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Hi everyone it's been 4 months and 6 days since my stroke. I'm very blessed and lucky that I have  recovered as much as I have, but selfishly I still want more recovery.

 

In shock once I found out what happened to me I also didn't have the classic stroke signs. I had a severe pain in the back of my neck one night that didn't completely go away with pain meds until the morning. That week I experienced a few minor missteps while walking, felt a little off balance then lost my voice out of nowhere by Wednesday late morning. I thought I had an ear infection so I went to an urgent care and they said the inside of my ears looked red and prescribed a round of antibiotics.

 

I retired to bed ealy that night not feeling right and woke up several hours later vomiting and experiencing a feeling of falling in the bed. The ceiling and floor seemed to have been switched on me. My wife thought it was vertigo and I tried taking meclazine went back to bed but it obviously had no effect. Woke up against n vomiting and the same feeling of falling again.

In the morning I woke up and was seeing double vision, extremely off balance I could barely make it to the bathroom so we called 911.

 

Waited in the emergency room for 13 hours they were so busy and nobody knew I had a stroke until a neurologist walked in and checked me.

MRI confirmed a blockage in a small bladder of vessel in my brainstem on the right side.

my family and I were in disbelief. I'm 49, 6'2" and  was 248lbs at the time of my stroke, this mornings no I was 222.4lbs. Prior to the strokes ke I didn't eat as healthy as I could've with a busy schedule, my wife the stay at home wife and a 3 year old. I have moderately high blood pressure for which I take Valsartan and Metoprolol, blood work a day after the stroke revealed my ldl cholesterol was 108 at the time of the stroke, hardly dangerous. And still have me on statins which I have read are very bad to take long term.

 

I couldn't stand up without help I would fall right over to my right, my double vision was awful, I had a little trouble swallowing and my voice changed a bit. Numb on my whole left side from my shoulder to my feet, numb and tingling on the right side of my head and right fingertips.

After just two weeks in rehab therapy I was walking with a cane, then a month after the stroke I was walking without any support at all. Therapists in Kessler were amazed at my progress and recovery, but I was very determined and focused, I worked very hard. I was being called the over achiever because I always wanted to do more than what they asked hoping it benefit me.  

 

One OT therapist said in her 9 yrs she had never seen any one patient progress the way I did. So I am thankful and realize I am very fortunate to make the strides I made in such a short time.

My vision has been getting better every few days, now the progress is steady but very small increments. Once fitted with prism lenses on my glasses my eyes corrected themselves enough after just one day that I didn't need the prisms anymore, it was remarkable.

 

My balance now is decent but not perfect, before I left Kessler after a month I couldn't stand with my legs together. Now 4 months later I can stand on one left for over a minute.

 

I completely changed my diet, have discarded anything in my house including soaps, toothpaste, dish detergent, deodorant etc that is not all natural. I've stayed away from any refined processed foods, anything with additives, and/or chemicals and limiting my intake of whole grains because I have discovered through research they are inflammatories and not only cause cancer but cause our bodies to make cholesterol to repair blood vessels that have been weakened or damaged from the inflammatory food we eat, stress, etc

 

As a family our diet is now all organic vegetables, lower sodium foods and lean meats. No processed junk.

 

I am doing everything and anything I can to try to be healthier and reduce my chance of another stroke or another health crisis. I have lost 26lbs since my stroke and a total of 38lbs when I was my heaviest at 260 several months before the stroke.

 

I had all kinds of issues getting out of Kessler included my blood in my urine which I had to get another cat scan and X-rays to rule out bladder cancer. It was from an infection caused by the 15+ temporary catheters I had to endure while in Kessler. So it's been a roller coaster ride to say the least.

 

I am almost done with my outpatient therapy and have to figure out a date to go back to work. I am a visual designer so I look at a computer display all day and am under pressure to come up with creative ideas and designs. I tire very easy, the fatigue sets in just after a few hours do not sure how I will be able to work 8-9 hours a day. I may also still retain the deficits I have and most likely will never be 100% so I'm starting to have anxiety about returning to work now that it's less than a month away.

 

Now I'm having some blood pressure issues that are probably caused by anxiety, the more I try and check it the higher it goes! It went as high as 177/110 the other night and I admitted myself to the ER. EKG was normal, bloodwork cane back fine. BP came down in it's own after 2 hours at 123/80.


I have this strange warm sensation on the left side of my chest/shoulder and it's been like that ever since the ER visit it never goes away. Not sure if it's another sensation from the stroke or if my numbness is changing etc. I'm still numb on the left side but I can feel this warmth whatever it is. I'm going to call my doctor when he returns from vacation in 4 days to make sure I don't have other issues and see if it's anxiety and fear that is causing my BP up now. In the morning it's usually under 110 and 75 but yesterday morning it was 120/81. I take my BP in the evening.

Sorry for such s long intro but I felt compelled to share my story.

 

I hope I can inspire others, share info and experiences and also learn and be inspired by all the members on this site.

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Do you know whether the brain stem stroke occurred in the lateral medula (PICA territory) or Pons (Vertebrobasilar)?  In my case, I had a aneurysm rupture in the VA-PICA.  Like you, I had a real stiff neck like almost rigid.  I had neck adjustment with my chiropractor.  My neck was like cement.   3 days later, I had a rupture in the vertebral harboring the PICA.  For this reason, I know that my territory was lateral medula.  As I understand, a stroke in the lateral medula (Wallenberg's syndrome) eventually recover with some stroke victims.  However, if it is real bad, death occurs with loss of respiratory failure or chocking from your tongue.  Like you, i have extremely high blood pressure (totally unexplained) where it can rise up to 190/130 without any anxiety issues.  (I am a really happy and calm person).  As I understand, an ruptured aneurysm in the vertebrobasilar is almost certain death.  (85%).  A stroke in the vertebrobasilar (Pons) leads to real serious disabilty like lock in syndrome.  I am just curious where your brain stem stroke occurred.  In my case, there was a variation in the location of my rupture where it is higher up adjacent to the Pons.  The cranial nerve VIII was affected which makes sense as it is at the location of the bleed.  I had a stroke affecting the nuclei VIII

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Would it be possible for you to return to work 1/2 days, and work your way up to full days, instead of starting at full days? Stroke fatigue can be a bear with which to deal with, and  your stamina is likely to be affected. You  have made a remarkable  recovery, and now you may need to let your brain rest.   Good Journey, Becky

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51 minutes ago, becky1 said:

Would it be possible for you to return to work 1/2 days, and work your way up to full days, instead of starting at full days? Stroke fatigue can be a bear with which to deal with, and  your stamina is likely to be affected. You  have made a remarkable  recovery, and now you may need to let your brain rest.   Good Journey, Becky

 

:hi:

 

Welcome!  

 

Like Becky wrote, stroke fatigue is awful!  I'm 21+ years post, and I have learned, (for me) that I have to get things done soon after I get up; when my energy's gone - it's gone.

 

I read the following, which explains it well: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

Wishing you well,

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1 hour ago, 2Fight said:

Do you know whether the brain stem stroke occurred in the lateral medula (PICA territory) or Pons (Vertebrobasilar)?  In my case, I had a aneurysm rupture in the VA-PICA.  Like you, I had a real stiff neck like almost rigid.  I had neck adjustment with my chiropractor.  My neck was like cement.   3 days later, I had a rupture in the vertebral harboring the PICA.  For this reason, I know that my territory was lateral medula.  As I understand, a stroke in the lateral medula (Wallenberg's syndrome) eventually recover with some stroke victims.  However, if it is real bad, death occurs with loss of respiratory failure or chocking from your tongue.  Like you, i have extremely high blood pressure (totally unexplained) where it can rise up to 190/130 without any anxiety issues.  (I am a really happy and calm person).  As I understand, an ruptured aneurysm in the vertebrobasilar is almost certain death.  (85%).  A stroke in the vertebrobasilar (Pons) leads to real serious disabilty like lock in syndrome.  I am just curious where your brain stem stroke occurred.  In my case, there was a variation in the location of my rupture where it is higher up adjacent to the Pons.  The cranial nerve VIII was affected which makes sense as it is at the location of the bleed.  I had a stroke affecting the nuclei VIII

Yes it was the lateral medula area. Doctors explained it was a very tiny blood vessel that I was born with so that's why they say the blockage most likely occurred. And probably why I've been able to recover like I have. They're saying this type of stroke isn't very common and not seen that often. I know about locked in syndrome. Very scary. My wife and I are thankful and realize I am extremely fortunate  considering what it could've been. So you're saying the stroke has caused you to have high blood pressure? It's strange because while in rehab at Kessler my blood pressure would be so low at times (under 110/70) they had to skip blood pressure meds several times. So now that it's higher all of a sudden I was thinking it was anxiety caused by it to spike. Emotions def can play a role in affecting your blood pressure negatively.

 

How are you doing now? How many years has it been? Aneurysms are quite bad too, what happens to the blood, does the body absorb it?

1 hour ago, becky1 said:

Would it be possible for you to return to work 1/2 days, and work your way up to full days, instead of starting at full days? Stroke fatigue can be a bear with which to deal with, and  your stamina is likely to be affected. You  have made a remarkable  recovery, and now you may need to let your brain rest.   Good Journey, Becky

I will have to ask them regarding starting out slow although I'm not sure how that works with disability. Yes that's part of what I worry about my stamina. Yes my recovery has been remarkable, people look at me and say I look totally normal including doctors but they do not realize the deficits I still struggle with daily. Thank you

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32 minutes ago, smarshall said:

 

:hi:

 

Welcome!  

 

Like Becky wrote, stroke fatigue is awful!  I'm 21+ years post, and I have learned, (for me) that I have to get things done soon after I get up; when my energy's gone - it's gone.

 

I read the following, which explains it well: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

Wishing you well,

Wow thanks for the link, I read it and many of he comments too. That's a great analogy I'll have to use going forward. People don't understand. My sister-in-law asked me if I wanted to go to her children's graduation 4 hours away. Thought it would a nice get away for my family and I. Huh? Drive 4 hours one way? Is she insane? My wife doesn't really drive much and a 4 hour trip is not an option for her which leaves me to drive that far. Not to mention my 3 year old has never been in a car for longer than 30 minutes at a time. She's a premie born 3 months early at 2lbs 7oz so she has her own set of sensitivities. People just don't get it. My sister and I had a discussion the other day. She was away in Costa Rica while I had my stroke and didn't return unto I was out of Kessler rehab over a month later. So she missed out on me being confined to a wheelchair for over 3 weeks and seeing me at my worst. She argues with me saying surviving a heart attack is just as bad as surviving a stroke. Don't get me wrong, heart attacks can be debilitating too but I don't think the residual deficits are anywhere as bad as they are if you survive a stroke. Misinformed and ignorant I would say.

 

My wife who has been amazingly supportive through this and seen me firsthand also has commented a few times that I have made an almost full recovery so I should be thankful. I have almost made a full recovery? She doesn't feel what I feel on a daily basis and realize the emotional toll this has had on me physical issues aside. I'm thankful every morning when I'm able to get up out of bed and live another day.

 

I'm not even sure what percentage to put on my recovery at his point. I have friends asking me on occasion, "So, are you back to 100% yet?" They'll never understand I guess, it's very frustrating.

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So much of your story mirrors mine.  I am six years out of a brain stem stroke. You would think that I would have a ton of advice but it sounds like you are basically on good path and all strokes are different no matter how similar they sound.  I will however offer these few suggestions.  Remember a stroke is a brain injury and rest is as important to recovery as exercise. I have improved my BP with meditation, also recommend Reiki, Yoga and acupuncture,  remember to pamper yourself sometimes.  I wish you good luck with getting back to work,  it will be a huge challenge.

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Thanks Gerard55. Care to elaborate more about  your specific BP issues that you had? I'm just wondering if this inner body warming I've felt for the past week has anything to do with my stroke and elevated BP or if it's anxiety etc.

 

My whole body feels very warm ever since I had that spike in my BP yet I'm not running a temperature, it's strange and a little concerning although I keep thinking its post stroke related.

 

I have been meaning to try Accupuncture specifically to see if it would help the numbness on my left side and right side of my head/face.

 

I'm currently experiencing burning stabbing pains in my face, it comes and goes looks like it is most likely CPS, Central Poststroke Pain I am now experiencing. Did you ever experience that?

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Benni   
1 hour ago, ufusco said:

 

My whole body feels very warm ever since I had that spike in my BP yet I'm not running a temperature, it's strange and a little concerning although I keep thinking its post stroke related.

 

 

Hi ufusco -- welcome! A stroke can mess up your body's "thermostat".  I live in Newfoundland Canada where it stays cold for a long time. I used to 'freeze' if it got below 80 degrees in the house. Now I'm ok if it's below that. I sleep hot at night also -- many nights I run a fan on me even if it's 40 degrees, or lower, outside. And, no, they're not hot flashes. Already been there, done that for many years. This warm feeling is continual.

 

In a way that's good for me -- no more shivering when everyone else is warm!

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7 hours ago, ufusco said:

Yes it was the lateral medula area. Doctors explained it was a very tiny blood vessel that I was born with so that's why they say the blockage most likely occurred. And probably why I've been able to recover like I have. They're saying this type of stroke isn't very common and not seen that often. I know about locked in syndrome. Very scary. My wife and I are thankful and realize I am extremely fortunate  considering what it could've been. So you're saying the stroke has caused you to have high blood pressure? It's strange because while in rehab at Kessler my blood pressure would be so low at times (under 110/70) they had to skip blood pressure meds several times. So now that it's higher all of a sudden I was thinking it was anxiety caused by it to spike. Emotions def can play a role in affecting your blood pressure negatively.

 

How are you doing now? How many years has it been? Aneurysms are quite bad too, what happens to the blood, does the body absorb it?

I will have to ask them regarding starting out slow although I'm not sure how that works with disability. Yes that's part of what I worry about my stamina. Yes my recovery has been remarkable, people look at me and say I look totally normal including doctors but they do not realize the deficits I still struggle with daily. Thank you

 

 

For ruptured aneurysm, it is not so simple.  It depends on location and thickness of subarachnoid hemorrhage (SAH).  As you said, blood in the subarachnoid space is toxic.  In the ICU, you are treated with drugs to dissipate the blood. It is why I had to stay in ICU for 3 weeks.   With the blood, there is brain swelling from the pressure. The blood filled the space between the brainstem up into the ventricle. I had a Bleed Level 4.  After approx 5 days, vasospasm occur.  Think of them as mini TIAs.  If it is bad enough, it will cause a ischemic brainstem event.  In my case, it was a stroke of VIII nuclei. I have a central nervous disorder of vestibular cochlear nuclei so I have problems with balance, vertigo, double vision, single sided hearing loss.  Additionally, I have real high blood pressure which I never had before.  It is not stress related as I will wake up from a restful sleep and take my blood pressure.  It can be as high as 180/120.  So, I am currently taking BP medicine (Hyzarr and Amlodipine).  It somewhat controls it but sometimes, BP will drop to low at 90/50.  

 

You and I have also something in common. On the surface, I look completely fine.  Most people do not know what it is like to have chronic vertigo.  I am curious of your fatigue.  Do you have problems walking up the stairs?  The reason is that it is a balance exercise.  I called it "imbalance - dizziness" which lasts for about 30 seconds giving me mental fatigue.  When it is really bad, you can see me wobble like I am drunk.  It will happen if I try to stand on one leg.

 

 

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your story is an amazing one. Some of the symptoms  you experienced were similar to mine. I also had a brain stem stroke and all of what you have regained in amazing. Keep up the good work!!!! 

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3 hours ago, Benni said:

 

Hi ufusco -- welcome! A stroke can mess up your body's "thermostat".  I live in Newfoundland Canada where it stays cold for a long time. I used to 'freeze' if it got below 80 degrees in the house. Now I'm ok if it's below that. I sleep hot at night also -- many nights I run a fan on me even if it's 40 degrees, or lower, outside. And, no, they're not hot flashes. Already been there, done that for many years. This warm feeling is continual.

 

In a way that's good for me -- no more shivering when everyone else is warm!

As long as it's not caused by an overactive thyroid, kidney issues etc I'll be less worried about it. I was always too warm before now I'm going to think it's always overly warm.

 

Did your warmth start immediately after your stroke or afterwards like mine has 4 months later?

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2 hours ago, 2Fight said:

 

 

For ruptured aneurysm, it is not so simple.  It depends on location and thickness of subarachnoid hemorrhage (SAH).  As you said, blood in the subarachnoid space is toxic.  In the ICU, you are treated with drugs to dissipate the blood. It is why I had to stay in ICU for 3 weeks.   With the blood, there is brain swelling from the pressure. The blood filled the space between the brainstem up into the ventricle. I had a Bleed Level 4.  After approx 5 days, vasospasm occur.  Think of them as mini TIAs.  If it is bad enough, it will cause a ischemic brainstem event.  In my case, it was a stroke of VIII nuclei. I have a central nervous disorder of vestibular cochlear nuclei so I have problems with balance, vertigo, double vision, single sided hearing loss.  Additionally, I have real high blood pressure which I never had before.  It is not stress related as I will wake up from a restful sleep and take my blood pressure.  It can be as high as 180/120.  So, I am currently taking BP medicine (Hyzarr and Amlodipine).  It somewhat controls it but sometimes, BP will drop to low at 90/50.  

 

You and I have also something in common. On the surface, I look completely fine.  Most people do not know what it is like to have chronic vertigo.  I am curious of your fatigue.  Do you have problems walking up the stairs?  The reason is that it is a balance exercise.  I called it "imbalance - dizziness" which lasts for about 30 seconds giving me mental fatigue.  When it is really bad, you can see me wobble like I am drunk.  It will happen if I try to stand on one leg.

 

 

But what's strange is my BP after the stroke for over 3 months was very low while I was on BP meds. Now it seems uncontrollable for whatever reason even while on the same dosage of BP, what changed? Only thing I changed was switching to an 81mg baby aspirin from a 325mg full dose. I read in a study that there's was no difference between 81 and 325 in blood thinning ability in a study of 20,000 patients. Only difference was increased bleeding in the patients that were on 325 for the long term.

 

this same study showed the amount of aspirin required to thin the blood to prevent strokes was only 50mg. So 81mg is plenty. The less synthetic meds you have to take the better off you are when it comes to long term. Aspirin has very bad long term affects on our bodies. Don't get me started on statins which are also very bad for you to be on for an extended period of time. My LDL cholesterol the day of the stroke was only 108. My total cholesterol was 183. So I would like to get off the statin if I can one day. 

 

I can walk up my 13 stairs easily without having to hold onto the rail as long as my arms are empty. My stamina is fine in short spurts. It's extended activities that wear me down. After standing for 2-3 hours I'm pretty much exhausted. Another example is pulling dandelions in my lawn. 15 minutes of that and I was spent and needed to sit and relax.

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Thanks ksmith. I'm just extremely focused and I'm pretty intense. Anything I attempt to do is done with passion and perseverance are still also usually my downfall sometimes, I have OCD. I was just at therapy and noticed a gentleman there for the first time I'm assuming he suffered a stroke seeing he had balance issues. Therapist set him up on a machine did some reps while she was there and as soon as she left he slowed down barely doing any reps. Whether he couldn't physically do them or just intentionally slowed down and was being lazy I'll never know. But I have witnessed people slacking when the therapist isn't looking. This doesn't help them in any way honestly. Recovery is very hard work if someone is lazy it will be difficult to make gains.

 

So how are you doing now? Wow, you're younger than me. Terrible. I hope you have gained some recovery and will continue to do so.

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Benni   
41 minutes ago, ufusco said:

 

Did your warmth start immediately after your stroke or afterwards like mine has 4 months later?

 

It started after I got home (out of that freezing hospital) about 4 months -- same as you-- after the stroke.

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HI Ufusco and Gerard55 as well, Welcome to StrokeNet.

 

First of all, I am amazed the doctors didn't diagnose you right away.  That's inexcusable! Other members have told you the fatigue will linger; and in all likelihood the anxiety as well.  (Strokes tend to cause emotional side-effects.)  Is there a possibility that your doctor can forward your medical report to your disability insurance coverage and inform them that you require a longer leave of absence from your employment?

Hint: When people ask you if you're 100% "normal", just tell them you're a work in progress. lol

 

9 hours ago, ufusco said:

Doctors explained it was a very tiny blood vessel that I was born with

 

16 hours ago, ufusco said:

confirmed a blockage in a small bladder of vessel in my brainstem on the

 

 This is so bizarre!  Ufusco, did your doctor clarify if the blockage (a clot) occurred because of bleeding?  All your symptoms seem to be the typical symptoms of an aneurysm rupturing.....pain in the back of neck, the imbalance, double vision, vomiting.  Did you also have a severe headache?  Did you require surgery to clip (craniotomy) or coil (angiogram) the bulged spot?

 

When I read your Intro, my reaction was similar to Gerard's, except it wasn't a mirror image of my strokes, but definitely the mirror image of my Mom's.  We have the type of aneurysms that are called familial (congenital defect), so we're born with the weak spots on internal carotid arteries at the base of the brain (Circle of Willis).  My mom's ruptured aneurysm was on the right side, she was 64 years old, very similar to your health condition at the time of rupture, blood pressure slightly high, and slightly overweight.  She made a 100% full recovery within 6 months (according to the neurologist ??).  She still has a problem with discomfort in her left shoulder, but never mentioned a warm sensation.   Her blood pressure was higher and remains very high ever since the surgery (invasive craniotomy because our aneurysms have wide necks).  Her deficits were very similar to yours.  (I may have missed it if you mentioned memory problems which generally occur regardless of the side of brain injured.)

 

I'm the extreme opposite; my ruptured aneurysm was on the left side and the hemorrhage was very severe.  I didn't have any of the symptoms, was unconscious within a couple of seconds.  I was 34 years old, still the same height and weight as I've always been 5'1", 98 pounds.  The only thing that Mom and I had in common was a one-week wait in the Neurological ICU medicated to reduce the swelling in brain somewhat before they could perform the craniotomy.  I did have vasospasm after my 9-hour surgery, which caused an ischemic stroke on right side, so a second neurosurgery to remove the large clot.  Because my aneurysm was on the left side, my deficits were cognitive and major speech problems. 

 

Aneurysms are a horrendous problem in my family, 2 of my sisters didn't survive.

 

(and you thought your intro was lengthy) :oops:

Ufusco and Gerard, I'm glad that both of you have joined StrokeNet.  You'll receive a great deal of support and compassion here.  Looking forward to reading your posts.

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56 minutes ago, ufusco said:

But what's strange is my BP after the stroke for over 3 months was very low while I was on BP meds. Now it seems uncontrollable for whatever reason even while on the same dosage of BP, what changed? Only thing I changed was switching to an 81mg baby aspirin from a 325mg full dose. I read in a study that there's was no difference between 81 and 325 in blood thinning ability in a study of 20,000 patients. Only difference was increased bleeding in the patients that were on 325 for the long term.

 

this same study showed the amount of aspirin required to thin the blood to prevent strokes was only 50mg. So 81mg is plenty. The less synthetic meds you have to take the better off you are when it comes to long term. Aspirin has very bad long term affects on our bodies. Don't get me started on statins which are also very bad for you to be on for an extended period of time. My LDL cholesterol the day of the stroke was only 108. My total cholesterol was 183. So I would like to get off the statin if I can one day. 

 

I can walk up my 13 stairs easily without having to hold onto the rail as long as my arms are empty. My stamina is fine in short spurts. It's extended activities that wear me down. After standing for 2-3 hours I'm pretty much exhausted. Another example is pulling dandelions in my lawn. 15 minutes of that and I was spent and needed to sit and relax.

Ufusco,

 

Thank you for the response.  Balance is an equation of your vestibular system (inner ear), vision, and proprioception.  In my case, all three are effected after my SAH.  You pretty much described my issue with balance as challenging my balance system leaves me really fatigued.  I am just assuming that my brain is working harder than ever to keep balance.  Look at Youtube videos of toddlers learning how to walk for the first time.  Humans are the only mammals that can walk on two legs.  Some mammals can walk on two legs only for short durations.  It is a complex system.  It is not surprising that you get fatigued standing.  The good thing is that you have understanding so it is easier coming up with coping strategies as you continue to heal.  You may want to consider Neuro physical therapy. In this way, you can track your improvements.   

 

My BP was in the 130/70 prior but post surgery, it has been either high like 150/80 but can shoot as high as 180/120.  My NeuroSurgeon told me that it is something that he can't explain.  I have an appointment to see Professor of Neurology at UCSF next month. His area of expertise is vascular diseases.  He is Director of ICU stroke ward so hopefully, he will have answers.  

 

 

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8 minutes ago, Linnie said:

HI Ufusco and Gerard55 as well, Welcome to StrokeNet.

 

First of all, I am amazed the doctors didn't diagnose you right away.  That's inexcusable! Other members have told you the fatigue will linger; and in all likelihood the anxiety as well.  (Strokes tend to cause emotional side-effects.)  Is there a possibility that your doctor can forward your medical report to your disability insurance coverage and inform them that you require a longer leave of absence from your employment?

Hint: When people ask you if you're 100% "normal", just tell them you're a work in progress. lol

 

 

 

 This is so bizarre!  Ufusco, did your doctor clarify if the blockage (a clot) occurred because of bleeding?  All your symptoms seem to be the typical symptoms of an aneurysm rupturing.....pain in the back of neck, the imbalance, double vision, vomiting.  Did you also have a severe headache?  Did you require surgery to clip (craniotomy) or coil (angiogram) the bulged spot?

 

When I read your Intro, my reaction was similar to Gerard's, except it wasn't a mirror image of my strokes, but definitely the mirror image of my Mom's.  We have the type of aneurysms that are called familial (congenital defect), so we're born with the weak spots on internal carotid arteries at the base of the brain (Circle of Willis).  My mom's ruptured aneurysm was on the right side, she was 64 years old, very similar to your health condition at the time of rupture, blood pressure slightly high, and slightly overweight.  She made a 100% full recovery within 6 months (according to the neurologist ??).  She still has a problem with discomfort in her left shoulder, but never mentioned a warm sensation.   Her blood pressure was higher and remains very high ever since the surgery (invasive craniotomy because our aneurysms have wide necks).  Her deficits were very similar to yours.  (I may have missed it if you mentioned memory problems which generally occur regardless of the side of brain injured.)

 

I'm the extreme opposite; my ruptured aneurysm was on the left side and the hemorrhage was very severe.  I didn't have any of the symptoms, was unconscious within a couple of seconds.  I was 34 years old, still the same height and weight as I've always been 5'1", 98 pounds.  The only thing that Mom and I had in common was a one-week wait in the Neurological ICU medicated to reduce the swelling in brain somewhat before they could perform the craniotomy.  I did have vasospasm after my 9-hour surgery, which caused an ischemic stroke on right side, so a second neurosurgery to remove the large clot.  Because my aneurysm was on the left side, my deficits were cognitive and major speech problems. 

 

Aneurysms are a horrendous problem in my family, 2 of my sisters didn't survive.

 

(and you thought your intro was lengthy) :oops:

Ufusco and Gerard, I'm glad that both of you have joined StrokeNet.  You'll receive a great deal of support and compassion here.  Looking forward to reading your posts.

Linnie,  We are ruptured aneurysm survivors but I see your comment on your Sisters who did not make it.  As I survivor, I am so sorry for your loss.  At my recent charity Aneurysm support walk, half of walkers who raising awareness of love ones who passed away.  Please take of yourself.

 

Charles

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Linnie so sorry for your two losses that's very, very sad. I didn't have a bleed it was simply a blockage MRIs were done including those with contrast. They're referring to my type of stroke and what was affected as Wallenberg Syndrome, the blockage was in the lateral medula.

 

Yes laying in a hospital bed basically in the hallway for 13 hours was very frustrating to say the least. I raised hell to get them to put me in a regular bed. They were inundated with flu patients, but they didn't realize or confirm I had suffered a stroke until the next morning. 

 

It was not any clot that was thrown from my heart either. So it had to be plaque. I've done extensive research during my time off and have found very interesting information. Our bodies produce cholesterol and it is used to repair the inner lining of damaged, torn blood vessels caused by inflammation from stress, diet and other possible irritants. When this happens cholesterol fills the tears and causes the vessel to become smaller in diameter and become blocked over time once the inner lining heals over the cholesterol "band aid" This is why I have continued to pursue a healthier lifestyle overall in hopes I would avoid inflammatory foods, chemicals, additives etc. Now I just need to work in my stress and anxiety. I was never an overly happy person and I let too many things bother me.

 

I've also learned whole food vitamin C (not the synthetic junk called ascorbic acid created in a test tube) removes cholesterol from the inner lining of your blood vessels and actually repairs them preventing plaque buildup. . I encourage anyone to look it up. There are only a few company's that make a whole food vitamin C. I look for vegetable capsules as they don't contain any unnecessary ingredients.

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2Fight, I'll look into this neuro physical therapy, thanks.

 

well you're having the BP issues due to your surgery, I didn't have any surgery. So I was wondering whether mine was indeed from the stroke or something else. Because like I said for nearly 4 months after the strike it was very low and continued with my BP meds.

 

my balance was due to at least my vision and vestibular system. They adjusted the crystals in my ear once and I was then able to lay on my left side without feeling a sense like I was falling just like when I woke up from the stroke twice.

 

I also wonder if having my stroke in my sleep was a good thing or worse than if I was awake.

 

I hope the professor has some answers for you.

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13 hours ago, ufusco said:

Doctors explained it was a very tiny blood vessel that I was born with so that's why they say the blockage most likely occurred. 

Most brain stem strokes, including mine, were caused by some type of neck manipulation, ie chiropractors are biggest culprits.  In my case, my neck was very stiff so I pushed my head over and made it crack.  You are the first person I've met in over 20 years that had a brain stem stroke caused by a blockage.  Amazing!  Every stroke is similar but different.  The Stroke Network is a great place to meet stroke survivors! 

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1 hour ago, smallory said:

Most brain stem strokes, including mine, were caused by some type of neck manipulation, ie chiropractors are biggest culprits.  In my case, my neck was very stiff so I pushed my head over and made it crack.  You are the first person I've met in over 20 years that had a brain stem stroke caused by a blockage.  Amazing!  Every stroke is similar but different.  The Stroke Network is a great place to meet stroke survivors! 

Really?!?! Wow I guess why they said my stroke type was very rare and uncommon. Now I know why they kept saying that, ischemic brain stem strokes are rare and the fact that it affected a very small vessel that I was born with. Figures with my luck I get the rare type of stroke, great! :)

 

I just want reassurance that they didn't see any other tiny vessels that could pose an issue in the future, they said no everything else looked normal. But I wonder if they could really tell on the MRIs and imaging scans they did or they're just saying that.

 

Oh and note to self, no chiropractors, no neck adjustments.

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6 minutes ago, ufusco said:

I wonder if they could really tell on the MRIs and imaging scans they did or they're just saying that.

Actually, I was just wondering how they could tell that your stroke was caused by blockage in tiny blood vessels on the brain stem.  I think your suspicion is probably correct.  It sounds like they made an educated guess! 

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7 minutes ago, smallory said:

Actually, I was just wondering how they could tell that your stroke was caused by blockage in tiny blood vessels on the brain stem.  I think your suspicion is probably correct.  It sounds like they made an educated guess! 

I'm assuming my because there was no bleed. On the MRI the blockage showed up as a bright, circular, almost spark like image. I'm just going by what they tell me. This is NJ/NY area so I'd like to think the neurologists know what they're talking about. There was several in the hospital at the time who must've collaborated and made the diagnosis. I would hope they were accurate since they immediately put me on blood thinners, a 325mg aspirin, then a Plavix with an 81mg aspirin, back to a 325 and now an 81.

 

I have read about ischemic brain stem strokes so it is possible, just rare.

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Ufusco,

 

The high BP is not from the endovascular coiling for the rupture.  My Neurosurgeon told me that with SAH bleeds, there have been cases of high BP.  The medical community just does not know why.

 

As you can already tell, your post really intrigue me as it was the exact territory as myself - VA-PICA -> Lateral Medula - PICA territory of the Cerebellum.  My Neurologist mentioned Wallenberg's syndrome to me and mentioned that it is one of brainstem strokes that has good prognosis for recovery.  He told me that it was discovered over 100 years ago.  I found the description in my Grandfather's Medical Books published in 1920s.  It is considered a rare disease.  If you read case studies, it is exactly how you got it with a blocked small vessel.

 

You mentioned that you are interested in changing your diet.  A Neuroscience Professor friend of mine at Stanford forwarded this paper to me.  His interest is stroke recovery at a bio molecular level with Omega 3 diet.   https://www.ncbi.nlm.nih.gov/pubmed/25771800  To be honest, I only understand only parts of the paper.  I just need to sit down with my friend when he has time.  The other paper that you may be interested is this one. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670869/  My Neurosurgeon strongly told me to exercise.  These two papers are very recent.  In the past 3-4 years, researchers are finding major finding in Neuroscience and Neurology.  I am lucky that I live in the Bay Area with access to top Neurologist in the country from academic hospitals at Stanford and UCSF.

 

It is frustrating for me that just a minor stroke in my brainstem still causes problems even after 3 years.

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