Carolynusa

hi Chris. I agree with everything Michelle said and the others too. So sorry for what you had to go through and your family also. Hard thing to deal with for all of you. You sound like you are working hard to deal with it and are trying to step back into the things that you had loved to do. Great! I'm onto about 1-1/2 years and was terribly frightened for a while. Everything scared me...but I notice that I am much better at the fear thing. I believe you will conquer fear also. It takes time. Listen to your body and your head specifically. See a doctor if you are not feeling well. So proud of you that you are determined to walk/run again. Congrats - but don't try and do a 20-mile run for a while! Be positive and take each day at a time. Come back here for support whenever you feel like it. These are some great people and you will always be warmly welcomed. As Win might say...if you have to run - at least sing while you do it! Much Much well wishes to you and your family. Remember to be positive. Carolyn

xmartz! Depression has been my secondary occupation my whole life. It's a horrible feeling and leads one to more and more negative feelings about themselves. I can definitely tell you this - you "must" have a purpose or you would not still be here. You just have to get help and keep moving inch by inch towards discovering what it is. I also cannot work and can't do much either. It gets me down sometimes as I am a "people person" generally. Don't feel "dumb". I understand that also and have felt that way myself. I know you are not dumb because you have reached out and found a support group site and are attempting to get help. That's not dumb! It's wildly fantastic and intelligent of you. It shows you really don't want to feel bad all of the time but want help to come back up to the times when you felt more positive about yourself. I have said before that I don't understand the medical care system in UK - if that's where you live - but I do know what you mean about financial problems weighing you down. I was in hospital for 8 weeks and have had tons of aftercare since 6/3/14. So far my bill has climbed to to approximately 1.7 million u.s. dollars. While I was in hospital my employer fired me. That was really cool of them. The bills were starting to roll in and scare the h..l out of my family. The hospital subsequently filed for government disability for me and it was approved. The hospital has a community care program so they wrote off the rest. Look and look for a way to get help for your bills. Your health is more important than money. Seek help for your depression. It's just a bump in your road to recovery. I have found that if I can accomplish just one thing a day I feel better and feel there is hope. Try that. Please try to keep yourself "up" - even a little up is better than nothing. Take it a little at a time. Come here to talk. Remind yourself that you are a great guy/girl and can feel that way again. Don't let that nasty depression win. Go for it. Get happy! Sending you much positive thoughts Keep in touch Feel better Carolyn

Hi Gemma - I, personally, have not experienced anything as you have described. However, I do seem to add or change some new phenomena as I go along. I won't bore you with them as they are peanuts compared to what you are going through. I'm so sorry this is happening to you. It seems like we go through enough recovering from sah but the healing goes on. Keep "hounding" your docs and think carefully about what you should go forward with. I don't know how your insurance or your medical things work in UK - so I don't know what options you might have for multi-specialist opinions. Our insurance in US is all about money and is hard to deal with when you are sick or severely ill. Take good care of yourself. Do not lose hope. Picture yourself walking perfectly without a cane - even when you have to use it. Keep your chin up, keep positive, see your future as a great thing. Believe in it. Love and positive thoughts on the way Carolyn

Hello Andy. First I have to say how sorry I am for your wife and rest of family. Tough thing to happen. Sounds like your wife is starting to gain her strength, become less confused and trying to understand what happened. I think that, often, the immediate results of an Sah change over time. I think it might be the brain trying to heal. Healing takes time. Be with her, hold her and relay all of your concerns to the physician. Be her advocate so she will get the best possible care. Please come back here when you can. This site helped me a great deal and there are a lot of "carers" on here for you to talk to. Again, I am so sorry and keep us posted on your journey. Much positive thoughts coming your way. Take a deep breath and take one step at a time. Carolyn

Hello Greg! I'm Carolyn - Win's official singing partner. Subs is also a partner when he isn't too busy drinking latte after latte. Win's a chocolate girl and I am a chocolate/latte girl. Story of James Cracknel very good to read and great he is making improvements. You, also. Win, Subs and I wish to extend an invitation to the caroling club. Take care and "keep on Truckin" with your personal improvement. Carolyn

Hello Greg- I am in u.s. but Macca's and Super's explanations and personal experiences sound remarkedly like what happens over here. First let me get this off of my chest= Bureaucracy, Bureaucracy, Bureaucracy! Don't get me started. Wait! I started it myself. My request for financial and medical assistance took 3 appeals before it was approved. I was glad since my 8 weeks stay for SAH was 1.4 million dollars - sorry my head won't let me do conversions this moment. The most important thing is that you do not give up. Appeal as much as possible.you don't need to add this to your recovery. I have a feeling things will most likely to work out for you ☺ Take care. Remember your health and piece of mind are way and beyond any bureaucracy they throw at you.

Hey all - in USA - no idea about insurance. Sorry. Good luck and I hope all are ok. France Oh my God.

Hi Gemma - I'm a year and a half out from my sah. I didn't really have any physical symptoms afterwards except dizzy and a little wobbling. So...I come home after 8 weeks in hospital and, the first thing I did, was fall on the floor and slam my head against my microwave cart. Hard. I was sure my shunt was going to explode but came out okay. I'm very careful these days to try to take it slowly when I walk, always find something to grab if I get dizzy or wobbly; be extremely careful in shower, etc. Do you remember or know about the toy "weeble wobble"? They had very round behinds and wobbled all of the time. While I don't exactly have a rounded behind (working on it though!) I still wobble like them. Try to take it with a little humor if you can - while always paying attention to what you are doing. Example: If you are climbing stairs hold the railing tight. It is good that your are paying such attention to your symptoms and getting treatment. This will make you feel a lot better and, through this site, you will see there are a lot of people with the symptoms you describe. You're on the right path so be proud of yourself for any progress that you make. Don't stew too much about it. I, personally, get a very good feeling from your posts. Carry on! You sound like a very wise and wonderful person. Love to you Carolyn

Phew! Sarah! Congrats a million times over for your anniversary! I read your posts and always love you and posts. 7 years! You give me hope when, often, I'm not sure I have any. We all have our problems, I'm sure, but, when I think of my ugly problems, I will forever from now on, remember your list. Sorry it has been so hard for you and your family. As Win would say...chin up, take each problem one at a time. Smile and sing when you can. I'm working on Scooby Doo soundtrack today. Having a little fun is a must. You are so strong - I know you will rise above any problem you may or may not encounter. Remember - you are tough. You can handle anything. You are a tough chicky baby ( ) I'm sorry about your husband. Really. But...I would have to pick Option A so you can spend a lot more time with your wonderful husband. You're right. One day at a time. Again...Congrats! You will figure out the right thing to help you get through this point of your life. I'm sure of that. Much love to you and your family Carolyn

Hi Sue. I liked your quotes also. They were right up my alley as a lot of people will tell you - lol. You're like a miracle! I can't believe you have improved so much and your life has continued so much that you have been able to enjoy your family. etc. That is wonderful! Congratulations. Sending you positive thoughts. Continue to be well and hugs to kids and grandkids. Carolyn

Hello Sharon - Nice to meet you but wish under other circumstances. Wow! All of those hours! I can't even imagine that. I'm not allowed to work - at the present. Not sure about future. My SAH was last July. I'm from U.S. and the hospital applied for disability for me before I even went home. It took 3 or 4 months but I finally got it. All we had to do is fill out forms, do a phone interview. Not many unions left over here so totally different experience. Don't try too fast to do so many hours. Does your employer understand this? I wish you well and can only tell you to follow Win's advice - and try very hard to think positive about your future. Come back here often. Be well Carolyn

Louise - You are amazing! 16 years! I can't even begin to imagine that. You are a tough little cookie. Having read your posts for the past year and a half or so I want to let you know that you are a very inspirational person. I can't imagine how many people you have helped over your 16 years - although, I know there was a lot of hurting in there. For sure you have definitely gotten stronger each day. Remember that, too, when you are thinking about your dad, aunt, and uncle. It hurts but you are strong enough to manage those things. Take care of yourself. Think about your next 16 years. Much love, Carolyn

Hi Davie! Great subject and one I've been embarrassed to talk about. So glad you brought it up. When I first got home I was so scared to sleep as I was sure there were ghosts in my room. I even swore I heard voices. I did have my sah in the bedroom while I was sleeping so I think that was part of it. Then my son brought in fleas from a job he had outdoors. You should have seen it. I was usually the one that never had them bother me but, of course, maybe medication, they picked my ankles to rest on. I was so scared and paranoid that I had to powder everything in the house. It looked really weird and I would have probably been put in an institution if anybody but my family saw it. Then it was spiders, etc etc etc. Oh...and mice. When I can't sleep I used to come downstairs and mess around on my computer. Unfortunately I happened to see a little mouse race in, grab a piece of cat food and run back out. I was petrified enough that I won't come down anymore. I'm about a year and a half out so am mellowing out a little bit. Thank God! You'll be better. Just try to say to yourself that it is a leftover of your SAH. I too wake up at night still (not always) but mostly because my ears are pounding so hard that the volume wakes me up. Don't put that in your head as something that might happen. I'm just weird. Ask Win. WONDERFUL picture by the way. It is so special. Baby adorable. Hope you feel better Davie. Keep coming hear and join the banter. There are probably lots of threads relating to fear. Love Carolynusa

Hi X - So, so sorry to hear that you have been having such scary experiences. Everything you mentioned hits home with me - but this is about you - When you are 100% feeling better (yes you will be) we can talk more about each piece of this but, in the mean time, try very hard to be positive. Take the greatest care of yourself. Money is not nearly as important as you are. All of that petty stuff can come later. Keep us posted please. Wishing you the very, very best Carolyn

Hi Davis - For a while I felt like I had a herd of ants crawling through my head. It was so weird. Plus it seemed the area where surgery was performed (clips, coils, shunt) would suddenly get hot. I didn't know what any of it meant until I came on this site and discovered other people talking about the same thing. My surgeon also assured me it was normal. Mine has been a little over a year now and most of that has stopped. If you go outside in the sun I would suggest wearing a hat and sunglasses as light and heat doesn't seem to go well with head injury. It's true, however, that you should see your doctor if you are bothered by the sensations. Don't be scared. Take care and come back and visit. The people here are wonderful to talk to and help a lot just in knowing that other people feel a lot of the same things you do. Hope you feel a million times better. Make yourself priority number 1 and keep asking doctors questions when you feel nervous. Love and good feelings coming your way. Carolyn

Hi Code - I get headaches every day but surgeon said I would get headaches and other annoying symptoms (ears, etc.) for about 2 years when I should be healed enough to live with symptoms without noticing so much. I think most of my headaches originate from surgeries (coiled, clipped, for clipping. When light hits my right eye or my head gets too hot, especially on shunt area, I get a worse headache. I also get headaches from stress or excessive noise. I have never associated my headaches with my shunt. The worst pain seems to come from the scar of being coiled. As Daffs said so well - I do notice the shunt when it is draining but it does not cause headache. I don't worry about it. Love - Carolyn

Macca - a month or two after my head went nuts I looked online for a support group. I've never been much of a support group kind of person and you will almost never see me corresponding online with people I don't know....BUT... I found this site and I believe it virtually saved my life. (the second time-the first being my wonderful surgeon) . I remember so well reading my first post - it was yours. I was struck at how eloquently you wrote your message in a sincere, thoughtful, and loving way. I've told you before how much you meant to me and I know many people feel the same. I am SO happy to hear this is your 5th anniversary. I believe we here at BTG are so grateful for your kind words and wisdom and wish only the best for you for many more years. Much love, Carolyn

Hey Code! You and I are a couple of the only USA people here. (Illinois) We've got it going on! We're cool. We're far out! So....you have to stick around and prop me up in here. Especially with that Win woman...she keeps stealing my chocs. Oh...by the way, you might want to show Win a little about roping...I don't think it's working out for her very well. So...I read your posts and I can instantly feel how frightened and depressed you are about your shunt. You break my heart that you so strongly feel those things. Probably told you before but not much stops me from repeating myself. Lol. I'm a little over a year into my SAH. Just popped up on me early one morning. I missed it, thank God! Guess I missed it for at least a month afterwards and am pretty glad for that. I had a bleed and they found 3 more aneurysms (I know yours was different but bear with me). They ran a coil up through my femur and stopped the bleeding. Then they decided to "clip" the other 3 so had to open up my head to do that. Then they put a jar on the floor and my husband was appalled to find out they were checking to see how much fluid was draining. They didn't really like looking at that! lol So...in went the shunt. About 5 weeks later I woke up and eventually was allowed to see myself in mirror. Head shaved. Giant scar where they sawed my head open (by the way...none of these last few things has anything to do with shunt...I'm getting there) and a weird hump on top of my head. I looked GREAT! jk I had no idea what any of this stuff was about until maybe 3 weeks later. The shunt mystified me the most. How odd to have some kind of hardware popped into my head. oops...forgot...I also have a couple of metal plates up there somewhere. I think I was more fascinated by my haircut than finding out about the other things. So.....come home I did. (Yoda speak) The shunt bothered me for a while as it was sore. I had a little trouble with my pillow pressing on it. It's SO much better now! If I poke around on it I will feel it there so have learned not to poke around - lol. But...it really is so much better. Most all of what I went through in hospital is much better. I don't really worry about my shunt anymore. It's up there draining you-know-what out of my head. I trust my surgeon and doctors who followed when they tell me not to worry. I DID worry for a while though. I believe several doctors and my surgeon told me I would know if something was going on with the shunt as I would probably get a headache or maybe dizzy. I would be SO happy if you could just bring the fixation/terror down a notch at a time. See that you will most likely feel better and better every day. There will come a day when you will realize you have almost forgotten you have a shunt. You seem so smart and like a very neat guy. You're young (to me..and especially to Win - lol). I hate to know that you are out there in the tumbleweeds waiting for the shunt to fail. I agree with others when they say it's not always great to research the h... out of the internet. It can often be so gloomy. People always love to share their gloom. Don't buy into it. Think as positive as you can. Talk here and see how other Shunter's feel. Please don't panic. You are a great guy and are smart enough to work through this. Keep it up Code. Step by step. If you are worried or scared see a doctor. Keep asking your questions until you feel you are understood. Next time I talk to you I would like to hear you singing "Amarillo by Morning" and feeling better about your health, etc. Much love and concern for you - inch by inch Code Caroyn

Oh Tracie! I forgot to tell you that Win charges a box of chocs for every song she sings! lol - not really. Good luck, little girl! Carolyn

Wow Tracie! You had quite a run of trauma in what seems like a very bad couple of months! So glad you are here where you can share your story, your feelings, your sad and happy days. Always try to think positive about yourself. Take one day at a time. Rest (naps) are great for me. Never feel bad about taking the time for that. One of my favorite sayings is "Act as if... Act as if you are feeling better. Act as if you are healing with each new day. Act as if you feel great when you get up in the morning. It works! Don't feel bad about crying. I cry frequently when I run into somebody I knew "before". But, you know what? They still like me! Weird shaved head haircut and all! Please follow Win's advice about being positive... and singing. Whistle if you can. I catch myself doing that a lot and then have to calm down my ears....lol. Come to the Green Room or post your concerns in any subject that looks like it might apply to you. Or both! Someone always sees it and will respond with great care for you. Okay....these past 2 months are over now. Focus on healing - step by step. There is life ahead of you. This too shall pass. Sorry for writing so much...I always do. lol. I certainly hope you feel better and better. Let us know. Much love Carolyn

Hi Andrea - you young little thing (as compared to Win anyway - lol) I'm so sorry that you had to experience an SAH. I believe that it's not uncommon for doctors to diagnose symptoms as Migraines and that is unfortunate. You're so early into the healing process. Make sure you get a lot of rest and drink water as you can. If you have any concerns please make sure you see a doctor - even if it just to ease you fear. Drop in here often. You will see that a lot of people went through what you did. Sending positive thoughts your way. Step by step Andrea. Love, Carolyn

Hi Elizabeth. You sound very frustrated and I'm sorry for that. I'm sure your husband is just as frustrated or even more. My husband is retired so he has been with me every step of the way. It took a toll on him though. He is older than me and all the stress and work of taking care of me wore him out. I miss my job too. It wasn't as dramatic as your husband's but it was what I loved - after 30 years of doing much different other things. When I go into one of the new places I have worked I will admit I often cry. I "get" what he is going through not being able to do the things he used to. I'm amazed that he can even do the things he can! That's somewhat great (in my opinion) but he needs to heal. Sleep and some kind of rest is good for him. It helps to heal. It took me several months to able to follow a book again and I was always an avid reader. Maybe he can continue to try to read if he had a book that kept him interested. I had to kind of change what I read as I had times following. Maybe he can learn to cook or bake simple things that others will rave about. That is chemistry after all. He will find something. Give him more time to rest and heal. I'm 62 (oops! 61 - Birthday in a couple days so forget - lol) and I have a hard time still (bleed last June) but I feel like I'm getting stronger and I believe your husband will too - and you. Be patient and love him as you have. My surgeon says after about 2 years it will seem much better...day by day. By the way, when Win mentioned she likes to eat, she left out the fact that she eats mostly chocolate. lol Take care Carolyn

Hi Gillian. I'm Carolyn. Perfect timing for me as I have been talking to my surgeon (and anybody else that will listen to me) about how long it will be before I feel better. I had my Sah June of last year. It was a bleed so I have clips, coils, shunt, etc. The whole enchilada! (sorry - USA saying lol) I have slowly felt better in some areas for instance I can now read as I couldn't follow books for several months after sah. I can talk, talk, talk and make better sense than before. lol. My memory for old things (like Win - haha) is remarkable. Not so much the new things. Anyway...I had an angiogram last week and my doctor was so excited. He says it usually takes about 2 years before you start feeling comfortable with yourself and you will not be so upset about your head and some of the symptoms and irritations you feel now. I believe him as he has never let me down yet. Keep taking one step at a time. Try not to get angry or depressed as, day by day you will begin to feel better. Any symptoms that frighten you should be taken to doctor. Keep posting here. Try not to be scared. Lots of people here and we have made it through. Best of luck to you! Keep your chin up and hope to see you continue to post here. We all care for you. Love, Carolyn

hello Code warrior - my name is Carolyn. My sah was in July of last year. I was in coma for a month so had no idea what the heck they did to me or even what an sah was. I had some coils, some clips and then they discovered that I was losing too much fluid so would have to have a shunt. I don't remember them doing that either - thank Goodness! The shunt really bugged me for months and I am aware of it still but I think I am still early in healing. Like Win (the singer) I also notice it more when I am stressed. Try to keep your mind on other things and you'll think of it less. When you feel it don't worry as it is normal for that. If it really starts bothering you though you need to have it checked. This will ease you fear. By the way...I was so worried about the line that goes to my abdomen that I nagged the doc until they ex-rayed and proved to me that it wasn't pinched anywhere and that it was working fine. Don't feel bad about asking questions. Glad you came here - it's a very nice place to be if you have questions or even if you want to join Green Room conversation. It helps. Best of luck to you Carolyn H

Hello Gary! I know what you mean about the site helping you. I was so freaked out when I came home from hospital I thought every little twitch, pain, etc. was going to make all of the nightmare happen again. Also totally know what you mean about typing your story or keeping up with posts. Even today, almost 1 year later, sometimes I just can't post or do a lot of other things - so I go to bed again. lol WAIT! I don't want you to think I am the same as I was a year ago. I have definitely improved - by a lot. A lot of my symptoms are from medications. Don't worry about rushing your story out. I read posts for a couple of weeks before I was brave enough to sign on. Take your healing one day at a time. Don't get angry or frustrated with yourself as you try to get better. Believe me...I know about that too. When you get better and grab the hope you have inside of you, come back here and share your concerns. You will get a lot of support and it will help you "get" that you can rise above all of this and settle in to feel better. Last of all - There is a great, silly, positive woman on this site, Winb that can cheer you up at any time. Try to read her posts. She will tell you to sing and it has helped a lot of people. Take care. Take it easy. Don't rush yourself. Think positive. We will help you. Love and positive thoughts being sent your way. Carolyn