Brain Aneurysm Support Community

How was / is your recovery after surgery

FOR PEOPLE 15 to 35 years old; 35 to 50 years old ; + 50 years

AGE IS IMPORTANT: This would allow us to establish some statistics on which age group recovers best!


Hello everyone

I have been hiding for a very long time. My surgery was done on October 23rd 2013.

It seemed it went well EXCEPT:

Since then, I suffer full blown depression repetitive episodes, and it became almost chronic

I stay cooped up in my aparment and had cut ties with friends and family

I fight within myself and don't want to meet anybody. Even when i buy food i can't wait to finish and go back home


PHYSICAL PROBLEMS TOO:

Headackes
And especially many feeling of not being able to breathe, with pain in the middle of my chest, like perhaps pleurisy- although i am not sure i know what it is.

Sometimes physical pain in my skull and a feeling like cold water dripping in my brain on the surgery side

I developed also severe allergies and an extreme debilitating fatigue

Last but not the least Memory loss and difficulty concentrating ; Severe sleeping problems, fibromyalgia exacerbated tenfold and very poor immune system that seems to attack my organs, never the same one: a pain here and there, different every day. Since then, It seems my body is completely off balance.

I explain it in one possible way: perhaps the neurons in my brain are now dysfunctional. I think that way also because just after the surgery I developed the shingles.

have So my note here is to find out if any of the people who had had a craniotomy has one or all of these handicaps or after effects surgery.

I am worried. It seems i have another aneurysm on my pericalosal artery but couldn't check because in the country I live tin hey say their equipment for an RMA IS NOT COMPATIBLE WITH MY CLIPS might displace my clips.

Please send me your thoughts and experiences.

Thank you very much

I wish you all the greatest of recoveries

so sorry about all your side effects from surgery. I had my aneurysm clipped 3 years ago and they are watching another on my carotid artery. I think about what happened almost daily. (think about death alot), I know that sounds sick, but I do. I try not to because it can make me depressed. I do have headaches as well. The surgeon said he does not know why. Maybe weather changes, or anxiety, etc, but they do affect my surgery side 90% of the time. But my biggest physical side effect is fatigue or no energy. I was never like that before surgery. I am the same weight as I was, have the same job, although I did take on another day, so I work 6 days now, (I am 56 yrs old), but still, I see people my age with so much more energy. I don't have a desk job, so I am active, I can't figure it out, I still think it's from my craniotomy. People would never know this about me because I don't act any different, but I do feel this way and have these symptoms. I hope you start to feel better soon.

You need to get out of your apartment and enjoy the rest of your life.I just turned 60 and I put those problems behind me. Survived two ruptures. You survived for a reason. Don’t mean to be cold. Take care.JC

Dear JMT,

My clipping surgery was in 1999, and I have been fine since then. I am 75 now, and I seem to be falling a lot. So I appear to have a balance problem. Saw my GP yesterday, and he is going to consult with my neurologist. I have the same problem with clips - my surgeon said the purity of what he used is questionable, so no MRIs for me. I also have an implant in my aorta which also rules out MRIs. Except for the balance problem I am fine. My short term memory is not good, and my concentration is not as good as when I was younger. Otherwise, life goes on. All the best to you.

David Andrus, Hamilton, Ontario, Canada

Have you tried any meds for anxiety? Did you ever think of counseling? It really helps to vent about the changes you are experiencing. I had my annie 4/2009 and it was clipped, Speech was the problem and I did get that back. My behavior has changed and in the past 6 yrs I said some stupid things that I would never have said or done. I still remember everything that I went through prior and after and I still think about it, too often I think. Please, you've overcome a huge health situation. Live your life "one day at a time" and learn to appreciate and enjoy the days. God bless.

I had one in 2009 and I have 3 clips, I also have anxiety that feeling of not being able to breath. That cold dripping feeling went away after about two years. now I get severe headaches when the weather changes and when I’m stressed out I get goose eggs on my forehead. My memory is getting better but I forget alot of little things. I am able to have MRI’s and have had two since 09.

I agree that the cold water dripping feeling does go away. I was coiled in 2011. I understand your depressive episodes, but are you taking any medication for this and speaking to someone? My psychiatrist told me that once the brain is injured in this way, an anti-depressant is usually needed to help you feel normal again. I don't know - I survived a massive rupture - this might be different. I'm so sorry for all your suffering and worrying. (By the way, I live in the middle of "nowhere" and all of my extended family lives on the east coast of the US) I am 59.

You arent alone-- headaches, fatigue, problems sleeping, anxiety, memory loss–those are classic aneurysm survivor symptoms. Post traumatic stress disorder can occur, and you might want to seek resources for that. It doesnt help to spend so much of your energy looking for problems. The brain does heal somewhat with stimulation, but you have to work at it. The risks of rebleeding are not all that high and you have control over some of the risk by not smoking, no heavy lifting or straining, and treating any high blood pressure. As I see it, I had 2 choices: enjoying the life I still had as best as possible, or filling my life with worry and sadness. I wish you peace in adjusting to your new “normal” and that you find joy in surviving. We have lost alot, but we have been given the gift of days that many others with aneurysms haven’t been given, because they died or never got out of hospitals. Reach out for help!

Did you know that the actress Sharon Stone, the folk musician Joni Mitchell, and most recently the Buddhist Master Thich Nhat Hanh are all ruptured aneurysm survivors? You are not alone.

Trust me we all have the same issues. I have to force myself to eat n sleep. I stay at home n never seam to want to leave. I guess as the other said were lucky to still be on earth. Need to find something to make us happy

Hello
my Annie Was clipped on 2/28/15. I have had depression since childhood and I’m 50 now. My depression did return for a while after my aneurysm, but I stuck it out and it lifted by itself without and med changes. So hang in there or maybe you need an antigepressant. I was also extremely tired, but that has pretty much gone too
I wish you good luck and Bless you

I had a craniotomy 9/26/13 to clip an unruptured aneurysm. I'm sorry for all the distress you're going through but glad you've reached out to others who understand. I've had the fatigue, the dizziness, the isolation, the pain in chest. In my case the fatigue improved over time and what didn't was due to a lack of Vitamin D which my Doctor found through routine blood tests. The dizziness improved with therapy and activity. The pain in chest was the start of panic attacks which thankfully I recognized and can handle on my own right now. The self-prescribed isolation. I think I started hiding out because I didn't feel like I 'belonged' anywhere...everything was too loud, fast, confusing. I stumble(d) over words and felt self conscious. But I forced myself to go out a little at a time. I ignored the conversations in my head and kept telling myself 'you're alive...you get to breathe...you get to smile'. Of course that usually led to my walking around with a silly grin on my face. Pair that with a partially swollen eye and missing hair and I'm sure I looked amusing. The Doctor told me to learn a new language and play an instrument. I realized he said this because the brain needs the exercise. I like to think it keeps the brain engaged in something other than fighting with itself. Play solitaire, or puzzles, maybe join a book club, something that eases you back into the world. Don't lock yourself away. You're a beautiful person who survived an illness that takes so many.

Allo,

Tu parles Français? Je suis une québecoise du Canada qui vit au É-U.

Back to English...

I had clipping surgery (of 5 aneurysms) a little over a year ago here in the USA. I suffered from depression on and off for several months. It is very traumatic to have your skull opened, and your brains moved around, etc. I am also insomniac since my surgery. My brain cannot seem to be able to shut down by itself now. It really upset me at first, but God grace me strength to accept this change. With medicine and natural supplements, I manage to get acceptable sleep. Maybe medicine or natural supplements to help your serotonin levels could make a difference. Hope you can try to include people in your life again. Try to focus on the positive. My faith in God, His love for me, revealed in the Bible, in Jesus who died for my sins, and is risen again, has helped me in my darkest hours. I recommend Him to you.

1 Like

BONJOUR NINA:

Oui Nina, je suis Francaise. Merci de ton email. You had 5 aneurysms ? were they unruptured ?

Where did you have your surgery ? I live in France, and I do not trust the socialist system here and anyway they really do nothing. I cannot even have an RMA because my clips were put on in the US and RMA equipment in France are not compatible and there is a risk of displacement they say here in Paris.

The funny thing is that I have these symptoms, especially insomnia, huge fatigue, (I had to go out today and I cannot move feeling so dizzy), etc, since I came back, i.e. October 2014 - I did travel for 4 months besides USA in a hot country from July 2nd to October 2014 and I felt very good. Also anxiety, and all the things you feel yourself really started upon my return. I do have fibromyalgia, and it is the same: The crisis are more frequent and more disabling since I came back. So this is why I tend to thing that perhaps the weather and environment can have an impact on your recovery.

You are lucky to be a believer, I am not very much, at least I don't know if I am, but I don't give a lot of thoughts about it. I am afraid of anti depressive drugs because I don't want to be another person, of not controlling my life. Some of these drugs also makes you very excited, and also you have to take them always. Finally I tried the natural supplement PH5 something (I forgot the real name) and it made me very sick.

This is why I am taking nothing, and I just survive. I know I might have to leave France and I think if I did, I'll feel better. But it's not easy and to tell you the truth, Iam not that courageous anymore. I used to be.



Nina said:

Allo,

Tu parles Français? Je suis une québecoise du Canada qui vit au É-U.

Back to English...

I had clipping surgery (of 5 aneurysms) a little over a year ago here in the USA. I suffered from depression on and off for several months. It is very traumatic to have your skull opened, and your brains moved around, etc. I am also insomniac since my surgery. My brain cannot seem to be able to shut down by itself now. It really upset me at first, but God grace me strength to accept this change. With medicine and natural supplements, I manage to get acceptable sleep. Maybe medicine or natural supplements to help your serotonin levels could make a difference. Hope you can try to include people in your life again. Try to focus on the positive. My faith in God, His love for me, revealed in the Bible, in Jesus who died for my sins, and is risen again, has helped me in my darkest hours. I recommend Him to you.

Dear Harlylena:

Thank you very much for your support. Indeed, yes we have the same symptoms, although mine started to be more debilitating upon my return to France. I was operated in the USA. I do have fibromyalgia, and I know that when something attacks my body - like the surgery - my fibromyalgia gets crazy. This is why I didn't know if my symptoms were from the Fibro or the craniotomy or both. My activity is at least 2/3 less than usual, and I am behind for many things I have to do, even my housekeeping.

In France, health care is far from what the world thinks it is, being social and healthcare for all ! Yes, but very bad healthcare, and they don't treat you, don't take enough time for you and work more like in a factory chain than a person to person commitment. Doctors here just prescribe nothing, this I believe, to save France's money - they must have limitations: I am sure they do

This is why I do nothing to improve my problems, or the only thing I want to do is find out what to tell the doctors and force them to give me the tests and the medicine to try. They might prescribe them, but they know nothing about craniotomy, because they don't do it here: Only endovascular treatment which is not 100% safe nor long term treatment - at least in France I know some people who had to redo the treatment sometimes 5 times.

Who did you see to help you ? what kind of doctor ? neurologist ?

Thank you very much for taking the time to write to me

All the best, and my heart is with you and I hope you will overcome all this difficult time.

Michele



harlylena said:

I had a craniotomy 9/26/13 to clip an unruptured aneurysm. I'm sorry for all the distress you're going through but glad you've reached out to others who understand. I've had the fatigue, the dizziness, the isolation, the pain in chest. In my case the fatigue improved over time and what didn't was due to a lack of Vitamin D which my Doctor found through routine blood tests. The dizziness improved with therapy and activity. The pain in chest was the start of panic attacks which thankfully I recognized and can handle on my own right now. The self-prescribed isolation. I think I started hiding out because I didn't feel like I 'belonged' anywhere...everything was too loud, fast, confusing. I stumble(d) over words and felt self conscious. But I forced myself to go out a little at a time. I ignored the conversations in my head and kept telling myself 'you're alive...you get to breathe...you get to smile'. Of course that usually led to my walking around with a silly grin on my face. Pair that with a partially swollen eye and missing hair and I'm sure I looked amusing. The Doctor told me to learn a new language and play an instrument. I realized he said this because the brain needs the exercise. I like to think it keeps the brain engaged in something other than fighting with itself. Play solitaire, or puzzles, maybe join a book club, something that eases you back into the world. Don't lock yourself away. You're a beautiful person who survived an illness that takes so many.

Salut Michele,

A pleasure to get your reply. I had my surgery at a university hospital here in the U.S. My aneurysms (we only knew of 3 previous to surgery) were unruptured. I had known for 5 years I had them. A neurosurgery professor, who comes highly rated, did my clipping. He performs over 200 surgeries a year. I went into surgery with a good amount of confidence. Now, post surgery, I understand that things (your brain) are never exactly the same after this type of surgery, even if surgery was successful. We all have to accept the new self. It takes time.

If you had your surgery here in the U.S., they most likely put it titanium clips, so I don't understand why you couldn't have an MRI in France, since titanium doesn't respond like other metals.

Do you have a family doctor, or primary care physician with whom you could (or have) discuss your insomnia, anxiety, etc.? When my insomnia improved, my depression did too. If you could sleep more or better, that might be a huge help. A natural product I recommend for insomnia/depression is Kavinace Ultra PM, sold here in the U.S. between $ 35-50/a month on Ebay, among other suppliers. This product has melatonine in it, and apparently a more effective kind of GABA than found in seperate GABA supplements on the market. Also a very small dose of anti-anxiety med (a benzo, .5 mg) can help the brain shut down for sleep. Different things work for different people.

As for faith, I got it from the Bible. In French, I recommend the Ostervald version. In English, the King James Bible. This blessed book has helped me understand, where I come from, why I am here, where I'm going, and how to get there, and how to live in the meantime, and much more. I couldn't do without it.

Passe une bonne après-midi et soirée. Sache que Dieu t'aime. Il l'a montré par la croix. Nous pouvons douter de bien des choses dans cette vie, mais de son amour pour nous, il n'y a aucun doute, même si nos circonstances sont difficiles. Les tempêtes passent, et le soleil revient.


JMT said:

BONJOUR NINA:

Oui Nina, je suis Francaise. Merci de ton email. You had 5 aneurysms ? were they unruptured ?

Where did you have your surgery ? I live in France, and I do not trust the socialist system here and anyway they really do nothing. I cannot even have an RMA because my clips were put on in the US and RMA equipment in France are not compatible and there is a risk of displacement they say here in Paris.

The funny thing is that I have these symptoms, especially insomnia, huge fatigue, (I had to go out today and I cannot move feeling so dizzy), etc, since I came back, i.e. October 2014 - I did travel for 4 months besides USA in a hot country from July 2nd to October 2014 and I felt very good. Also anxiety, and all the things you feel yourself really started upon my return. I do have fibromyalgia, and it is the same: The crisis are more frequent and more disabling since I came back. So this is why I tend to thing that perhaps the weather and environment can have an impact on your recovery.

You are lucky to be a believer, I am not very much, at least I don't know if I am, but I don't give a lot of thoughts about it. I am afraid of anti depressive drugs because I don't want to be another person, of not controlling my life. Some of these drugs also makes you very excited, and also you have to take them always. Finally I tried the natural supplement PH5 something (I forgot the real name) and it made me very sick.

This is why I am taking nothing, and I just survive. I know I might have to leave France and I think if I did, I'll feel better. But it's not easy and to tell you the truth, Iam not that courageous anymore. I used to be.



Nina said:

Allo,

Tu parles Français? Je suis une québecoise du Canada qui vit au É-U.

Back to English...

I had clipping surgery (of 5 aneurysms) a little over a year ago here in the USA. I suffered from depression on and off for several months. It is very traumatic to have your skull opened, and your brains moved around, etc. I am also insomniac since my surgery. My brain cannot seem to be able to shut down by itself now. It really upset me at first, but God grace me strength to accept this change. With medicine and natural supplements, I manage to get acceptable sleep. Maybe medicine or natural supplements to help your serotonin levels could make a difference. Hope you can try to include people in your life again. Try to focus on the positive. My faith in God, His love for me, revealed in the Bible, in Jesus who died for my sins, and is risen again, has helped me in my darkest hours. I recommend Him to you.


Hello, Nina:

I wonder if we couldn't chat either here or on Skype.

Yes I had my surgery in the US. It's a long story. But that is what they say in France and they want to know the brand of my clipps and the model number, which I don't think I have.

I did try Melatonine - not this brand, but another I bought in the UK through Amazon, and it really made me sick. But I am very sensitive to medecine. Even my neuro surgeon got scared after they put morphine in my veins. I jumped all away up, almost to the ceiling !

And I do take time to time something called in france: Lexomil to calm me down. But sometimes it doesn't work. Zolpidem makes me depressed the next day.

But today for example, my dizziness was at its highest level, although I slept fairly well last night. So it seems, there is no reason really.

Do you have the impression that you cannot breather and like if a hand compressed your chest, in the middle of your breast ? So what do your doctors say ? That it is normal ? Did they tell you how long it would last ? I think we need to live a life totally free of stress, and for me in Paris, it's impossible because people are nasty, the government too overpowering, too much noise, etc.

This is why I want to move.

But thank you for your nice wishes. I do have a Bible. I am Jewish by the way, not a practicing Jew, but with a strong Jewish identity. I will try to read it and spend some time thinking about it.

Have a wonderful day and God Bless you

Michele


Nina said:

Salut Michele,

A pleasure to get your reply. I had my surgery at a university hospital here in the U.S. My aneurysms (we only knew of 3 previous to surgery) were unruptured. I had known for 5 years I had them. A neurosurgery professor, who comes highly rated, did my clipping. He performs over 200 surgeries a year. I went into surgery with a good amount of confidence. Now, post surgery, I understand that things (your brain) are never exactly the same after this type of surgery, even if surgery was successful. We all have to accept the new self. It takes time.

If you had your surgery here in the U.S., they most likely put it titanium clips, so I don't understand why you couldn't have an MRI in France, since titanium doesn't respond like other metals.

Do you have a family doctor, or primary care physician with whom you could (or have) discuss your insomnia, anxiety, etc.? When my insomnia improved, my depression did too. If you could sleep more or better, that might be a huge help. A natural product I recommend for insomnia/depression is Kavinace Ultra PM, sold here in the U.S. between $ 35-50/a month on Ebay, among other suppliers. This product has melatonine in it, and apparently a more effective kind of GABA than found in seperate GABA supplements on the market. Also a very small dose of anti-anxiety med (a benzo, .5 mg) can help the brain shut down for sleep. Different things work for different people.

As for faith, I got it from the Bible. In French, I recommend the Ostervald version. In English, the King James Bible. This blessed book has helped me understand, where I come from, why I am here, where I'm going, and how to get there, and how to live in the meantime, and much more. I couldn't do without it.

Passe une bonne après-midi et soirée. Sache que Dieu t'aime. Il l'a montré par la croix. Nous pouvons douter de bien des choses dans cette vie, mais de son amour pour nous, il n'y a aucun doute, même si nos circonstances sont difficiles. Les tempêtes passent, et le soleil revient.


JMT said:

BONJOUR NINA:

Oui Nina, je suis Francaise. Merci de ton email. You had 5 aneurysms ? were they unruptured ?

Where did you have your surgery ? I live in France, and I do not trust the socialist system here and anyway they really do nothing. I cannot even have an RMA because my clips were put on in the US and RMA equipment in France are not compatible and there is a risk of displacement they say here in Paris.

The funny thing is that I have these symptoms, especially insomnia, huge fatigue, (I had to go out today and I cannot move feeling so dizzy), etc, since I came back, i.e. October 2014 - I did travel for 4 months besides USA in a hot country from July 2nd to October 2014 and I felt very good. Also anxiety, and all the things you feel yourself really started upon my return. I do have fibromyalgia, and it is the same: The crisis are more frequent and more disabling since I came back. So this is why I tend to thing that perhaps the weather and environment can have an impact on your recovery.

You are lucky to be a believer, I am not very much, at least I don't know if I am, but I don't give a lot of thoughts about it. I am afraid of anti depressive drugs because I don't want to be another person, of not controlling my life. Some of these drugs also makes you very excited, and also you have to take them always. Finally I tried the natural supplement PH5 something (I forgot the real name) and it made me very sick.

This is why I am taking nothing, and I just survive. I know I might have to leave France and I think if I did, I'll feel better. But it's not easy and to tell you the truth, Iam not that courageous anymore. I used to be.



Nina said:

Allo,

Tu parles Français? Je suis une québecoise du Canada qui vit au É-U.

Back to English...

I had clipping surgery (of 5 aneurysms) a little over a year ago here in the USA. I suffered from depression on and off for several months. It is very traumatic to have your skull opened, and your brains moved around, etc. I am also insomniac since my surgery. My brain cannot seem to be able to shut down by itself now. It really upset me at first, but God grace me strength to accept this change. With medicine and natural supplements, I manage to get acceptable sleep. Maybe medicine or natural supplements to help your serotonin levels could make a difference. Hope you can try to include people in your life again. Try to focus on the positive. My faith in God, His love for me, revealed in the Bible, in Jesus who died for my sins, and is risen again, has helped me in my darkest hours. I recommend Him to you.

Dear Tracy:

Thank you for taking the time to explain what you went through. It does help me to know that others have the same symptoms. Unfortunatly I didn't have an MRA yet to control my clipps or even a possible pericolosal aneurysm. I think I should do it somewhere else than France, possibly Finland !

Wish you a lot of luck and happiness, and a total recovery

Michele

Tracy said:

I had one in 2009 and I have 3 clips, I also have anxiety that feeling of not being able to breath. That cold dripping feeling went away after about two years. now I get severe headaches when the weather changes and when I'm stressed out I get goose eggs on my forehead. My memory is getting better but I forget alot of little things. I am able to have MRI's and have had two since 09.

Thank you very much Patricia for your support.

One think is the problem in France: Nobody knows, not even the doctors, what is an aneurysm surgery, because they don't do surgery, only endovascular therapy. So whey I say I had a brain surgery, they imagine I had a vascular accident and in france they don't operate for this either, or as they say, they make a little hole in your skull to put some product. So I have to explain that my skull has been cut in half, that I have a false skull, titanium and screws in my head and that the surgery lasted 6 hours. I have to make an image for them to understand, and even so, they do not know that after this surgery, nothing is the same and that I am still at risk. I have been agressed in Paris many times, and even if you go to the police and explain that the agression and emotions can be dangerous, they say: it's finish now. You have had your surgery, and now you are fine !

So it is not easy here to have treatment. They don't connect my recent symptoms with my surgery and think I must have been that way always.

So I feel very lonely here because nobody can even guess I had a such traumatic surgery ! Because you are right, it has been traumatic. I also need to speak about it, all the time, and I still remember how I went to the operation room, preparing for my death the night before. I was completely alone in America when it happened. Indeed, it was a traumatic experience.

I wish you all the best and a wonderful recovery soon.

Michele



Patricia Barnes said:

Have you tried any meds for anxiety? Did you ever think of counseling? It really helps to vent about the changes you are experiencing. I had my annie 4/2009 and it was clipped, Speech was the problem and I did get that back. My behavior has changed and in the past 6 yrs I said some stupid things that I would never have said or done. I still remember everything that I went through prior and after and I still think about it, too often I think. Please, you've overcome a huge health situation. Live your life "one day at a time" and learn to appreciate and enjoy the days. God bless.

Dear David,

Thank you for responding and for your concern. I am glad to see that your surgery went fine, and especially when you had it, in 1999, 15 years ago. So you were 60 ?

Is your balance problem new or it started from the beginning, after your surgery ? I have exactly that, the brain working all the time. I used to read 3 big books a week, I cannot read one line since my surgery. I get also very tired as soon as I read a long document, or work on something on the internet. When my brain works and try to resolve a problem during the day, I am like hyperactive.

Yes there are changes and I thank you all. This is what I wanted to know: Was I alone, was it related to the surgery or not ? Since I have fibromyalgia, I thought my fibromyalgia has been enhanced because of the surgery and is now uncontrollable, many times more severe. I also thought it was the fibromyalgia that took away my sleep, made me anxious and so tired.

One thing though: nobody talked about allergies. I have them a lot, sometimes screaming with pain for hours !

I wish you luck and a continuation of your recovery .

Michele



David Andrus said:

Dear JMT,

My clipping surgery was in 1999, and I have been fine since then. I am 75 now, and I seem to be falling a lot. So I appear to have a balance problem. Saw my GP yesterday, and he is going to consult with my neurologist. I have the same problem with clips - my surgeon said the purity of what he used is questionable, so no MRIs for me. I also have an implant in my aorta which also rules out MRIs. Except for the balance problem I am fine. My short term memory is not good, and my concentration is not as good as when I was younger. Otherwise, life goes on. All the best to you.

David Andrus, Hamilton, Ontario, Canada