carebearzzz Posted July 15, 2006 Share Posted July 15, 2006 I found this board today and I'm not sure if it's the place to post a question like this but I need some support. Just found out today that a neurologist thinks that I may have had a brainstem stroke. I am having facial numbness on the left side of my face and it's been this way for three months now. It happened back in October and went away after a month. It came back this April. I am not having many other symptoms and have had two MRIs so far and am scheduled for another next Friday and another visit to the neurologist the following Monday. I am a single mom, 36 years old. I lost my husband unexpectedly two years ago this Saturday and am just so scared that something very serious is wrong with me. Does anyone have any advice? I have not had time to do much research on brainstem strokes yet and what I did look up frankly just scared me so I stopped. I'd really like anyone's opinion or advice. Thank you! Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted July 15, 2006 Founder and Owner Share Posted July 15, 2006 Hi, first, I would like to welcome you. Brainstem strokes can be that most and least debilitating type of stroke. Mine caused quadriplegia and loss of speech while I know others that you can look at and not see signs of a stroke at all. I'm not sure what happened to you but staying close to your doctor and maybe a neurologist is going to be in your best interests. My advice to you is to write everything down that seems different to you and report it at your next visit. Be aware of the stroke warning signs, which can be found at http://www.strokeawareness.org/ and have a plan of what to do if you think that you are having a stroke. My stroke started with symptoms on a Friday night and it was not until Sunday night that I had my stroke . I was having TIA's and had absolutely no idea of what was going on. Everybody that you needs be aware of is on that website. Good luck! Link to comment Share on other sites More sharing options...
bstockman Posted July 15, 2006 Share Posted July 15, 2006 Dear Carebear, there are all types of strokes, some from very minor with little or no deficits to major ones. I had a clot on the right side. right internal capsule. I was left side paralyzed. I have over 90% use of my left hand and I walk with a limp but un aided. I do have some visual and cognitive deficits, as well as fatigue easier. There are many here that have made good recoveries.... way more than expected. Seeing the neurologist and following up is what needs to be done, the MRI and neurologist will know hopefully what is going on. If a reason can be found ... steps can hopefully be taken ro prevent any further strokes. whether it be medication, or whatever. They never did find out why I stroked. We can give you support and hopefully answer some questions, but we are not Dr's. we can tell you that recovery can be slow but that many have gone way beyond what was "predicted" and that recovery does not stop. We have many young mom's with children here that are survivors, you are not alone. and you will be welcomed to this group with open arms. Link to comment Share on other sites More sharing options...
fking Posted July 15, 2006 Share Posted July 15, 2006 Carebear, I'd like to welcome you too, and make you feel easy about being here among many, many stroke survivors. Your first reply came from the head man himself, our CEO Steve. We are so glad you found this site, he has already given you first hand advise. Your situation sort of follow his. I hope the doctors can read the MRI's and determine what's going on so you won't continue to be scared. Any stroke is no fun and when the cause is not known to medical doctors, I can understand your concern. Hopefully, the next MRI can reveal some answers. You are in the right Forum for Brainstem stroke information. Also read some of the other Forums here. As Bonnie said, we are not doctors, but have members here with all kinds of strokes and like hers, some causes are unknown. Log in regularly to read the answers to any questions you have. I hope you can be diagnosed soon. Again you are welcomed to read all around in this Forum and the others as well. I do wonder if your husband's loss was a stroke? Mine was a brain bleed, left side affected. You will be in my prayers. Link to comment Share on other sites More sharing options...
carebearzzz Posted July 15, 2006 Author Share Posted July 15, 2006 Thank you so much to everyone for the warm welcome and support. I will be sure to let you know what the neurologist says on Monday. I just wish I did not have to wait that long. A couple of questions - I am trying to figure out if the MRI I am scheduled for is with contrast or not (with the dye). It has some sort of shorthand that has a c with a - (dash) above it and then the letters Gb. Does that mean with or without contrast, does anyone know? Also - how do you know if you are having TIAs? What does it feel or look like? My husband died of septic shock. He had his spleen removed years ago and got an infection in his blood stream (we thought he had the stomach flu). He died within 17 hours of first feeling sick and it was a huge shock. But, it was not a stroke. Thanks again for the support. Link to comment Share on other sites More sharing options...
jwatrous Posted July 15, 2006 Share Posted July 15, 2006 First, let me say I am sorry for all the pain you have experienced, and as a stroke victim, I know the seriousness of it, and you should stay close to your doctor to make sure you get the care you need GOOD LUCK, GOD BLESS, and keep us posted, - we are all in the same boat - there is strength in #'s :cheer: :chat: Hope to hear from you June :cheer: Link to comment Share on other sites More sharing options...
arogers Posted July 15, 2006 Share Posted July 15, 2006 Hi, and welcome! I am caregiver to my husband, and was caregiver to my mom. I can give you just a few answers! 1. the C with a line above means WITH 2. My mom was only aware of TIAs because her speech was affected. She knew when the words came out jumbled, she was having a TIA. The TIAs resolved themselves within an hour for her. Bill has mentioned that he felt a little "odd" a few times - but I've not been able to discern a TIA at any time. For instance last week one morning his bp was 172/102, heartbeat 125......20 minutes later bp and heartrate were both down - was it a TIA? Who knows. He didn't "feel well" but couldn't describe how he felt to me. 3. Strokes are as individual as people...I can compare my husband with others here and can see "in general" what some outcomes may be - but by no means does that mean he has any twins! 4. Knowledge is power.......even when it is scarey, I think we are better off knowing everything we can about strokes. There are things we weren't told that I sure would have liked to know, even though the knowledge alone may not have changed a thing I may have been able to experience less fear. I know you will get lots of help and support here and I'm glad you not only found the site, but that you are posting and asking the question! Warmly, Link to comment Share on other sites More sharing options...
fking Posted July 16, 2006 Share Posted July 16, 2006 Carebear, I can only tell you what I felt like when I had what I thought was a TIA. The doctor said no and the MRI didn't show any change, so I was kept overnight and released both times it happen to me. I had what seemed like less control of my functions, hands, arm, walking, etc. Mind you my stroke was a brain bleed and again I could say it was in the right brain.Supposely, a TIA is a mini stroke. Feelings and reactions could be different for each person. Your doctor that wrote the shorthand is the real source to ask what is meant by it. I don't think anyone here could interped what he wrote. I can't even read the prescriptions they write and sometimes, the pharmacist either. Sorry to hear of your husband's short and unexpected death once he was diagnosed. I can better understand your concern for yourself. I just hope the doctor can find the problem and you can begin to recover. Right now you just don't know, but we are here for you, we just don't know either. You got our support and someone else can comment on wether you blog or post here. I guess you edited that question out, I don't see it now. Link to comment Share on other sites More sharing options...
bstockman Posted July 16, 2006 Share Posted July 16, 2006 Hi CareBear c (with a bar over it)is with ( from wikipedia) the Gb ist the contrast they will use I assume. I tried to look it up but did not find the name of the contrast I did find a couple sites that had very good explanations of different types of MRI's. As Fred said usually TIA's don't last very long, and the signs and symptoms can be very subtle and generally don't last long. . This is a site that has information and symptoms of TIA's and other information: www.ninds.nih.gov/disorders/tia/tia.htm - 22k - Cached - More from this site - Save Link to comment Share on other sites More sharing options...
kirby Posted July 17, 2006 Share Posted July 17, 2006 Hi Carebear, Welcome to the site! It's surreal when smeone tells you you've had a stroke. Espically when your in your 30s. I was 32 I'm 34 now. The good thing about a stroke, maybe the only good thing, after you've had it it only gets better. And every stroke is different. Many people have them and don't even know it. God Bless <<hugs>> Maggie Link to comment Share on other sites More sharing options...
carebearzzz Posted August 2, 2006 Author Share Posted August 2, 2006 Hello everyone! Just wanted to give you all an update. I did have the MRI with contrast and the neurologist said she didn't see anything really abnormal in it. There is a "spot" but they don't know what it is or why it caused it and it's small enough to not really cause any problems. She had me get a bunch of blood work done and I see her again on Monday to go over the results of it. I feel much better about things right now and just wanted to let you know I'm doing better. Thank you so much for all the support and I will try to get back on in a week and let you know if anything was found in the blood work. Thanks again! Link to comment Share on other sites More sharing options...
bstockman Posted August 2, 2006 Share Posted August 2, 2006 Glad to hear of the results and follow up. And Thanks for coming back to let us know. We are here for you, whenver you need us!!! (((((HUGS)))))) Link to comment Share on other sites More sharing options...
carebearzzz Posted August 8, 2006 Author Share Posted August 8, 2006 Alright...another update. Got my blood test results back today and all looked good with the exception of the High Sensitivity CRP that she ran. It came back extremely high...21 when the normal is more like 3. So obviously something is going on and now I'm back to being scared and frustrated again. She basically said it could be anything from me being sick or having some sort of infection when I had the test run 2 weeks ago to having major heart disease or stroke risk to having something like RA or Lupus. I'm going to see my PCP doctor tomorrow to see what she says but as of now, I have to wait another week and get the test run again to see if it is still that high. They are also going to do a SED test. If anyone has any words of wisdom, I'd love to hear them! Carrie Link to comment Share on other sites More sharing options...
jwatrous Posted August 8, 2006 Share Posted August 8, 2006 :cheer: HI - you have found the right site for help and support - My first thought is that if your doctor is correct and you have had a brain stem stroke, you may need to do a couple of things like [1] get on S.S. disability if unable to work [2] get home help & [3] keep close tabs with your doctor on the progression of this stroke [4] GOOD LUCK, GOD BLESS & please feel free anytime to ask for help or advice June, a 20 yr. stroke survivor :2cents: :blush: Link to comment Share on other sites More sharing options...
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