Quantcast

I think I am an AVM Survivor Now!


#1

Hello Everyone,

It’s my two-week anniversary following surgery and one week since returning home from the hospital. I felt compelled to write a summary of my experience since entering the hospital on June 19th. I would have contributed sooner but my devices kept punting me out from internet access because the SSL Certificates employed by Alberta Health Services don’t conform to the security standards required by either Google or the Chrome browser. Don’t get me wrong, even though the hospital I was in is old, it is equipped with all the latest and best equipment and have top-notch staff. It’s just that it is run by the Alberta Government which bows to no one! Patient accessibility to the internet is not on their priority radar at all.

For those of you are unfamiliar with me you can catch up by reading my profile at https://www.avmsurvivors.org/u/BrentN49/summary and my introductory post at Spinal Dural Arteriovenous Fistula – 38 Days until Surgery.

On June 19th an Angiogram was performed under general anesthetic to delineate the extent of the spinal dural arteriovenous fistula and to give my surgeon the needed information to carry out the surgery planned for June 20th. I don’t know what methodology was used to apply the pressure needed to stem the blood-flow following the extraction of the tube used in the Angiogram procedure but it must have been extensive as I still exhibit a huge and vivid bruise two weeks hence. Fortunately, due to the lack of sensory perception caused by the AVM I am not in any pain as a result.

The surgeon was able to ascertain, from the Angiogram results, a complication that would need to be addressed at the time of surgery. There was an artery present, at the same level as the fistula, which was feeding the spinal cord so extra special care would be needed to avoid any intervention that could compromise that artery’s functionality.

On June 20th the surgery took place. It took approximately 4 hours to perform. In my case, due to the location of the fistula, the surgeon needed only to remove the lamina from the T11 vertebra to gain access to the Dura and then into the offending malformation where the vessels were clamped and then cauterized. I was sewn back together and the lamina replaced with a special bone adhesive. No screws needed. No additional complications arose during the actual surgery.

Total time from being wheeled down to the operating theatre, the surgery, time spent in the recovery room, and wheeled back to my room was approximately 8 hours.

All in all, not near the formidable experience I had envisioned and for that I am grateful. The entire surgical team was professional, courteous, exuded positivity and confidence. My surgeon visited me and expressed he was confident the fistula had been neutralized!:rofl:

In my next post, I will recount how the week in the hospital following my surgery unfolded. Spoiler Alert: I found it to be more than a tad exasperating.

Be well and stay positive.

Brent


#2

Great to hear this Brent! Sure sounds like all went as well as possible, and now to be patient in recovery! Take Care, John


#3

Hi Brent this is a great summary. Congrats on being an AVM survivor! That’s a wonderful and huge relief. There could be no better news after all your years with symptoms.

PS I wish I read this post earlier. I just posted separately in “new member introductions” asking you for an update. :smile:


#4

It looks like we were writing to each other at the same time HaHa!


#5

Brent,

You sound like you had as good a time of it as its possible to have, so well done you and well done Alberta Health Services!

I think the bruising from the angiogram is pretty typical. I had a decent bruise after my embolization that was ok unless you poked it hard!

Im not sure I can wait for instalments! This is killing me! Just get on with the story! :wink:

Its great to hear from you. Im glad it has gone well. I hope instalment 2 is still good, if it does contain a bit of divergent adventure!

Best regards,

Richard


#6

Thanks @JD12. @Gumlan I’ve added a comment to your post Spinal AVM/F - surgery and bowel issues. And, in deference to @DickD, I’ll finish this post with the rest of my hospital-stay story, so Richard – this is for you!

The hospital room I was assigned was a private room. Smallish overall but it had a bathroom, a clothes closet, room for a couple of chairs for visitors, a small TV and of course the hospital bed and all the normal accoutrements associated with patient care (IV towers, oxygen etc.). My room also included a ceiling mounted electronic lift should there be a need for same. On the wall across from the foot of the bed was a large whiteboard which I observed would be updated with Patient’s, and Doctor’s particulars, any special instructions and the current daily attending Nurse and aides as well as the date. My room was located on the tenth floor with two large windows facing South-East which provided a nice view of the downtown Calgary skyline.
This was the room I found myself in following the Angiogram on June 19th as well as the room I would be wheeled from and back to on the day of my surgery (June 20th). It would be the room I stayed in until the day before my discharge from the hospital on June 27th.

On the eve of my surgery I was allowed to eat up until 11pm. I enjoyed a late night snack of toast with peanut butter and jam, enjoying the sights of the Calgary skyline lit up and the head of my bed raised to a comfortable 35 degree angle. I’m a light sleeper at the best of times but being in the hospital with all the new ambient noises, coupled the anticipation and apprehension of what the next day may bring, I managed only light naps throughout the night.
As stated earlier, the day of the surgery went relatively smoothly and I was in good spirits. Any last minute jitters were quickly dispelled by the excellent performance and demeanor of the surgical team.

The first thing I did when I woke in the recovery room was curl my toes. That worked and I was immediately satisfied all had gone well. After my obligatory time spent in the recovery area I was wheeled back to my hospital room.
The first thing I noticed different was the whiteboard on the wall. It now contained, in large block letters, the words “BED REST”. I enquired as to the meaning of those words and I was told they served as a reminder to all attending staff I had just undergone major surgery and I was not to be unduly disturbed for 24 hrs. That made sense to me.

A few hours later, a nurse came to check on me. She asked if was experiencing any pain, headache, blurred or double vision. I remembered my surgeon telling me not to wait for any pain to become severe before requesting relief because it takes a while to kick in. I explained the pain I was feeling at the site of the incision and she asked whether I wanted Percocet or some other pain reliever. I was not prepared to have options available (I thought that was a little weird). I just reiterated what I was feeling and left it up to the nurse to bring the right relief. As it turns out she returned a few minutes later with a Hydromorphone pill. She asked whether I needed a sip of water to take the pill and I told her yes. She tried to give me a drink of water but I was lying flat so I requested she raise my head. That’s when she told me that part of BED REST was no elevation of the upper body. I protested and she told me she could raise the head of the bed 10 degrees but would then have to lower it right after taking the pill. There was no further explanation for that particular BED REST restriction.
About an hour later, the nurse returned to check on the effect of the medication. I informed her there had been no noticeable effect and the pain was feeling a bit worse.

I have been blessed/cursed with a relatively high pain threshold but also an equally high resistance to pain medication.

She left my room to return a short time later and this time injected the dose of hydromorphone directly into my IV. Within 30 min. I felt more comfortable and dozed off. It was about 2am.

Now, there is a point to all this preamble but I thought it fair to lay the framework so the readers (those who haven’t dozed off yet) fully appreciate the following.

I don’t know how many of you have experienced really intense headaches. I’ve had my share of migraines, you know the ones where any light or noise renders you completely debilitated. I’ll take those any day over what I was about to experience.

At around 5:30am I awoke to the sunrise filtering through my windows. The shades of colour promised a sunrise of epic proportions and with the view of the Calgary downtown skyline, I knew it would be spectacular. In anticipation, I activated the controls on my hospital bed and raised the head section to 30 degrees. The sunrise and view was everything I had imagined and more. Suddenly I felt as if my head had imploded. The pain was like nothing I had experienced before. I couldn’t see straight. I fumbled with the bed controls trying to lower the head section. Wave after wave of pain enveloped me from my head to my chest. It only started to ease when I was finally prone again, but even then the slightest movement of my head would start the pain cycling once more.

I learned later that during the Dural AVF surgery quantities of cerebrospinal fluid is lost and it takes the body 24 to 36 hours to replace. It was that lack of CSF that perpetuated the headache. Raising the head was the catalyst. Lesson learned the hard way - BED REST means BED REST. And I still had about 12 hours of BED REST to go. Suffice to say I was a model patient for the remainder of the day.

There were a few more interesting episodes that ensued over the course of the next several days.

Apparently it is common protocol to conduct Sensitivity tests on patients in the Spinal Ward routinely throughout the day. The tests consist of alternating pin pricks and soft dabs bilaterally from the feet to the abdomen. I tried to explain the tests had no merit due to the extent of peripheral neuropathy that had manifested over the past eight years. My attempt to explain their ineffectual results fell on deaf ears, after all, the tests were a mandatory part of the nurses’ daily regimen while attached to the Spinal Ward. I finally gave up after a few days and just watched their confused faces as they tried to complete their daily tick sheets.

For reasons yet to be determined, my bladder was/and is retaining abnormally high volumes so I was being catheterized 4 to 6 times a day. Suddenly I became the go-to patient for “hands-on” training for nurses with budding nurses or nursing aides in training. If had any modesty going into the hospital, it was certainly long gone by the time I left!!

I hope you enjoyed my hospital-stay anecdotes in this post. Future posts will concentrate more on the ups and downs of my actual recovery process, how ever long that process takes.

Brent


#7

Brent,

You’re quite the storyteller! I love the descriptions and can imagine the Calgary skyline. I think you’re telling a great story that could help others in years to come. And it’s good you deduced a cause to your headache quickly - well done!

I hope you do well in your recovery and I’m looking forward to the tale.

Very best wishes

Richard