Tag Archives: stroke

Health Recovery Update

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Dick walking at his treadmill desk while speaking to a colleague via Skype. He is now walking one full mile each day and he has lost three inches from his waist. (The painting is one his mother did of him at age 19.)

Last week we drove to Dauphin Manitoba and hubby dearest has his fourth CT scan. He had two while in hospital in June right after his inner right carotid artery dissection with a mild stroke, one Sept 16 and then this new one October 16, exactly one month later as the interventional radiologist wanted. Today we saw our family doctor to hear the news and update on how things are doing.

STABLE!

The CT scan shows no change in the last month. We were hoping to hear healing but we got stable. However stable is good because stable means we continue on the current course. No risky stent procedure unless he develops symptoms. Nothing getting worse. This leaves us in a holding pattern for now. Most watchful waiting, or as the new buzzword is, “active surveillance”.

We also went over the medications my husband is on and the doctor suggested waiting an additional month before trying to remove another of the three high blood pressure medications he was on after leaving the hospital. The worst side effects Dick had (swollen ankles, being sleepy, sudden exhaustion, sudden scary drops in blood pressure) are mostly (not completely) gone but there have been some up and down fluctuations while tracking his blood pressure. The doctor does not want us to change anything until we have a better idea how getting rid of the third blood pressure med is going by giving his bodya chance to settle down before trying to remove the second one. The blood thinners continue at least until one year past the stroke or the artery has healed.

We are also being referred to another neurologist on an elective basis, just a check in so there is a neurologist in the loop, not because we need anything from him. We will be seeing the same doctor who makes regular trips from Winnipeg out to rural communities. This will save us some long drives into either Brandon or Winnipeg. If we do need to go to Winnipeg for stenting we will have a neurologist there who knows what is going on.

There we are. STABLE. Nothing changes. Nothing better but more important nothing worse. Life will go on as it is. Stable is fine by me. Maybe we’ll get healing next time.

Health Update – Carotid Artery Dissection with Pseudoaneurysm

Yesterday we met with the radiological interventionists via telehealth conference. This meant we could have a face to face meeting with the doctor without driving all the way to Winnipeg. It was a weird turn of events for us because years ago it was my husband set up the first ever working Manitoba telehealth link. The meeting went very well and it sure was nice not to have to drive two and a half hours to Winnipeg for it.

We first shared the clinical details of my husband’s condition which is, at the present time is he has no symptoms. The minor stroke symptoms have largely resolved. We are now working to lower the number of blood pressure medications he is on in a slow way while monitoring to make sure the blood pressure does not go back up.

We also got a radiological description of the kind, type and size of the dissection my husband had and why the second CT showed his is “worse” than it was before. We also learned that in some ways the dissection is actually better. This image shows the basic issue we are dealing with.

There is a blood clot sitting where the tear shows the blood running into the space in this image. The mild stroke my husband may have had is probably due to when the tear first happened and that clot was forming. Part of the clot may have got swept up in the bloodstream and ended up lodging in the brain farther up possibly causing a mild stroke. That blood clot has shrunk. That is good news because the fact that it is shrinking means the artery is healing. The bad news is that the size and length of the blister like formation (often called pseudoaneurysm) within the artery wall grew a lot from when he had his first and second CT in hospital. It got both thicker (making the artery narrower) and longer.

The decision we have to make is whether to leave it alone and give it more time to heal or go for a stent. Such stenting is commonly done in cases where there is atherosclerotic plaques in the artery causing reduced blood flood as in this image.

Mayo Clinic Q and A: New treatment to open blocked carotid artery – Mayo Clinic News Network

However this is not the problem my husband has. In fact the CT and other tests he had done show he actually has almost no atherosclerotic plaques. Also because of the size and length of the “blister” he would need to have two stents put in a “pipeline” to fix it.

There is no doubt at all that the pipeline stenting works very well and is an excellent way to repair the damaged artery. The problem is this procedure is relatively high risk. The chances of this procedure causing a catastrophic outcome, like shattering the artery altogether or causing a huge stroke are, depending on what criteria you measure, about 5% (2-10%). In my husband’s particular situation, because of where the “blister” is, in a bendy part of the artery where it is hard to get good CT images, and the basket for catching clots can’t be deployed, we were told it is about 5-10%. There are also long term potential consequences such as the stent plugging up again, or breaking through the artery, and causing more damage over time.

Obviously, if the blood supply to brain is so poor it is causing symptoms, taking that risk is well worth it. Having a stent put in will probably fix it. The risks of the procedure are well worth the potential benefits compared to having not enough blood get to the brain.

What if there are no symptoms? In my husband’s case, he has no symptoms. Neurologically and physically he is perfectly fine. So should he take the risk of stenting or wait and give it more time to heal on its own? The risk is that the “blister” will continue grow and block the artery and cause a crisis down the road. He could die or have a major stroke before we can get to Winnipeg and get a stent put in.

After our discussion we, meaning my husband, the doctor and I, made a considered decision to do what my husband calls “watchful waiting” for now. The doctor wants to try to get a better feel for when and how the “blister” formed. Did it form after he got out of the hospital and now has stopped growing? Is it now healing after the whiplash setback? Has the “blister” been slowly growing the entire time and will it therefore continue to grow? In order answer to this question, we decided to have a fourth CT in two weeks. This is enough time after the first view of the “blister” to ascertain if the blister is growing or healing or staying the same. Until then, as long as there is no reappearance of any of the symptoms of the dissection we do nothing. If any of those symptoms start, we immediately get to the hospital.

After we had that visit, I had some words to use in a search of Pubmed and Google Scholar. I found some review articles on what to do. There just isn’t a lot of good large studies. Most doctors say go right in with the stent and fix it now in a controlled way. This approach is the absolute best for anyone with symptoms. However in people with no symptoms, if you choose to do nothing, the few studies suggest most of the time nothing happens or the artery heals completely or partially. People can walk around for years with that “blister” without a problem.

There is a very strong fear in the medical community that leaving it alone means you will have a high chance of some future uncontrolled catastrophe. Most of the medical literature on why one should go in and stent begins with that assumption. If you do nothing, the patient is going to eventually rupture and have a bad outcome. You must take the risk and do something now.

I then traced back to the original literature that says you must do something now or else. I learned something very important. That literature is based on assumptions that date from before widespread use of CT. Those studies also often mixed up the pseudoaneurysm with full aneurysms. Those studies also included very large defects, many so large you could feel them pulsing in the patient’s neck. Smaller ones are being found with CT no one knew were there before. So the old data on how extremely risky these ‘blisters’ are may not be correct for smaller ones. What few not very good studies there are suggest that these smaller ones usually stay the same, or heal on their own. We just don’t know. There is not enough data.

Doctors are not very good at sitting back and doing nothing. The whole profession revolves around going in and fixing problems. Doctors get sued more often for doing nothing than for doing something and having the procedure go wrong. It is also really hard for a doctor to hear that they risked their patients and caused unnecessary pain and suffering even death when they should have just left well enough alone. It is a good doctor’s worst possible nightmare.

In our case, we discussed the pros and cons. The doctor gave us lots of information. My husband assessed the information and discussed it with me. We asked a lot of questions. We decided to do nothing for now. I think if we had urged the doctor to go ahead and arrange the stenting right away he would have agreed to do that. I am also certain he agreed with our decision to wait. He is a good doctor who practices informed consent and respects my husband’s right to make his own informed decision about his own body. The decision is my husband’s and the consequences are his to live with. Whatever happens, it will not be the doctor’s fault.

Of course our decision may change given the results of the next CT. And, of course, if symptoms appear, the whole equation changes.

This is our decision. Your mileage may vary.

Update: Another article “Experience of a single center in the conservative approach of 20 consecutive cases of asymptomatic extracranial carotid artery aneurysms” from 2018 also supports the watchful waiting approach. In this article the author also points out older literature on why you should not wait is likely not applicable for the reasons I gave. Note this is a small study. More research is needed.

“He Took Aspirin.” Stroke and Aspirin

June 24th, 2019 my husband had a stroke. It started with a funny headache around his left eye. He also had ringing in the ears and pain in his upper molar. He decided it was eye strain and took a nap to try to shake it. When he awoke an hour or so later, he was having trouble with his arm and he felt “funny”. The headache, while not bad, was different from anything he had experienced before.

Normally I recommend ibuprofen for a headache. I get periodic headaches with aura that last about three days. Aspirin and Tylenol don’t do a thing for those but 200mg of ibuprofen works like magic. For some reason, a little alarm bell went off in my head and I told him to take two regular aspirin. (325mg each meaning 650mg total.) It was while he was pouring the water to swallow the aspirin that I could clearly see his arm wasn’t working properly. He was overshooting and knocking stuff over. As he swallowed the aspirin I first began thinking maybe we should go to the hospital because it might be a stroke.

The drive to our nearest local hospital is typically one hour and fifteen minutes. I made it in under fifty. I was speeding. At the hospital, they said I should have called 911 and waited for an ambulance. If I had done that, the paramedics could have started the stroke protocol immediately and my husband could have been in a CT machine about an hour and fifteen minutes after paramedics arrived on scene. I felt horrible. I felt crushed. However, talking to the local folks here since we got home, many have told me that paramedics take at minimum forty minutes to arrive at our small rural town. And that forty minutes is on a good day with nice weather and only if the nearest ambulance is not busy with another call. Sometimes in an urgent emergency like a stroke of heart attack, it can take an hour and half to two hours for the nearest ambulance to arrive. They would also have had to then make the same drive I did.

It is possible we would not have had to go through the one hour delay to CT involved in a transfer from the small hospital I went to first. That hospital had no CT machine. They had to arrange the transfer to the large teaching hospital for the CT. There are two local smaller community hospitals that have CTs. They are slightly further than the one I went to in different directions. They usually have staff on hand to do a CT. However neither one are equipped for acute care beyond contacting a neurologist at the major centre, administering clot busting drugs and then transferring to the large teaching hospital we ended up at anyway.

The neurologist told me to stop fretting about it. It does no good to blame myself. I did the right thing and the outcome was excellent. He told us that since my husband’s symptoms were resolving on their own and had largely resolved by the time he had the CT and the symptoms were so very mild, he would not have been eligible for the clot buster drug anyway. The clot busting drug is high risk resulting in 6% of patients dying. Compared to a catastrophic brain injury its well worth the risk but that was not what we were dealing with. His kind words took a huge load off my mind and eased my conscious considerably. Analysis of events to improve future response is one thing. Second guessing and regret is another and it is a waste.

In retrospect, I should have called 911 and then took off and met an ambulance somewhere on the trip in to one of the hospitals. The 911 people would have known where the nearest hospital open to do a CT was. Also when we arrived at the local hospital, my husband’s systolic blood pressure was over 220. They treated that while arranging the CT and transfer. The paramedics could have started that treatment sooner. Given their travel time, however, that meant only ten minutes sooner. I risked him having a major medical crash after a catastrophic stroke affecting his breathing and heart during those extra ten minutes. They would have been better equipped to handle that event.

The symptoms of arm weakness and headache my husband was experiencing dropped to about half by the time we hit the first town near us, a 38km (23miles) drive away. It was twenty minutes after he took the aspirin. While he was in the CT machine, the last of the symptoms went away. His arm was still a bit weak but it was working properly and the head ache was gone. The diagnosis was inner carotid artery dissection clearly visible on CT. At that point they weren’t sure if he’d had a full stroke or a transient ischaemic attack (TIA) or transient symptoms due to the carotid artery dissection. They had not yet determined if he had thrown a clot that had traveled and lodged somewhere deeper in the brain or if the relatively small area of carotid artery had partial closed due to the dissection and reopened. Later, the neurologist would tell us he suspected it was a mild but full stroke and a clot had traveled and lodged in the area of the brain that controls arm movement and it has done a small amount of damage. (That damage will remain but the slight weakness should disappear as the brain heals and rewires itself around the stroke site.) Only an MRI will tell for sure if there is damage and it was a full stroke or a transient ischemic attack related to the carotid artery dissection.

We went through four days in hospital of careful monitoring, 24 hour heparin drip, a barrage of drugs and lots of fighting his blood pressure. (It needs to be up to get blood into compromised areas but not high enough to encourage another clot of break off and travel. The doctors fretted and administered drugs every time the systolic number went over 180.) Students came and went along with the many doctors and one thing I kept hearing over and over again was how lucky my husband was and how mild the event was. This was invariably followed by a lowering of the voice, heads coming closer and then in a near awe-struck tone someone would say, “He took aspirin.” This would be followed by knowledgable head nods and as if that explained it all. At the time it made no sense to me. I fretted that maybe I had made things worse by telling him to take two aspirin instead of an ibuprofen. I even asked if the aspirin made it worse. “Oh no, not at all,” everyone assured me. No one mentioned it might have been absolutely best thing to do.

I have since put things together in my mind. In ScienceDaily, 18 May 2016, there was commentary on how taking aspirin as soon as you have symptoms of a stroke, especially if you are far from medical help, reduced the chances of a major stroke by 70-80%.

The authors concluded ‘Our findings confirm the effectiveness of urgent treatment after TIA and minor stroke — and show that aspirin is the most important component. Immediate treatment with aspirin can substantially reduce the risk and severity of early recurrent stroke. This finding has implications for doctors, who should give aspirin immediately if a TIA or minor stroke is suspected, rather than waiting for specialist assessment and investigations.’

Furthermore: ‘The findings suggest that anyone who has stroke symptoms, which are improving while they are awaiting urgent medical attention can, if they are able, take one dose of 300 mg aspirin.’ [Note I gave him 625mg which may have been too much but then again….]

I am an avid follower and reader of science news consolidators such as Science Daily. I often then go back and read the entire article they reference. In retrospect, I think I must have read that article about stroke and aspirin and it sat in my subconscious. I now also think the dramatic improvement we saw in twenty minutes was due to the aspirin starting to dissolve the clot. The fact that the symptoms pretty much vanished even as he had the CT was when the clot was fully dissolved. All the other stuff the doctors did, like keeping his blood pressure in a range that allowed more blood to get to the brain but not so much as to cause the delicate healing process of the carotid artery dissection to break open, those anti-inflammatory drugs to stop the brain from overreacting to the damage, and the blood thinners, all prevented something much worse from coming afterward.

Am I recommending taking an aspirin if you have symptoms of stroke? I can’t do that. I am not a doctor. (Okay, I am a doctor but the PhD kind not the medical kind.) There are two kinds of stroke. One kind (about 30%) is caused by blood vessels rupturing and bleeding into the brain causing damage. The other kind, the 70% kind like the one my husband had, is due to a blockage, usually but not always by a clot. Aspirin could make the bleeding kind worse. That’s why doctors don’t just give you clot busters if they think you are having a stroke. They do the CT first to make sure they don’t make a bleeder worse. I also don’t know if it will help all kinds of blockage. There are also people who should not take aspirin because of other reasons. So no, I can’t recommend you take aspirin if you are having stroke symptoms.

I recommend instead that everyone read up on the symptoms of stroke so you know if it happens to you or someone you love. Understand your best options for getting to medical care quickly before you need it. Talk to your own doctor about it and read up on taking aspirin. Weigh the risks. Make your own decision once you are fully informed and do it before you need to deal with an emergency. If you live next door to a major teaching hospital you can afford to wait to treat. If you live 250km from the nearest hospital, like we do, you have to play different odds. Aspirin might be your answer. Maybe.

We got lucky. As Louis Pasteur said, “Luck favours the prepared mind.” We were also prepared with knowledge even though I did not recall from where during the emergency. We had aspirin on hand. I distinctly remember buying that aspirin even though we never use it, in order to have it in the house, just in case. [My husband has been on the low dose aspirin for decades which he takes with a multivitamin which is why we don’t use it randomly for other things.] I don’t recall just in case of what. The aspirin bottle has an expiration date of this year. That means I likely bought it around the time I read that article in 2016. It doesn’t have the vinegar smell of spoiled aspirin and aspirin lasts a lot longer than the three years or so written on the bottle. Even so, I will be buying a new bottle next trip to town. I might even buy a half dozen or so and keep aspirin in my truck, my RV and a couple in my purse.

We got lucky. Luck favours the prepared mind. Be prepared.

 

Two weeks post carotid artery dissection and counting

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Hubby dearest had his two week post hospital release check up. We saw our new family doctor. This is a point of loss for us because I really liked our previous doctor but her practice is not geared to his needs right now. Fortunately, the new guy turned out to be a nice young man, personable, and knowledgeable and he works closely with the neurologist on other issues with other people. We left feeling confident about him.

I knew on a rational level that we were in for a long recovery but emotionally I was not ready for what this new doctor said. One thing that added to my hope was the slight weakness of the left leg and the occasional tremble of the left hand seemed to have pretty much gone away within the first two days home. I was hoping to get a “Yes, your life can go back to normal now”. I did not get it. Instead I got a reality check. The neurological exam showed the weakness on one side is still there. Life is not going to return to normal anytime soon. In three months we go for the update CT and a neurology consult. Then we see the new doctor again one week later. Meantime, we do nothing unless something changes. If something changes we are to come in right away no matter the time of day or the day of the week. Otherwise we carry on as is.

Because of how mild the possible stroke was we have no instructions for rehab. Basically he is to simply go back to life and ignore the tiny tremor and slight weakness on one side. They will go away or they will not. For the strange fatigue that hits like running into a wall, same thing. Rest when tired. Stop when you don’t feel like working and then work and live when you do. It too might go away in time (but not anytime soon) or it might not. This might be the new normal.

We brought up all the meds and some side effects, and got kind of a shock. Maybe in three months we can talk about changing or lowering meds but most likely not.  All he is allowed to do is change the time of day to a better time. On this new doctor’s advice we ordered our own blood pressure monitor. We got home and filled out forms for all those new meds and filed it with our insurance company and promptly got audited. Their computer noticed something new and now we have to prove this change is real. All the money we spent on drugs must now wait for fourteen extra days for the audit to be processed and then up to ten more working days for the refund. For the first time in years, we have blown through our deductible. And to think I was ready to cancel that supplementary insurance because of the cost of it. Thank goodness I did not!

We are in for a long winter in our little house because we won’t be able to travel south for at least one year. No travel insurance will cover him. Among our recent investments was a desk treadmill combination. In the past, cold weather meant we just didn’t venture out and we got fat and grumpy. That was the main reason we went south, to be healthier. This will simply not do in our new normal. The combination of desk treadmill should mean we can keep up with our walks in winter. Of course another friend told us he purchased a treadmill post heart attack and it is now a very expensive clothes hanger. His good intentions went nowhere. You get used to limitations, he says. Can I live with that? Right now today we are determined we won’t. I alternate between wanting to start blowing some of our savings to purchase everything we need to make the house perfect for winter right now, and trying to remain within a budget just in case we both live another thirty years. There must be a happy medium in there somewhere.

And then there is the fear. Every cough, every yawn, every bout of fatigue and I am watching him. If he naps for too long I go and check he’s still breathing. If he complains of being tired and goes to rest I calculate in my mind how long since the last nap. Is this worse? Is this a change? He grumbled about something ordinary and I found myself wondering, is this a personality change? He got impatient and overreacted to some normal family drama. I worried about what the stress was doing. Could this bit of drama, which forced his systolic blood pressure up 40 points for a few minutes on the damned machine, cause another episode? Please calm down. Don’t respond. Leave it. I didn’t want to nag him so instead I told the dog to leave it and she looked me all puzzled and hurt. Leave what? I was sleeping. Fortunately dogs are forgiving. A bit of cheese and all was forgotten.

It has affected our children. I got so angry at the grown son involved in the drama for that rise in blood pressure and then I was shocked to discover he has his own anger. Mortality and aging has come up and smacked him in the face from both his father’s near miss with death and his now adult son who is going his own way and doing something contrary to what Dad wants for him. The son is entitled to his anger too. The strong adult reaction and support we have received from the grown grandson during this drama simply illustrates what a very fine job of parenting the son has done but he isn’t in a place to realize that just yet. Children grow up and do not fulfill your dreams for them. Instead they pursue their own dreams. It is easier to understand when you have already been through that life phase yourself. For some reason it is also easier for grandchildren to accept aging of grandparents. I suspect it is because the young are still young enough to think they are immortal.

Our daughter and another son came to visit and I was surprised to see how long they held on and hugged their father. They too have had their world rearranged. Yes, their father got lucky this time but what if next time it doesn’t go so well? What has felt best for me from the family support? What has comforted me the most? The long generous warm hug from one of my daughters-in-laws whose eyes say she understands mortality with her soul of great compassion. Being one step removed, she can stay detached. I have no need to comfort and reassure her. She comforts and reassures me instead.

We are so much more tender and caring of each other as husband and wife. There are many more “I love you”s and little pats and moments of pausing for a hug and more loving looks. Today, he actually put up that hook I had been waiting for since we moved into the house four years ago. It doesn’t make up for the fear. It serves to emphasize how much we have to lose. I keep feeling like I need to have a good cry but there are no tears.

I did get a bit of good advice from another friend who had a far worse stroke though she has made a really remarkable recovery. I mentioned again how the doctor had said how fortunate we were. She said, yes, she knew that feeling too. While she was in rehab she saw lots of examples of how much worse it could have been for her. However, she advises that it is important to let yourself get angry. Yes, you are lucky it wasn’t worse but it would have been even luckier to not have a carotid artery dissection at all. You have to go through all the steps of mourning to get to finally accepting loss. It was strange to be told I had a right to be angry and feel loss but it certainly made me feel better. Our world has shrunk. So what if others have had it worse? We have still had a loss and we are entitled to mourn.