There, I’ve said it out loud…. I have an aneurism.
A year & half ago, April of 2012, I was diagnosed with a rare Cranial Aneurism. Rare, as to the location of it in my head. How did they find it, you ask?? Good question.
I have suffered with migraines for years, many years, many many years! When I would get a full blown migraine I would basically be out of commission for 3 days. That would happen 1 – 2 times a month, then during a month I would have more headaches, just not bad enough to completely incapacitate me.
One day I was laying down with a headache and saw a commercial for a headache doctor, I had never seen one of those commercials before (I really don’t watch much tv) and was surprised that there was now doctors just for headaches. I had discussed my headaches with doctors before and tried some medicines that didn’t work and just gave up. But, the ladies at my church encouraged me to go to the doctor and since I had seen the commercial I figured God was trying to tell me something, so I asked my doctor whom I should see and he gave me a name of a headache doctor here in NJ. So I called an made the appointment, and had to wait 4 months for the initial visit.
When that date finally came, my hubby drove me, it was about an hour away from home and I can’t drive distances, I have a herniated disc in my neck and I have a bad right knee from a break a few years back, so I only drive short distances. Anyway, once seeing the doctor, first thing she did was order an MRI & MRA to see whats going on in my head/brain, just in case there is a tumor or an aneurism, or anything else that could be causing headaches. The doctor also gave me some meds to try and a headache diary to keep.
So, home we came, I made appointments for the MRI & MRA and started keeping the diary and using the meds as needed. The meds worked wonderfully, giving me back my life. After having the MRI & MRA I received a call from the doctor, telling me I needed to see a neurology specialist, that the MRA showed a possible aneurism. WOW! Wasn’t expecting that…Guess no one ever is.
You know, its never really real, until you actually have to say the words out loud. I got off the phone with the doctor, sat for a minute, looking at the phone number of the specialist that she recommended and remembering that my hubby had a neurosurgeon that he had seen for his back up in Philadelphia, thinking I should get that number out also, that I might prefer to go there since we already knew him.
Like I said, its never really real, until you actually say the words out loud. My hubby happened to be home from work that day, and was working up at my sons house on something, so I got myself up and walked up to give him the news. The moment I opened my mouth and started to say those words, I broke down, it was now real.
Harry came back to the house with me, I couldn’t speak. He called the number that the doctor had given me and left a message, then he called the number of his neurosurgeon and left a message there. I put it in God’s hands. Whoever would call me back first would be the doctor that God wanted me to see. The neurosurgeons message was that the office was closed for the day and would get back as soon as possible. Well, they returned the call within the hour, speaking to the receptionist she said that they only see patients on Tuesdays, but that for some reason the doctor had made some special openings for a few patients on the coming Thursday and someone cancelled and there was an opening for me! So, now we knew which doctor we’d be seeing and up to Philly we went. By the way, the other doctor still hasn’t returned my call.
So, more tests were ordered, confirming the aneurism. Then off to meet a new doctor, since my doctor was a neurosurgeon and I wasn’t going to require anyone cutting into my head, he referred me to one of his colleagues, who is an Interventional Neuroradiologist. After meeting with him and his wonderful nurse, who took control and took wonderful care of me, everything just fell into place.
June 2012 I had my first angiogram along with a balloon occlusion test. The angiogram was to have an up close and personal look at the aneurism and the balloon occlusion test was to see if my carotid artery could be blocked off without doing any harm. That was just a test for a last resort, not that they planned on doing it. I was suppose to be in the hospital for an overnight stay with that procedure, it turned out to be 2.
Nothing ever goes according to plan in our family. The morning after the procedure the nurse came in, asked me a few questions, and I told her that an area on my left hand between my thumb and forefinger was numb, tingly like it was asleep, felt weird. It did finally clear up. Next thing I knew, I had a room full of doctors and I was being sent down for and MRI. Seems I had a TIA a mini stroke. I was told that mini strokes correct themselves, but that they we’re keeping me an extra night just in case.
After that, the plan of action was to place a pipeline stent. Upon going over all the details of what the stent placement would do, they went over my list of allergies and asked a lot of questions. One of the questions was, was I allergic to nickel. My eyes got wide, I had been told by my dermatologist a few years back that I had a nickel allergy because I had shown her an area of my skin under and around my watch. She said it was a nickel allergy and stop wearing the watch and it would go away, it did. The doctor never told me I needed to add that to my list of medical allergies. But, the pipeline has some nickel in it, so, off to allergists(yeah, not just 1, I ended up going to3) for skin testing to show that I was or wasn’t 100% allergic. Long story short, I’m not.
So, now the date was picked and I was going to have the stent placed in October 24, 2012. It all went well, I was suppose to be in the hospital for 2 nights, the first night in ICU and the second in a regular room. The hospital was filled to the brim with patients(no extra beds) and the second night the room they placed me in was with another woman who was screaming! I called my nurse who had been on my case all these months and told her to get me out of there. She came to see what was going on, and had me discharged. They discharged me with a home nurse. You see, when they do a stent placement, like the angiogram I had in June, they go in through the groin, with the stent placement, the opening is a little larger and they place a collagen plug in the artery when their done to prevent bleeding. So the surgical area needed to be checked by a home nurse.
My stent placement was on Wednesday Oct. 24, 2012, I came home on Thursday, Oct 25, 2012, the home nurse came on Friday. Well, I developed a lump and a red rash in my groin, the site where the angiogram was done. The home nurse, called my nurse in Philly, we needed to kept an eye it, another nurse would come to visit on Saturday. On Saturday, it was getting worse, the nurse made the call to Philly, another nurse would come out on Sunday. On Sunday, Oct. 28, 2012, a good friend came to sit with me while my hubby went to church, she’s a nurse so she had a look, she wasn’t impressed, the nurse came, the call went to Philly, I was to go to the ER. Uggg, not what you want to hear. My hubby came home from church and we decided not to go to our local ER, because the plan was I’d be transfered if there were any problems, so we went directly to the ER in Philly. I was admitted.
I ended up being there for a total of 10 days, with having a surgery on Oct. 31, 2012 to remove the collagen plug and see what was going on inside. They removed the collagen plug and repaired the artery were it was, they had to create a muscle flap to wrap around my artery for protection. They also cleaned up a big messy infection going on. The infection didn’t want to react to the antibiotics I was on and it took a while for them to find one that would work. They told me I might be in the hospital till Thanksgiving! Things finally turned for the good and I came home on election day, Nov. 6, 2012. I came home sporting 2 drains which would stay in for 2 weeks, the last one came out the day before Thanksgiving along with my stitches!
The day after Thanksgiving, Black Friday, I was trying to help myself for a change instead of being dependent on someone, dropped something on the kitchen floor, tried to pick it up and opened a section of my incision, ugggg. Another call to the doctor, they said it would be okay, that I just had to behave and keep an eye on it, luckily I still had the home nurse coming, so she kept an eye on it. It eventually healed, took a very long time. Due to the stent placement surgery I had to be on an adult aspirin a day along with an anti clotting drug. Which made healing for me an eternity. I didn’t completely heal till the end of January.
Side note: Between the 1st angiogram and the stent placement surgery, I was taking notes of myself, my actions and mainly noticing that there were somethings that my brain wasn’t doing right, not like the typical ‘senior moments’ but different. I was having trouble finishing sentences, getting my whole point communicated. I would start a sentence, I could visualize what I was saying, but the last part couldn’t make it from my brain to my mouth. The good thing was, most folks knew what I was trying to say and would actually finish my sentence for me. I also, process things a little slower. I was constantly thinking about it and trying to put it together and realized that this had been going on since my TIA. I finally confided in my hubby, then to my nurse. She talked with my doctors and they suggested I go to one of the neologists there. So, I did. Upon the doctors exam it was concluded that my TIA was not a TIA, that I indeed had a minor stroke that day in June. They suggested me taking statin medication to prevent any more strokes. (After doing some research and talking with my regular doctors, I opted not to take them)
In March of 2013, I had to go have a follow-up CTA (Cat-scan of the Artery). The findings of the cat-scan were phenomenal, it appeared that the stent was doing its job and the aneurism appeared to be blocked off. I would now wait until Sept. 5, 2013 for what would hopefully be my final angiogram.
On Sept. 5, 2013 back to the hospital we went, for hopefully a same-day surgery. For once in my life, everything went as planned, the angio went quickly and the best news, the aneurism was totally occluded! NO MORE ANEURISM!!!! Yeah! Now I have to go and have at least one follow-up CTA next year, then maybe in 3 years, and then maybe 5, they’ll decide after the CTA next year.
Throughout this year & a half ordeal, I saw God’s hand everywhere. From the way I found out I had an aneurism, from which doctor(s) I should go to, from appointments (I never had to make an appointment after the 1st one and you read how I got the first one, from that time, the phone would ring and I’d be told I had an appt. If I did make an appt, sometime after that, the appt would be changed, either time or date or both) It was an amazing time, I met wonderful people and had great care.
So that’s my story of my aneurism. It’s condensed. If you have questions, I’d be happy to answer them.