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.

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.

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.

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 was 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.

2nd Dose of Moderna Vaccine – July 15 2021

I would have liked to get Pfizer again to be consistent with the first dose but the important fact is getting a 2nd dose. Pfizer seems to be in short supply and it is said that both Pfizer and Moderna are equal. We will never know but it is more important to be vaccinated than worry about which manufacturer made it. This Moderna vaccine made me feel a little “off” for the day and my arm was sore for a couple of days. This did not happen with Pfizer. My husband reacted worse with Pfizer.

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 can 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. I am 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.

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 good.

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.  Most of the medical appointments I have had previously, other than the hospital, are not paid parking,  I pulled into a disability parking spot (I have the blue badge still from my hip issues)  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.

Physiatrist phone call (Nuclear Bone Scan Results)- 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.

I finally followed up (when I felt my GP was ignoring the kidney stone issue) so that I could see the report. The report states the following

Delayed images demonstrate increased activity noted in the right kidney with hydronephrosis and hydroureter down to the UVJ.

(The UVJ junction is where the ureter enters the bladder)

Of course they found arthritis as this was a full body scan and that is normal for my age and would probably not have been found without the tests.

The summary of the report concerning the kidneys is as follows – Hydronephrosis and hydroureter on the right, which in light of the patient’s back pain, could be due to a distal renal stone which is causing some obstruction in the right collecting system. This could be exacerbating the patient’s chronic pain. It appears to be right sided and further assessment with a renal colic CT is recommended.

Booster Vaccine – December 29 2021

This was very easy to organise online. I joined a waiting list for the booster at a local pharmacy and only waited about 6 days until I had the offer of this appointment. It was easier going closer to home the pain I am in currently. I was non- reactive to this dose as it was Pfizer.

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.

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. I kind of put my foot down about the kidney issue needing to be looked into despsite her protests. She then, very reluctantly, 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

The physiatrist had set me up with this test again at the same place but with a different doctor. It did appear that this doctor was more thorough than the previous doctor and also did tests further up my leg. It resulted in there being no issues that they could find. Obviously there is some issue otherwise my foot would not still be numb. the neurologist did confirm that when hip surgery is done that they move a n manipulate many things and it may well be something happened but it is not a worry as there is nothing seriously wrong. Hmm well I guess a numb foot is the result I’m left with.

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, 2 of 10mm and 1 of 13mm 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 will tell you it is painful and it feels like you  are dying .

CT Scan – 2 February 2022

This was a very quick scan as it was concentrated on the kidney area. This was the first scan I remember not having to undress for. I always wear sweat pants for these procedures anyway but currently with the pain I’m in sweatpants are my most comfortable clothes.

Urologist Follow-up Phone Consultation – 10 February 2022

I already have the results from the CT scan before talking to him. so I knew what would be said. For anyone in Canada you need to check out Pocket Health online. You can request all your medical records such as CT scans, MRI’s and X rays. Through Life Labs you can access results to bloodwork. For Pocket Health there is a charge of $5 per test. I waited the first year because I didn’t know about it so my first $5 got me all the records up to that date. I did not subscribe to unlimited for $49 because I never dreamt that this would still be going on.

The urologist confirmed that there are 3 kidney stones and the largest one is now 15mm in size. This time the report did not state the size of the other 2 stones. However the largest has grown 2mm since the scan in October 2020. He stated that irrespective of whether or not this was the cause of the pain that they needed dealing with. Thankfully someone is FINALLY on my side, although he was non-committal about whether or not it was the source of my pain. He said that he wasn’t sure about the urine back up as there was no kidney stone causing the blockage. I had forgotten while talking to him on the phone that the nuclear bone scan had shown constriction in the urethra but I requested to access the records online through Pocket Health. This was from a different clinic and took longer to receive.

The report from the scan is as follows

I made it very clear to the urologist that I had researched options and was pushing for surgical removal, especially when he advised that to go in and break them up to remove them would likely be several procedures. I told him I was in pain so much I wanted them taking out in one go. So, despite him being the leading urologist at my local hospital, he then told me that this surgery was rare and that I had a choice of going (south) to Toronto or (north) to Barrie. I opted for Barrie because it is easier to get to and my eldest son lives there so there is a refuge if needed.

So now I am referred to yet another urologist and should hear in about 2 weeks.

Ontario Closures – 5 January 2022

Restaurants and recreation facilities to close and schools to be moved online again. This is for a minimum of 2 weeks, which we all know will be longer. This is due to the Omicron variant. It feels like the rest of the world is opening up and we are closing down again.

I realise that hospitals and ICU’s are being overwhelmed but I do feel that  now that 80% of adults in Ontario are vaccinated that we should be getting back to normal.

Medication Fiasco – 10 February 2022

Due to the fact that the Tramadol and Percocet are controlled opioids, which I totally understand, it is, nonetheless, extremely frustrating that I cannot order until the day before I run out and for Tramadol I am going to pick up meds, without any meds in my system because the day I pick them up I need them.  I have gone through this with the pharmacy and the doctor but the doctor refuses to back up the pick up day by even 1 day. This is a very frustrating experience.

However the 10th of February was ridiculous to the extreme. When there are no refills left at the pharmacy the procedure is to call it in and request more so the pharmacy will then send a fax to the doctor. This procedure normally takes 1 business day. As I knew I was taking my last Tramadol on the Saturday I requested a refill on the Thursday beforehand. On Friday I called the pharmacy who had heard nothing and would re-send the fax. The pharmacy then called me back to tell me the fax would not go through despite trying 3 times. I phoned the doctor but had to leave a voicemail. I also emailed, despite the fact they don’t answer emails any more (but they have done) and heard nothing back.

I spent the whole of Sunday without Tramadol and had to take extra strong aspirin instead.  On extreme pain days I take aspirin as well as Tramadol. Needless to say the pain was unbearable and I had to go to pick up the meds that were finally sent through for Monday.

On talking to the receptionist at the doctors office I was told that the doctor was away until the 28th February and that they can send through a 30 day amount of Tramadol. The receptionist also admitted that she left for the weekend at 1pm on Thursday and she is the one who deals with the faxes. There is only 1 doctor at this practice and 2 receptionists. I find that ridiculous that it all falls on just one of them.

Pain Progression

I have noticed that over the past few months leading up to Christmas 2021 that the pain has steadily been getting worse. Since Christmas the pain is now debilitating. Even sitting still is now painful after a short time. Without a heat pad, hot water bottle or a TENS machine I would be at my wits end, not that I’m far away at the moment.

Non-Obstructing Kidney Stones

The theory out there seems to be that the medical field think that non-obstructing kidney stones do not cause any pain. I would not only care to differ, but read about a case where a woman complained of pain and the doctor thought she was after more pain meds due to becoming addicted. In my case, as I’m sure for others, I hate being on meds and would way prefer to not have to take them but am stuck with them without choice. Taking more than prescribed it is unusual to become addicted but can happen.

In the case I read about however, they removed the kidney stones and the patient never took or needed the painkillers again and the pain went away immediately after surgery. so, I also don’t buy into “the kidney stones may not be the cause of your pain” theory.

Urologist 2 Appointment 14 March 2022

I had the choice of a urologist surgeon in Toronto or in Barrie. I chose Barrie as it is easier to get to from where I am and also less traffic. If there is one thing I try to avoid it is driving in Toronto. My eldest son also lives there so after the appointment I called in for lunch and to break the journey as I was in pain.

This urologist was extremely pleasant and took time to fully explain the surgery. It is called Percutaneous Nephrolithotomy or PCNL for short. He showed me the nuclear scan on his computer and moved the angles around. It clearly showed all 3 stones hovering in the kidney in the same place and one clearly obstructing the entrance to the ureter. This is why the urine is backing up into the kidney because it is not free flowing down the ureter to the bladder.

The surgery involves entering through the back and into the kidney where the stones are broken up and removed all in one go. Hurray!! Finally a doctor on the same page as myself! He recommended this and understood why I had been referred to him from the first urologist. I was in so much visible pain that he suggested he could fit me in for a stent to be placed as an emergency add-on next Monday. I was told if I hated it that it could be removed but it may well ease the pain as it will allow urine to flow from the kidney. So I was booked in for surgery for the stent on 22 March 2022. This would hopefully ease things until surgery was possible in approximately 3 months. As the province was opening up after Covid restrictions the cancer patients, quite rightly, were being prioritised.

I was sent home with surgery admission papers and told to get a Covid test prior to surgery and that I would receive a phone call the day prior to surgery to advise the time to show up. As this surgery was on a Monday I would be called the Friday prior. I was also told nothing to eat or drink after midnight the night before. The urologists’ office would call me the following day to see if I had any questions after reading the papers.

Urologist Phone call 15 March 2022

YAY!!!  I was told that the hospital had added in a further surgery day extra to the usual Monday weekly time and I had been prioritised and would receive the whole surgery on 12 April 2022. So that was great news and I was glad it was a month away due to the pain I am enduring. I have to go to a Hospital Covid testing facility 2 days prior to surgery with my hospital admission papers and they will be sent right to the hospital. As this falls on a Sunday my husband will do the driving because it is an hour each way.

This has been a never ending journey of pain and I am hoping that this will result in being pain free, or at least no more than age related aches and pains.

The belief out there is that kidney stone pain is the worst ever and far worse than childbirth. After 2 children, one a C-section and one a ventouse delivery, along with a total hip replacement, I can agree that kidney stone pain makes my other pains feel like a walk in the park. Debilitating is the correct way to describe this pain.