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lisaeh14 03-09-2013 09:01 AM

No Answers
 
Over the last two weeks, I have had two "episodes." I don't have much respect for doctors, so I did nothing but go to bed with the first one. While teaching Thursday, I had another and the school sent me home. I went to see my family doctor and he barely talked to me before calling an ambulance. My doctor, friends, ambulance attendants, ER doctors, floor nurses and doctors all agree I had a TIA. CT scan, artery scans and MRI scans showed nothing. Between discharge and leaving the hospital I had another 'episode.' I came home from the hospital with R sided weakness and trouble with speech. I assumed it would be better this morning, but I was wrong. I haven't recovered from yesterday. I am at a total loss of what to do or who to trust. Thank you for your thoughts and suggestions.

growagourd 03-09-2013 02:45 PM

Re: No Answers
 
You need to go back to the ER with the stoke symptoms you describe.

Anytime you have these symptoms, immediate medical attention is necessary. Your previous episodes could have been the pre cursor to a stroke. The symptoms are:

FAST which means FACE, ARM, SPEECH AND TIME. If your face is different, your arm or leg is impaired, your speech has changed then TIME is of the essence in treatment.

While I understand your feelings about doctors, you do not want a stroke to go untreated. Please let us know what happens next.

lisaeh14 03-10-2013 02:34 PM

Re: No Answers
 
I will follow up on my symptoms. When I left the hospital, they said their was nothing more they could do and to make an appointment with a neurologist. I am following up with my doctor. No worse or better today. I am hopeful the aspirin they have me taking now is helping to keep the damage from getting worse. Thank you for responding. I will let you know what happens with the doctor.

cactus al 03-10-2013 07:44 PM

Re: No Answers
 
Hello Lisa

I was taken back by the hospital and testing. However we of the stroke board realize just
How critical it is to pursue your symptoms. I was orig diagnosed as having splnal problems until a few hours later the doc said I had a ischmemic stroke.

The stroke board has many people with a different take on their stroke. Just be aggressive on your search for the facts

I am a former hoosier so I want the best for you. Keep us updated and keep the spirits and attitude

Best to you

keep the faith

Allen

survival sue 03-10-2013 11:13 PM

Re: No Answers
 
Hello Lisa,
Prior to my two strokes (10/11 and 11/12) I had been to the ER at two different hospitals because of severe headaches, so bad I was in tears. Both times I was told that I was having anxiety attacks. Both strokes were ischemic and caused by blockages in my carotid arteries - left side @ 96% and right side@ 60%. I never went to the hospital when the first stroke happened and blamed it on stress. With the second stroke I went numb in my cheek and arm, only for a minute but I felt very shaky so I went to the ER at a new medical center near our home.

They immediately did a CT Scan, which did not show a stroke but did show the severely blocked arteries. They thought I had suffered a TIA but kept me for observation and further testing. I had an MRI done that night which showed I had indeed had a stroke and that the MRI showed an older stroke in the same area, on the left side of the brain.

I had surgery on the left carotid three days later and was told by my surgeon that he found two big pieces of plaque that were ready to come off. If they had, I would of had a massive stroke.

So the lesson here is, don't be like me and ignore symptoms because the hospital didn't respond aggressively. If I had gone to the hospital when my first stroke happened, they probably would have performed the surgery then, when I was much stronger. There then would not have been a second stroke which left me with far more damage.

Listen to your gut and advocate for yourself. Don't forget, the doctor is the service provider and we are the paying customer!

Good luck to you and keep us posted.
Sue

lisaeh14 03-11-2013 07:13 AM

Re: No Answers
 
I see my doctor today. I have had MRI's (spells over the last two years, but this is the worse), CT and ultra sound on my heart and arteries. All were negative. They want me to see a neurologist because there are more persistent tests to show blockage in individual veins. I'm afraid to take time off work to have them tell me they don't know either. Do any of you know of an excellent stoke center, that will work until they find the cause?

Love this statement Sue: Listen to your gut and advocate for yourself. Don't forget, the doctor is the service provider and we are the paying customer!

growagourd 03-11-2013 11:54 PM

Re: No Answers
 
I encourage you to follow the recommended follow up with the neuro. Keep with it until you have some solid answers. It sounds as if you have some underlying issues that need to be identified. Episodes as you describe often lead to more dangerous events, that you must prevent if at all possible.

I imagine many of us have stories about the multitude of tests and referrals, and new doctors we have seen in the search for the answers we need. I know I did. My instincts convinced me to seek another opinion from a whole new team of doctors. I am so happy I did. There are really good doctors out there that may be a better fit with you. Don't be afraid to see another doctor anytime you are not sure. Being a proactive patient takes some practice and some guts at times.

Knowledge is power. Prevention is the answer and proper treatment makes all the difference in the world. We all hope you can find the answers you deserve. Keep us posted!

ladybud 03-12-2013 12:04 AM

Re: No Answers
 
An evaluation by a hematologist is also a good idea, as some people have factors in their blood that predispose them to clots and they require more aggressive treatment than just aspirin to prevent further strokes. I would aggressively search for the cause of these. TIAs don't show up on any tests. They often precede a full blown stroke, so TIAs should always be taken seriously and the cause identified, hopefully before a stroke occurs.
You might consider the Mayo clinic if you can't get answers locally.

lisaeh14 03-12-2013 09:05 AM

Re: No Answers
 
I went yesterday to see my regular doctor and he is 100% sure I had a stroke. He is sending me to another neurologist in a neighboring town. He also mentioned the clotting possibility and that TIA's don't show up on tests. Since my symptoms have not improved (or worsened- I don't think), he believes I had a stroke between the time of discharge and leaving the hospital. I have promised to take all his advise. I am now off work, have a handicap tag on my car and the depression of the reality is sitting in. I was told to wait until I heard from the physical, occupational and speech therapist, but I'm thinking about calling them since I have not heard a word since leaving the hospital.

My doctor is hopeful the neurologist will be able to find the source of the clots or at least point us in the right direction. I imagine you all can understand the comfort I feel in his using the word 'us' in this.

Thank you all so much!

Meemashell 03-12-2013 11:57 AM

Re: No Answers
 
Hello lisaeh14,
I had a stroke December 3, 2012 and have been going through the stroke clinic and a cardiologist since January. I have had a battery of tests, as they first throught I had a hole in my heart, which now they have confirmed is not the case. I have been under a great deal of stress and very depressed since I had my stroke. My neurologist also thinks I had one upon returning home after 10 days in hospital, and possible another one 2 1/2 weeks ago. The first stroke hit my cerebellum and has left my left arm and hand in a constant tingle, that I have getting physio, as well as massage therapy for. I have been told that since I do not have a hole in the heart, the cardiologist has no need to further see me, which is great! However, I was just told that now the stroke doctor also has no need to see me at this time, as all results have not shown why, or where the blood clot may have come from. All my arteries are clear/clean and I was told that in some cases they just don't know the answers. I was told that I was going to see a hemotologist but still haven't heard when. Everyday, I find myself stressed and worried about having or could have another stroke. I am working on how to stop myself from thinking about this. If you are not satisfied with any care or answers....I urge you to continue to seek out. I have found these boards very helpful and am now working with a "life coach". I believe you had all the strokes you speak of, as I too have had the exact same only on the left side...I wish you and the best and hugs to you!!!

growagourd 03-12-2013 01:44 PM

Re: No Answers
 
Hello again,

The depression and anxiety over the thought of another stroke is all to real. Please include treatment for both your medical and emotional aspects of stroke, as depression can really take hold when we are focusing so much on our physical well being. Fore me I worked so hard on recovery from my strokes, I put off my deepening depression for years. After addressing that, I feel much more in control of these strong emotions that are natural following such a huge event in your life.

My strokes also left me with kidney failure, severe sleep disorders, heart attack/heart disease, and very difficult to control blood pressure. At this point, I am seen regularly by a neurologist, cardiologist, and nephrologist (kidney specialist), plus my family doctor for the basics. It did take some time to separate all my symptoms and seek proper care for each of them. While they are all very different, I do have one doctor who oversees all my medication to avoid any that would cause further kidney damage. It is a balancing act that we must learn to manage. Pulling together a team of doctors that you like and respect can take some time, but it is well worth it. Keep pushing until all your questions are answered to your liking.

Time tends to allow us to loose that fear of the "big one" coming soon. While you are there, please arm yourself with as many preventive measures you can, to remove some of those fears. At first sign of anything questionable, you get yourself immediate help. Make sure your family is aware of the warning signs, and knows exactly what to do if you begin to display any of them. FAST..Face, Arm, Speech, and Time. If you see any of these signs, TIME is of the essence. Call 911.

This is a trying time to have to do all these things. Hopefully you have some support from friends or family to help you with these decisions. In the mean time, we are here to help.

max55 03-13-2013 08:39 PM

Re: No Answers
 
You defiantly have to take charge and manage your own health care because no one else is going to do it. Don't blame things on doctors, if you are not satisfied with yours then find a new one. I had to find a new primary care physician - glad I did since the new one had the time to spend time with me and talk me into following up with a Hematologist. Advanced blood tests showed that I have a rare genetic blood condition that does not break down clots like it should. I am now on the blood thinner Warfine. I was only 45 at the time of my ist 2 years ago and do not expect another one.

Followup, ask questions, demand answers. Its good to move on and get back to your life but make sure you know all you can to prevent another one ist.

lisaeh14 03-14-2013 01:17 AM

Re: No Answers
 
I less than 12 hours I start Speech and OT. There is a mix-up with the referral to the neurologist, but I hope to clear that up today. My speech is improving and I was able to show emotion yesterday. First time in a week...loved it!

I know I'll be tired this evening, but it's a good tired, right!:)
This thread is such a blessing to me. It is so helpful to chat with a community with similar issues. It's hard for people to understand, who have not experienced these issues.

I am finding some people, in my 'circle,' are nervous about seeing me since the stroke. Most of the time I understand their fear or uncomfortable feelings, but it still hurts. My circle is just a bit smaller right now and I love them all.

Blessings to all!


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