. However, Dr. Newell wanted to come in on the side and take out a little brain matter to reach the aneurysm. I did not like that idea.

In addition, based on the size and shape of the aneurysm, Dr. Sekhar said that there MIGHT be a possibility of needing a bypass because when the clips were applied, it COULD decrease blood flow. He was thinking three steps ahead and was prepared to do more if the need arose. Dr. Newell dismissed the notion of possibly needing a bypass. Luckily I did not need one.

One of the doctors I met with for possible coiling was Dr. Basavaraj Ghodke at Harborview Hospital. I really liked him and would have gone with him for coiling if that had been possible. My aneurysm was bigger and wider than first thought and clipping was my best option.

Please let me know if you have more questions. Also, I still have my list of questions I asked the different doctors if you would like some ideas.

Terri

7

Terri...thank you for your input here...cherish it/you...

Pat

8

Hi Karene,

Is there a reason a surgical clipping isn't an option for you? I had two, with excellent outcomes on each..I've also had a coil, but that compacted -- and at the time, the compaction felt as though I was suffering from yet another aneurysm, out of the blue the pain dropped me to the floor....fortuneatly it was the coiled aneurysm and not a new one, but the whole 'surprise' episode of landing back in the hospita ldidn't thrill me at all. I was able to choose a clipping instead of adding more coils, as the clipping is considered the gold standard in treatment and is much more permenant than coils or stents.....longer recovery and much more invasise, yes, but so well worth it in the long run. Myself, I'm leery when it comes to the newer technologies. % 25 of coiling procedures need to be re-addressed in the future, and to me those odds are not very comforting (Like jumping out of an airplane with 4 parachutes--and with those odds, one of those skydivers will hit the ground hard)

Is your annie in a location thats difficult to access by clipping or are you hesitant due to your clotting disorder ? just curious--the biggest red flag would be if the annie is growing, and considering you had the double vision and all, (I agree with what Pat said incidently), I don't think i'd consider waiting and take some action soon--and get another opinion, it certainly is a good idea. do you have any pressure behind your left eye? (I know I did, with double vision) ....Its all dicey, I agree with you, but some of these procedures are more so than others and something NOT being done is far more chancy ...Good luck as you go thru this, it isn't easy, I know.

Peace, Janet

9

Hi Karene...this is the toughest...many of us are plagged with so many health issues along with brain aneurysm...sometimes I wonder what came first the "chicken or the egg"...sometimes we must take care of the biggest issue...and then go from there...and then the other's a "step at a time"...it can all be overwhelming...I hope they gave you something to relax you until the surgery...and know that we all understand and you aren't alone...~ Colleen

10

Hi Karene,

I had a clipping done for annie on May 7th of this year. I can say, I am feeling pretty well but still battle with fatigue. I am/was 40 when I underwent the clipping at Johns Hopkins by Dr. Tamargo. I have a family history of annies - my aunt and her daughter (my cousin) both died from ruptured annies. Now, another first cousin may have an annie after getting a CTA done. She is having an angiogram within the next two weeks. I was only a canidate for the clipping since my annie was very thinned walled and funnelling down towards my brain. Tamargo was certain just the pulsating of my heart on a catheter (if I did a coiling) would have puntured my annie. After he completed my surgery, he said my annie would have ruptured with the next year and half. My aunt was 35 when she died and my cousin was just 17. My kiddos, at the ages of 15, will start their screenings for annie and continue for every 5 years until age 50 to be scanned. This was Tamargo's recommendation as well as every 1st cousin of mine and Aunts and Uncles needed to be screened/scanned.

Good luck with your decision and treatment. I focused on how forturnate I was to have this found and that modern medicine was at a point where it could be treated very successfully. (And I am sure you are, too.) I was back to work at 6 weeks post op but I also work from home, so that was ever so helpful - no commute time. I do feel better month by month. I also had to have my left side of head completely shaven. My hair has grown into a very nice pixie cute, if I do say!

11

Thanks for all the info. So how does one go about getting a second opinion. Do I contact them directly or request it through my primary care doc or something else?

12

Thanks. They didn’t really suggest clipping. It was mentioned briefly but I believe they said with my clotting disorder it did make it much riskier. I think they find mine very easy to reach with the endovascular procedure. At this point, I need a better idea of what they think my risk percentage is from doing nothing. When I read the percentages related to coiling and clipping, it makes me wonder what’s best. The double vision was only for one minute and hasn’t returned. I don’t have any pressure behind my eye. If there had been any “leaking” I assume that would have shown up on the MRA in the ER. Will continue to seek out opinions to help me decide what’s best. :slight_smile:

13

Thanks for the reassuring words. I am not taking anything for anxiety. I am generally leery of medications, as I hate side effects. Just going to ride this out! :slight_smile:

14

Congratulations on your successful surgery! Getting it done must have been a huge relief. Your family risk is very clear. Mine not as much. My maternal grandmother died from a ruptured aneurysm in her 50s. She’d had many many rounds of shock treatments for bipolar and was a heavy smoker. Her father also died the same way but around 80 years old. He was a cigar smoker. No other family history - neither my mom nor her sisters (all in their 70s) has had an aneurysm detected. So, it’s hard to really know just how strong my family connection is. Thankfully I am not a smoker and have low blood pressure. :slight_smile:

15

Karene,

I believe it is very hard for the surgeons to know exactly what your risk factors are for rupture. Originally, mine was thought to be a 2% risk of rupture in the next 6 months when my husband and I met with my surgeon. I had my surgery 3 1/2 weeks after meeting with my surgeon, so that I would have time to heal before my son got married. But, as it turned out there was another aneurysm growing off of the back of my aneurysm that was not seen in any of the images that was about to blow. We were told that we avoided a catastrophic failure by having the surgery when we did. It took two clips to treat my aneurysm and I am very glad that we chose to have the surgery when we did. I would not have survived had mine ruptured. As it was I hemorrhaged during the surgery and thankfully he was in there and was able to take care of things quickly. It is a scary decision to make, yet we felt the alternative was scarier. I know that every aneurysm is different and every location is different. Mine was also on the anterior communicating artery at the junction of the anterior cerebral artery. While my surgeon was in there he wrapped another one that was forming before it had a chance to grow any larger. I have another one now that is on the Middle Cerebral Artery at a junction of 2 other arteries. We are watching that one, but I will choose to have surgery again as soon as it is large enough so that I don't have to worry about it rupturing.

You will be in my thoughts and prayers as you are facing this difficult decision.

God Bless,

~ Carol

16

Karene

I called the doctors office and told them that I was recently diagnosed with an aneurysm, and that I would like to get another opinion. I did a records request from the hospital I had my angiogram done at. They sent the scans to the doctors. Like I said in earlier reply, my husband came with me to the meetings. I had a list of questions and took notes. For me, it helped having someone else there because it can be very overwhelming.

I went from "possible coiling or let's wait and see" to "you should go back to the surgeon to discuss clipping." I had been standing at that moment looking at my brain scan. My legs gave out from under me and I almost hit the floor. Luckily my husband was there and grabbed me. I would have never been able to drive home.

Terri

17

Also, my annie was less than 2mm. Size doesn't indicate ruputure, a new study has come out to say. It is more about the growth of the annie and not the size. I think the study is posted on this site, somewhere. Or you can google it with a few key words.

I will also say, do get a second opinion. My cousin met with a neurosurgeon in Philly and he didn't think her CTA findings of a small arterial bugle, can't rule out an annie, was worth an angiogram. When my cousin mentioned my case and that my surgeon, Dr. Tamargo did an angiogram for a susupected annie less than 2mm, he finally agreed to order the angiogram, stating (something along the lines of) "Well, if Dr. Tamargo saw a reason to do an angiogram for your cousin's very small suspected annie, then we will order one for you." Her neurosurgon actually worked in the past with Dr. Tamargo. Just shows how you have to be your own advocate. Also, the Fellow that worked with her neurosurgeon said there was no way to tell how thinned walled an annie was but Dr. Tamargo said he could tell the thinness of my annie and he was right.

18

Thinking of you Karene. Any updates?

Terri

19

Thanks for checking in, Terri. I am currently waiting to discuss more of my questions with the doc. And am going to call for a 2nd opinion. So nothing has changed at the moment. Just trying to divert my attention from it as much as possible!

20

Just thought I’d update you again, Terri. I went for my 2nd opinion today at Harborview. Doctor thinks my best bet is clipping, with Pipeline as 2nd choice. Didn’t really think coils and stent was a good choice. But Swedish recommends the coils and stent. So, basically totally different points of view on treatment. Now I really don’t know what to do! I trust them all so ultimately have to believe I’ll be okay either way. They both say low risk for the procedure they’re suggesting. So, considering the possibility of getting yet one more opinion!