Staying positive within fear

General
41

Hi Mike,

I believe seeking out answers and experiences of others, as well as a therapist if needed are all part of the emotional healing process. In my experience, my physical scars healed faster than the emotional scars. It took me, many years to say that I couldn’t heal alone. Kind of like that saying… It takes a village to raise a child… Lol… I think it takes your experience, reading others, talking & sharing your experiences… Fears & thoughts… Finding a balance, realizing it involves time as well to heal & overcome all.

I mourned for my old self, I was angry, felt helpless, had emotional breaks, erratic fears… I believe all of the emotions we experience after a rupture or hemorrhage… They are all normal.

After almost 11 years post SAH, 5 years since finding BA #1, 3 months since finding BA #2, and 1 week finding BA #3 and having a pipeline placed across all 3 Unruptured Aneurysms…
I have to say that I am Thankful for this all… I would not be the person I am at this moment, if it was not for all my experiences through this.
I wish you best on your healing journey, take each day as it comes, tell your story, it is therapeutic:) and you may help someone else.

42

I think TIRED is the NEW me!..so I nap, go to bed early…etc etc…

It’s a whole new LIFE in so many ways,for me the hardest is getting some narcissistic family members to understand just how life changing this is!

43

Mike it is perfectly fine to have such anxiety over a re-bleed. I have coils for 10 years. I have had re-coiling twice and finally stents put in. You will have several yearly checkups and angios. Your doctors know exactly what to look for and will take good care of you. You have to learn to trust your body and your pains. I still have an occasional twinge in the general area, but I do not get alarmed. Take your medicine, practice deep breathing, get lots of rest. God Bless you I pray for your continued recovery.

44

Hello Mike, it can be very scary for you and your family after an aneurysm. Know the facts about your particular situation and don't try to compare it to others online who may have different scenarios. The best thing you can do is enjoy life and go to your follow up appointments to ask any questions you may have. You should have a CT Angiogram or other similar procedure within 6 months of the occurrence and then annually after that. It will help put your mind at ease and also identify any issues that may need to be addressed. Hope your recovery is speedy and that you can find peace of mind in your daily activities. Take care.

45

Hi Mike,
I had a SAH from a ruptured aneurysm in November of 2013. I actually suffered two re-bleeds as well. I think time heals all and time certainly helped me deal with my fears. I also tell myself that, now that I’m being monitored yearly - it will never be as bad as it was on the day it ruptured. We are all examples of how life can be cut short and we are all fortunate to have survived. Life is too short to life in fear. Just give yourself time though. Best of luck to you!

46

Mike - please visit our Patient Resources section of our website, you may find some very helpful information there: http://www.bafound.org/patient-resources We also have some great webinars posted on the Educational Resources section, which will give you further insight. Of course, this online Support Group is a wonderful outlet where, as you can see, you will find you are not alone. We wish you all the best in your recovery.

47

Hello Mike, I had a SAH three years ago. The window when rebleeds may occur is a stressful time. Engage in activities that keep your BP down. Eat healthy. Treat yourself with love and respect and be positive and grateful that you are still alive. I too live in a rural setting so I signed up with lumosity to keep my mind active and to rehab. I challenged myself to complete new crochet projects. I taught myself how to knit as part of my rehab. I feared that my brain was not the same and the deficits I incurred would not allow me to return to my profession. It sounds corny but it was crafting that gave me confidence to return to work and allayed fears caused by my brain injury. I could read instructions, understand them and obtain the desired results. What ever interests you have pursue them and use them as ways to mark your progress to full recovery. Don’t rush that process either. I went back to work too early and suffered setbacks and as a result needed to extend further time off. The internet is a great resource for us individuals who have the joy of living in remote areas. Pick something you enjoy and that will give you peace and use that as a yardstick to measure your successes. Be gentle on yourself too. Please keep us posted as to how you progress. Take care. All the best. Your fellow SAH survivor

48

Hi Mike I had a SAH September 2013 with emergency coiling which failed as too dangerous followed by successful coiling 24 hrs later and luckily no rebleeds take your time and best advice i was given was listen to what your body is telling you. Mine was sleep sleep and more sleep. Only down fall I’ve had is dizziness which if I can catch in time is an hr or so laying down. Didn’t return to work for 6 months and then managed only 3 days a week as so tired. Thinking back I did go to see my Dr for various little incidents but think this was for reassurance more than anything else as hospital only wanted to see me 3 months after my SAH and was then discharged. Hope things are going well for you it does get easier honest. Best wishes Karen

49

Dear Mike:

I am sorry for your ruptured aneurysm. I, myself, have not had ruptured aneurysm but to craniotomies to clip 3 aneurysms. The fear was constant before both my surgeries and now I have fear that the fourth one will rupture. I was born with them so over time they got larger. However, the one in the brain stem is encased in bone so the neurosurgeon said it will not bleed into my brain. I still have fear that it will. I know your fear and I understand it. I am currently 5 months post surgery and doing well expect for fatigue and having trouble reading and focusing. I will take a year off work.

50

The internet can be a wonder and a curse. When I first found out what was happening I went home and watching a YouTube video of the surgery. Dumbest thing I ever did in my life! Mike I remember the first few weeks being scared to death of going to sleep. I was terrified I would not wake up. I actually wrote my neurosurgeon an email at 1 in the morning and was shocked when he not only replied but replied with his cell phone number for me to call him. For me to say this is normal will not make it go away, it will only help you know that you are not alone and in about a year you will be telling someone else your stories about what you were going through a month after your surgery. Sometimes I still worry since I have a baby Annie they are still watching but I know that there is nothing more I can do that I am not doing right now. Carol

51

Mike, I had my SAH on July 8, and tomorrow will be 19 weeks since the event. Like you, my entire experience was one best-case-scenario after the next, so I know what a miracle you must feel you are.

I have had a headache the last few days myself, and I am afraid what it might mean. Should I go to the hospital? Should I call my neurologist? Is my brain bleeding and am I going to have another stroke?

I've had headaches my whole life, since I was a child, so when I had the SAH I had no reason to think my headache was anything serious -- that is, until I had a seizure.

After a month in the ICU and then a few more spent recuperating at home with family, I also feel like I've lost some independence. My body is still reacting and adjusting to all the medication I was on, and as a result I think I have an imbalance of bacteria in my small intestine, which has me feeling very uncomfortable... miserable, in fact. I want to crawl out of my skin.

It is a very small group of people that survive what we have, and best comfort I can provide you is to tell you that you are not alone. I feel fear at this very moment, about the ache in my head, which only compounds the tension in my belly, and the sadness of how far away my old life, pre-SAH, feels to me. It is a blessing and a curse to have made a full recovery without obvious long-term deficits; I look entirely normal and feel quite normal... until I don't. But even then, only I know when that happens.

I have taken up mindfulness meditation, but find that the body scans cause my body and head to ache, so maybe I am not ready yet and have tried to be mindful in other ways (and sadly, am not doing so well!) but you must do what feels right for you to find peace and calm, and a safe place to heal.

Wishing you the very best,

Lauren

52

Hi Mike, I am in Australia so I know about distances to travel to get specialist assistance. It is very stressful those first few months after your aneurysm. How was your treated, craniotomy, coils, PED (stent). Try not to stress as I am sure everything will be fine, I had PED put in 3.5 years ago and all is fine, I go once a year for a scan & check up and everything has been fine other than a bit if vertigo every now & then. There is a group in aus. called Aneurysm Support Australia (aussie annies). Which is a great group as well, you might even make contact with someone near you. Hope you are starting to feel a bit more relaxed.

53

Hi Lynn, It was coiled two days after the rupture which was October 7th. Is that a Facebook group you mention Lynn? I found a Facebook group of same name but I can’t find anyway to post, chat or otherwise contact. I’m not great with Facebook so maybe I’m missing something. I wanted to ask about the PED. Do you happen to know what makes a neurointerventionist choose PED over coil? I was just curious as from a “physical” point of view a PED seems so obvious and a coil doesn’t.

In regards to the other comments about Dr Google in the discussion. I fear is too late to sack him as I’ve past the point of no return. I think I have literally filled my desktop with Dr Google PDF’s from medical texts!! And my iPhone home screen is pages full of bookmarks ! It’s ok my mind works that way. I just get information hungry and will have to deal with the consequences which seems to be scaring myself silly.

As for my massive fear of rebleed. Can’t seem to put that one away. Again I’ll just have to live with it.

54

Mike it is FB page but it is a closed group, you have to be added by a friend, add me as a friend on this site & I will chat with you in Private about it. I will probably have to add you as a FB friend & invite you to join, or ask admin to add you.
I still log into bafsupport as I still find it very helpful. Fatigue is normal, I got tired very quickly for a long time.
PED are used for wide necked aneurysms, mine was pretty big 14mm & I think the neck or opening was 8mm & was calcified, coils will not stay in anything with a wide neck. I did not have a rupture, coils cause the bleed to clot which stops the bleed. Sometimes a stent is placed over the coils to keep them in place. Hope this helps.

55

"I just get information hungry and will have to deal with the consequences which seems to be scaring myself silly."

I honestly believe it's best to get that information from your doctors though because they know your exact circumstances and are the best ones to advise you. I had the greatest interventionist and his demeanor was so calm it always made me feel like there was nothing to worry about (probably the reason I was prepared to wait 6 months for the second coiling, since I felt if he thought it would be ok, then I had no reason not to trust that, he was the expert. I think if you ring the hospital and explain your fears they may set up an appt with you, or even a phone call with the neuro or interventionist. My understanding is the risk of rebleed is highest in the first few days, and generally occurs in the first couple of weeks if it is going to happen, that may be why they kept you in for two weeks to be sure you wouldn't rebleed before releasing you, but the interventionist or neuro will be able to talk to you about what, if any risk you are at.

56

Hi Mike, congratulations! You’ve survived! I had a craniotomy five years ago and wished I had been able to have a coil…I’m also in Australia. Do you mind if I asked who operated on you? Stay positive :slight_smile:

57

It is interesting to read these replies because it makes me feel so much better. My neurosurgeon did not give me an option of coiling, stating at 52, with no medical problems that my best bet for a long life would be to have a craniotomy. So I have had one at age 32 on one side of my head and at 51 on the other side. He told me this clips are premanent however, I still have fear of developing another one due to the birth defect. He said to stay thin, keep blood pressure low and do my best not to get Type II Diebetes. I too get extremely tired sometimes but I look like I am fine after 5 months of surgery. He only shaved 2 inches of my hair from the top of forehead in the hairline all the way to behind the ear. It still hurts alot and I still have headaches occasionally

58

I’m actually confused about who operated but I think his name is Doctor Christoher Lind

59

Hey Mike,

You know, it's quite normal to be very nervous just after a scare like this. I'm a Registered Nurse of over 30 years experience and ,yes, I was scared afterwards. I had my aneurysm clipped during a craniotomy. It was 10.5 mm in size and was found coincidentally during hospitalisation for a motorcycle accident. And guess what, I've got it's little brother to be looked at next month in a CT Angiogram.

My advice to you, get involved in helping others similarly afflicted. Join forums such as this. Reassure others, keep a diary of your recovery experiences, good and bad, to use as a resource. I can't guarantee that your coiled aneurysm won't leak again, but in all my years working in coronary and general angiography which includes aneurysm repairs, I have never heard of it occurring.

Rest easy, my friend, you have dodged a bullet, and I think you are safe. Just take care of yourself now, eat sensibly, don't smoke or drink alcohol, meditate, exercise, and live.

I wish you all the best.

Mikey

60

Twenty four years ago I to had a ruptured aneurysm....mine was at the basal junction(center of the brain). While I had neuro care near by, the doctors opted to send me four hours away to Boston. The fear you are experiencing is normal. You have had a major life changing experience. Why would you not have some fear? Honestly, most of us still alive and functioning after a rupture are pretty dam lucky. I was on a date when mine happened, and as luck or fate would have it, he was a nurse. My local dr. had studied with the head of neurosurgery at Mass general,more luck. Truthfully it takes luck,love and a lot of hard work to get through this. Now is the time for the hard work. Trust,trust that your doctors did what was needed. Trust that your body has and will continue to respond as it should. Perhaps a mantra....one I use in medical situations is... May my body and doctors work together for success. Sit quietly each day for fifteen minutes(more if you are able). Listen to music and breath. Slow your mind and body down. Why? There is so much going on right now. Your body,spirit,emotions all need time to be still. I ended up in the hospital for 60days. Everything that could go wrong did. In other words I had lots of bad luck. When I got home I could not remember how to fold towels or make a sandwich. I had to relearn how to read and write. Believe me I had my moments of fear. Cling to the things you love the most. Practice the things you enjoy doing....slowly these will become the strongest feelings not the fear. I must say, wish I was functioning as you are 29days after my ruptured. You will find changes as you go along this path. You may even find you are different in some ways. But keep this in mind. When you met someone for the first time you are not friends right away. It take time. Take time to get to know the new you. You are not better or worse than before...just different. Breathe....breathe. Gail B.