My Story and a couple of questions

I am 49 years old and live alone. On April 26, 2013, I was getting ready for bed. I had just set my alarm clock, and the next thing I knew I was waking up on the floor, very weak. I pulled myself up onto the bed, and called 911. I was probably unconscious for a minute or two, based on the clock. My strength returned, and I was able to get myself into the stretcher when the ambulance arrived.

After various tests, I was told I had a ruptured brain aneurysm. The aneurysm was 3mm in size. I was taken to a stroke center, and a surgeon was called to operate (coiling). The first couple days afterwards I was very tired, and slept the whole time except when meals were brought. I also had an extremely stiff neck, to the point where sitting up was a big chore. But that went away in a couple days. I gradually was able to stay awake more. I browsed the web on my phone, and even kept my boss up to date on my condition and talked to my elderly father (who lives in another state) by phone. I remained in the ICU for two weeks, then was moved to a regular hospital room for another 6 days before I was discharged.

There had been a problem with my upper leg where the surgery was done from. The blood had kept flowing and may leg was bruised so bad it looked like it had been crushed. The doctors had to do a small procedure to stop the blood flow and bruising. So I had to walk with a cane at first. But that rapidly improved. I was used to walking about 6 miles a day before my surgery. I got rid of my cane within a few days, and was walking a mile or two (though slowly) within a couple weeks. Although the keppra I was on made me tired, it seemed my brain was functioning fine other than that. I enjoyed listening to music, and even working doing some electronics stuff (a hobby). I was not allowed to drive, but was able to work remotely from home, and soon was working almost full-time.

The doctor was having me slowly taper off the keppra. Right about the time I got to the end of my taper (late June), it seems the problems started. I started getting a bunch of anxiety. When I was allowed to drive and started going into work, if someone else was talking anywhere nearby it was impossible for me to concentrate. I started having issues with insomnia and depression as well. I do have a past history of multiple depression episodes, though I had not had one since 2001 (when I was permanently put on a low dose of prozac). I assumed that the anxiety and insomnia were just part of the depressions I have had in the past. I did not do any research on brain aneurysms other than what the doctor told me, since that was in the past and I didn't want to scare myself anymore. I instead concentrated on learning to control depression and anxiety. But insomnia was still a problem, so my PCP doctor prescribed 0.5mg of klonopin at bedtime in August (I had taken this drug for a short period years earlier while starting on prozac).

The klonopin helped with sleep for a few weeks, but then started to lose effectiveness. In addition, I started getting a lot of anxiety in the late afternoons, sometimes almost to the point of panic attacks, and my depression worsened. I couldn't figure out why I kept getting worse. I did some research online, and eventually realized that had become addicted to the klonopin, and was having inter-dose withdrawal symptoms. I did quite a bit of research to learn how to taper off. With my doctor's approval, I began tapering off the klonopin 1/4 of my dose per month in mid-November. The anxiety would be worse when I made a dose cut. But as time went on, the anxiety was definitely lessening, and I was also able to think more clearly (something the klonopin was affecting as well). I completed my klonopin taper in mid-February. Though the insomnia and anxiety got worse for a while after that, I was able to tolerate it, and my thinking was clearer and less depression.

Since the aneurysm was treated, I had 2 CT scans and an MRI scan at several month intervals as per my surgeon's schedule. The last was in October. My surgeon said he was happy with each scan. He said he wanted to see me again in March, to schedule an angiogram, which he called the "gold standard" at around a year since the surgery.

This brings me to my first question. I saw my surgeon last week. He said two things that greatly disturbed me. First, in addition to an angiogram, the doctor said I needed to be prepared for some additional coiling if necessary based on the angiogram. Per my surgeon, there are risks of serious complications from this procedure (several percent). However, he said if I didn't allow for more coiling I would have a several percent risk of another bleed per year, and that would be extremely serious (possibly fatal). I asked him what he thought the chance was that I would in fact need coiling again, and he said he refused to speculate on that. I am curious if anyone else has been in this situation before (facing possible additional coiling). I wonder why he thinks I may need this. Maybe he is seeing something on the scans but does not want to alarm me?

The second thing that disturbed me brings me to my second question, which has to do with the anxiety, depression, and difficulty concentrating. I assumed these were psychological issues, especially given my past history of anxiety and depression. Another thing that makes me think that they are psychological instead of organic is the fact that they wax and wane over time. I'll have days where I sleep normally and am able to concentrate pretty much like my "old self" and with very little depression. On bad days though, I still sometimes sleep only an hour or two at night, have difficulty concentrating, and experience significant depression symptoms. My surgeon said he thought that was due to the aneurysm itself, despite the way the symptoms wax and wane. Assuming it is in fact the effects of the aneurysm itself, what mechanism causes the waxing and waning of symptoms? The thing that really disturbs me is that he said the anxiety and depression are likely caused by the aneurysm, and that they "may or may not" improve with time. He mentioned that I am "only" a year out, so its to hard to tell what will happen.

Based on needing surgery again next month, and the fact that my symptoms may not be just psychological, I am now doing more research on ruptured aneurysms online. That is why I have decided to join this support group. I look forward to giving and receiving answers and support here.

Frank

Hi Frank,
I’m sorry to hear that you may need additional coiling, you are not alone with that diagnosis. Unfortunately I can’t answer your questions; but I can tell you that a therapist who specializes in head trauma may be available to you. Your Neurologist should be able to refer you to someone. You anxiety is 100 percent normal given the circumstances; but don’t accept it as a necessary way to live. Forget your PCP, see a therapist who is familiar with brain trauma. I too have had anxiety and depression prior to my rupture, and it’s been a struggle to accept that this condition could make those worse. I wouldn’t worry about the “why” of these symptoms occurring, but instead focus on treatment so you can get some rest. Good luck to you.

Frank...you have an impressive intro here...welcome...

(w)could you share the artery/segment of your aneurysm? At 3mm, few rupture...I knew some of us w/4 to 6mm were internal carotid artery (ICA) and at least one of them was MCA @ 4mm...

Recently, I have suggested to others to research: limbic system...some article (I failed to note) states that limbic is often referred to as our "emotion brain"... I did note the cortices (whatever proper term) the amygdala, thalamus, hypothalamus, hippocampus and whatever else...down to the pituitary...

The pituitary is at the base of the sphenoid bone which also is our eye sockets...and, also has the hole thru which our internal carotid arteries travel up the neck into the brain...

I only suggest others do their research to develop their questions for their doctors...Offhand I do not know if limbic is listed in the glossary of this BAF site...I should check it out!

Again, welcome...please keep us updated...and, prayers for your best diagnosis and results...

Pat

Hi! Sounds like all in all, you've made a good physical recovery but need some help psychologically. I agree with the advice to find a good therapist who specializes in brain injuries. I'm a newby...mine ruptured this past January but from what I've read, recoiling is fairly common. Mine couldn't be coiled so I had a PED inserted. I've read that alot of previously coiled patients are getting the PED placed to hold the coils in.

Regarding the anxiety and depression....I too have suffered from this prior to the rupture and remain on 100 mg Zoloft. I've also read that SSRI's cause aneurisms.....it all gets really frustrating so I try not to read so much or learn to much about my aneurism (I barely know where in my brain in occurred much less the size....and I want to keep it that way). I admire folks who research and learn about their conditions but for me personally I think it wouldn't be therapeutic to do so. There's just so much that the "experts" don't know and I'm sure we all are guinea pigs to some extent. I DO know that anxiety/depression is VERY common after ruptures. I'm impressed with your physical recovery. I'd suggest concentrating on that and, again, finding a therapist who specializes in brain injuries. I really think a lot of times the surgeons know the "logistics" but have no clue about the emotional fall out! Try not to psych yourself out....if you had anxiety and depression before, I'd tend to think it has little to do with what happened organically and more to do with a simple exacerbation of a condition you already had. Hope this helps. Remember the strides that you HAVE made and how much worse it could be! Chin up! :0)

Sandy...

Without a doubt, we each have to know what is right for each of us...

Based on Frank's intro...anticipate he can quickly research...

W/info provided...it gives everyone their own choice to research or not...whatever keeps others at their comfort level... If data is not available, it limits choice...or requires tremendous more research to get there...

Hi Pat,

Thank you (as well as Sarge and Sandy) for the replies.

My surgeon did comment that at 3mm, most aneurysms do not rupture. He said that is the reason it has to be treated aggressively. I have none of the usual risk factors for a ruptured aneurysm. I don't smoke, drink excessively, or do drugs. My blood pressure and weight are within the normal ranges (though weight is at the high end of the normal healthy range). However, my mother did have a ruptured brain aneurysm many years ago when I was a small child (she was in her late 30's at the time).

I do not know the exact location. I do have the CDs from the CT and MRI scans, and have looked at them. The aneurysm is on the right side of the brain, towards the back, but just in front of my ear. I can provide more information if you tell me what I need to look for on the scans.

I have had follow-up appointments with both the surgeon and the neurologist who was involved with the surgery. The surgeon has always commented that the anxiety/depression are "typical" symptoms after a ruptured aneurysm. He said something to the effect of "If you never had anxiety/depression before, it often develops afterwards. If you did have it before, it often becomes worse". The neurologist, on the other hand, has always emphasized that the aneurysm is not in the part of the brain that controls emotions. He seems surprised at the anxiety/depression symptoms and always tells me I appear to be functioning fine to him and he thinks the anxiety/depression should likely go away "any time now".

I did read that, regardless of the location of the aneurysm, the brain can be affected by fluid pressure resulting from the aneurysm. Right before I left the ICU, I had an incident where I became confused and lost consciousness while changing my hospital clothes. They immediately sent me for a scan, and determined that I needed to have a spinal tap to relieve some fluid pressure that had built up. The problem did not recur.

Another thing that is a bit odd is that I have never had severe headaches. A few weeks before the aneurysm, I did have a mild but persistent headache, and I kept taking aspirin (normal dose) and wondering why it didn't go away. I thought it was odd, but was not overly concerned. It had gone away by the night of my aneurysm. My surgeon is always asking me about headache symptoms but I have had only one or two brief, minor headaches (probably stress-related) since the aneurysm.

Frank

Frank,

I'm curious.....do you or your mother have polycystic kidney disease or mitral valve prolapse? I'm asking to gain insight into my own case, not to suggest anything in yours. There seems to be a connection but neither of my parents have had aneurysms so I'm wondering if genetic testing (for my kids' sakes) is worthwhile. Anyway, because you said your mother also suffered from an aneurysm, there seems to be a hereditary component in your case so I'm curious if either of you suffer from the other two conditions.

Frank...thank you for your response...your mother's must have been a shock to you as a small child; it is a shock to anyone of any age.

Many of us did not, do not have, the suggested causes of an aneurysm; I was 61 when mine ruptured...others range from 21 to older than me...and a small percentage of children.

Probably quickest for you to call your doc's office and ask them for artery/segment. The BAF main pages have diagrams of the base of the arteries...that will make it easier for you to track it...It can all be found in any search...

I found "limbic" when I was searching hippocampus...it drives the "learning to long-term-memory"...too long a story now...

Some others and I have discussed if there is a general location of genetic aneurysms; no, mine is not genetic...just know several who are...A local friend I met thru a mutual friend; classmate of mine who knew of mine from a reunion function...

I suggest again you may want to pull up the limbic data...I have become so surprised that our "emotion brain", the limbic, has not readily been explained to us; and, I did a quick scan of the BAF Glossary which does not list limbic...as my usual memory blank, I did not think to check if any of the cortices are listed...

After researching limbic and/or medial temporal lobe, I can only agree with your neurologist...you may want to address the access from/to an aneurysm w/your neurologist.

Some members have noted PTSD which seems fairly logical...because that term is used w/those who have had horrendous impacts...tho they did not have intracranial impacts.

In my research of med suppliers' applications to/approval by the FDA on delivery of equipment to deliver the devices does not specifically address issues like the access.

When devices, i.e. coils, stents...are delivered...they begin in the groin...w/truly a lot of distance to reach the brain...their first access into the brain...thru the sphenoid...past the pituitary, likely into the limbic area...because the pituitary is connected to the hypothalamus.

Always remember I have no expertise...just my limited interpretation of data...

I have also been a promoter of two books in the BAF main site...One by a Dr. Nussbaum, the other by Dr. Spetzler...I have not recently checked for any other new ones...

You've been blessed not having headaches...those, like everything else, vary w/many of us...

Pat

Again Welcome and Thank you for sharing..~ Colleen

Hi Sandy,

Hi Sandy,

My mother had neither as far as we were aware of. She died in 1997 of colon cancer (age 66). I do not have either condition, or at least it has never been diagnosed (and I've always gotten regular checkups). I was diagnosed as being hypothyroid in 1990, and have been on synthetic thyroid (generally around 100mcg) since then.

Frank

Hi Frank. I have Polycystic kidney disease and also 2 brain aneurysms. It most surely is connected to PKD as it was passed to me from my Mother who sadly died of a brain bleed at 57. I’ve always known about the PKD but this has thrown me completely and I feel so well. Regards

Hi Pat,

Had an appointment with the neurologist today.

He says that my aneurysm is located on the "right posterior communicating artery" (PCOM). He says this is a fairly common location.

Frank

thanks for update...mine is left PCOM

Hi Pat,

I did a little research and it appears that coiled aneurysms in PCOM area tend to be more prone to needing re-coiling than those in other areas. I am curious if you had to have any re-coiling done? And if so, how it went. Also do you still regularly get angiograms?

Frank

Frank...

I have not gotten any re-coiling...far too long a story... for here and now...

Interesting that you found some updated stat data...As far as I know...none of those types of stats are provided to us...before/during the marketing of the minimally invasive decision process for patients... If you have time...let me know your research provider w/those stats..

Hi Frank,

What a story! In regards to having to have additional coils added to your aneurysm, this is not uncommon and generally occurs in the first 2 years post coiling. My neurosurgeon explained it like this: you build a house and it's generally common that some settling will occur. The same thing happens with coils placed inside an aneurysm. I am undergoing my 3rd angiogram in a year a week from tomorrow. My first was when my basilar tip aneurysm ruptured on April 5th, 2013. Coiling was really my only option due to the location of my aneurysm. The basilar artery is in the back of the brain, running up the brain stem and is very deep within the brain itself. Clipping can be done but at very high risk. Poor recovery and/or death are pretty much a given when clipping a ruptured basilar tip annie. My maternal grandmother died after clipping about 20 years ago for an aneurysm in the same general area.

My neurosurgeon does both an MRA and angiogram at 6 month intervals for the first year after coiling to ensure that the coil is fine. I had some minor compaction on angiogram #2 in October, but not enough that I needed anything more done at the time. Angiogram is the gold standard for monitoring, however after a period where the annie is going fine, I will eventually only have to have MRA's. My latest MRA seems to show further compaction of my coils, however my neurosurgeon thinks that I may not have to have stent assisted coiling done next week. I am starting Plavix again, just in case.

As for the anxiety/depression, I can't really speak to that from a personal perspective since I haven't experienced either post rupture. I have almost no memory of the rupture and subsequent days in the ICU and rehab- about 25 days gone. While that annoys me, I haven't suffered from any psychological issues because of it. I will have to say that I did 6 weeks of intensive outpatient rehab in a rehab facility that specializes in neuro rehab. I had speech, OT, PT and a psychologist that I saw 2 days a week. It was like being in school. I went in at 9am, had 'classes' scheduled throughout the day with each of the disciplines and left at 3:15. I give them a lot of the credit for my rapid recovery!

I hope you find the answers you're looking for. This site is a good starting place and a good place to find support since most of us have "been there done that" in some manner :)

Mary

Here is one:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3011114/

Frank

Frank...thanks so much...each of these searches can vary so much by our search words...

Interesting, too...one of the named docs treated a peer of mine some time back....she just cherished his quality... interesting what drives our (my?)memory... will keep you posted after I compare the minimally invasive procedure(s) done on me...

Let's continue to share results...hopefully others will, too...

Pat

Thanks for the detailed reply, Mary! A lot of good information there.

Frank

I just wanted to provide some updates.

My surgery is scheduled for April 9. I have to be at the hospital at 6AM. They will do an angiogram, and if needed, add more coils. I am told I will be unable to drive for a couple of weeks, so have stocked up on groceries and other essentials.

In the process of getting approval for the surgery, I saw several doctors. When I explained to the neurologist that I am still experiencing frequent bouts of insomnia and depression, he referred me to a neuropsychiatrist. However, there is no opening until late next month. My primary care doctor as well thinks I should wean off the prozac and try a different antidepressant (I have been on prozac for 14 years, and had no significant anxiety or depression since starting until a couple months after my aneurysm). But he says I should do nothing until recovery is complete from the surgery, thus he is going to let the psychiatrist decide what to do at my appointment in May. I've read a lot of horror stories about poly-drugging for psychiatric difficulties, and I don't want to end up on a cocktail of psychiatric drugs that makes we worse or disabled. I'm not adverse to trying other antidepressants, as long as it is one at a time. When I take the Burns anxiety and depression inventories, I always end up with "mild" scores for anxiety and depression. But I have major difficulty enjoying things I used to enjoy, and have fairly serious insomnia. Occasionally though, I do have good days where I seem almost back to normal.

Due to having used up all my sick time (and last year using up all my vacation time as well for my illness, doctor appointments, etc.), I will be reducing my work hours to 32 a week when I go back to work after my surgery. My boss is not real happy about this but he understands the circumstances. I would really rather work 40 hours a week but do less stressful work, but that is not an option at my current job. This should allow me the time I need for doctor's appointments and still leave me some vacation time. I have not been away in 2 years. My father is 81 years old and may not be around much longer, so I at least want to see him. I have other relatives and friends I would like to visit as well. I do have long-term disability insurance with full salary coverage, although that would not kick in for a couple months. Fortunately, I have a good amount of savings and investment income.

The nurse who is managing my case for my insurance company likes the idea of me reducing my stress by working less hours (my job is moderately stressful). However, she cautioned that I avoid using the extra time to think about my illness. What I think I might do is to write a book about my experience with the brain aneurysm, and all the things I have gone through during my recovery. This could help me come to terms with the experience, since I don't go into details about my experience with friends. I'm thinking an E-book with about say 200 pages, costing a few dollars, with all proceeds going to some sort of research charity for brain aneurysm treatment.

Frank