Thursday, August 20, 2015

How the Cold Sore Virus Sent Me to the Hospital

The lovely little town of Buxton, where I recovered.

Note: I am fine. I  was lucky and did NOT have a stroke. It's a little embarrassing to admit when you have done something foolish--or just plain stupid--because I knew I should go to the doctor when my symptoms first appeared, but I didn't--even when the evidence that I should was literally staring me in the face. Please, if you ever have a paralysis anywhere, seek immediate attention. It could save your life. 

The morning before we were to leave Grassington, a Thursday, I looked in the bathroom mirror and noticed something was not right. One side of my mouth was droopy. When I tried to smile, it was crooked--the right side would not turn up.

I have a friend who once had Bell's palsy, so when I saw my paralysis and read online that Bell's palsy was often associated with herpes simplex I, the virus that causes cold sores, I thought I knew what had caused it. I had had an earache for days and a cold sore before I developed the paralysis.

I felt certain that Bell's palsy was the diagnosis. After all, I don't have high blood pressure or cardiac problems, I take no prescription medications, and I had no other symptoms. However, that was not a smart assumption. As I discovered later, Bell's is a diagnosis of exclusion, and even the experts can't tell if it's Bell's palsy or a stroke without a CT and/or MRI scan. Also, if you are having a stroke caused by a blood clot, you need to get to the hospital quickly to get the drug that dissolves the clot. If you wait too long, it could be too late. But I was in denial. If it had been Kevin I would have insisted he go to a doctor, but we were miles from a hospital, and Ms. Smarty Pants assured her husband that it would be OK to wait.

The next day, when we got to Buxton, in the Peak District, I went to a doctor's clinic. When I relayed my symptoms to the nurse, she made sure the doctor saw me within minutes.  I liked the physician, a woman who was thorough, professional, and compassionate. She, too, thought I had Bell's palsy, but insisted I go immediately to the hospital and wanted to call an ambulance for me. I demurred, and said we could go by train. But she countered,"No, I don't want you to go by train. You can go by taxi, if you like."

So we took a taxi to the hospital about 45 miles away, which cost us the equivalent of $65. (It turns out if I had chosen the ambulance, it would have been free. But I am glad I didn't tie up valuable community resources.)
At the hospital, I was examined by three stroke specialists. I had blood taken (a complete blood count, a check on clotting factors and inflammation, etc.). I also had an EKG and, finally, a CT scan of the brain. Doctors in the UK do not seem to want to communicate very much to patients, at least in my experience. While the doctors reiterated the diagnosis of Bell's palsy, they said nothing about the CT scan results, and told me I could go.  They gave me a prescription for steroids, a high dose tapering down over 10 days, and one for an antiviral for 5 days. That was on Friday.

Initially, when I saw the doctor in Buxton, she said the clinic would charge me, but when I went back on Monday to pay, I saw a different doctor, a male, who said the clinic would waive the charge. He also told me that after further review of the CT scan, the hospital wanted me to come back and have an MRI.  I reported that after three days on the steroids, my paralysis was nearly gone, and he remarked, "That's another reason to have the MRI. It's not typical for Bell's palsy to respond that quickly. It usually takes months, and at least two weeks, to get better." I began to worry that had suffered a stroke or had a brain tumor or aneurysm.

I think that in the UK, if you are part of the National Health System (NHS), your primary doctor coordinates your care. But I, of course, was not in the NHS, and I think that clinic doctor just wanted to wash his hands of me. He told me to call the hospital MRI department myself and advised me to get a blood-pressure cuff to check my blood pressure. (He never told me what my blood-pressure was; he only said it was "not bad.") He said if my blood pressure shot up, I should go immediately to a hospital A&E (accident and emergency) room.

Now I was worried. I called the hospital MRI department, but the receptionist said that the order had just come through and was being reviewed. She also said that the department was backed up for three weeks. Kevin said to me, "We need to get to the bottom of this," so I found an imaging center in London that would do the MRI for 250 pounds (about $391) a few days later. 

My one piece of good luck was getting in touch with a medical secretary at the hospital who began looking out for me. I explained the situation to her, over the phone, and asked if I could get my records faxed to the imaging center in London.  She tried that, but on Wednesday, by the time I had it all arranged, the hospital got back in touch and said that if I could come in at 8:30 a.m. on Sunday, they could do the MRI.  

I cancelled the London appointment and continued to take my blood pressure, which was a little on the high side (about 140/80), but nothing scary. In the meantime, I didn't feel too bad, mostly just more tired than usual.

On Sunday, now more than a week since I had first been examined, I returned to the hospital for the scan. The next day I called the medical secretary, who began to call the MRI department on my behalf.  I waited two more days and called back, but the secretary told me she had not been able to get the report from the MRI department.

Finally, on Thursday, I got the news: everything on the MRI scan of my brain was completely normal! The medical secretary tried to fax the results to my doctor at home, but her fax machine would not let her send it overseas. So she emailed it to me, and I emailed the report to my doctor,  who said that looked good to her too.

What a tense couple of weeks! But all's well that ends well. Amazingly, the exams, blood tests, EKG, CT scan, MR and  medications--cost me exactly $0! In the UK, even today, everyone, citizen or not, is entitled to free emergency care at hospitals on an outpatient basis. 

I also found out that immediate medical attention is not only advisable in case of stroke, but with Bell's palsy, you need to start on steroids and antivirals within 72 hours of the onset of paralysis to help ensure the best outcome.  As for me, I was one of the lucky ones--no stroke, and I recovered from the paralysis  and the lingering viral symptoms (earache and fatigue) within two weeks.

Addendum: We do not have travel insurance because it is very costly when you are over 65 and you want to travel long-term. The best I could find cost about $6000 in premiums and had a $2500 deductible. Our Medicare supplement plan will reimburse us for emergency care in the first 60 days--and I would have been still covered at that time of this incident. After that, we just planned we would pay any medical expenses out of pocket, because in most parts of the world, you can get a lot of medical care for $8500. We do have a medical evacuation plan (Medjet Assist) that will airlift us to a hospital near home if we are admitted to a hospital.

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