Physiatrist Phone Consultation – March 15 2021

This phone consultation was to go over my condition and medical history. From this conversation an appointment was made to see her in person 3 days later.

Physiatrist Appointment – March 18 2021

The physiatrist had looked over the files that my family doctor had provided her with and the results of tests. She seemed very surprised that there had been no MRI done of my lumbar spine and would set that up for me. That came back for July 4th 2021 which was not my choice of birthday celebrations for myself!

She explained, as well as showing me on a chart, where the facets are and how that can deteriorate which is what needed to be checked on the lumbar MRI. When emailing my doctor later to update her she told me that there had been an X-ray done of my lumbar spine and nothing looked out of the ordinary. At this stage I could not remember the X-ray of my spine but looking back over my notes it was done along with the hip X-ray as the first test.

She had me stand and bend and looked at my posture and then said she would arrange for the MRI. She completed the form along with my family doctor to send to my insurance company to support my claim for long term disability payment.

 

Ultrasound Vascular (aneurysm/leg/foot) – March 22 2021

The vascular surgeon has his own office with ultrasound machines and it is far easier than trekking to the local hospital. As of yet due to Covid 19 I have no idea what this specialist looks like as the technicians do the scans and then he phones me with the results. This time I was escorted to a different room with different machines. Rather than just an ultrasound for the celiac artery aneurysm near my sternum this one incorporated an ultrasound of both my right leg and right foot. Although originally it was for the aneurysm he was concerned about the numbness still in my right foot. This took about 40 minutes to do and blood pressure was taken in a couple of places along my legs which was a weird sensation. Also my big toe was  monitored.

 

Neurologist Appointment (EMG) – April 13 2021

The doctor checked my leg and foot with electric stimuli which is small electric shocks. This was not a pleasant experience although not really painful . Basically parts of my leg and foot were given electric shocks to test reactions. I know the reaction was slower on some parts of my right foot but there was still a reaction. She started with pin pricks, asking me if I felt it and then graduated to shocks. The most unpleasant part, which I was warned about prior to her proceeding, was when she did electric shocks back to back for several seconds. That was not at all  nice and was very unpleasant. As soon as it’s over though you do not feel anything. No wonder dogs stop their behaviour with a shock collar.

 

Vascular Consultation/Reports – April 26 2021

This was a phone consultation that was moved forward from 2.30pm to 12.30pm the day of the consultation. The problem was that the receptionist had already given the doctor the phone list before she phoned me and changed it. Hence as I was about to phone the office on a different phone I finally got my call  an hour late at 1.30pm .

Everything is in order and there was nothing found with my leg and foot. As for the aneurysm it is still the same and has not enlarged. Initially I was told it would be looked at every 6 months but the doctor decided that a yearly check up would be sufficient. I was told that when, or if, it gets to 2mm (currently 1.3mm) then they will intervene with surgery. The surgery is as non-invasive as possible and is apparently not much of a deal. I asked if it was rare as I had read so and he confirmed he had seen a few but it was relatively rare. I read that statistics say 4% of all aneurysms are celiac artery ones.

1st dose of Pfizer vaccine – May 26 2021

Despite my reluctance to a vaccine that has not been time tested I decided to go ahead with the first vaccine. My reluctancy stems from my mother being offered Thalidomide for morning sickness (which for my mother was round the clock every single day for 9 months) while pregnant with me. Thankfully she refused and I did not end up being born deformed like so many other children. I was also reluctant due to the news that the Astra Zeneca vaccine was related to blood clots. Already having an aneurysm I was wary. I also, being English, read British newspapers online and was hearing about Astra Zeneca issues way before I heard about it in Canada. On many things we seem to be behind Europe here in Canada. Once the options were down to Pfizer or Moderna then  I decided to go ahead. I suspect that in the future for travel purposes it would be an issue if you could not prove vaccination and although travel is  not in my plans I decided the time is right to just go ahead and get this done.

I went to a nearby Ice Rink for the vaccine and it was extremely well organised. I had booked online a week prior and turned up on time and barely waited 5 minutes. Everyone had to sit in another area for 15 minutes afterwards to ensure there were no immediate adverse affects, The 2nd dose automatically booked online in the booking system when booking the first dose but since then the Ontario government have declared that they want to speed up the 2nd doses and have everyone vaccinated by the end of August 2021. It is staggered depending on the date of the 1st dose but we shall see what transpires. As it stands now my 2nd dose is set for September 15th.

Physiatrist phone consultation – May 28 2021

The physiatrist confirmed that the neurologist had not found any issues with the EMG. I am bemused as well as the doctors because my foot and toe are still numb 2 years after hip surgery. The physiatrist is waiting for the MRI in order to assess my lumbar spine but did suggest that I was a candidate for injections. Exactly the details of those injections I do not know  but should it come to that I will ask those important questions then. I sometimes get the impression when talking to doctors, especially about results, that I ask more questions than they are used to. I seem to have to interrupt to ask questions but then again in Covid world the face to face interactions have become phone consultations and there is no body language to gauge.

During this conversation we discussed how the physio was going and as I was not feeling any benefit after 6 sessions the physiatrist advised me to stop going until after the MRI and when we get the results from that we can take it from there.

Medication Issues

Unknown to me, my family doctor placed a 28 day repeat on my Tramadol. As yet I am not sure about the Percocet or Meloxicam at this point. I only found out about the limit on the Tramadol when I phoned the pharmacy because my husband was unable to pick the meds up for me at the weekend. I phoned and talked to the pharmacist who explained that the doctor had put a 28 day repeat on the Tramadol and he could not renew that prescription until the 29th day. I emailed the doctor (because of Covid this is still the protocol) and explained that it meant I was left on day 29 without meds until I went to collect them and that caused severe pain to do that. I got a terse reply with an explanation that it was a controlled drug and it was the only way she give me repeats. I am waiting for reply back to my email stating that this is the first time this has happened and I have had Tramadol previously with repeats without a 28 day repeat. I really am at a loss as to what has changed and the reply to my email came back as an automated email to tell me that the doctor is on vacation for the next 2 weeks.

UPDATE In an ongoing discussion with the doctor she’s not quite understanding my dilemma. She then gave me 29 days of Tramadol but now I can’t collect until the 30th day so it’s the same. I’ve spoken to her on the phone and it’s not made a difference. If I feel incapacitated my husband has gone for the meds as he’s working from home due to the pandemic.

MRI Lumbar – June 18 2021

I was lucky to get a cancellation with a weeks notice, so instead of the MRI on my birthday in July it got moved a couple of weeks earlier at 6.30am. I agreed to this of course because anything to speed up the process is helpful. the hospital was quiet at that time and it wa a relatively quick visit.

The physiatrist had requested they check for facet syndrome which is what she told me she suspected it may be. I was also directed to the other MRI room where I had not been before and was told that the MRI in this room was twice as powerful in seeing detail as the other one. I am hopeful this will help in finding the cause of the problem because this seems like the last chance.

Physiatrist Phone Consultation – August 16 2021

This was so long because I left it 3 weeks before I asked about my results. they tried to claim that they had not been sent by the hospital but my family doctor disputed that happening. I do seem to think I was overlooked. Yet again another reason to advocate for yourself.

All that came of this consultation was confirmation that the back pain issue is not coming from my spine. YAY! but no idea where it IS coming from. Again.

Physiatrist In-Person Visit – 17 August 2021

She once again had me show her where the pain was on my body which is at the lower back right side and when it becomes severe then the pain comes to the front. I think the fact that the pain is also at the front has everybody stumped. I feel as if I am being ignored, or rather my symptoms are being ignored. At this visit the doctor was concerned about the facet joints which are at the side of each of the vertebrae of the spine. I have been saying that I don’t think it is anything to do with my spine but I keep being told that pain c an move which is a fair enough point, except I’m sure it really isn’t my spine.

Massage was suggested. I booked  2 massage sessions at the place I went for physio recently and the masseuse was concerned it was a kidney problem. She was hooked on this idea and I told her that kidney issues had been ruled out. I really felt that she was wrong but this woman was way more intuitive than I knew. More on this later.

Doctor Phone Consultation – 30 September 2021

This was a phone call for me to update my GP on how things are going and how I am coping. I need to say I am not coping very well and appear to be in more pain than I have been. Whatever is going on has for sure gotten worse. There are a few days when I feel OK but they are becoming less and less. I am of the mind that I may be in pain for the rest of my life and that thought is unbearable. I also feel for my husband who is having to do more and is also restricted on where we can go and what we can do, not that we can do much or go places currently due to the pandemic.

My GP feels she has failed me and has said that in the very many years she has been a doctor I am the only patient that has her stumped.

In all fairness she has sent me for many tests and referred me to other doctors so i don’t feel that she has failed me at all.

Pain Clinic – 15 October 2021

I visited the clinic to test the spine especially the facet joints at the right side of my lumbar spine. After a consultation about where I was feeling pain they had me me lie face down whilst they injected a freezing into my spine and facet joints guided by ultrasound.  The purpose of this is that if I feel relief when the joints are frozen then that is obviously the issue and injections would be the next step.

As i moved to get up the doctor asked if I felt better and I told him I wasn’t sure yet. He said the results are immediate and I should already feel no pain. I made the obligatory appointment for a return visit in 2 weeks but I knew then that nothing had changed. The usual painful walk to my car confirmed that for me.

Pain Clinic Follow-up – 30 October 2021

I knew this was a follow up I had to make but I did not feel like taking the 40 minute drive time there and back to do nothing. The assistant was all for my signing a waiver for treatment until I told her I didn’t think there was going to be any treatment as the freezing had not worked. She looked at me in surprise as if I was the only person who had ever said that to her.

On consultation with the doctor he at least put a positive spin on it to confirm that it was not a problem with my spine and at least that could be ruled out. I am thankful for that because a spinal problem would not have been fun. Not that this pain is fun though.

Physiatrist Phone Consultation – 29 November 2021

Again I phoned after 3 weeks of not hearing about my results. Not a good impression being made here concerning follow-up.

She also agreed that it was at least a positive thing that my spine was not the issue and decided to send me for a nuclear bone scan. She didn’t tell me what it was and didn’t explain it fully but I have a friend from the UK who used to work at a nuclear scan facility and she told me what it was. Then of course Google told me what to expect at least.

Nuclear Bone Scan – 16 December 2021

When I was phoned about the date for this scan it was explained to me over the phone what to expect. It was actually very well explained so I went prepared not only for the test but with food in case I couldn’t find a place to eat during the break of treatment.

This again was a 40 minute drive from my home very close to where the pain clinic is. My plan was to park up and during the treatment interval then find a place to eat but reality was different. despite using GPS it was not an easy place to find. When I got to the building it was the back so, as there was no identifying signs or even a street number that I could see I drove around the parking lot to the front and still could  not identify this really was the place. I asked a man who was at the pay to park machine and he thought I was at the right number. It was a medical building and there was no signage anywhere. Crazy. I also did not want to pay to park and then find out I was in the wrong place because I had a limited amount of cash on me and I don’t have a credit card. I was  not prepared to pay to park. All the medical appointments I have had previously, other than the hospital, are not paid parking, I tell a lie, my GP is a $4 charge but I have a blue (disability) badge that lets me park in a different area for free. I was lucky here too because I found a disabled parking spot right at the front door. I pulled in there and knew right away that I was going to eat in my car to keep the spot. It was a very large and busy building with many people constantly coming and going and the parking lot was doing a roaring trade.

I was greeted by a receptionist who shooed me out of the door quickly to ask me the Covid questions and ask why I was there. I later realised there was a paper sign taped on the door saying to not enter but no-one would ever see that the way they had propped open the door. I confirmed my appointment and showed my OHIP card and was asked to wait. OHIP is Ontario Health Insurance Plan and is, apart from  not covering dental as the NHS (National Health Service) does in the UK,  covers all medical services that are essential. I have to admit with all the tests I have had and the doctors I have seen that OHIP has done me well. It does not cover any medications but our private work insurance covers that between myself and my husband.

So I was led into the area for nuclear scanning and a scan was done of the area of my body that is causing me trouble, namely my lower bag and the front above my waist. I was injected with a dye that has a very small amount of radioactive dye in it. This is to see how well the dye absorbs, or doesn’t. I was then sent away for 2 hours. As I said previously I came prepared! I had snacks with me along with my Kindle and also my small knitting bag which is mostly socks in that bag. I also like people watching so that was fun too!

When I went back I was scanned like a regular CT scan except this machine was not just one that moved along your body. It also could move over your body right to left as you lay on your back. Then they changed the machine so that part of it came near my head because they needed to scan my whole head. I have no idea why they did a few of these things but I lay back and let the doctor do what he needed to do. There was time to chat as it was scanning and the doctor was professional but personable and it made the whole process more pleasant. the scanning took about 45 minutes but of courser the while procedure was about 3 hours.

Doctor Phone Appointment – 17 December 2021

Phoned out of desperation about pain. Explained that pain is off the charts some days and I either throw-up or I take aspirin and lie down. there are days I can barely function with pain and other days I can cope. Pain never goes lower than a 5 out of  10 on any given day.

As the Doctor rightly said, she knows I am not a complainer so accepts I really do have pain. She did not see the need for another renal CT scan to check my kidneys over a year ago but decided to refer me to a urologist.

Physiatrist phone call – 28 December 2021

The purpose of this call was concerning the nuclear bone scan results. It was confirmed that there were no issues with my spine  but the scan had thrown up the fact that I had a constriction in the urethra which was causing inflammation in the right kidney. Right away I knew this was where my pain was coming from. As this was now no longer a muscular or skeletal problem I was being handed back top the care of my GP to whom she had recommended bloodwork and a CT scan.

Bloodwork – 30 December 2021

Results of the bloodwork are available online after 24 hours.

Hematocrit was slightly higher than the accepted range and this can be due to a number of facts, one being kidney disease.

Cholesterol was high.

Alanine Aminotransferase was high. Again this can be due to kidney problems.

Doctor Follow-up 5 January 2022

For a follow up from the bloodwork, the doctor told me that my cholesterol is a little high and she is worried that as a post menopausal female there is a higher risk of cardiac arrest or stroke if cholesterol is high.

Also as I have a fatty liver she has suggested I should try to lose weight which under normal circumstances I would be gung-ho about. Having severe pain however limits the amount of exercise I can do, if any, but I am  dedicated to changing my diet. The doctor gave me three  months to see if diet can bring down my cholesterol.

I am dedicated to being strict on weekdays and allowing a little leeway over the weekend, without going too crazy. I am eating either porridge or steel cut oats for breakfast with blueberries and apple. Oats are supposed to bring down cholesterol so we shall see, I actually love oats so this is not a problem for me. I also read that 2 apples a day is advised so I have bought both red and green apples.

I need to lessen the red meat which is easy enough as I love chicken and fish. Following a Mediterranean diet seems a good option so that’s what I am trying out.  I cannot unfortunately, after eating salads all my life, eat raw veggies as they seem to disagree with me. So I am planning to do air fryer roast veggies as a side and also to put into pasta either hot or cold. With heart healthy olive oil and Italian seasoning this seems a good idea. I am also planning to eat more tuna and sardines as well as canned salmon. Of course I plan for fresh fish too which is a cinch to cook in an air fryer. It is made easier by the fact I am on medical leave from work, possibly until I retire in July 2022.

My GP did NOT think I needed a CT scan because I had already had a renal (kidney) scan in October 2020. I have to admit I was surprised at this and told her I thought my pain was reflected in where my kidneys are. She then decided to refer me to a urologist.

Bloodwork – 11 January 2022

Cholesterol was slightly less but other factors were showing levels that could indicate kidney issues.

Neurologist – 12 January 2022

 

Urologist Phone Appointment – 14 January 2022

This doctor was very concerned that no-one had picked up on the fact I have 3 (yes 3) kidney stones each 1cm (yes each) in length. He was also very concerned that my family doctor didn’t consider I needed another CT scan. I asked if in the time since the last CT scan which was in October 2020 they could have increased in size and obviously he said that was a possibility.

He really was stunned that no-one had yet dealt with this matter of kidney stones. The next step is a CT scan, of which I will have a date within the week. He explained, depending on the results of the scan there are two approaches to sorting this out. The first one is to go in with a laser and break up the stones. If it needs more than this then surgery to remove them will be the answer. The pain i am suffering is now so debilitating I would be grateful for surgery to sort this out. Everyone who has suffered kidney stones, whether they have had intervention or not will tell you it is painful and it feels like you are dying .