Clipping Procedure

General
1

Hello,

I just heard back from Dr. Spezler's office in Arizona and they are recommending that I get my Aneurysm clipped because of the size and shape. Needless to say I am scared to death of such an invasive procedure. The Annie is 4.5 X 3.5mm and has a wide neck. I also have a Cavernous Angioma that bleed back in Aug. 2011 hence the decision to clip as opposed to coiling. My medical insurance is through Kaiser and I plan to get some second opinions through them as well. Has anyone had to deal with their Aneurysm through Kaiser? Were they willing to give you a referral to a non-Kaiser Doctor? For those of you with Kaiser, who in your opinion is the best that Kaiser has to offer?

I really want to wait until August to get my follow up CatScan (I had an Angiogram this month), gather my second opinions and then decide who and where to get the procedure done. My family and friends are freaked out and want me to do something immediatly, but I really function better having all the facts and getting my ducks in a row first. They say the Annie has a 2 - 5% chance of rupturing and I'm 55 so I have the age thing on my side (somewhat).

What do you think? I really do appreciate this web-site and the kind people who share their experiences. It sure helps make it a little less scary.

Thanks,

Lori

2

Hi Lori...I think you need to do what is best for You...! My husband was so supportive, but my family (meaning dad and mom and sister's) were freaking out...I found it better to go the needed steps...

I found out I had an aneurysm on Sept 12th of 2010 and my coiling embolization was done on November 30th ... hence, I went to see a neurologist and then referred me to neurosurgeons, etc., and like you I had all my facts in order...when neurosurgeons said, mine was leaking...I knew it was time...and within 1 week of meeting with them I had my surgery...

Explain to your family ... you must do what feels right for You...! Gotcha in my Prayers....Colleen

3

Thanks Colleen. This is such a great place to go knowing that people understand what you are going through. My husband is very supportive, just worried out of his mind. I want to make this decision with every confidence I can have. How did you know yours was leaking? Did it show up in the tests and did you experience the "headache"?

Thank you for your response.

Lori

4

Hi Lori and welcome to BAF!

First let me tell you that everything that you and your family are feeling at this time is completely normal! There are a range of emotions that you all will go through and it's great that you have a wonderful support system. I always say, as great a support system I have at home, no one gets me like my family at BAF.

As for the clipping surgery, my older sister had a 5 mm weird shaped annie on the anterior communicating artery that she had clipped just a little over 2 years ago. Although the surgery was invasive, she did survive! She also has another annie that is also on watch and wait.

One year and 3 months later, my 2 annies were discovered, both in the internal carotid artery, right and left side, a 9mm on the right that I had a PED stent implanted in (annie completely gone as of December 2011!) and a 3mm left side annie that is on watch and wait, because it is too small to do anything right now. I live every day with my annie and completely understand the freaking being done by your family and friends. Maybe you should have them come to this wonderful site to read some of the stories here and see that once an annie is known and is being monitored, most people either live with them, up to and including surgery, and some people never have surgery (for one reason or another) but the advantage is knowing that the annies are there and that they were found prior to rupture. That's half the battle!

I wish I had found this site prior to my surgery because like you, I like to be armed with as much info as possible. Being that the PED is so new, having only been FDA approved on April 6, 2011, and my surgery on June 8, 2011, it was a total leap of faith for me to trust my surgeon with the limited info I could find on the PED. Lucky for me, it is doing its job!

Let your family go through their emotions, because I know from experience, that I was screaming as to why they were making my sister wait for surgery, nervous as all hell about it, then when it happened to me, I realized why things happen for a reason. My attempting coiling was meant to fail so that I could receive the PED.

I will keep you in my thoughts prayers for your upcoming journey and please keep us updated as to your progress.

Linda

5

Lori,

Invasive it is, however, the surgical techniques used today make last decades outpatient procedures the norm for today's invasive surgery. Ultimately, it's your choice, but... keep in mind that dealing with a unruptured aneurysm is far more preferable than risking a bleed, because you will have a far different outcome simply because everyone involved is working cautiously rather then a race against time. What becomes scary right now is you and your Doctors don't know what the rate of growth is for your aneurysm. At 4.5 mm it is extremely close to the 5.0 mm at which time surgery is warranted.

6

Lori,

I can well imagine how important it is to understand the options. Mine had ruptured and was coiled. Based on my experience, I am not a believer in what is marketed as the minimally invasive procedure.

Did Dr. Spetzler / staff diagnose the cavernous angioma, too? I had to look it up before I had a clue. I am so familiar with cavernous term / location; not of angiomas. Was your angioa treated? Have you been involved with the Angioma Alliance?

Wishing you all the best in your decisions,

Pat

7

Hi Lori...I first had the bad bad headache...c/t scans didn't show anything and my blood pressure and pulse were unbelievably high...diagnosed with high blood pressure...then about 1 week after that I collapsed and went to ER...I was admitted and they did and MRA and told me I had a 9mm aneurysm on my basilar tip artery...from there I didn't know it was leaking until I went to surgeons and after more tests they told me it was leaking...( I was not feeling good for almost 2 years ) had alot of dizzy episodes, sweats (drenched ~ me too assumed I was starting early menopause) but it wasn't since coiled I don't have any of the sweats...I had neck pain, and once the headache started I never rid it...hope this helps Lori...I find that often we know our bodies better than anyone...Cyber~thoughts your way...Colleen

8

To Colleen - Thank you for sharing your story. I hate the unknown and hearing the stories actually puts me at ease. I know everyone is different but to have some idea helps you prepare for the worst. I am still hoping for the best! Cheers to you!

To Linda - Thank you for your story. Hearing about the success stories really helps me stay strong in this battle. I am the queen of denile when it comes to the emotion envolved with this. I prefer to spend my time educating myself. I do realize the every once in a while I owe myself a little pity panic party and let myself be sad that this is happening! Prayers and happy thoughts to you!

To Ed - Thank you. I hadn't heard the majic number was 5mm, good to know. The August Scan will tell the story on growth, even though I will have the Clipping done. There was no growth with the Annie between Dec and Feb . You are right I feel that knowing about the Annie is true home court advantage. Best of luck to you!

To Pat - I wish that I could go with the coiling but because of the size and shape of the Annie Clipping is going to be the best option for me. I do feel confident and hope that the Clipping will be the permanent solution. Regarding the Angioma, I hadn't heard of it either. It is a malformation of veins and the blood flowing through it moves really slow. I believe (now) that mine was oozing over most of the year in 2011 and had a bleed in August. I was having Optical Migrains (with Aura) and then full blown migrains would follow. Everyone thought it was classic Migrain but the Neurologist sent me for an MRI just in case. Thank God! Then the Neurosugeon sent me for a CatScan and that's where the Aneurysm showed up. The Angioma wasn't treated, it's just watch and wait. The trick with it is to not have it bleed again. This was all through Kaiser. I sent my scans to Spetzlers office independently for a second opinion. I am hoping to get a referral from my Kaiser Dr to see Dr Spetzler, otherwise I don't have a choice but to go through their system. I am active on the Angioma Alliance, like this site it is a Godsend! Spetzler's group is recommending that I have the Angioma removed also, but I am only going to deal with one brain surgery at a time. First the timebomb, the firecracker can wait a little while (I'm just trying to do everything to keep it from bleeding again).

Thank you again for your responses. It is such a comfort to know that there are people that know and understand what you are going through!

9

Hi Lori, I can understand how agonizing the decision making can be. During a routine eye exam in Jan 2011, I learned I had a neurological problem. Several days later the aneurysm compressing my left optic nerve was diagnosed. One neurosurgeon referred me to another (at another hospital) who was better qualified to determine the best resolution. My annie (8mm x 3mm ) was clipped in April 20. The surgery was successful and I had little to no problems. (that is until I was one of 1-2% who get an infection - but that's another whole story). I wAS 63 at time of the surgery -- docs didn't know when or if it would rupture but they told me that I was young and had many years ahead of me and to go with the clipping. My mother died of a ruptured annie at age 45 when I was 19.... so it was easy for me to say -- go ahead and do what you need to do to save my life! Keep yourself in a positive frame of mind - prayers are being sent your way during this difficult time.

I

10

To Arleen and Elke, Thank you for sharing your stories. It means a lot to me to know there are people who survived the procedure and are thriving. I know it is much better to be proactive when the cards are in your own hands. I have no doubt that I will have the surgery done, hopefully in October. I have already have been through some of the "brain healing" with the Angioma. It took a long time for me to understand the fatigue that came with that incident. Now I just rest when I'm tired, plain and simple. I guess my fears are rooted in the unknown. My family kinda of has a history where if something weird or unusual can happen, it will. I just want to be here to enjoy a lot more this life has for me and it's really scary to face your own mortality. I have a lot more to do on my lists, including our kids and 6 grandkids. Whew, thank you for letting me say that outloud (in typing), because you just can't get that kind of stuff out with family and friends. Sometimes it's nice to not be so tough and be able to just say "I'm Scared", that's not a word usually in my dictionary. So thank you for letting me vent!

I have an appointment next week with my Kaiser Neurosurgeon and I will find out then if she will give me a referral to the Dr at Barrows. I'm also very interested in what her take on the Angiogram results are. I will keep you all posted.
Thank you again for this web site and all the woderful people on it.

Lori

11

Hi Sue,

Thank you for your kind words and sharing your story. You are absolutly right.

Best wishes,

Lori

12

HI Lori - I too have been diagnosed with an aneurysm that needs to be clipped. I had an angiogram last week and was told the aneurysm is 5.5 x 4mm with a wide mouth and two small bumps on the aneurysm which the doctor finds worrisome. She said we could watch it or do the surgery. I will be getting another CTA in 6 months and then we will discuss it again. In the meantime, my nephew is a neurosurgeon in Detroit and I am sending all the results to him for his opinion. I am almost 64 years old and in fairly good health, so I am leaning towards getting the surgery but I'm not there yet. This is really scary and I agree with you about getting all the facts. My family too would rather I have it done sooner rather than later. I've been reading a lot of positive posts, so I think finding this website will help us get through this. I'll keep you in my prayers.

13

Hello Elizabeth,

Sorry to hear about your diagnose. Your circumstances are almost identical to mine. My Aneurysm is a little smaller 4.5 X 3.5 mm with a with a 4 mm neck and a bump as well. It's the wide neck and bump that really worry me. I am also going to wait the 6 months and have a repeat CTA (in August) to see what's going on. I will be seeing my regular Neurosurgeon next week and am axious to hear her opinion on it. I am really praying that I can get a referral to go to Barrows Institute for treatment, but don't know what my chances are for that. The surgery scares me beyond belief but the thought of this thing rupturing puts me into a cold panic! I have come to the conclusion that surgery will be the only way to ever feel comfortable again. I welcome the wait to get my "things" in order but also worry that that is a mistake. This site and the people on it is a God send. I think I would have a nervous breakdown if it weren't for the opportunity to share and educate myself. I ordered a book from Amazon and it arrived today, it is called "The Brain Aneurysm" written by Vini Khurana, MD and Robert Spetzler, MD. It is written so the non-doctors can understand and goes through just about every aspect of Brain Aneurysms. It was fairly inexpensive (less than $20) and well worth every penny. If I have what I feel are all the facts then I can relax a little. I just wish I was there now, I realized today that I rarely go through 5 minutes at a time without thinking about this thing in my head. I believe the surgery will provide the piece of mind that I seek. I know in time I will get there, as will you. Keep me posted as to your progress and I will do the same.

Best wishes and God Bless,

Lori

14

Lori, based on my experience with coiling, I am glad you are having the surgery.

There are so many, like Carole G, and others I know, away from this site, who have the good results of surgery that support my concerns of coiling.

I researched angioma; andlearned about the Alliance; great that you are involved in that. Sort of reminds me of AVM. You did have wonderful neuro expertise to have them set up the initial testings. It is rewarding to know that it does occur. I hope you get the transfer to Dr. Spetzler because of the number I know who had such success there.

Prayers for your best information for your decision and your rresults.

Pat

15

Hi Lori,

Re: "They say the Annie has a 2 - 5% chance of rupturing " This also means that there is ~95% chance that it won't bleed. So much depends on your health and risk factors. There are also the risks associated with the surgery or coiling and the anesthesia that must be considered when making a decision. Each of our decisions must be"custom" made.

It's not clear to me whether you consider the angioma the timebomb or the aneurysm. Can I safely assume that the timebomb, or the most pressing one for you, is the angioma which has already bled?

My personal story is that I have three unruptured aneurysms. One of them I've known about for almost 43 years and the other two I've known about for 35 years. I had one aneurysm clipped successfully in September 1969 with no neurological deficits. One of my unruptured aneurysms is 5mm, the other two are 2 mm. My personal choice is to "watch and wait". This also gives me time to de-stress and exercise to improve my physical condition and thereby, reduce the musculoskeletal problems that often cause me misery before undergoing any additional treatment I also pray for God to continue to watch over me.

I will also pray for you and your doctors to agree on the risks facing you and to develop an appropriate plan of treatment for all the issues you have to confront. May you have a good outcome.

Carole

16

Hi Carol,

Actually no, the "timebomb" I refer to is the Aneurysm. I am very fortunate that where the Angioma is is caused only small deficits when it bled and the worst symptoms were a migraine. When they bleed they bleed very slowly, I suspect my was "oozing" for a while before the actual bleed. Those deficits have since cleared up and I am on wait and watch with it. Spetzlers group recommended that I have it removed but I plan to work on one brain surgery at a time and pray I don't have a rebleed.

My Aneurysm concerns me because of the size and shape of it. I cannot have it coiled because of the wide neck & I can't take the blood thinners or aspirin (because of the Angioma). I just feel that I have been given the gift of knowlege to prepare and act proactivly. I will make a final decision in a month or two. Thank you for your input, I too want to get in good "shape" and ready myself for recovery.

Best Wishes,

Lori

17

Hi Lori,

Thank you for taking the time to respond to my question.

I understand and respect your approach. The benefit of finding an aneursym before it bleeds is that you have time to learn about it and decide. The bad news is that you have to choose what to do which, as Arleen wrote, is quite agonizing.

I can testify to having a successful outcome of a clipping of a ruptured aneurysm (not much choice there) and the agony of twice (1977 and 2011) having to decide what to do about unruptured ones.

My prayer is that God's firm hand will be on you and your treatment team to guide you through this process.

Take care.

Carole

18

Thanks Carole, my best wishes to you as well!

19

Hello, I saw the Neurosurgeon yesterday and got my answer regarding the referral to Barrows. She said that if Kaiser can perform the service needed then they will not refer you outside of their system. The only way you can go outside of their group is if it's so specialized that they don't provide that service. So for me it's on to Plan B. I am going to go see another Neurosurgeon in Anaheim who is supposed to be a Vascular specialist. I really do like my current Neurosurgeon but need to feel that I have explored all my options before making a decision to have the clipping done (coiling is out for me). One nice thing is she did tell me that she could work with this Neurosurgeon as a team if I choose to get the surgery done by him. I think taking a few months to let all this sink in is best for me. I would really like to just get it taken care of but am so fearful of causing myself more damage by having the surgery done. I guess you just keep weighing it out until the scales tip in a way that makes you feel comfortable with your decision. It's so frustrating, I really need to find something to keep my mind off of this for a while! Thanks for your continued support! Lori

20

I would go with the clipping. I had mine done last Dec. I was out of the hospital in 2 weeks. Its permanent and you wont need to go back in for anything else like you may have to if you go the coil route.