Cat Provides Physiotherapy

This one is weird enough I just had to share. In the immediate aftermath of the latest ministroke, my husband has had an irresistible urge to put his foot on something sturdy and push hard. This meant for a while we had the bed with the foot against the wall. He also used a large elastic band style exercise device to satisfy this rather peculiar urge. My husband described it as being not unlike an itch that only pushing would satisfy. If he didn’t have something to push the foot on, his entire leg would twitch and jump.

Each day he improves and we moved the bed back but he was having trouble with waking up at night with the twitch. He was also twitching without waking, which woke me up. If I rested my foot on top to his, he would stop twitching and settle back into a deeper sleep. However, it was hard for me to remain awake enough to keep up the pressure. Then the second morning after we moved the bed back, I woke up refreshed and happy. I had a good night’s sleep! I looked down and there was our cat, Klinger, sleeping on my husband’s foot.

Klinger is our fourteen year old Siamese cross adopted from a local cat rescue as a kitten. The cat often sleeps with us but he generally keeps to my side at the end of the bed near my feet. I think he likes my husband but there is also a clear rivalry with the cat acting like he regards my husband as a nuisance he has to put up with for my sake. My husband is the one who takes away my time with the cat. The cat is not allowed on my husband’s side of the bed and if he dares to try sleeping there, he gets a quick shove. It’s a kind of a detente between them. And so it was really weird to find the cat sleeping on my husband’s troublesome foot, radiating cat heat, quietly purring.

The next night I again had a good night’s sleep and every time I half woke up, the cat was right there, sleeping on my husband’s twitchy foot, softly purring. My husband reported he would get up and use the bathroom and when he came back, the cat would immediately resume the position on his foot. The cat seemed to have picked up that the pressure on the foot was stopping the twitch and the cat was keeping it up. This happened two more nights with the cat staying right there, sleeping on my husband’s foot, quietly purring, all night long. I can’t say how grateful I am to Klinger because we both needed the three deep long nights sleep his peculiar behaviour allowed us.

Last night my husband was so much better that the foot was no longer twitching and he could sleep well without the cat. The cat was back in his usual place sleeping on my side. My husband had not shoved him away. The cat had simply decided his services as foot weight/warmer were no longer required.

We expect dogs to be tuned into and help their humans in need. However I have rarely heard of a cat acting in such a deliberate manner to comfort a human in distress. What aspect of cat behaviour was triggering this gentle response? Cats do comfort twitchy kittens by lying nearby and sharing warmth. I have seen male cats doing it with the older kittens of females they share a pride with. Perhaps Klinger interpreted the twitchy foot as a need for that kind of comfort. Maybe the twitchy foot was disturbing Klinger’s sleep and lying on it made it stop. My daughter says the cat loves my husband and wanted to help him. Since Klinger isn’t talking, we’ll never know.

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Alistor “Mad Eye” Moody has Left the Stage.

I love the Harry Potter stories and I have read each one several time. Alistor “Mad Eye” Moody is one of my favourite characters in the series. In the ER my husband looked just like Mad Eye complete with the tongue thing. Once they said they were admitting him, I headed home to arrange for the house to be watched and the neighbour (Bless Her!) to care for the cat, and to find a hotel room where Misty could stay with me. When I came back about five hours later, his tongue was back where it should be but the eye was still off doing its own thing. I had to bite my own tongue to stop myself from laughing out loud.  Even though it was very funny to look at, I figured laughing out loud at his state would be unkind. I was also concerned about how the grandchildren might react to seeing Grandpa doing this weird thing with his face.

The other problem with the Mad Eye look is my poor husband was seeing double and being made nauseous and dizzy by that. The doctor ordered an eye patch. My husband refused to wear one with adhesive. They had none of the pirate type in the hospital.

I held up my finger and asked him to think hard about focusing. To my relief, the eye settled and took the proper place for two seconds before heading up to check out the ceiling again.

“You’ll get that back,” I told him. “Just work on focusing.” Over the rest of the day I kept trying not to laugh every time the eye wandered off on its own. It was hard for me to fight the giggles. The next morning I stopped in at three pharmacies in town but no one had a pirate style eye patch.

By the second day after the stroke the wild rolling had stopped though he was still seeing double. He also reported something I found strange. Looking at a blue grey chair he said he saw two chairs, one blue grey and one bright red. Since he’s partially color blind and can’t see red anyway, I kind of wondered about that description. How do you see a red chair when you can’t see red? I pointed out how much better the eye was looking and that pleased him.

The following morning he told me the chair was still double but it was now the same color, blue grey like I saw it, on both chairs. The eye was doing an occasional twitch to one side but was otherwise mostly focusing. The staff still wanted an eye patch saying it would help get rid of his double vision and improve his balance. I suspect the real reason was that not everyone finds a Mad Eye as amusing as I do and maybe the patch would also make other people more comfortable.

Yesterday, he looked normal again. He told me he was still seeing double but the images were very close together and almost normal. Our visitors assured him it was not really noticeable. This morning, he sat in his chair having his morning tea. He was looking all around the room, near and far away. He announced in a voice of great satisfaction,

“I’m not longer seeing double. The eyes are working together again.”

Of all the things that could go wrong after a stroke, the whole Mad Eye Moody look is one I could live with. I must say, though, we’re both relieved it is gone.

Years ago when I was into training as a geneticist, I was expected to attend many of the same resident lectures and rounds doctors in training had to go to. Biochemistry rounds conflicted with neurology rounds. I recall one of my supervisors shrugging and saying,

“You’ll get more out of biochemistry than neurology. Neurology is black box medicine and they really have no idea what’s going on in there. Treatment consists of whacking it with a drug or an electric shock to see what happens and hoping for the best.”

When I asked the doctor about the arrival of Mad Eye and his apparent imminent exiting from the stage, all I got was some incoherent muttering about the third trigeminal nerve and a shrug. The doctor then rolled his own eyes (together) to indicate he had no idea. I guess neurology is still a black box.

Back At His Computer

We got home yesterday. How are we doing? We have additional bars and supports in the bathroom as per the instruction of the occupational therapist. He has a seat to sit on while he showers that works well. The bed is in a new spot to better accommodate his walker. Each day he gets more function back.

Our years of living in a travel trailer are certainly coming in handy in a strange way. Every time you move your trailer to a new location you have to rearrange stuff and adjust and adapt. You have to deal with small problems like the hose doesn’t reach the faucet or the electric hook up is opposite what you need. All those lessons in adaptation are perfect now as we adapt our home to this new reality. Aging is about adaptive living.

He has a pleasant, easy going, and patient personality. He says please and thank you all the time. He gives soft voiced gentle instructions. If I can’t do it right now, he is content to wait until I can. He gives reminders and suggestions in positive constructive ways. That makes this so much easier.

And his spirits are high. He wrote a paper in his head while lying there and now he’s getting his thoughts on paper, virtual paper that is. I suspect he might only get an hour or so before he fades and needs to have a nap but getting that hour of work in is more important than all the admonishes and advice of anyone else.

Right now my most annoying issue is that he always handled the laundry. Since the washer and dryer are in the basement, I have to take over that job, at least for now. I never used the new washer. It was a royal pain to figure it out and patience is not one of my virtues.

He actually lasted only 30 minutes at his computer and he’s having a nap now. I am going to go shower while he does. After that, I will start the next load of laundry and try to figure out how that the dryer works.

Health News Setback

It’s kind of hard to write this but in the wee hours of the morning Tuesday my husband had a stroke. This one is worse than the event he had last June. After the ambulance rolled him into the hospital and the whole stroke protocol kicked in, it was clear this one was a bad one. My husband couldn’t move himself from one side of the bed to the other. His cognitive functions were perfectly fine but his body wouldn’t move. His one eye had taken on a life of its own. It was rolling and his face was hanging on one side. I had a very hard time understanding what he was saying.  The doctors did their thing, MRI, CT, blood thinners, the works.

By the next morning, my husband was much better. He could roll himself over. He had substantial weakness in his left hand, just as it had been previously affected only worse. His left leg was weak too. His eye was still rolling around like Alister Mad Eye Moody for those of you into Harry Potter. It was making him see double and he kept making me want to laugh because it looked so funny. Miraculously, his face was no longer drooping and he could speak understandably.

The specialists were called in. The entire sequence of the six CTs and the two MRIs were compared and the whole history reviewed. The conclusion was last June he had a small stroke in his pons region and that was independent of the carotid artery dissection. That stroke in the pons region was minor and he healed up very well. This second stroke again has nothing to do with the healed carotid artery dissection. There is something going on in his pons region. It is likely some kind of genetic issue with his blood vessels, a weakness that caused both the dissection and the first small stroke and the one he just had. As to what it is, we don’t know and we probably never will. Most likely it’s a stroke that is going to kill him one day, maybe soon, maybe not.

By 48 hours after the stroke my husband had again improved markedly. He could now sit up in bed unassisted. His eye was now mostly back where it should be though he was still seeing double. If he concentrated on it, he could force both eyes to focus. The staff of OT and physio were all talking about an extended stay in rehab after weeks in hospital but he fooled them. He improved so markedly that by afternoon he was able to use a walker to get to the toilet and use it and get back to bed without any more assistance other than them hovering over him fretting anxiously about him falling. I had told him he couldn’t come home unless he could get to the bathroom and use it by himself, get up the stairs and get in and out of the truck. Now the most important one was done.

This morning he was once again markedly improved. Today we went to the shower and he bathed with only minimal assistance while sitting down. I did his back and feet. He did all the rest. The whole bed to stand to walker/transfer to the wheelchair thing was easy for him as his balance is rapidly coming back. The Mad Eye Moody look was mostly gone. The OT and Physio people were just shaking their heads over him because he kept saying he was going home Friday. He insisted he would show them he was ready to go up and down stairs and they finally reluctantly agreed to let him try and he did it. Then he did it again three more times just to show them. Second goal met. He is doing so well the doctors decided he should go home. This is turning out to be less of a full on major stroke and more of minor stroke to a transient ischemic episode in terms of outcome at this point. The doctors know our home is already pretty much set up for dealing with walkers and such from last June’s event. They also know I have a lot of supports. Finally, because with COVID19 thing is about to break in our area, the more people out of the hospital the better.

Today I went shopping and bought special bathroom support assists like a sit down thing for the shower. We already had safety bars and such. I bought a bolt on toilet support. I bought him a walker. I rented a wheelchair. If he keeps improving like he is doing he won’t need them in a few weeks. We’ll see how it goes. I am hoping we can give them to someone less fortunate in a few months. On the other hand I might keep them, just in case.

Right after the stroke, once I could leave the ER and go home, I drove trying to resist the urge to just keep driving forever. I thought how I couldn’t do this. I am not up to being caregiver again just after having him back as he was before. Visions of nursing homes and drooling and adult diapers made me want to weep. After a good nights sleep I was ready to go back. His remarkable improvement made me feel a lot better. He said he wanted to die when he couldn’t even roll over. So he knew what I was going through only for him it was even worse because it was his body. Fortunately, it turns out we’re not there just yet.

So what does the future hold? We don’t know. All I do know is the man I love is still there. His body is getting a bit battered but he’s still there. That’s the only thing that matters. I don’t know how much time he has left with me. None of us know. His mother had multiple small strokes, made near miraculous recoveries after each one and lived to age 97. Maybe he’s following her example and that’s what we are in for. Time will tell. For today he’s not dead yet. I’m taking him home tomorrow.

 

Carotid Artery Dissection is Healed!

We had two updates, one from the neurologist by telephone and one from the interventional radiologist via another telehealth conference. The MRI results were carefully quantified and reviewed and then forwarded to both of these specialist. The neurologist called and told us that the carotid artery shows up in the MRI as healed, no more pseudoaneurysm and, providing the interventional radiologist agrees, we can declare the carotid artery dissection completely healed and stop the blood thinners.

After this news I found myself feelings like I was in shock. It was a pleasant shock, but still a shock. I was trembling. I was in tears. All these longs months, all the worry, all the fear, all the careful watching. We are done. He is healed. We can start thinking longer term again. It was really hard to wrap my brain around the news. I ended up suppressing all my happy happy thoughts a bit and reminding myself the interventional radiologist must agree first.

And the interventional radiologist agrees with one caveat. It can be difficult to do comparisons between imaging modalities. There has been so much improvement between the last CT and this MRI he can’t quite believe it or trust it. He agrees the MRI does indeed look like the artery is fully healed a huge and very pleasant surprise since he did not think pseudoaneurysm ever would given how big it was. He even had another radiologist (someone whose ability and skills he really trusts) look at it just to make sure and this fellow also agreed the artery has healed.

His recommendation is that my husband continue with the blood thinner (generic form of plavix for a full six months since the last time we saw the pseudoaneurysm just to be on the safe side and follow the standard recommendations for a dissection and then image one last time with CT to really confirm the astonishing healing shown in the MRI. We agreed to this. My husband has six weeks of his blood thinner left so he will finish the bottle and have the hopefully one last CT and then we can call the carotid artery dissection incident finished and done with. Amazingly enough, there is no evidence of any kind of a stroke from the dissection on MRI. So if asked, we can honestly say no it was not a stroke, it was carotid artery dissection with transient symptoms.

I had another happy cry.

Can you see me smiling?

 

Health Update – Carotid Artery Dissection with Pseudoaneurysm.

A short report that is nice because it contains good news. We are seven months since the diagnosis of a carotid artery dissection. My husband got called in for an MRI. The reason for the doctors being concerned about this is because my husband is at a much higher risk of throwing a clot due to the healing carotid artery dissection with a large pseudoaneurysm because of narrowing at the site of the injury.  You may recall there was a debate about stenting (relatively high risk especially when compared with his clinical symptoms which are none.) The MRI was for testing if the carotid artery dissection caused a stroke of if it is throwing off small clots and causing micro strokes. Micro strokes are tiny strokes that do not show up clinically but accumulate over time and eventually can lead to dementia. They can only be seen using MRI. Our doctor gave us a copy of the report on the MRI and the neurologist’s report and it was overall positive.

The MRI did not show sign of anything beyond a “smooth narrowing” of the artery. Compared to the last report from October with a CT that is an improvement. To be properly cautious, it is hard to compare across modalities however since the clinicians seem to think that’s a positive improvement, we’ll definitely take it. There is still a thrombus/clot where there was before but the MRI seems to show it was smaller (again the cross modality issue makes me hesitant to say it.) Also the MRI works by producing a specific signal when a specific magnetic frequency is used. The signal that came back was for a blood clot and not the later final stage of a healed clot. It apparently takes 4-6 months for this process to start so it is not a surprise nor is it bad news. It just means the healing is not finished. The thrombus certainly is no bigger.

The really good news is the MRI could not detect the stroke damage. Strokes show up as bright spots and the brighter and more solid the spot, the worse the stroke. In my husband’s case there is only one very small, very faint and only slightly brighter spot and no where near where he should have he had caused by the carotid artery dissection. Best of all, no sign of any other micro strokes or secondary damage or anything else. He has two tiny plaques in his arteries, matched on both sides, which are often found even in healthy young men and we already knew about those from the previous CTs. The letter from the neurologist states he has ruled out any progressive neuropathies or vasculopathies (i.e. blood vessels and nerves, brain are as normal as can be for 76 years). The specialist thinks it was just the unlucky seatbelt accident. Further our family doctor told us he can confidently state my husband is now clinically stable if a travel insurance company were to ask. (Due to the past history of carted artery dissection that might still be an issue but we’re not ready to start traveling right now anyway.)

We also got permission to try reducing the last of three blood pressure medications he is on back down to the level he was using to control his blood pressure before all this started. (He has been on a double dose of his ace inhibiter since the dissection after using it for many years to lower his blood pressure.) Again, it has to be done carefully with daily monitoring twice a day (morning before taking the pill and evening) but six days into it and my husband’s blood pressure has actually been a bit lower sitting nicely at about 130/80 give or take 5 points with the majority being about 125/75 for the evening check and slightly higher for the morning check before taking the pill.

There we are. Slight improvement, no sign of the bad stuff the MRI was supposed to detect, no need for stenting at this time, no more visits to the doctor until late spring unless something changes. Blood pressure med down to the previous level. At some future point yet to be determined, another imaging check of the artery will be done (likely by ultrasound) and if it is healed my husband can stop taking the generic plavix blood thinner although the neurologist said he should be taking a baby aspirin for the rest of his life.

There is a special Hebrew blessing for when one has had a near miss with death and been delivered from it. I am tempted to ask my husband to arrange now. (It has to be said in a minyan of ten Jews after a Torah reading) but I won’t just yet. Instead, I’ll ask for the continued healing prayer to keep on being said since we are not all the way there yet. (You can hear a woman sing the prayer in Hebrew here.) In English it goes like this:

May the One who blessed our ancestors Abraham, Isaac, and Jacob, Sarah, Rebecca, Rachel, and Leah bless and heal Yitzhak son of Dina. May the Holy Blessed One overflow with compassion upon him, to restore him, to heal him, to strengthen him, to enliven him. The One will send him, speedily, a complete healing, healing of the soul and healing of the body along with all the ill, among the people of Israel and all humankind, soon, speedily, without delay, and let us all say:  Amen!

Health Update – New Doctor and Polypharmacy

This month we attended the Grand Ole Kinosota Opry (think Karaoke with a few professional musicians thrown in doing old country favourites) and we had a great time. I snapped this selfie sitting on my husband’s lap.

Yesterday we made yet another trip to Neepawa where, among other things, we saw the new neurologist. Mostly I came away feeling really positive. The new fellow agreed with all the reductions in medication our own family doctor has implemented. Recall my husband was on five different drugs, three of which were to lower his blood pressure. He was having some very nasty side effects. One drug a generic version of lipitor was in the cocktail even though my husband has no issues with high cholesterol or any other lipid issue. His lipid levels were normal. I’m not sure why this drug was included in the cocktail but for three months my husband suffered terrible leg cramps, especially in his thighs, that would wake him in the middle of the night with pain so bad he would literally scream. We were told to stop that drug as soon as the first neurologist heard about it. While the cramps got better right away, it was another two months before the cramps finally stopped completely.

The two extra blood pressure medications had side effects including sleepiness, swollen ankles, sudden drops where his vision would go black, dizziness, inability to tolerate heat, problems with becoming dehydrated, an inability to tolerate even the most mild exercise beyond slow walking, and “The Wall”. “The Wall” being terrible fatigue that came on without warning and required he immediately going to bed, lie down and sleep. Initially, we assumed that The Wall was purely an effect of the suspected stroke. Now I am not so sure all of it was that. Second to go on the cocktail list was a drug called amlodipene, a calcium channel blocker. First, we reduced it by half for two weeks while monitoring his blood pressure and then we got rid of it completely. For the first couple of days after the drug was reduced/removed my husband got some wonky readings including a couple of weird high ones but they soon settled. There was an immediate and very noticeable improvement in just about every measure of my husband’s alertness, ability to tolerate exercise. Plus “The Wall” rather abruptly vanished.

Third to go was the diuretic, hydrochlorothiazide. Again, the same few days of wonky readings and then the readings not only settled down nicely, in fact, they went lower than before. We are now consistently below 140/80 with the majority readings in under 130/80. And much to everyone’s surprise but mine, so did the swollen ankles. Now hydrochlorothiazide is supposed to prevent swollen ankles by draining away excess water but if you read the fine print the pharmacist gives you, it can actually cause higher blood pressure and swollen ankles in some individuals. Another very nice bonus was issues with our love life vanished. I’ll spare you the details but hydrochlorothiazide is renowned for its ability to turn vigorous healthy men into limp noodles. Some people may prefer their men in that state. I am not among them.

My husband is now back to the single blood pressure medication he has been on for the last twelve years, a drug that was prescribed to him by another metabolic specialist after a lot of tests and (I am most annoyed by this part) a trial of both another calcium channel blocker and hydrochlorothiazide. The first was ineffective and the second proved to make things worse, not better for him. So why did no one listen to me when I complained about adding drugs that we already knew didn’t work? I’m just the stupid wife with a PhD in human genetics specializing in metabolic pathways, so what could I possibly know compared to Almighty Doctor? Can you see my eyes rolling so far back in my head I can see my tenth birthday? My only regret is I caved in and let the doctors push me into putting him on these drugs and it took a lot to finally get someone, namely our family doctor, to actually listen to me and agree to try stopping them in a safe supervised way.

The new neurologist did not talk about putting my husband back on any of those drugs. (Much to my relief as I was ready for a fight.) He did explain why my husband needs the anti platelet drug clopidogrel bisulfate (generic form of Plavix.) As long as my husband has this narrowing of his carotid artery the blood is rushing through like rapids through a chasm. Blood can get caught in eddies and swirls that can cause a clot to form. A clot could trigger a stroke. Now I “get” it. However the new neurologist was also specific that when the pseudoanuerysm heals, we can stop the clopidogrel bisulfate. The neurologist says my husband will need to be on baby aspirin for the rest of his life. We’re both fine with that since he’s been on the baby aspirin since he started the high blood pressure medication and he’s tolerating the clopidogrel bisulfate very well.

The neurologist also agreed with the interventional radiologist that a 5-10% chance of having a stroke or even dying while having the stent put in for someone who has no symptoms, means the stent is a bad idea. He also agreed my husband needs to have an MRI to rule out so called “silent strokes”. Silent strokes are very tiny strokes that have a nasty cumulative effect and eventually can cause dementia. The anti platelet medicine should be preventing these silent strokes from happening. Only an MRI will tell for sure. I explained how the doctors in Brandon had decided he could not have an MRI due to some metal in his leg from a bad break many years ago. The interventional radiologist had told us that was nonsense and the new neurologist agreed. At some point, we will get the appointment to go have an MRI. Given this is now elective, that could take a while with Canadian wait times. The new neurologist asked about homocysteine since that is a key factor in many silent strokes, but the previous neurologist had already ruled out high blood homocysteine levels via the blood tests. It was nice he explained the connection between homocysteine and silent stroke as opposed to saying the equivalent of “It’s normal so don’t worry your pretty little head about it.”

I was also very happy to be able to tell the new neurologist that from our perspective, life has pretty much returned to normal. I came away feeling very positive about the longer term as well because this specialist seems to think that eventually the artery will heal and the sword of Damocles hanging over my husband’s inner carotid artery will eventually be gone. June is when we will reassess and we can do it with ultrasound. For now, we carry on as we have been, living normally.

This entire adventure got me thinking about a very common problem with the way we practice medicine. Polypharmacy is a real and dangerous problem. I’m not sure why my husband was sent home with a cornucopia of fives drugs in a messy cocktail that caused him so much trouble. Maybe he needed all that in the early days post carotid artery dissection. Maybe it helped his healing and then once the healing was done, it would have been safely stopped eventually even if I had not fussed so much about it. Maybe he was ‘overmedicated” right from the beginning. We’ll never know. My personal feeling is he was given a standard cocktail of post stroke drugs appropriate for someone with multiple risk factors like diabetes, poor lipid profile, and uncontrolled high blood pressure. No one took into consideration that his supposed stroke was not caused by any of these and two of these drugs had already failed in his past history. Rather, his stroke symptoms was that typical of a much younger person caused by an accident that tore his inner artery.

My advice is one should never just stop the drugs doctors prescribe. However you should question each and every drug as soon as it is prescribed. If you think past history means the drug is not a good idea, say so and keep saying so until the doctor listens. If the doctor won’t listen, find a new doctor. Don’t take glib explanations for the reason for taking the drug. Do take the time to read all the fine print in those sheets the pharmacists hand out. Know exactly what those side effects are and promptly report them to the doctor. Insist on a serious reconsideration of the drug with an eye to deprescribing as soon as the side effects pop up. Wave the pharmacist’s sheet in front of the doctor if you have to, to make the point. Finally, conditions change and you need to review all the drugs you take with an eye to deprescribing at least once a year and certainly whenever a change in your health happens. Always reduce the number of drugs you are on under the supervision of a doctor you are confident with. NEVER just stop taking them on your own. If your doctor is not listening, find another doctor. Doctors are human beings, not minor deities. No one sues them for over prescribing. They only get sued for under prescribing.

On a final note, to be fair, I have two dear friends with complex health issues who are seeing the first neurologist and they think the world of him. They are convinced he saved their lives and they can’t say enough good things about them. I still think the first one was competent. He just wasn’t the right one for us and part of that was his personality (he’s a ‘pat on the head you need to trust me’ type) and I directly and absolutely butted heads with my (I need to know at least as much as you and strive to learn more than you because it’s my problem) personality type. His refusal to listen to me could well be simply because I got his back up. More than one doctor has said I am a difficult patient, or in this case, a difficult wife.

And so that is our update. We are now feeling “back to normal”. Travel outside of Canada is still out of the question due to insurance issues. We are thinking about some camping trips with our travel trailer to places like the Yukon this summer since we are spending the winter here. Wonder of wonders, I am actually enjoying this winter. I think that is because I don’t have to stand and wait for a bus in the extreme cold. If it’s horrible outside I cocoon inside under my electric blanket. I have also been trying winter sports I never had time for when I was working. I discovered I really like curling. The community has been hosting a whole whack of fun events. The farmers are not as busy in winter and folks get sick of being shut inside so fun things tend to happen. We have been to multiple events including one where we won 15 pounds of pickerel. This year is off to a great start!

Health Recovery Update

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.

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.

Good Doctors are Wonderful!

We walked in to see the new family doctor for the second time. It was wonderful! I really like this new family doctor we have. This doctor heard us out, made careful notes and immediately agreed it was time to start getting off all the extra blood pressure meds. We did not have to argue or plead.  We now have a plan to reduce the amlodipine by half for two weeks and then eliminate it completely for two weeks. If his blood pressure stays in a good range we can then try stopping the second of the three drugs, hydrochlorothiazide. If his blood pressure starts back up again, we go in and reevaluate. I can’t say how delighted I am because while the dissection was initially the worst part of all this, the side effects from the drugs have more recently become the worst part of his life.

The order of the reduction which the doctor recommended was different from the one I thought we should move in but we will follow the doctor’s advice since, well, he’s the doctor. He explained why he was recommending the order he did and it made sense. It was immediately apparent he knew a lot more than me. He explained why he thought we need to continue with the blood thinners for three more months and it made sense so we will do that too. Unlike the previous doctor, he told us the blood test results.

Getting rid of the atorvastatin last week has already made a remarkable improvement in our quality of life. It’s not fun living with horrific thigh and back cramps and terrible muscle pain. It’s so hard as a wife to see your husband suffer and be unable to do anything. I am very hopeful that getting rid of at least one of the blood pressure drugs will help with the lack of stamina, dizzy spells, swollen ankles, and getting spots before the eyes on standing. The dog will be happier too if we can begin to enjoy our regular long walks again without the having to stop to sit and rest. As a bonus, we are getting referred to a new neurologist who is not so authoritarian and patriarchal in his patient interactive style. We are assured this one will better suit our personalities. I have no doubt about the skill of the previous doctor but he obviously has real issues with patients who ask questions. What a pleasure to be teated as intelligent adult partners in our care whose opinions and words count.

A good doctor is worth his or her weight in gold. I think we have found a 24K one.