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Everything posted by Colleen

  1. Hi Yun, No trivial questions when it comes to brain surgery after effects. I also had clipping. The incision ran down my right side hairline. Don't want to be too graphic but scalp was pulled back and skull bone removed to get to where they needed to go. The skull pieces were repaired with "bondo", and these areas ache when the weather changes or I'm tired or stressed. As for the scalp, it was explained to me that as all the disturbed nerves heal, it would feel tingly or itchy or like something was crawling . That took a very good while to go away. Even now, 10+ years later, sometimes I get a sensation of numbness, usually associated with fatigue, stress or too much caffeine. But nothing like the early days. It does get better, slowly but surely. Colleen
  2. LOL Casey, I got pretty upset when my neurologist told me part of my brain had died and I was being stubborn trying to fight my way through on my own. The meds he prescribed have helped but I keep the dosage low. I think just coming to grips with reality was invaluable for coping. Thanks for for the video Daff, I'm sure it will help many. Colleen
  3. Have you found Pediatric Intracranial Aneurysms on mc.vanderbilt.edu? It was published in 2010 but makes an important point about the advances that have been made in recent years. Also, just in my brief perusal, it appears that UCSF is a most excellent facility. You are blessed on that score. Best wishes, Colleen
  4. Well, I hit the ten year mark today. Overall I'm doing quite well, though last week I had my first major anxiety attack in quite some time. It was bad enough to send me to the dr, who prescribed better living through pharmaceuticals. Whatever it takes to keep on keepin on! Many thanks to all of you for this site and for making so many of us all across the miles keep from feeling alone. Love, Colleen
  5. Congrats on your lucky 13 and thank you so much for this site. It's truly a lifesaver for so many!
  6. Good evening and welcome to this lovely site, First I want to commend you for your strong spirit and being so supportive. I always tell people that in some ways, the early days of the SAH was harder on my husband than on me. Despite a pretty serious bleed and a craniotomy two months later to fix a second aneurysm, I recovered pretty quickly. I do not have children, but I was back to work full time after three months. That said, I never have had the same level of energy and stamina that I had before the bleed. ten years later and I'm having one of those weeks where I've "hit the wall" and the least discord makes my brain hurt. And even though I've been told the chance of a bleed happening again is slim to none, I still have to deal with a certain amount of fear when my head hurts.. You mention that you' d be surprized if your wife had any "remarkable" cognitive changes. That sentiment is pretty common when one isn't bearing physical scars and is operating at a high functional level. A common directive from medical staff is to "go live your life" because after all, we are just so blessed to be here and able to walk and talk at the same time.. But as my current neurologist tells me, no one gets away free. Where there is brain bleeding there is brain damaged and that part of the brain had a function, whether it's controlling fear or anger or joy or memory or expression or attention span. And whatever that impairment may be, it's worse whenever the fatigue hits. Please continue to urge your wife to have an assessment so the best path forward can be planned for her. I stubbornly waited years before I sought help. Things still aren't perfect, but they are better. Just knowing I wasn't imagining the changes helped immensely. i can also say that I read posts on this site for a long time before I posted myself, so if your wife isn't comfortable with the idea of conversing yet that is understandable. I do hope she'll read though, to see that whatever she's experiencing isn't unusual for what she's been through and she isn't alone. Our hearts go out to you as you adjust to this new normal and we all hope you both find help and comfort here. Colleen
  7. Only your doctor can answer that for you. Each case is different. But I did find vitamins, particularly B complex, help with energy and stamina.
  8. I will echo Paul's advise and suggest you see a neurologist who can explain what area of your brain was affected by the bleed. Sometimes just knowing what area was impacted - and the activities that area controlled - will at least help you understand your actions and accept yourself. No one is worthless due to a medical event. And I can relate to having outbursts. Sometimes I just put my hand over my mouth and wait til I've thought a bit. I also take a mild antidepressant. I've talked to others who had this problem post-SAH too, so you are not alone. Colleen
  9. Hi Tara, welcome to the site. It seems no matter where we are, doctors have a tendency to just turn us loose after the SAH and repair of vessels ( if necessary). Kind of like " congratulations, you survived, go live your life". I know I had a brilliant neurosurgeon and interventional radiologist, but there was little to no discussion over what to expect after. I struggled for five years before I finally saw a neurologist who explained where my brain was damaged, what that part of the brain controlled, and why I felt like I had attention deficit disorder and memory lapses. There just aren't any freebies. Your mom has damage. She has blood that has to dissapate ( like a large bruise on the brain) and probably still has some headaches that affect her will to get up, or eat, or visit with family. My best hours after I came home were laying on the couch with my dog Annie, bless her heart. So do not delay in getting your mom to a neurologist. Most GPs simply don't have the level of training to help with this. Beat wishes to you. And remember to take care and time for yourself. You cannot help mom if you are all a frazzle.. Colleen
  10. I would be interested in the source of that quote. Thanks. Colleen
  11. Hey Darcy, So not quite two months yet since the SAH. He will steadily get better. I was back at work within three months but mostly was doing desk work and did not have complications from the bleed. And I wont lie; fatigue was an issue for a long time. Just keep his dr apprised of his recovery status and try not to stress. I'm guessing if you're mowing you are down south somewhere. Learn to use the mower, it's great relaxation! Seriously, I know it's hard but he shouldn't stress about the grass. Priorities, you know. The main thing is getting better. Prayers for you, Colleen
  12. So good to hear from you Iola and congrats on the 5 year anniversary! You've made great strides along the way. Moving on to the ten year mark myself and you are very correct- we are never the same as we were before. However, the BTG site is excellent proof that we adapt brilliantly. You go, girl!
  13. Hi Stephen, As all have said, you don't just get over an SAH like you would a bout with flu. I'm wondering if perhaps you started feeling better and then started doing more, perhaps having a set back. I know it's frustrating, but you really must allow time for healing. Stamina takes a long time to come back around and fatigue often results in headache. As others have said, see your dr about symptoms that concern you. Best wishes, Colleen
  14. Hi Darcy, I'm sorry to hear about your husband. As others have said, it takes time for the blood to break down as it has nowhere to go. The way it was explained to me is that it is like a bruise; the blood has to degrade, but while it is present it is an irritant to the brain tissue. And I know when I had the headaches, I often felt nauseous. My dr actually suggested if I normally drank coffee to go ahead and drink it since caffeine withdrawal could aggravate the headaches. That said, I drank a lot of water and herbal teas after I came home. It will take awhile but hopefully he'll feel better soon. Colleen
  15. Well I'm a bit late to this party, but I do congratulate you on your accomplishments and joyous attitude. ( and I too would love a cleaner). May you have many more journeys and adventures. Happy Trails! Colleen
  16. Congrats, Casey and so happy to hear your recovery has been so outstanding.. Always uplifting to hear when others are doing well! love, Colleen
  17. November 1 marked the nine year mark for me! I meant to post that day, but between newish responsibilities at work and a newish wild and crazy dog that gets me up way too early for walking, I have a hard time keeping my eyes open at night. I got to celebrate the day with a 4 hour conference call in the morning and a 1.5 hour meeting in the afternoon, which I had to spend an hour driving to and from! So I guess you can see I've recovered fairly well. Even so, I still find great comfort in the posts that remind me my lingering sensations and memory issues aren't just my imagination. While I dont post as often I inwardly celebrate all your victories large and small and sympathize and pray over set- backs and hardships. I am very thankful to have this family to come to. Much love to you all, Colleen
  18. Hi Sairah, I too had a craniotomy for clipping aneurysms and went through the whole crawly, itchy head thing. You must remember when they did the surgery they had to pull the scalp back to some degree, disrupting vessels and nerves. The creepy crawly sensations are from the healing, much like an incision will itch as it heals. Fortunately, I was told to expect that. It can go on for quite some time! I find too that cold, damp weather makes the affected skull bones ache, so am careful to keep hats handy in winter. After more than 8 years, the area o skull that was cut out and replaced has sunken somewhat. Also, do not be surprised or alarmed at random pains. I've spoken to others who've had SAH and it seems a common experience. Disturbing, I know and I won't say you get used to it, but more tolerant perhaps. Best wishes, Colleen
  19. Hi Topsy, i was was also reluctant to take medication for my anxiety issues and attempted to " go live your life" for about 5 years before seeking help. I also take an SSRI, different med than you are prescribed, and at the lowest dose. It helps. You should discuss your concerns over the medication with your doctors or pharmacist.
  20. Dearest Topsy, You really should discuss your anxiety and depression with your neurologist or GP. Following my ruptured aneurysm, one of my doctors told me that anxiety and even post-traumatic stress disorder is quite common as a result of the life-threatening experience. You are barely two months away from the bleed, so of course you are fearful. Perhaps you can have someone accompany you to your doctor's office. As for the toothache, please get to a dentist. If there is infection, it could lead to more problems. The better you take care of yourself, the quicker you can regain some normalcy in your life. Best wishes, Colleen
  21. Congratulations Jan on two years of striving and healing. I know it hasn't been easy but you are so much stronger than you think you are; you're doing great! Hope you enjoy your visit with Michelle. Have some cake for me! Love, Colleen
  22. Congratulations on making the 3 year mark! I know it has been a tough road for you Michelle, and I think you have been holding up admirably. It takes a lot of grit to hold together when our parents are aging, especially when it takes so much strength just to keep ourselves on even keel. You are doing better than most! Your family and friends are blessed to have you and surely this next year will bring good things to you. Love, Colleen
  23. It has been my experience that my primary care physician has not had much input on issues related to my SAH. You may need to follow up with a neurologist if you continue to have problems. That said, I found early on that just the stress and fear that surrounded the post-SAH days exacerbated every little ache and pain. I drank a lot of herbal tea in those early days, finding the process of making it and sipping it calming. Best wishes, Colleen
  24. Hi Michelle, I've had all manner of strange feelings in my head since the SAH more than eight years ago and still get them. Overall, I don't worry about them but there are those instances when you just can't help but get a bit anxious., especially when they come on very suddenly. I know they are exacerbated by too much caffeine. But do talk to your doctor about it to be sure. love, Colleen
  25. Dearest Paul, I am so very,very sorry to read the sad news of your loss. Lin has battled so valiantly all these years, she has been a true inspiration. And there has rarely been a more devoted partner and carer than you. We all have been so blessed that you have shared your lives this way. Words are so insufficient. Please know I send my deepest condolences and wish I could reach you with a hug. I pray you will be comforted knowing that Lin now is truly at peace in God's everlasting light and love. Love, Colleen
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