thanks, i'm trying
wow, thanks to everyone for encouragement. I don't know all my details. size etc. It was subacrachnoid hemorage and it was clipped. I've got the hospital reports but I get very tense when I start to read them. My husband says I don't need to know........ Well I am greatful for my life, my mind, and my weak, but whole body. Don't complain, carp, vent, worry my family, so I started doing that here. sorry
Pat, My wife (Angie) had her SAH about 5 years ago. Like some of the others have said, you will discover your new "normal". This was a major life event and it will probably change many things in your life. Give yourself plenty of time (and permission) to recover. Angie does not forget what has happened, but she has accepted it. After her initial recovery, she would just go out and get exactly what she/we needed. No browsing. To give you a time frame, it took her about 2 years to get interested in shopping again. Again everyone is different because everyone's aneurysm occurs in a different location and affects different parts of the brain. Stick with it and know that it will get better. Come talk to us when things are rough. Take care of yourself. Cheers. Mike
thanks for your encouragement and best wishes to your wife, and you as her helpmate. I know my husband has also gone thru *#*#*, and he is doing so much more than ever before.
Hi Pat,
We can't predict the future, we survived the past. I too worry about what is going on in my head, but I found that the less I worry the better my day. I am 2 years post rupture and I am a changed person forever! I am no longer the person I was that fateful day. I miss me! Anyway life goes on and I am happy to be a survivor! You are still in shock as to what has happened, it will pass. Trust me it will! Wishing you less worry and better days!
Peggy
thanks for the encouragement
It still is too new Pat...it takes time...I don't think you will ever forget, but you will come to worry less...
Cyber~hug to You...Colleen
Pat--It will get better---It has taken me quite awhile to really believe what happened to me and the changes in my life- That being said, I still have a hard time with the whole situation and am pleased everytime I am able to do something I was not able to months ago. I also choose NOT to worry everytime I get a headache/neck ache...I take an Advil and that takes care of it...I don't know if any of us will ever forget....I think it is better to live your like and NOT have your life dictated by your aneursym (I know, easier said than done...) Hope this helps- D
,,,also, this coming from a long line of great "worry worts" myself included...I really have to make am concerted effort NOT to worry-
hi pat,
i began to use time and an increase in my faith to God that it will all get better..the fear can become consuming, which throws everything else out of sync...God wants you to have faith that he will take care of you..he is our rock and our shield. the process of recovery is not to forget but to realize how lucky we are to of survived...day by day it will begin to fall further to the back of our minds. the more time you have gained between the day u got ur anny and being well ...staying in ur safezone you will soon find urself not thinking of it at all...it will happen..just give it time ...i did alot of praying to ask God to take away the fear that was taking over me...leaving it all n his hands..and it happened...it will for you too..prayers n love to you...
thanks I need the prayers and encouragement
I'm trying, and I keep reminding myself that I am lucky
very new, very nervous! thanks for all of your posts
I am like you, I don't know the details and have ahard time reading the hospital reports that I have...My husband and family are like yours...but I would like/need to know what the heck went on in my brain and is going on currently so I am trying to know but not dwell...hard for me at times-haha- D
Hi Pat,
My heart started to race when I signed into my e-mail account and saw the all the mails about replies to your posting. I didn't know what to think.
Then I read all the lovely words of encouragement that were sent to you today. I especially liked Mike's comments as a supportive spouse.
I am so sorry that you're not having a good day. But, I am thankful for both you and me that we have such a supportive community.
May I give you an update on me? I went to see the neurosurgeon today to go over all of my questions. I got good answers but, it was clear that he really wasn't accustomed to someone asking so many questions - many of which I raised only because of what I've learned from folks on this site.
On Thursday, I will have an angiogram only. Afterwards, we will evaluate whether any treatment will be needed. But, the doctor did say something that I found to be very interesting. He said that he didn't expect that he would see any changes in my annies from the last study. Of course, this still has to be proven by the study results but I am very encouraged. I am praying for a miracle.
And, I am praying for you and for your peace of mind.
I've been trying to think of a way to describe what we've been through and what the future might be like for you. As I reflect on my 42 years of living with the aftermath of a rupture and having still unruptured aneurysms, I offer this simplistic analogy. What we've been through, though much more severe, is like the first time you burned your hand on the stove. (I bet you can still visualize the first time it happened to you.) Every time you go near a stove, you take precautions to avoid getting burned again. You warn your love ones and acquaintances. Sometimes, you actually flash back to your first experience. You don't fear getting burned as much as you probably did right after it happened the first time, but you know that it could happen again. You may even have a scar that reminds you of the experience (like I do on the back of my calf from leaning against a space heater when I was a kid). But, like the scar, the anxiety fades over time. It doesn't disappear but it becomes less prominent.
May God's peace be with you.
Carole
Carole, you have taken a lot of time with your postings, thanks for the concern.
Could I ask you to share some of your questions to the neurosurgeon? I go back for post-op check in 3 weeks. I don't know what to ask. When I went for the first post discharge appt they did a CAT and said don't worry, and that was about it.
I know your feeling.
My rupture was on february,16,2009 and I’m lucky, I fully recovered.
I never forget and I think is not possible to’ forget it, I’m used to’ be’ warried every day, but that’s life.
Day by day you will feel better, but I think is not possibile to’ forget it.
Take care of you,
Giovanni
Hi Pat,
Here are my questions edited of most personal info. Since I didn't go for a post-op check they won't be directly applicable to you but you can use these to stimulate ideas for your own questions.
1. Statistics: How many coiling procedures are performed at this hospital each year?
- how many have you performed?
- What is the treatment success rate?
2. Does this hospital or you use either pipeline embolization or onyx glue embolization for treatment of brain aneurysms? If yes:
- when were these procedures first used
- how many of each procedure has been performed so far, and
- what, “in general” is the criteria for using these procedures
3. If pipeline embolization or onyx glue embolization is not used at in this hospital or by you, please explain why not.
4. My purpose for having an angiogram is to obtain information about the current status of my known aneurysms and to determine if they have grown or if there are others present.
Per our discussion last week, you asked permission to perform the angiogram and to only proceed with any coiling should you find that there is an aneurysm posing such a threat to me that immediate treatment would be the most prudent thing to do.
- What criteria would be used to judge a “significant” threat, e.g., size, shape, location, change from last measurement?
- Will I be awake or asleep during the procedure?
5. How soon after the angiogram will I receive the results of the test and be presented with options for next steps?
6. When and why is a CTA used instead of an angiogram and vice versa?
7. Allergy concerns:
8. Pre surgery meds:
- I normally take the following meds each morning that I have concerns about missing for possibly a full day: What is your recommendation for taking these medications on the day(s) of the treatment.
- I have also been taking the following medications daily for the past 6 weeks. Should either of these be discontinued before the surgery and if so, for how long?
9. Recovery time - I have planned to take 2 days off from work and work from home the following week. Is this reasonable based on your actual experience with patients with asymptomatic unruptured aneurysms?
- When should I be able to resume other normal activities such as:
i. Driving
ii. Exercising – aerobic and anaerobic
iii. Having a massage?
iv. Singing (I’m a soprano)
10. After a coiling procedure:
- What side effects are experienced most frequently by patients who undergo a coiling procedure?
- Are vasospasms an issue?
- Are seizures an issue?
- What medications are routinely prescribed?
- How soon after the treatment is the first follow-up visit?
11. Would it be possible to have another appointment to visit to clarify expectations prior to the scheduled angiogram?
12. The CT scan report that I gave you mentioned a lesion in the left side of my brain. What is the significance of this?
I hope these are helpful to you and perhaps to someone else. They prompted a really good discussion with my doctor (I sent them via e-mail).
Take care.
Carole
wow!. Thanks for your time, I'm sure these will be of help to people
I do find that I worry a little less every day. I'm not good at resting so I keep skipping that. But I get a bad crick in the neck and pain and panic right away. Also doing PT for the weakness (everything functions, just weak) but very very sore from that too.
carole,
you are heaven sent...wat great information n help u provide to us on the site...its all about support and you are a prime example..kudos 2 u my friend n fellow survivor! God bless