I Knew Something Was Wrong...
30 March 2005
My name is Tiffany. I am a 29 year old wife and mother of two daughter's 7 and 9. In July of 04 my best friend and I went to our 10 year high school reunion. It was about four hours away from where we lived. We loaded up her 4 kids and my two and took off. When we arrived in town my head hurt and it hurt through out the entire weekend and on the way home. I thought it was just a headache but I don't usually get headaches and it hurt only on one side of my head the right side. I am luck I work in a hospital in a family practice clinic. When I came in on Monday my headache was still there.
The girls that I work with said to go and see George our PA. He is who I see for everything and who my family sees. At the end of the day my husband and I went and saw George who said that I probably had a migraine but the he was going to order an ct scan just to make sure everything was OK.
The next day I woke up and was thinking about canceling the ct scan cause I thought that I was being silly and I did not want to pay my out of pocket deductable. My husband met me upstairs from where I work at x-ray and I had the test. I knew something was wrong right then. The tech came out and said that the radiologist was on the phone and that they needed to put contrast in, I saw people pointing and looking. When I was done I told my husband that something was not OK.
I went back down to my desk and asked George if he had heard anything he said we'll talk. A little while later I went in his office to help a patient and saw on his desk the word avm and how big it was. It did not say my name on it just those three letters. I knew it was for me at the end of the day he told me what I had and where. It was an AVM and it was 3 1/2 cm in my right frontal lobe. After being told this and telling my husband and crying we did what everyone does we turned to the internet.
That night I went over to my friend who is married to one of the Doctors that I work with, He knew about it already George and him share an office and George had consulted him on what to do. The next day I had an appointment with Dr.Shanno he was suppose to be the best in Washington and Portland. He was very nice told me my options and what he though. My avm was too big for gamma knife I had to do an embolization. I was admitted that night and that is when it hit me.
I had my first embolization the next day I stayed two days in ICU and went home. I felt pretty crappy those next few weeks. Dr.Shanno said that he would be able to do one more he thought and that It would be done. I had pretty bad headaches and my brain started to swell and I was dizzy real bad. August 2 I went back in for my last embolization and when I woke up I was told that he had to get out and could not complete it that the first embolization he had done found another feeder and that he had to open me up. I was scheduled the next day.
The surgery went well I went home that Friday. I was very swollen and looked like someone had beat the crap out of me. By that Monday was up and driving and feeling very well. On Aug 16 I went back to work for a half day. That afternoon I was talking with my husband and sweeping the kitchen floor when I got very dizzy and sat down and the next thing I know I wake up on the kitchen floor screaming I had had a tonic clinic seizure. I did not know what had happened and I was sick and I could not see.
I was brought back to my Doctor and he was disappointed but said it was just a little set back. I have been struggling with mini seizures and head aches since. My ventricles in my brain are swollen and has caused water on the brain. I have had a lumbar puncture and will have another one next Monday to take fluid off the brain. I may have to have a shunt put in.
It has been a long road with a lot of tears. Like everyone else I have good days and bad. My husband has been wonderful and all of my friends and coworkers. George is who I turn to with all of my fears and frustrations memory sucks and I hate that.
My kids have been having a hard time and scared that I will have to go back to the hospital but they are getting better. I try to be patient with myself and realize that I do have limits to what I can do and listen to my body. I have had at least 6 ct scans since my surgery so I know that it has not come back. I look forward to feeling more like my old self again and thank God that It was found before it bled. I look at it that I just have one more thing about that is unique and a great story to tell people.
Good luck to you all and God Bless.
Update: 7 April 2005
I had my lumbar puncture on Monday. It went better then the last on but I did not get the relief from the head aches that I was looking for. The headaches are coming more and hurting worse. I think that a shunt would be of help at this point. I will see what the Doctor says when I can talk to him. My dizzy spells have come back or mini seizures what ever they are they suck so hard to function. I keep thinking I'm going to fall on the floor at any point.
I was talking with my sister last night and her husband had an aneurysm that leaked in the brain over a year ago. They found another one on the other side of the brain and removed that a few months later. He is still having a tough time like depression and she says that he sweats a lot. She wanted to know if any males has had sexual dysfunction since a brain surgery. She says that it has been over a year since they have been with each other and she is very sad about this and was wondering if anyone would be willing to share their story if they have gone through this. He has no insurance and has not gone back to the Doc since his surgery. She says that it has been since they operated on the left side. Thank you for sharing such a personal thing.
Update: 22 April 2005
I went and saw my Dr. Wend and the visit was OK. He told me that he did not want to put the shunt in yet. He said that he is hoping that the hydrocephalus will heal on its on. He said that is usually goes away in the first 6 months or so but mine seems to be taking longer. My pressure is high but not that high but enough to cause pressure on the base of my skull. Sneezing, coughing bearing down it seems to make it worse. He said he wanted to try this diuretic that slows down spinal fluid.
I told him (in tears) that my memory was getting so bad (short term) I can't remember simple things like if I am helping a patient and go in the back to ask the Doctor I have already forgot what the name was. My speech is kind of bad in the fact that I know what I want to say and it comes out totally different then what I wanted to say. My kids think that this is all too cool and try and use it to their advantage because they know mom will not remember usually and then there is my temper. I loose it over everything!! The "F" word comes out frequently and then I think about what I said or sometimes I don't even know that I have said it. I feel like a pretty crummy mom most of the time cause I know I have hurt my girls.
Dr. Shanno smiled sweetly and said that this was all normal and due to the surgery and hydrocephalus he said my wife yells at our son and she had no excuse like you do. Haha. He said try to relax and realize that it is not your fault and it will get better in time. So I guess their is nothing that I can do but it sucks to be honest.
My surgery was in August and I wonder if their ever will be a time that I feel like my old self. I think my girls wish the same but what can you do??
My seizures auras have been coming and going but I'm not all that worried about it figure if I have not had a big clinic or tonic seizure again after all this time I properly won't (hope I'm not wrong). I also have been having this ringing in my ear same side as my surgery and it happens at night drives me crazy!! He said that it was from the pressure in my brain and hopefully this new med will help with that. So all in all I have a reason for being grumpy and air headed. Guess all I can do is keep smiling and hope this gets better.
Update: 6 May 2005
Well, I thought that I would give an update of what has been going on. I saw my surgeon a few weeks ago and he gave me a prescription for Diomox a diuretic to help slow down the spinal fluid in the brain. I started it with a 1000 mg a day way high but the side effects sucked from the get go. I tried it for about 5 days and could not handle it anymore I was so tired and just felt like crap.So I called and spoke with his nurse and she said that he told her to tell me that if it was that bad to stop it and their was nothing else that he could do for me. Well if that did not make me feel like crap so I said ok thanks .She said it will go away in time he said but properly not as fast as you would like it too.
My neighbor works at a chiropractors office and told me to come in to talk with the Doc, so I did and he thinks that maybe he can help me with my headaches. When I had my seizure and fell I hit my head /and neck real bad that is when they found out that my ventricles were enlarged. He thinks that maybe they are enlarged and not draining right is cause my neck is so out of wacky from the fall. Makes sence to me and I really don't know what else to do so I say lets go for it. I have been going for about a week now and seem to be doing ok one headache since and some mild pressure in back of my head. I hope that this works out.
My neck hurts but I suppose that is to be expected and will take a while for it to get better, he said that he has never seen anyone with my problems but that he is excited to help me pain free one day. I guess that I don't need to see my neurosurgeon anymore so I think that chapter of my life is closed and it is time to move on and really start my healing process. I look forward to it and hope for good things ahead and a way better summer then last time!!!! :)
Update: 8 June 2005
I was wondering if I could get someone's opinion on this...
It has been just about a year since my avm removal Aug 3rd will be the day and July 15 is when I found out I had it. My question is should I go back in and have a f/u angiogram? My ns says that it is gone that he did one rt after my surgery but I cant help but wonder should I just to be on the safe side. I have had so many ct scan since then because of my seizure and hydrocephalus. So I suppose it should up there but I keep thinking maybe it is to small now and no one can see it with out something like an angiogram. I was wondering if anyone goes in for f/u like that after a year.
I still am having pressure headaches from the hydrocephalus but this week they aren't that bad and in fact I am thinking I am getting better just like the doc said I would. I don't want to get my hopes up but I have decided that I am going to start at the gym tonight and join la weight loss. I think I need something to take my mind off all of this it has been such a long year as you all know and can understand.
My husband's father died of cancer a few years ago and every year the family gets together and supports the cancer relay. This year we went, and as they started the relay I started to cry for one to see all those wonderful people who have been through so much start walking because you know each one of them has been through so much. I cried because I missed dad and to think of how much he suffered. But I cried for me too cause it was the first time since all this started that I felt WOW!! yes you have been through something awful and yes it has been so hard and at time painful and full of disappointment but I am here I have survived and for once I believe that I am lucky. I don't have someone telling me that because up until that moment I did not feel lucky. I felt betrayed by my body and the last thing that came to my mind was luck.
But it took that moment and all these powerful stories that I read each day to realize that I am here and very much alive and very young and I am lucky. I am going to get healthy and stop the pain meds because they don't help anyway and deal with the headaches and pain when they come and quit living in fear of them for when will they get here. I want to be a better mom and start teaching my kids healthy living cause Lord know we could use some help that's where weight loss comes in to learn a life style change and drop some surgery weight. Don't get me wrong I know that I could be singing a different tune tomorrow but today...Today is a good day for no other reason it is better then the day before and way better then 10 months ago.
Update: 15 August 2005
Hello, I wanted to give you all an update and let you know that this would be my last post. My family and I will be moving about four hours away and my email will be gone.
I have been doing very well and feel 99% normal again. I am done with Doctors and brain Doctors and that feels great. I no longer have headaches or pressure headaches just neck and shoulder pain from my fall when I had the seizure but I can live with that.
Things are going great my husband got a new job and so we will be heading back towards the area I came from 7 years ago so in a since I am going home. I am nervous cause it is change but excited at the new journey for our family.
It has been a hell of a year and I am glad that it is over I have learned that you can never take life for granted and that each day is new day and things will get better it just takes time...
Good luck to each and everyone of you I pray that you all will fine happiness and health with each new day!!
Tiffany Pauley currently is off-line.
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Pauley
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