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16 January 2007
Hi, my name is Jim Harford. I'm 65 and live on the East Coast of Australia at Federal, near Byron Bay in New South Wales. I was diagnosed with a Spinal dural arteriovenous fistula (at T10) in early June 2006. It was surgically removed before the end of that same month in St. Andrews Hospital, Brisbane, Queensland by neurosurgeon, Terry Coyne.
20th October, 2006. 4 months post op.
Here is my story so far. I hope that it might help others in similar circumstances to deal with the problem of spinal DAVF and be able to take the best decision for themselves. It is my experience that we all walk an individual road, and although there are others who will give you directions if asked and there are signposts erected, the choices made at junctions are each person's responsibility. In hindsight, I wish I had acted earlier and had gotten a second opinion.
After 4 months, I think my physical symptoms have stabilised to a limp and slight weakness in the left leg. Feeling has improved a little in both legs from ankles to hips. I don't think there has been any decrease in the level of pain in feet or buttocks and have developed pain in inner thighs which I did not have before. All pain varies from 2-3 on good days to 5-6 on bad days on a scale of 1-10. There are many of you out there who would say, 'Friend, you're lucky. Count your blessings'. But I am hoping for a reduction in pain so I can resume something like normal activities. My 3 month checkup confirmed the obliteration of the fistula.
I recently retired in February 2006 after a lifetime in civil engineering management. My wife, Heather, and I planned on continuing our hobbies of bush walking, gardening and helping in local community projects.
For about 2 years before that, I had difficulty urinating at night, some dribbling but bladder emptying OK as far as I could tell. No problems during the day. Doctor said that it was mild prostatitis and was common at my age and to take a 'wait and see' approach as long as symptoms were stable. I began taking saw palmetto capsules as well continuing my usual multi vitamins. This continued OK until about June 2005 when I started to get occasional cramps in left leg calf at night. Then about August, found more difficulty in passing urine at night, although still OK during the day. Then found soon after, started to get pains in toes while driving (OK when not) then soon after all bottom surface of both feet began to pain on occasion, becoming worse as getting into November-December. Doctor prescribed Flomax for urinary problem and referred me to a physiotherapist for the foot problem. Neither worked. I noticed an occasional painful twinge in both buttocks while sitting at night in December.
I was working away from home in Sydney at the time, so thought that I would put off further treatment until I retired in early February and commence further treatment locally so could have continuity rather than swapping doctors.
During all this time, my wife and I were continuing our bushwalking at National Parks close to Sydney during the weekends and I noticed (probably January 2006) that my wife was waiting for me to catch up with her on the hilly sections rather than the other way around as previous. Immediately after retirement I saw my local doctor who prescribed a whole series of tests: blood, ultrasound on leg arteries and feet, X-Rays on back and referred me to a podiatrist for the foot problem. All tests came back negative, given my age and that I was well past my 'use by' date. Shoe inserts from the podiatrist, taping of feet and exercises did not help. My doctor effectively threw up his hands and said 'I don't know what's wrong with you'.
In the meantime, I got a referral to a urologist as the urinary difficulty was beginning during the daytime also. The urologist felt my prostate and although only slightly enlarged, recommended a TURP operation which was carried out in mid-March 2006. After the catheter was removed 2 days later, I found great difficulty in passing urine at any time. For about 6 weeks after that I continued to have great difficulty urinating at any time and could only achieve it by having 3-4 successive strong squeezes. I would begin to pass a little on the 2nd, stronger stream on 3rd and something like normal on 4th and I was having frequent urges (say 8 in day, 3 at night). I think that all this straining did not help my spinal condition as all this straining could have increased pressure at the DAVF site.
Prior to the doctor's remark of 'I don't know', I began to research the web re possible causes of my continuing and worsening sore feet and buttocks (the pain only occurred while pressure was on that area, feet while standing, buttocks while sitting). I came up with possibilities of spinal stenosis or syringomyelia (but my symptoms did not surely indicate either). So, at the same time as I got a referral to the urologist, I requested a referral to a neurologist (both referrals were at my request).
The earliest I could get an appointment was in August (16 weeks wait, I should have tried to get someone else but thought that he must be good to have such a long waiting list). In the meantime, on advice from a friend, I saw a osteopath who did some massage and manipulations. The osteopath could see how much balance I had lost (could not balance on toes) and recommended that I advance the appointment with the neurologist. I managed to see him in late May, had an MRI on June 6, saw him again on June 13 where he informed me that the DAVF had been detected on the MRI after gadolinium injection, booked me in for surgery a week later and the op was performed on June 22nd after an angiogram the previous day (I was offered embolism in place of surgery but elected surgery). So things went very fast once the process was in motion.
From approx. mid-February up to the time the operation to surgically obliterate the fistula was performed, the following symptoms developed. My feet were always sore but varied in intensity. Some days I could walk 3 kilometers without problem. Other days they were too sore to even stand on. Same thing with buttocks to sit on. Beginning from my left foot, then right, I got a general loss of feeling progressing up to the groin by June. When my wife touched my legs in bed it was like an very mild electric shock. I developed a mild limp on my left side (the side where the artery was feeding the fistula).
By mid-May I was unable to stand for any length of time due to pain, sitting was painful and I had a slight numb feeling in both legs to near hip level but could still feel pin pricks anywhere. For the last 4 weeks before my operation, I did very little exercise, but continued stretching exercises which I had been doing for years. Resting seemed to somewhat relieve the pain in feet and buttocks but the numb feeling persisted from hips to feet.
I was walking a day after the operation, but found that I could only do short walks. I was on a catheter immediately after the operation, which was removed after 24 hours but was replaced immediately after as I couldn't empty my bladder completely. The catheter was removed the day before I left hospital, 3 days after the operation. I have had difficulty ever since, even though taking recommended doses of prazosin after my urologist subsequently diagnosed DSD-DH (overactive bladder). Have tried oxybutylin but it causes constipation in me. During the last 3 weeks I have found a way around the problem by waiting until I start to leak from 'overflow incontinence', then can go (with tap running noisily) and pass urine on first squeeze. But it's not pleasant waiting through the urges until I start to leak. I am hoping my system (or confidence) begins to run normally soon and I can go whenever.
Pain in my feet and buttocks seems related to how much effort I expend during the day. If I do any lifting or bending, I seem to get a week of pain, if I just laze around, feeling, bored, useless and depressed , things seem to improve slightly. I am hoping that mild exercise is triggering the repair process in my spine and that the pain I feel is part of the neuron repair process. It seems a difficult balancing trick to maintain a 'use it or lose it' attitude, yet not overstrain the repair process.
Pain relievers (amitryptaline, carbamazepine have no effect. Have tried valium also with no effect other than being doped out). I have had 2 sessions of light acupuncture which seems to increase the pain, but maybe it's just coincidence. Maybe it's triggering the repair process. My treasure, my wife, is always there with constructive help but I cannot avoid depression sometimes when I see her doing the household jobs which I normally do, digging the garden, cutting logs, etc. Things will improve, I know. But it would be nice to know by how much so I can come to terms with it. In the meantime, this certainly is a strong life learning process and I am discovering many things about myself I would not have found without the introspection necessary to deal with this life change.
6.5 month update:
Have worked through neurontin and lyrica with no apparent effect. Will try topamax next but am a little concerned with some reported side effects: intraocular pressure and memory loss. I read on the Carecure site that neuropathic pain can kick in at 4-6 months post as nerve recovery proceeds as it seems the nerves have rejoined but to the wrong sites causing confusion in the brain where the pain signals are processed. I have lately gotten pain in the calves and ankles where I did not have pain before but it is not high level, mainly bothering me at night.
I have gotten over a depression stage, realising that I have to accept what comes as I have no other option (apart from bowing out, which I would not do for my wife's sake and also it is early days yet as recovery can occur up to 2 years).
I found that exercise definitely improves the recovery rate, unfortunately this also increases the pain areas as noted above. I am hoping that the pain will lessen or that I will be able to tolerate it with the right combination of medication (which I have'nt found yet).
Update: 11 August 2009 By Jim's wife Heather Harford
Jim's was a spinal dural arteo venus fistula malformation positioned in the thoracic spinal cord.
He had an operation to remove the malformation which was successful. Having said that, the normalisation of blood supply to spinal cord caused other problems. He developed neopathic pain where ever there was pressure. Up to his thighs if standing, on his lower torso if sitting. He tried all the medications like neoronton, lyrica etc with out success. The pain was like acid burning. Every thing from his chest down was affected. Eventually his kidneys started to fail. The rest is history.
He remained a great person to be around even while he was enduring such horrible pain. He did not complain or become bitter and managed as best as he could. We called him Gem, not Jim.
Jim passed away 2 years ago on the 2nd August, He took his own life.
Jim was the most wonderful considerate husband and father and his going was a great loss to us all.
Jim was a great friend as well as husband and also a very caring, empathic person. His presence enriched all of our lives in the most wonderful way and he will always be close to us in our hearts.
© Copyright 2007 Jim Harford
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