I discovered the BAF web site and subsequently received a response from Colleen. Thank you!Please forgive me for being a bit confused on how to proceed with all this. Five years ago, 2 weeks after my 60th birthday, I had an aneurysmal subarachnoid hemorrhage. Fortunately my husband called 911 and I was at a hospital in a matter of minutes, diagnosed quickly and had a wonderful surgeon who clipped the aneurysm that day. I was in the ICU 2 nights and out of the hospital by the 5th day. I survived! I had headaches for a long time, stayed nauseated for a week or so and had problems keeping down necessary meds. My jaw locked up due to the surgery and later had physical therapy. Back pain was intense due to my body absorbing the blood. Dropped from 105 pounds to under 95 pounds. The neurosurgeon did little follow-up except ct scans to check on blood clearing the brain and to ensure the clip was stable etc.I did see a speech therapist who gave me tools to exercise my brain . My primary care doctor did not seem to be able to help me with complaints of balance, fatigue, being overwhelmed. His diagnosis was that aging is responsible for my complaints. I am also hypothyroid but on medication. I do have vision problems and continue to have double vision at times. I get so fatigued that I just shut down. I do get emotional. A CT scan after the surgery showed an old infarct that had occured prior to the aneursym. No one seems to be able to tell me what both these events have done to me and if or when I will get better
I have lost 2 (possibly 3)relatives to aneurysms. My surgeon suggested both my sister and niece be checked. They were and are clear although my sister does have an odd artery formation in the brain.
I am grateful to be alive and to be able to function so well but something is still not right and I feel no one understands or listens to me. Since I look "OK" then I must be OK. How do I deal with this? Betty
Welcome to BAF. I'm sorry that you have had such trials. This is a great site for sharing experiences and learning from each other.
I am one of the longer term (perhaps the longest) survivor of a ruptured aneurysm in the group. My annie ruptured almost 43 years ago. So, I have lived all my adult life "post rupture" and I still have three unruptured aneurysms.
One of the big challenges of being a mature woman, which I am now, is having doctors who will listen to you and work with you to identify the underlying cause of a problem instead of just treating the symptoms. The other challenge, which as you will discover as you read the posting of various members, is that what we experience during/with a rupture, the coiling/clipping and the subsequent recovery varies widely from person to person. There is no set script that the doctors can follow with certitude to say this is what patients will experience. This often makes it difficult for them to help us. My conclusion after all these years, is that I have to be my own advocate. I have to do the research and I have to believe that I will get better from whatever is ailing me. I also have learned (having been misdiagnosed more than once) that sometimes, I have to challenge what the doctors are telling me.
Similar to you, I have dealt with hypothyroidism, fatigue and chronic pain. My PCP was able to help with the thryoid and balance issues. The fatigue, I found, was due to a combination of stress, not eating right, not getting enough sleep and medications. My PCP and I got the meds adjusted. I retired recently so I'm finally getting enough sleep, my diet is much improved and my stress level is very low. I'm also finding that regular exercise is really helping to increase my energy level and reduce my pain. Looking at the improvement I've made in just two weeks, I can easily say that if I could go back and do one thing differently to improve my health, it would be to exercise more. I invite you to join our BAF exercise challenge.
I will pray that you will find the answers that you are looking for and that God will grant you a sense of well being. We can't influence what has happened to us but we can influence the future.
Hello Betty, Yes Carole is right we have to become or own advocates. If one doctors doesn't listens to you then find one who will. This is your body and you know it better than anyone else. So don't just stop at what they (pcp) are saying you find someone who will listen and help you.
Good Luck! and God Bless!
Oh and by the way Carole is a wonderful person who can really give great advice.
hi Betty-wow this really hit home- i wish i knew, i had sah 3 yrs ago,pt told me 7 months or 7 years-i was shocked when she told me that- a shockwave of negative emotions engulfed me-anger, confusion,agitation, doubt (in their knowledge) to name a few. I still cant understand what happened to my strength, energy, balance, fine motor control. Well Betty enough about me- I'm glad you found us here at baf since the site has helped me immensly and i suspect it will help you also. I'll never know the why's & why nots but we understand each other and we will listen even in the face of the adversity of doctors and others. And we know how hard we worked to get this far,no one can call us quiters. My heart goes out to you all who have worked and struggled a lot longer than i, God Bless you & yours,glad your niece is cleared and hope sis's malformation is ok
Carole, Thank you for your response. You had to be so very young when you experienced your hemorrhage. It is wonderful to hear from others who have experienced this. I don't know anyone who has survived. My "annie" relatives relatives did not.
I was exercising prior to the rupture and still do. My husband and I are "mall walkers" and I also work with free weights for muscle tone and balance. My doctor is experimenting with my synthroid because my tsh is all over the place. She wants me on a lower dose and I know I need a higher one. She finally gave in to increasing the synthroid so we'll see if that helps.
The fatigue is the worst. It seems 5 years post-up that I should feel better than I do. My vision is still an issue and at times my legs just quick working.
Thank you for your kind and supportive words. I pray that you continue to improve. Betty
Ron, I am beginning to believe I am not nuts after all!! I am supposed to be well after all these years but I know everything is not as it should be. I understand the emotions. May God bless you and give you strength. Betty
Tiffany, It is good to hear from you. I am beginning to understand that I do not have to accept what doctors say when I know something is not right. I wish you well and God bless you! Betty