Scared, Crying, Confused, and in Pain

General
1

I was getting ready for work one Wednesday morning. Never having headaches, I was blinded with pain in my head. I took the kids to school then went to the ER. I was quickly transfered to the Nero hospital 30 minutes away.


So come to find out, I have 5 aneurysms. 1 burst and was coiled. They waited for a few days for it to heal then went back in and fixed 3 more. One other is too small. I spent 16 days in the hospital. They say I beat all the odds. I was a smoker up until this day and I refuse to pick up another one now.

Currently I have some headaches, but more pain in my lower back and hips. I cry all the time. I'm scared of dying and don't know if the least little tinge in my head should be of concern. I want to get back to normal but so afraid that the least little raise in my BP will hurt something else.

Will my life ever return to normal? Can I still have sex with my very loving and supporting husband who never left my side? Am I going to be here to finish rising my 9 year old daughter and 14 year old son? Like I said, I'm confused, scared, crying, and just want someone to reassure me that I can still live a very eventful, long, and happy life. My husband has told me the docs said i can, but for someone reason, I need to hear it from survivors. Will this depresion go away?
2

Tina,
So sorry that you also have aneurysms as well, however how very very lucky you are to be treated and be home. After one rupture and 4 others you are doing really well. Recovery is long and very slow and please listen to your body and head. My treatment was clipping but what caught me on your post was your back and hip pain. My hips hurt so very very bad when i came home 5 days after surgery and i was also so afraid to be home. Waking up everyday and making small and simple and steady improvements let me feel better and the fear slowly began to leave. There are no guarantee’s but with having surgery i believe i know actually have a life to look forward too. Where as prior i did not even realize i had a great chance of just the opposite, I was blessed with a perfect surgeon and neurologist and wonderful care. My body i needed to make sure to drink water and replenish my muscles to the best i could. Hospital beds are not the easiest on the body as well as the surgery itself , the positioning during the surgery. So take care of yourself and be good to yourself and let others help. This recovery is like none other, but it is doable. Keep posting…and anything that is not right call your doctor and let them know. I had a fever for the first 2 weeks at home, it was only 100. and i called everyday thinking it was horrible and i was fearful, …i was ok , just a low grade fever. Don’t be afraid to call, this is your body. Also it is helpful to read the letter from your brain, that helped me so much, through many tears…watch some movies and relax and try and walk a few houses a day if you can…

blessings
j

3

Tina,
When did you have treatment?
There are many ups and downs for all of us… will just address the pain in your back…Two things to ask your MDS and/or check your medical records…

  1. discomfort from your position on the table during arteriography
  2. if you had a lumbar puncture … which is common when a rupture has occurred to check the CSF
    The punctures are thru the lumbar spine (L3 - L4 area?) and have potential issues…
    BE SURE to ask your MDs… and/or secure your med records…
    Yes, I had a LBP; a ‘collision’ in rehab with f/up x-rays…still have problems (7 years); sciatic nerve related and the piriformis muscles…I use activator chiropractic, craniosacral therapy and massage therapy…I also do a minor amount of Yoga … particularly the deep-breathing…They are effective for me…but ask your MDs…

Cherish your blessings…you got your children safely to school, got yourself safely to E/R; did not impact public safety…Then, excellent E/R for quickly diagnosing and transferring you to the neuro hospital…
Overall, you were blessed…take a step at a time… Please DO CHECK w/your MDS …
Keep us updated…
Pat

4

Welcome, Tina. When did you have your surgery? I remember asking someone when I would get my life back and he said life as I knew it may not return but, it may be even better. It takes time to recover (hard for those of us who have little patience!). Personally, I found the emotional recovery harder than the physical recovery. From what I have read and was told by my doctor, depression is pretty common. I can’t play baseball anymore but, I will be hitting the curling rink next month. I went back to work and I drive. I celebrated my son’s 10th birthday in the hospital but, was home 4 days later to see my kids go trick or treating for Halloween. Congratulations on quitting smoking! That is one of the best things you can do as smoking affects all aspects of your health. Bit by bit, step by step, things will get better. Just remember that it takes time and listen to what your body is telling you.

Laurel

5

I’m starting to try to feel small improvements. I had my surgery on 09/08/10 then 3 days later they fixed the rest of them. Thanks for you reply and I’m so glad I found this site!

6

I didn’t have any lumbar punctures. They were going to after I complained about the pain. They say it may be positioning from the table or even just the blood settling there. also, 16 days in a hospital bed isn’t very good for my back. But after what I went through it’s so hard to not think of all the what if’s that can still be wrong.

7

I had the first surgery on 09/08/10. They had to fix the one that burst. They then had a stint in my head and waited for about 4 more days and finished up the surgeries. I guess I’m just wondering what life has for me next. I feel like part of my life is over and there is nothing I can do about it.

8

Hi, so glad to hear you are still with us especially for your loving family. I had my aneurysm coiled last October and I have since gone back to all my normal activities including sex. My Doctor who is Dr. Chris Ogilvy,the founder of this foundation,whom I was blessed to have as my surgeon. He assured me I had no restrictions. I also have High blood pressure which I make sure I exercise and take my medicine. Make sure you have your BP checked as often as possible. I also suffer from anxiety and depression at times. I remind myself how lucky I am to be alive and try to appreciate each day to the fullest. We are only human and are going to have bad days no matter how positive we may try to stay. I would follow up with your primary with all your concerns as well. We are still alive for a reason so please take the time to play with your children and love your husband. Try to stop worrying so much, it does not change anything, only distracts you from the gifts you have all around you. Take Care.

9

Tina,

Yes you can still live a very eventful, long, and happy life. I had a subarachnoid hemorraghe 4 years ago (9/14/2006). I had a headache off and on for about a week and then pow. The artery ruptured on both sides. I as given a low chance of surviving surgery since they had to seal off the artery and the brain had to reroute the blood flow on its own or one section of my brain wouldn’t get blood and I would stroke out on the table. They gave me an even smaller chance of recovery without any major deficits. But I’m happy to say that I have been able to fully participate in my children’s lives. My sons are now 22 and 21. My daughter is now 16. So they were 18, 17, and 12 at the time. Experiencing my daughter’s sweet 16 was a blessing beyond anything that I could describe. I’m an executive on the consulting side of a Big 4 accounting firm and I’m currently getting my MBA. I’m in the midst of class # 6 with 4 more to go. So yes, life can and will resume. I still get fatigued and have to take it easy some days and I still have challenges with concentration and short-term memory loss. But I’ve learned coping techniques for the most common situations that I encounter. Feel free to reach out to me with any questions that you have as you continue on your journey.

Take care and God bless you.

10

Great to hear how well you are doing Tiffany. How are your classes going considering your short term memory loss. I too suffer from this but was told due to my age, I am only 48? I am in charge of teaching others where I work. I dread when I have to stop at mid sentence to figure out what I was going to say. It is so frustrating. I was thinking of going back to school my self. I have an Accounting degree and want to get a Business degree. I plan to go back after I get my son through college , he is 18 and I have a daughter 22 who just graduated,still paying for her. Good for you getting your masters. Take Care and God bless us All.

11

Wow. Welcome? I’m 2yrs post op after a bleed. I could barely walk when got home from the hospital too. I never wanted to b intimate because I was fearful – now I don’t want to because of life. Emotional recovery is very difficult – keep writing & communicating with ur husband & ur doctors

12

Hi Tina, Well you have had a lot going on in the last month. I have to say that I felt the same way. I had an annie rupture in May. Was in the hospital 11 days and lost 25 lbs. Not a good way to lose weight. Put all the weight back on and I have been very lucky. No side effects and will go back to work in Oct. I think it’s normal to feel the way you do. Not knowing what is going on can be scary. One thing is that it’s imperative to keep a positive attitude. Know that you will be ok. The doctors and technology they now have is amazing. Hey, you don’t have time to worry because you have two young kids. They will keep you busy. Once you start healing and get plenty of rest you will be fine. Do what you need to get your strength back. I was told by a few doctors that for each day you were in the hospital it takes about a week to recuperate. I’m sure once you start getting around you will feel better. I go to the gym almost every day and have an exercise program that has really helped me stay in shape. Plan on taking it easy for a while. Good luck and my prayers are with you.
Tom

13

Cornelia, my classes are going well. It takes lots of extra work. I need to read, highlight, outline, review, and answer practice problems and quizzes to make the concepts stick but they do. I’ve earned As in all my classes so far. But just so you don’t think I have it all figured it, just today I was reminded of my stml. I was on a call with one of my account teams and they were reviewing the relationship building action items from the previous meeting. There was one assigned to me that I did not remember at all, in any way. It didn’t even sound vaguely familiar yet I knew it wasn’t made it because it made perfect since that it would be my takeaway. I had failed to do the one thing which is an absolutely must for me. I did not write it down on my to-do list before I left the meeting and it was gone. Hope this helps.

14

Scared, Crying, Confused and in Pain:

First things first … stop it! Reach up and pat yourself on the back with right hand. Your here! You survived! Having said that I know where you are coming from. I too ruptured and have had numerous coiling. Not exactly my idea of fun either. BTW - 'nother pat on the back for quitting smoking. If you came out of hospital with just headaches and some back pain your doing well. Lots including me had rehab for walking, speech therapy etc. I did it all and live a relatively normal life now but it sure took some time. It helps me to remind myself that are many that don’t make it and many with severe defecits. You and I also avoiding the clipping procedure which is a far more evasive procedure.

I went through the “get ready to call 911 I have a twinge in my head” but am now able to recoginize (I hope) a deficit headaches(I get them all the time) and a rupture headache. I learnt this by dragging my butt to emerg only to be told to go home and relax. Maybe try that routine, if you thing it’s worth it. Maybe what’s different with me is my rupture headache was classis thunderclap (read tears in the eyes thing I’m going to die and afraid I’m not going to die and will have suffer throught it!) Since part of my deficit is my rupture set off numerous headaches so I’m hopefully getting good at destinguishing betwwen the 2. I do have pain medication when required for these headaches but it is not always effective

You will live a normal “after annie” life. It may be different but it’s life! Listen to your body, It will dictate when you need to seek help. Don’t do what I did (this may be a male thing) I sankinto a deep depression that I suffered through for a long time until my wife finally sat me down and said you are not yourself and we need to address this. I went to Dr. reluctantly and she got me on some good antidepressant medications that kind of evened me out. She explained I may be on them for a short time or a long time. Maybe all I need is to get over the hump. Turns out I was on them for 8-12 months. I choice to go off them on a taper schedule and I’m seemingly normal fine. Apparently depression is something that is common for annie sufferers.

I watch my blood pressure closely but if it’s in the normal range a little bit should not bother your annie. It bothers you more than the annie! You could also see if your Dr. thinks you need to address your blood pressure with meds that are available.

OKAY - THIS PART IMPORTANT - You can live a normal after Annie life. Please note I said after Annie. You have some renters in your brain that you are stuck with. No permanent kicking them out. Listen to your body. If you get a thunderclap head get your butt to ER. I’m not suggesting this will happen, it’s just part of your after annie life. Please be reassured there are many on this board that are living long eventful wonderful after annie lifes. IMO the majority of them don’t even post on this board - they live there life…

The sex thing. I don’t want to play Dr. so you better check with them. I can tell you my wife and I started back gently and now we are back to the swing from the ceiling whips and costumes… OKAY OKAY just kidding about the swings, whips and costumes. In the interest of being 100% honest my wife suffers at this part of recovery, She won’t admit it but I think she holds back without trying to show it and perhaps it will always be this way. I’m always satisfied. Maybe I’ll get her drunk next time - smile (unfortunately she does not drink!)

YOUR A SURVIVOR! Not sure how far along you are in recovery but the road gets easier with time. I hope I have helped you in some small way and perhaps addressed some of your questions. Please remember with everything I have said I am not a Dr. I just have a life experience similiar to yours and can tell you how it went for me.

BTW tyler was 9 when I ruptured and Erin was 16. Erin now is a scool teacher and Tyler starting University soon.

One last thing and it may not be for you. I stay away from the forums during periods of normal. Kind of my out of sight out of my thoughtsmethod. It may not be for you but sometimes I need to say to myseld I’m normal and the forum reminds me of what I have. I call it my stick my head in the sand option. It may help for you it may not. When they need to treat a stubborn aneurism (mine keeps growing) I tend to get back on and find it a good coping thing. I have gone on for ages here… Sorry I’ll let you go.

Remember - your a Survivor!!! There is light at the end of the tunnel!!!

15

OMG I just adore your response to me. It made me smile, addressed my issues, and sounds so much like me and my husband. I have only been out of the hospital for 4 days so far and everyone says I am doing great so far. So I just wanted to hear this can be somewhat normal and others have experienced it. I really enjoyed your desriptive response regarding sex with a spouse. I think most docs and others are afraid to be so straight forward and I really appreciate it. You have helped me a lot, at least enough to rest easy for tonight.

I will be taking your advice about only logging on when needing my boost from others and trying to pursue my normal after annie life at all other times. I wish you the best and thank you for the words of encouragement.

Tina

16

Couple of things - staying offer forum does not work for everyone. after all it’s a support group

For such a short period out of hospital you seem doing great. You still got some recovering . Don;t push yoursel

Don’t suck it up since you never get depreesed. i waiting it out for a long period and I should of never done it. If your real down don’t wait a long time like this dumb ass male (you are never lose the dumbassed against me - promise) i waited over a year and it was gull-darned freaking terrible Maybye wait a few months/week is a better time frame. They do take sometimes 2 or 3 works to work and often on the first one thry try don;t work Any sort of serios suicidal thoughts. GO STRAIGHT TO DR. Shamefully and embarrasly enough I did and that’s the straw that broke the camels back. I never wanted to hurt my self but in the darker day I alway though life would be easier if I never woke. I of coourse never acted but who can tell what it could of happened itf it got worse. IMO only. Dr know best.

Hope you were not offended in any way re the answer to sex question. Honestly we are a typical 50 and 53 year old couple with normal affter annie sex lives-kinda other than what I mentioned and I’m Sandy will be more comfortable with time

Just found out today a possible heart condition may prevent me from getting back on the road to recovery. I remind myself it’s just a hill on the road to recovery and this succer and no intention to get off it. I have a life to live

DAMN Long winded again

17

I found your post the most intriging. The emotional recovery…has anyone told you why it is so difficult. I still struggle with this everyday, even though I have never questioned why this happended to me. I just moved on with my life, my new life, the new normal. However, the emotional recovery, well it’s been 3 years and yes, I can speak about it now without crying. I guess that was the biggest hurdle. How about you?

18

Tina,
Were all four of your aneurysms coiled or were any glued?
Would you be comfortabe sharing info on the aneurysm locations by artery and size?
Was the stent used with a wide-neck aneurysm or for some other artery protection?
You so amaze me with all you can do weeks after a rupture / treatment.
Have you returned to work or have a scheduled time to?
Pat

19

Tina
how you making out? Have things gotten a “teency” bit better. Remember the road to recovery is rough in the begginning and litttle steps forward (and then 1 back sometimes) seem to be the winning strategy.

Keep your chin up during your battle!

20

Getting a little better. Starting to loose my hair. Doc says it’s cuz i was exposed to radition during surgeries. But energy is coming back. desire to put it behind me and move on is starting to appear. But also looking at making wills, etc. Hope all is well with you too!