My Aneurysms Beginnings

Yes, I said aneurysms, as in the plural. I do not consider myself an annie survivor. Instead I am terrified of what is ahead of me to become a survivor. I have looked for some sort of peace with what I am about to endure over the next few months and just can’t seem to find it. I’ve researched all the different medical procedures. I’ve looked for survivors here on BAF who are not suffering in some way or another and who have after a year of recovery are back to a normal way of life. I am just not seeing it. There are a few truly recovered and they are grateful and thankful as they should be. Reading the majority of these posts, I have to ask myself is coiling or clipping really worth it, or should I let nature take its course with what we refer to time bombs festering inside of us?

A summary of my beginnings. I was hit by a truck going about 50-60 on my driver’s door, hit my head somewhere and for a brief time lost consciousness. Had one heck of a baseball lump on my forehead, hidden by my bangs. Post-concussion, four days later, the doctors sent me in for a CT scan. Found something. A month later the MRI results are an 8mm wide mouth aneurysm. Another month later, met with brain surgeon. Aneurysm is in a location not easily accessible during surgery but he recommends clipping if I want to add 30 years to my life. I stupidly replied “Well, that’s a no-brainer!” A month after that, I am referred to a radiologist for my first angiogram. He too, does not think I am a candidate for coiling and sends me for a MRA for a better look. Results of the MRA find two smaller aneurysms in two other areas of my brain. Now the surgeon and radiologist have conversed over my case. They determine I now AM a candidate for the coiling and now brain surgery for clipping is far too dangerous. Since all 3 aneurysms are in different areas of the brain, they can only address one at a time. The 8mm one will be coiled and possibly stented, a year from now if the 2^nd continues to grow, will be easily accessible and could be clipped since it is less risky being directly behind my right eye. The 3^rd, well frankly I haven’t really gotten past the part of I have more than one aneurysm.

I have been explained the location of my first aneurysm holds many risks. If the coiling procedure does not go well….if the stent shifts…..if any coils come out…..may have to recoil in another year etc. etc. etc. All include losing the motor functions of my body and speech, just on my first aneurysm. Not very encouraging. However IF everything goes perfect, I could be back to normal and working in just a few weeks. What is their definition of perfect?

5 months later, I have yet to schedule my first coiling, my head continually aches, I am regularly fatigued, family, friends and co-workers around me just don’t understand I am not myself anymore. They cannot “see” anything wrong with me. My work expects the best and I am not able to be my best. My family thinks it is great news that I may be having a coiling procedure instead of the brain surgery clipping. I have taken a leave from the Handbell group I’ve performed with for several years. My previous full life, is now only going to work and doctors’ appointments. I reflect on completely understanding why my girlfriend (for years she was a terminally ill care taker), when she suffered her stroke the words she was trying to tell me was “no 911”. Who… really…. is a complete survivor after any aneurysm rupture or preventative procedure?

I am not being negative, just being realistic of the beginnings of this aneurysms journey. I am hoping the members of BAF can convince me this is all worth it. I am not a fan of any type of suffering nor having to give up so many of the activities I enjoy doing in my life.

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Comment by Valerie on March 11, 2013 at 3:19pm: Hi Dawn,

I'm probably one of the rare ones that still get on this forum even though I had a good experience. I was very fortunate that I ended up in the hospital last April because of vertigo. It turned out I was dehydrated but after they did massive tests I was found to have 2 annies. The clipping was the procedure my doctor recommended and even though I wasn't thrilled with that option I felt so confident with him that I scheduled it.

Everything went great and I was back to work in 5 weeks. I won't say that recovery wasn't trying as it is a little bit. It does take a while to heal mentally and I'm not even sure if I'm there yet..lol! All I know is that I was saved and my life has taken a turn for the best. I'm honestly, truly happier now then I was before I found out about this.

I wish you all the best and I'm sure you will make the best decision. hugs!

Comment by JoAnna on March 10, 2013 at 7:08am: Please if you can afford it..........go to John Hopkins, they are the top annie MD's in the US.I wish I had.

I had 2 annies clipped 9/20/12 in Memphis and now I am experiencing delusions.I have an appointment tomorrow and going to ask for CT.I also sufferd a lacunar infarct somewhere between surgery and 9 days later.MD said I didn't have a bleed during surgery but I just didn't feel right and went to the ER 9 days after surgery and had a CT that showed the infarct.MD ordered another one 3 months later and said it had resolved.I chose him because he has done so many coilings (over 800 a year).I thought that I was going to coil but he recommended clipping instead.I should have went somewhere else because he only has done 34 of these procedures and I was stupid enough to wait till day of surgery to ask him.I have learned to ask questions now.If you decide to go for clipping or coiling go to someone who has done a lot of these on a daily basis.

Comment by Myra on March 8, 2013 at 7:24pm: Dawn- I guess I am one of the survivors with a good story. I suffered a ruptured aneurysm on 02-09-12. I was flown to UT Southwestern hospital in Dallas. Another unruptured one was discovered. Both were coiled.i had really bad headaches while I was in the hospital for 38 days. After coming home I have been blessed not to have anything that I would call a severe headache. All have been treated with some Tylenol. I went back to work part time in June and have now returned to work full time. I investigate unemployment clams for the state of Texas so it can be a brain bending job. I have 5 grandchildren and am always busy doing something. My best friend & I will be planning our yearly girls trip soon. I just want you to know not every case ends in gloom and doom. I do get tired more easily but I'm looking 60 in the face and think I deserve to be tired. Lol! You will be in my thoughts and prayers. I

Comment by Dale Smith on March 6, 2013 at 4:56pm: WOW Dawn I can imagine how worried you must be and overwhelmed by all this I didn't go through this kind of torment I had 2 anyurisms burst at a time of their own choice had no idea or symptoms prior to the hemorages i was in a coma for 6 wks at ma general hos in boston and 6 wks in a rehab but looking back maybe I was lucky not knowing this group of people helped me alot I've only been a member for 2 yrs or so and my ruptures where in 05..it was a great day for me when someone e-mailed and I could get some kind of answers and support I had felt so alone for so long not really knowing what happend and how to describe it to anyone else I'm probably never going to be the same as I was before because the drs. had to take a piece of my frontal lobe out to make the stint stop the bleed..but I survived!! still married have a grandson can still ride my harley and love my family life has changed so I change with it..you have a chance to be pro-active, in that you should be secure because your still in control and make decisions that some of us never had the chance, but be strong and keep talking these people here are simply incredible!! allow us to give support so that in return you can share your support to someone else in the future..did you here me?? THE FUTURE!!!please be kind to yourself..life is precious it's living that can hard but you will come out of all this have faith and keep talking!!!!

Comment by JM on March 6, 2013 at 10:36am: Hi Dawn:

I am sooo very sorry for what you are going through...and I understand every word you are saying....most people are recovering and not too many of us with Aneurysms untreated. I have an aneurysm that they found while watching my pituitary tumor...and my opstions are very limited...I suffer from an autoimmune disease which means my surgeon has taken my case to the risk committee at the hospital and they will not do any surgery as I am too high risk and if they did they are afraid that my body will turn on itself and if it does he says that will be the end as they will be nothing to do. So I live every day and every headache wondering if today is the day....and the hospital that would treat me if anything happened is 2 hours away so my chances are slim....and it is hard to handle...and my friends, family, do not understand...they don't see anything wrong with me...so there is always comments to the effect that I am faking...not that they come right out and say it....I had to give up my job as too much bending and lifting...and with the headaches being what they are I was home more then there...so life has become....oh I don't even know a word to call it. I have no words that will likely make a difference...only to know you are not alone....and there is someone who knows just what your going through and how your feeling...they are so many support groups for treated...ruptured but not so many for unruptured or untreated....but I am here for you if you need someone to talk to....or just listen because it has got to much for you....it is a hard decision...I have alot of bad days...days I just don't understand why....I get mad...I get sad...I some days just give up....some days I can't think of anything else...I try to tell my family my wishes but of course they don't want to hear it...my mother even gets angry when she finds out I am not feeling well for 2-3 days in a row....I try to understand as they don't know how to handle it...but sometimes you just need people to listen...give you a hug...let you cry....and it is tiring trying to keep yourself up for others....but know you don't have too....good or bad this is our life....and knowing someone else understands, for me, means alot...so never think your alone...I am willing to do what I can for you....I will keep you in my thoughts and prayers....

JM

Comment by Marjorie B Filipiak on March 6, 2013 at 10:36am: Hi Dawn, In Jan.2012, I had the "Pipeline Embolization Device" (PED) implanted. At that time I was 65. I've had my share of problems, double vision, headaches and occasoinaly blindness in my left eye. I had had my annie for about ten years and didn't know it. My entire story begins in the year 2010.

I had an aneurysn on my Aorta on the left side of my heart. At the end of March, of that year, I was rush to the hospital ER. No one could figure out what was going as my heart rate was fine but my blood pressure was dropping out of sight. I was then rushed to CAT scan, where it discovered that my Aorta was about to rupture. From Cat scan, I was rushed into OR. The Heart Surgeon had just finished attaching the new Aorta vein to the right side and just starting to work on the left side, just below the Aneurysm when it ruptured. I lost seven pints of blood. I am lucky that I had a great Doctor working on me that day. Eighteen months later ( 2011) I had gone back in for another CAT scan, my Cranial Aneurysm was found. In Jan. 2012, I recieved the " New" PED implant. In June, of the same year, my nuerosurgeon discovered that the implant did not work. He implanted a second one. Two weeks later, my Anny was gone! I am now doing well! At that time I was told that I had had that Anny for about ten years. God blessed me twice. I now live my life one day at a time. I am now 67. Three years ago I didn't think that I would still be here. Marjorie

Comment by Dana H on March 5, 2013 at 3:09pm: Dawn- your posting resonates with me- I feel much the same way- you will do what is best for you- no matter what you choose- Dana

Comment by Carole G. on March 5, 2013 at 2:44pm: Hi Dawn,

Re: "I’ve looked for survivors here on BAF who are not suffering in some way or another and who have after a year of recovery are back to a normal way of life. I am just not seeing it. "

Here is my story. I am a 43 year survivor of a ruptured berry aneurysm that was clipped in 1969 (in the dark ages from a technological stand point - coiling was not yet invented). I have also lived with at least one unruptured aneurysm since then and have know about two others for more than 35 years. My recovery was miraculous and I have had few issues related to my aneurysms all these years. I do have a post craniotomy seizure disorder that is well controlled by medication. My last seizure was more than 20 years ago. I rarely experience headaches or debilitating fatigue. For these things I give thanks to God.

I have had a full life, an exciting profession, lots of travel (much of it solo and international for business) and a long happy marriage. I've sung with symphony orchestras and I direct a youth choir. All of this was accomplished post annie.

My "sufferings" have been/are more related to life in general, i.e., injuries from a car accident and being blessed to live long enough to begin to experience the pains of growing older. I am blessed that I had to make few sacrifices because of my annies but, I did forego having children because of the risk to me and again, the state of technology. There also was no BAF or annie support group to lean on.

None of us can tell you exactly what your journey will be like because it is different for all of us. Our age, health, the skill of our physicians/care team, the hospital and the location of the annie in your brain all have influence on our recovery. I can only encourage you to do your research, ask questions and pray.

May God guide you in making the decisions that are right for you and may He bless you with a competent and caring treatment team.

Take care.

Carole

Comment by Dawn H on March 4, 2013 at 10:59pm: Thank you to each of you who have replied to my original post. I appreciate your input and it does make sense how several survivors after being back to normal, go back to their busy lives. I am fortunate knowing I do have one of the best radiologists who performs coiling and stenting on my case so that does help ease a few of the fears. Since I do not have any severe symptoms besides a constant dull headache and daily fatigue, I am not ready to jump into any procedure. The coiling has yet to be scheduled, but I will keep everyone at BAF updated. Thanks again and I am glad I have found an avenue to express my fears and concerns.

Comment by Judith on March 3, 2013 at 6:11pm: Hi Liz

I had double vision, headaches and concentration problems pre intervention. I'd stopped being able to do sudoku! Things got much worse at the time of my balloon occlusion test and worse again with the procedure. I had a 3 cm giant aneurysm of the carotid artery in the cavernous sinus. The procedure was to block off the feeder artery and fill the aneurysm with coils. No stent or flow diverter. Balloons in the artery to stop flow. The blood supply to the right side of my brain is now from the left carotid and the basilar artery.

The procedure cause pain due to irritation of the trigeminal nerve and I also get migraine like headaches which I never got before. The double vision is much improved, the trigeminal pain controlled fairly well with amitriptylline and I get the migraine like headaches only about once every 3 weeks, always in the middle of the night. I now have symptoms of an 'acquired brain injury'- fatigue, memory difficulties, attention problems and a few other things. Comprehension of the written and spoken word is often hard. I can now do all the usual things of life, except my intellectual job, though can only do anything that means concentration/thinking/taking in lots of information for 1/2 to an hour before getting very tired.

Over all I am in a much better situation than I was pre treatment. I wasn't even able to drive or cope with shopping or crowded places at that point. Also my occupational ill health pension should be reasonable generous so my early retirement won't be too much of a problem financially. All in all a pretty good outcome. Though not back to 'normal' yet.

Judith