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Established April 15, 1995
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10 June 2004
My name is Ann Jarick; I live in Brisbane Australia. In April 2002, I had become concerned as to why I was loosing sight in my left eye. I had visited an Ophthalmologist every four weeks over several months and he could find nothing visibly wrong with the eye. I began to believe I have had a stroke at some stage and the stroke had not really affected me, except for my sight. I began to worry that cancer could be the problem as I had had a cancerous lump removed from the left breast, just 12 months prior and received both chemotherapy and radiation therapy. I was worried; did I have a new cancerous lump behind my eye? I was questioning both treatments, had something gone wrong during those treatment to cause my current problem? All these questions were crossing my mind and began to cause my blood pressure to rise. After the last visit to the Ophthalmologist (although he wanted to keep checking), I became insistent we go further. A CT scan was ordered and as I sat quietly waiting for the results, the radiologist called me aside and expressed concern. He advised me I had what appeared to be a giant aneurysm behind my left eye.
I was sent directly to the hospital for a further angiogram. On examination I was told the aneurysm was within the left suprasellar cistern, it had a abroad based origin from the poster omedial and measured 1.3cm x 1.3cm x 1.9cm. (ie., behind the eye on the artery leading to the brain.) I was told at this stage because of the wide base, it would be difficult to operate on. In one way I was relieved about not having any cancerous lump behind the eye, but this new problem frightened me just as much. Being diagnosed, and told the seriousness of the aneurysm, knowing the possibilities of its rupture; set my life in a spin. I became extremely stressed, scared to sleep, and every noise I heard in my head made me think `this is it'.
The doctors had to make the decision, either coil the aneurysm or surgically clip the artery, they said I could leave it, I never gave them that option! I searched the web looking for answers and knowledge about aneurysm's, the information I found made me doubt whether I would survive until surgery! Just the unknown factor would the doctors accept to operate and fix the aneurysm? Could I survive until surgery? What method would be achievable? It took three months for doctors to decide, in the meanwhile both my family and myself became very stressed, their support was wonderful, we all found inner strength we never new we had.
In July 2002, I was admitted to Royal Brisbane Hospital. The final decision was to coil the aneurysm. It took a five, a half-hour operation, and three and half metres of coiling to complete an operation that went well. Due to my surgeons patients and magnificent skill I recovered extremely well. Later the surgeon told me he practiced on my x-rays, and for that I am very grateful, however, he added the aneurysm had in fact grown larger during the three months waiting and was 1.5cm x 1.5cm. I am to have regular checkups to ensure all is still in tact and no leakage's. Because of such a large aneurysm, there is still some doubt if the amount of coiling done, was sufficient.
Here it is June 2004 and I am still going great and continue in good health. As other aneurysm survivors know, we have had to learn what one could call the `new normal'. Gone are the days of taking things for granted just knowing your boundaries and restrictions is difficult. I am still legally blind in the left eye but I have regained some hazy vision and colour so maybe in time more vision may return. The doctors are not hopeful, because of the long time pressure on the optic nerve. Time will tell.
While recovering, I realised here in Brisbane there was no support for people surviving surgery from aneurysm or AVM ruptures. There is the stroke victims and Brain injury rehab clinics but no where was there a place people could get together for support and understanding. In October 2003, a friend and I began our support group. We meet once a month, and for those people unable to travel to the meeting I have phone contact. The contact helps keep their spirits up when they think people do not understand them or their situation. I find this personally rewarding having formed many newfound friendships. I have found acceptance of the what I phrase `the new normal' can be difficult, and it is good to express to survivors that they are still `normal', but in a new way to what they have been used to.
I am on the e-mail and I am always available to chat.
Thank you
Update: 9 December 2004
My story has had some twists and turns since I last submitted my narrative. I was due to have my angiogram to check up on my aneurysm and a couple of weeks prior I had extreme pain in the lower abdomen along with a massive hemorrhage. I was admitted to hospital as at that stage we were unable to say what caused the bleed. After tests the doctors couldn't find anything except to say I may have dislodged a kidney stone and damaged the urethra. I recovered fairly quickly and was ok and it was when I went to have my angiogram check up I was informed they wouldn't administer the dye for the angiogram the risk at that stage was too great, stating I needed a complete clearance from the kidney specialist because if there was a problem in this area the dye could in fact permanently injure the kidney.
Well as all things take time, I finally got the clearance and was scheduled for the checkup and it was during this check up (some 15months after the original surgery) that they discovered the coiling already in place had only partially sealed the aneurysm and I would need to be rescheduled for the top up coiling. After hearing this, the old stress levels were just shot to pieces, I was right back in the waiting game, stressed to the max, I had a few weeks where I couldn't sleep and couldn't settle down, just a terrible feeling of anxiety all the time. I had begun to stress about not making it at all. Over the past two years I had lost my mother (heart failure) my sister Marlene (aged 53) to Breast Cancer and my youngest sister Helen (aged 49) to pneumonia and complications after knee surgery so I was feeling extremely depressed as well. My surviving sister has been a tower of strength along with my immediate family all giving me the best positive support possible.
Surgery was scheduled for 30th November and just couldn't come soon enough. Strangely on the day I was extremely relaxed, I had convinced myself I was in a win win situation, one if problems arose I would be with my departed family and if all went well I would be with my immediate family here in Brisbane so I just went with the flow.
The surgery took 6 hours. Dr Mitchell my neurosurgeon, placed a stent in the neck of the aneurysm and topped up the coiling. He used a further 5 meters of coiling and when I was in recovery I kept asking everyone how much coil was used. Well yes the doctor answered me and no sooner had I heard the answer several times then I asked the next person who was near, in fact they all laughed at me as I kept asking and asking and they kept telling me, in the end my husband said together in a chorus they told me `a truck load'! Strange you know I still can't remember asking that question of anyone.
My recovery was a little bit different from last time, the original surgery I recovered very quickly and no problems, however, this time I had a lot of head pain as well as a fever for two days, they couldn't explain the fever, they did an MRI looking for a bleed but all appeared ok, finally all settled down and they let me come home. It has now been a week and I feel terrific, no pain - sleepy, but very happy to know all is behind me. I am due to have another MRI in April (they love me as I send off so many sparks and bright lights that really dazzle them), another angiogram in May and hopefully all will be positive and even though I have this 'Giant' ball of titanium (now 8 1/2 meters in total) in my head all should be well. My sight has gradually returned to where I can see colour, objects etc., there is still like a veil over the eye but it is improving gradually and every day is a bonus.
I give thanks every day for the skill of my surgeon that has allowed me to have a wonderful outcome and send blessings to the family as they meet their challenges also, God Bless.
Update: 17 April 2005
A great deal has been happening since my last update.
Firstly, I had a further embolization top up, this was done on 30th November 2004. The sides of the original aneurysm had ballooned out and the doctors needed to re-coil the new section. The aneurysm had a stent placed at the neck and has held the existing coils and the new ones in place. After the surgery I recovered very well, I knew what to expect and to me it wasn't as frightening this time around, however, it was just as stressful as the original coiling operation. This time the doctors had me take the blood-thinning tablet, Iscover (Clopidogrel) as well as the asprin, until I had my three months angiogram check, just to be on the safe side in case of complications, and thankfully there wasn't any. The blood thinner was a real pain in the you-know-what, I was covered all over in bruises that I had no idea how they got there, even woke up one morning with the pattern of my fingers on my arm where I had been resting my head while asleep!
I have been back to hospital on 16th February 2005 and had the angiogram to check all is in place and working as expected. It was so fascinating to view the aneurysm on screen and seeing the aneurysm just a few months back as being all black with the blood flowing into it, it was great to see it now grey, still a big blob there, but looking less threatening than the last time I saw it, the doctors were very pleased with the results and I was so pleased when they told me I could stop taking the Iscover and just take the asprin.
I am to have my next angiogram check up in July-August. I have also noticed that gradually my sight is returning, it is still blurred, and I am unable to read or see TV with that eye but I see some objects and some colour a little bit better than six month ago, so hopefully, as the aneurysm shrinks the optic nerve may just give me some more vision. Only time will tell.
Secondly, my other exciting news is on 29th March 2005, I had my 5 year Breast Cancer check up and great news, all is clear. The doctor was just as excited as me and asked if she could give me a hug (I felt really good knowing my good news was being shared) she said it was great to have a positive amidst the negatives, so I am feeling very happy with myself and I am now on a journey to get fit again. I have traveled the past five years in a learning experience with hospitals, loss of family, and uncertaity about myself, and in the process gained weight from stress and inactivity, so now it is time to really mean business and get back into my early morning walks.
I thank all those in the family who has shared my journey and send hugs and more hugs for a bright future for all. Bless you all.
Update: 6 November 2009
It has been a long time since my last update in 2005 and a great deal has happened since then.
Back in November 2005, I had been experiencing extreme back pain and became concerned that the breast cancer may have returned and was actually in my bones. I had a body scan and it revealed nothing in the back, but, there was a large mass on my left kidney. In February 2006 I was in hospital and had the kidney removed and it had a cancerous mass that had grown to 10cm and this was pressing on the nerves in my lower back. I was extremely lucky as the cancer was retained within the wall of the kidney and not moved onto the poles of the kidney. This put the embolisation I was scheduled to have in May, needing to be re scheduled.
After the surgery I got a golden-staff infection that took a while to control. This also meant no further surgery for 12 months, giving me time to recover as well.
I had booked to have knee replacements and that went on hold for 12 months. In January 2008 I had the scheduled knee surgery. The right knee was done first and I recovered very well, and the pain relief was terrific, the second knee was replaced in August 2008. Well guess what, I got a surface infection on my left leg, and had to wait for six weeks for it to clear.
In the meantime I had an MRI and it showed blood was still entering the aneurysm so they scheduled me in for another coiling topp up.
I had also noticed the vision in my right eye was being affected, I had lost perferal vision on the right side and this became a concern, vision had returned somewhat in the left eye but only to about 65percent (I still can't read a paper, but can see visions on the TV and depth of vision has also returned. When I confronted the doctors with this they ordered a new MRI to check the aneurysm's stability. The aneursym had ballooned out again, it was another angiogram to see what was actually happening, the doctors then did the surgery. This was done in May 2009.
Surgery went well . The doctors coiled the new part and told me that I now had 54 coils in my aneurysm. Hard to believe that many little springs inside this little monster I had the next MRI on 1st August,2009 and there is still blood going into the centre of the aneurysm. So now it is another MRI in December to see if by stopping the asprin the little monster may just close up and behave it'self. The doctors hope that it will seal this time.
Some good news: I had my breast cancer check up, it has been 9 years and still clear, so hope all stays clear (grin).
At the moment I feel truly grateful I have escaped any problems with the surgery, and hopefully my sight will recover given time. I am looking forward to enjoying my new knees and get on with the things I like to do, like walking early in the morning (instead of using the treadmill) and swimming with grandkids. My grandchildred joke, and tell me 'I am wired for sound' (grin)
I have also had a lot of contact from people who have actually phoned me as well as emailed me from North Queensland, Melbourne, Adelaide, from country towns in New South Wales I even had one from the UK. People who were facing surgery, or recovering with problems and sharing that experience with them has helped them understand, they have remarked they have felt less fearful, still stressed but not as much - just knowing that things will be ok and what to expect has helped them understand their situation that all surgery has its risks some good ones, some not so good, but doctors do try and have a good success rate (helps with the statistics - grin). Just being there to support people and relieving some of their stress or anxiety is a womderful thing .
So until next time take care, and always think positive, God bless everyone.
Love Annie Jarick
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