Sunshine Petals

A Year Ago Today...

at this moment I was in recovery after having a brain aneurysm coiled waiting for a room in Neuro ICU at Tampa General Hospital. In some ways it seems like it was just yesterday with things still so fresh in my mind. In others, it seems like ages ago.

In September, my neurosurgeon, Dr. Sauvageau, did an angiogram and everything was perfect with the coils in my brain. That was good news but the sad news was the Dr. Sauvageau would be going to Ohio State to work. I will miss him so much but wish him all the best.

Lets just say it's been a long hard year, harder mentally than physically. I can honestly say I'm glad it's over and hope to never have to do it again. About 7 weeks after having the surgery, I had my left arm go completely numb from the elbow down. It felt like it wasn't part of my body for about 15 minutes. The next day I had half of my foot go numb. A couple of days later I happened to have a doctor appt. and mentioned it to him. He wanted me to get in touch with my neurosurgeon in case of a problem with the aneurysm or a possible TIA.

I emailed my neurosurgeon who called me back within minutes and arranged for me to have a MRA done the next morning. Everything was okay with the coiled area, no other aneurysms, carotids were clear so no reason was found. Next step was to see a cardiologist to be sure there wasn't a hole in my heart that a small clot could have gone through.

All cardiology work (TEE) turned out good. When I mentioned to the dr. that the procedure was the best sleep I had  since Jan. he gave me some sleeping pills. OMG, what a difference a good night of sleep did for me.  Next step is to see a neurologist.

Before seeing the neurologist, I had another numb hand incident where I couldn't keep my hand wide open. It would start to close up. Then I was having a numb feeling in my calf like my leg had been asleep and was waking up. Other times, my lip would be numb. My cheek would get that feeling as if I had been to the dentist and the novacaine was wearing off. I was having this numb or tingling feelings almost daily. Sometimes a portion of my head felt numb. It was very strange and everytime it was on my right side. My aneurysm was on the left.

The neurologist doesn't believe I had a TIA but believes everything is migraine related. I used to get migraines pretty bad but haven't since the coiling. He said my brain has had trauma to it and is reacting differently to the migraines. I was put on a medicine (bystolic) to stop them if they were migraines and within a few days my blood pressure was so low I could hardly move. I felt so bad. I would be sitting and just felt like my body was sinking. Very weird. I called the doctor and they changed my meds cause my pressure was entirely too low!

Started another medicine(topamax). Very quickly I could see a difference in the amount of numbness and then it stopped completely. Loved this medicine but... it didn't love me. Took it from September to January. But the time January came around, I was so damn confused I was lucky I could find my way home. I seriously thought I was getting alzheimers because of how I was constantly asking the same questions, would be confused what day it was. My son said I needed to tell the dr. that I couldn't complete a sentence. Yeah, it was bad but I didn't realize it at first. When I told my family dr. he said to cut it in half for a week and stop it. Call the neurologist about another med. My doctor says it's nickname is Dopamax because of the side effects. Yes, I was definitely dopey, not loopy dopey, but stupid dopey!

As soon as I started weaning off of it, the numbness started to return. Called the neurologist again and his PA called back and  she prescribed Amitriptyline. Okay, the numbness was less again but I was noticing my heart pounding. I would walk to the mailbox and hear my heart pounding in my head! WTF? I felt like I used to before I lost 120 lbs. I'm not out of shape, what is going on? I gained 5 lbs. without any changes to my diet. And as a person who had a gastric bypass, 5 lbs. is something I don't want to see added to the scale! So I started taking my blood pressure again to see if it was high. No, it wasn't but my pulse normally is around 64 and was now anywhere from 90- 110!

Had an appt. with the neurologist, again the PA, and told her I was weaning myself off the meds because of the high heart rate . One good thing I can say about Amitriptyline is I slept excellent while taking it! PA decides they have tried enough meds and wants me to see a neurologist who specializes in migraines because I have what they call complex migraines. But I'm welcome to come back to them if I need them. Oh, okay, I guess I'm moving on.

Decided to try a neurologist that wasn't the PA's preferred. Mainly because I prefer men doctors (except my GYN), and not someone who is a year or two out of school and the migraine specialist was about an hour away.

Saw the new neurologist last week. He agrees that I have complex migraines. Sometimes I also have auras in my eyes which used to signify a migraine on the way. Now I only gets the signs but not the actual headache which is good, I guess. My new med is Zonegran. So far, it has helped with the numbness and tingling. But now I do have problems once again sleeping. Getting a lot of reading done at night!

So this has been my year minus a few other issues. Vertigo being one of them. The thyroid nodules are the same, no change. Rheumatoid arthritis about the same, still on Enbrel for that.

I really meant to write this as it happened but sometimes I was so disgusted with everything I just didn't. If you actually managed to read and understand my ramblings here, I do thank you!

One Month Ago

It was one month ago I had my brain aneurysm coiled. This month has gone by fast in some ways and slow in others. The first couple of weeks instead of being so happy that I was alive and could see, I felt... emotional, happy, sad, thankful, confused, grateful... it was actually a roller coaster of emotions. Up one minute, down the next. I felt like I should be on top of the world but I just couldn't. Things do seem to be more even now with me so I'm hoping the roller coaster ride is over.

One day I saw a seagull on the side of the road, alive but think he may have been unable to fly because he was on the shoulder and this was a bridge. Anyone could have run him over. It was like he looked me right in the eyes. All I kept thinking is someone is going to run him over and he will be gone in a instant. Thank God that my husband was driving because I sobbed for miles over that seagull. I like to think that he flew away. But I'm also glad that is a divided bridge so I couldn't see the section of road where he was sitting when we came home.

Yesterday I saw my neurosurgeon, Dr. Sauvageau, for my 4 week check up. He is such a special doctor and I'm so thankful for him. He's not just an excellent neurosurgeon but also a wonderful person. Yes, you can have an excellent surgeon with no personality but this man has it all!

Everything is going well and I won't need to see him again for 6 months when I will have another angiogram. I picked up a CD of the coiling from radiology. It is truly amazing looking through those pictures seeing the aneurysm before and after the coiling. Will try to post some over the weekend.

Been meaning to write

I should have updated long before this. It has been a week since I got out of the hospital. Everything went well with my surgery. I had my aneurysm coiled and spent one night in Neuro ICU. Last Saturday I came home from the hospital. Other than a minor headache off and on, which is normal, I have had no other problems.

I was amazed that I woke up from surgery without a headache. I just figured it would be hurting like a migraine considering they had just put coil in my brain! But no pain at all. So no need for any pain meds. When I got the little throb of a headache I just take a regular tylenol.

This week I have been resting and taking it easy. I'm not supposed to lift over 5 pounds. Hubby has been doing all the house stuff while I nap, play on Facebook or read. I'm glad to have it all behind me. I will need another cerebral angiogram in 6 months and see my surgeon in another 3 weeks.

Another Seminar

Yesterday my neurosurgeon, Dr. Sauvageau, was doing a seminar on brain aneurysms. His was so much more informative than the other that we went to from another hospital. He shared lots of info and pictures. And answered a bunch of questions at the end. 

After it was over, I went up to talk to him and told him I'd see him next Friday at 6 am. I feel fortunate to have him as my doctor.

Mayo Clinic Study

I decided to take part in a clinical trial from the Mayo Clinic. It's called "Genetic Markers for Intracranial Aneurysms Among Family Members". Its purpose is to identify possible genes that may increase the risks of aneurysm development in the brain. Since our family has a really bad history of aneurysms, I would like to think I may be helping future descendants of mine and other families.

You don't have to live in MN. The sweetest woman, Lynda, has been handling my info. She even called the day after the angiogram to see how things went. They will even have someone come to your home to draw blood. And will do the family history by phone. Everything is confidential. You will have your own clinic number.

Here's the link to the Mayo Clinic if aneurysms run in your family.

 

Like living a rerun

I have not talked to the aunt that I mentioned in a previous post for a couple of days and haven't any plans to do so. I feel bad about it but at the same time... feel a bit of relief.

We were talking about when my surgery is and she questioned me over and over about how it was going to be done. I told her the doctor told me either way would be possible. In some instances, coiling isn't possible. In my cause, it was so that is what I prefer. She couldn't understand how the doctor would let me decide what to do. Well, wasn't the purpose of the angiogram to decide how it had to be done? She kept asking me that over and over. And I kept saying, yes, but it showed that either way could be done. He couldn't very well decide to coil if the type of aneurysm I have it wouldn't work with. But she just couldn't comprehend why the doctor let me decide.

This must have went on for 20 minutes. The same fucking questions over and over. Why would he let you decide? He's the doctor. What was the purpose of the angiogram if you're going to decide, not the surgeon? OMG, I answered the same questions and explained it over and over. Felt like I was playing 20 questions with the same questions repeated 10 times! She brought up her cousin who had heart surgery and was given the option of the type of valve. Okay, so he was given a choice too. BUT he isn't a doctor and he asked the doctor what one he advised.

When she heard I would probably come home the next day... are you kidding me? well, you'll be in ICU the first day, right? No. Well, you'll be in a 24 hour watch, I'm sure. They can't just put you in a room and ignore you. No. Now, I also went to a seminar last week at another hospital and that doctor said most patients go home the next day too. I told her that. She has always doubted my doctors and I could hear it in her voice and it was really pissing me off but I kept patiently answering the same questions over and over and over again.

After hearing, I don't know how a doctor could let you decide the surgery for what seemed like the hundredth time, I calmly said would you like my surgeons phone number so you can call him? Holy shit, she went off on me with "that voice". See, it's okay for her to say what she wants but don't you ever dare say something back to her. I said well, you don't seem to think much of what I've told you. Now, why would you think I want to talk to him??? Then I raised my voice. I didn't yell because truthfully I'm afraid of bursting the bubble in my brain! I was told to keep calm and my blood pressure down. After raising my voice to her, she says, why are you yelling at me? WTF? I was not yelling at her. My husband was in the room and he knows I didn't yell at her.

She says in her damn snotty tone, I think we need to change subjects. Oh, yeah, I said, definitely. And she says again about me yelling. I said okay, I've had enough of this and hung up. Then I cry, why does she do this me? Hubby was so mad and kept telling me to calm down. I haven't let myself cry this hard since hearing I had an aneurysm.

Well, it gets worse. My son was so upset over all this and after we went to bed, he decided to go visit them. I didn't know about it until 2 days later when he told me what he had done. It evidently was very nasty. He asked her why she was trying to kill his mother and that started a war. He says that he is 26 years old and has seen how she treats me and was fed up with it. I guess the first thing she told him was that I yelled at her. So this was all my fault. He told me everything he brought up, she would twist to make it my fault.

I do feel bad about all of this. I guess I was supposed to just take her shit like I've done for 54 years and not said anything.

I'm just so tired of it all.

Got A Date

I got the call to schedule my aneurysm coiling surgery today. It's going to be on February 26. I am both thrilled to be having it done and a bit terrified at the same time. I really wish it could be sooner so I can get it over with. Yet I also wish I never had to do it. Very confusing emotions right now.

Fireworks in my head

I never did get around to posting this.

MONDAY - I got home around 4:30 yesterday and didn't make it to blog. Kind of tired and actually I still am. I'm supposed to relax and take it easy for 48 hours.

The angiogram was much easier than I imagined. I was shivering in fear going into that room!

My doctor greeted me with Hi Dear and wanted to know if I had any questions. He is the sweetest man with an excellent bedside manner. I feel very fortunate to have him as my neurosurgeon.

They strapped me down to the table with my head situated in a thing where I couldn't move. My arms where put in things so I couldn't move them and tape was put across my forehead so I couldn't move it.

After the initial stick of the numbing drug, I was given some Propofol until the catheter was in. The anesthesiologist told me to let him know when I felt it. I said I feel it and was out. Have to say it was a good little nap since I've been having such sleep issues lately. Then I was awake and had to hold my breath every so often while they took pictures. When the dye would be injected I would have the prettiest light show in my head! Looked like fireworks. One time, it looked like white confetti, another aqua colored squiggles. Don't think I had two the same. Only twice did I get the warm feeling in my head and it was really only more in the bottom half of my face.

The angiogram showed that I only have the one aneurysm. My surgeon said he would be in to see me later. I was then sent to a recovery where they removed the catheter from my groin. Was fearing the removal but the nurse had me take a big breath and blow it out. When I exhaled, she pulled it out. Didn't even cause me to flinch. The nurse kept pressure on the incision for about 20 minutes.

I was then returned to my room where I had to lay flat for an hour. Then my head was raised a little bit and I had to stay like that for another 5 hours. She brought me lunch after the first hour. I read for a bit. Hubby showed me some of the commercials from the Super Bowl on the laptop.

The doctor came in and said I could have either the craniotomy or the coil. Guess which I picked? So I will be coiled. I will be a real metal head.

Now I wait for Evelyn to call with a date for the surgery.

What is wrong with this woman?

The day I was told I had the aneurysm, I called my aunt who ends every conversation with "give me a buzz and let me know what's going on".  I'm still undecided on whether that comment is meant with concern or just plain being nosey. She wasn't home and I told my uncle who said he was sorry to hear that. He said that my aunt was at Walgreens but had her cell phone. So I called and first asked if she could talk. She said yes, so I said I just wanted to let you know that they found a problem and I guess those headaches I get might have meant something. So I say I have an aneurysm. She says, are you kidding me? Ummm, no, really, I do.

Oh, boy, the woman freaked out. She sounded like she was starting to hyperventilate and said hold on, I've got to catch my breath. I was thinking, oh, shit, I'm going to cause her to have a heart attack in Walgreens. I kept saying, are you okay? She starts talking and wants to know, what, where, how and why. I said right now, I'm on the way to see the neurosurgeon so can't tell you much. She kept saying, you're so young, you shouldn't have these problems, which pisses me off. How about a child with cancer, should they have those problems? Well, at the end of the conversation, she had me more unnerved than I had been! I was thinking why does she do this shit to me? She even said that I sounded calmer than she was! WTF? Oh, yeah, I was calm all right.

Does she not realize that her carrying on over things is more upsetting? I could hear her voice quivering and I'm sure she was all teary eyed. I kept saying I'm sorry I called you. Wouldn't my uncle have said not to call if he thought she'd react like this? I know it's upsetting to hear bad news but my God, shouldn't you try to not make the person feel worse? I truly had no idea she would react like that.

So we ended the conversation when she got herself under control. She told me to make sure I called immediately after seeing the surgeon. She would keep her cell phone with her. So I call and you won't believe this? She answers and is basically whispering. I said, is it okay to call now? Oh, yeah, just a minute. Okay, I'm in the lobby now and can talk. I said, the lobby? Yes, we're at the movies. WTF? I'm thinking, she told me to call. I said ok, I'll let you go. NOOO, I knew you were going to call and I had my cell phone on my lap. I said I didn't know you were going to the movie or I wouldn't have bothered you. So she says that she was so upset that my uncle thought a movie would take her mind off of things! I'm thinking to myself... you have got to be kidding me! Now, if I were upset and waiting for a fairly important call, I wouldn't go to the movies! If she was truly that concerned how could she even concentrate on the movie? Side note here: They were on a cruise last year with another couple and the woman died. My uncle had him play bridge the day after to take his mind off of his wife's death. Is it me or does this all sound strange?

I didn't give her all the info from the dr. because I didn't want to cause her another episode in the movie. And truthfully, she upsets me even more. Then a couple of days later, she was asking about the risks of surgery and I forgot and mentioned about it being on my ophthalmic artery that loss of sight in my eye was a risk. She yelled, WHAT? I'm thinking, Oh My God, here we go again. She said well, whatever the odds, you don't have to worry because it's not going to happen to you. Can you say denial? So actually, since she yelled WHAT? I haven't mentioned anything to her other than to answer the questions that I've already answered a hundred times.

Yesterday was her birthday and we were actually invited to go out to dinner with them. And holy shit, she picked us up. Hubby and I together have never been driven anywhere by her since they moved here in 2003. But that's a whole other story. Anyway, the other day I had been going through death certificates (I do genealogy) and was looking for causes of ancestors that might have been brain related. I couldn't find my grandfathers and asked her if she had a copy. Here we are sitting at dinner waiting to order and guess what she pulls out of her purse. Yes, his death certificate but it got even worse. She said guess what else I found? It was the 2 page eulogy that a friend had written when my grandmother passed away. Oh boy, I'm thinking to myself, please don't do this to me in a restaurant.

She then proceeds to tell me how she read it and cried. Then she read it out loud to my uncle and said she kept crying and had a hard time reading it. And she's all teary eyed telling me this. She says, I guess you don't want to read it? No, I don't. Don said he couldn't believe she was doing this. He said the look on my face was like if only I had a knife, I'd kill this bitch. I have been so emotional and I was just struggling to stay calm and not burst out crying. The waitress come up to take our order and she continued talking about it and Don just started ordering. I was in shock at the rudeness of this woman but I shouldn't be after all these years.

After dinner they came in our house for awhile to see Gregory, our cat. I was showing her something on the computer and I so wanted to say so, would you like to see some pictures of my brain? But I didn't and Don said I should have after what she pulled at dinner.

Well, I think I got this rant out of my system. If you managed to read through it all, I thank you. lol And now, I wait for todays phone call to hear ... So, how are you feeling today, any headache?

Medical update

Remember my thyroid posts? Well, today was time for another ultrasound. Of course I don't know anything yet but I will pick up my copy of the results on Friday. I do see the surgeon next week who ordered the ultrasound but I'm impatient and can't wait that long. They are also sending the results to my family doctor who is really good about calling with results of tests quickly.

The tech who did the ultrasound seemed to do a more thorough job than the last one. At least it seemed longer to me. I could see the monitor and of course nosey me had to keep looking at it upside down. But the time I was done I had a headache from straining my eyes to look upside down to the right side. And the headache turned into a migraine. So I should have kept my eyes to myself! lol

I'm sure another biopsy will be in the works for me and I'll know more next week.