Thank you all for being so welcoming to both my husband and myself. I think I am suffering from what I call post traumatic Richie syndrome. There are just so many feelings that pop out of nowhere. I am a nurse and Richie had symptoms several days before The Big Bleed, buzzing in his ear, loss of hearing. He was seeing a doctor and they were treating him for an ear infection. His behavior was really bad over the weeks prior to the bleed, and at that point I was so angry that I really dropped the ball. He was angry all the time, yelling and really unreasonable. After the event I realized why he was behaving so badly and it was likely due to the beginnings of the bleed. I have terrible guilt about this because I knew something was wrong and told him to return to the doctor, but did not push as hard as I normally would have. I know intellectually that most would have acted in the same way that I did, but being a nurse makes me feel even more guilty. I remember the call at work from my daughter, hysterical that he was lying on the floor and then taken by ambulance to the ER. I found him with an agonizing headache, nausea and blood pressure through the roof. No IV started, no antihypertensives or pain meds were given. It was like pulling teeth to get them to do anything. I was at the hospital where I used to work, and when they heard Richie was in the ER some of my old friends came down to check things out. Once they saw the CT scan and told me that pretty much my husband had a head full of blood. I still had to fight to get him medication to control his blood pressure and pain. It took several hours before they placed the ventriculostomy to relieve some of the pressure…way too long. I had to make the decision to have him transfered to Penn State Hershey Medical Center via helicopter. That decision was not well received by the staff, and one of the nurses actually said that it might be the last time I saw my husband because of my decision. It was hard enough knowing that to transfer him when he was so unstable might not be the best thing, but I knew that the care he was receiving was really terrible. Once he arrived at Hershey, it was amazing how much better his care was. I can not say enough about the staff, and I am certain Richie would not have had such a good outcome had it not been for them. My time line for all the procedures, surgeries is pretty blurry but all in all it was four or more months before he came home. The AVM was very large and deep in his temporal lobe, and after two embolizations totaling around sixteen hours, we were told that they were not sure how they should proceed, and that they were going to contact other experts in the field for their opinions. My favorite doctors to work with are those who admit they do not know it all and are willing to get as much information as they can, rather than try to act as if they are omnipotent. They told us that he was having such severe vasospasms that it was likely he would again begin to bleed or have a stroke either of which would kill him. They were very honest about how grim his outlook was but made it clear that they were going to do everything they could to help him to survive. They felt that he would not benefit from gamma knife, and that a craniotomy would likely leave him with paralysis but it was their only option. He had so much swelling and vasospasms that they could not do the surgery for weeks. During this time he was at high risk for infection because of the ventriculostomy. He then developed menningitis, which also postponed the surgery. Every possible complication there could be, he developed. The first two weeks I stayed at the hospital and left only to shower. The next week or so I stayed at a hotel at night near the hospital. At the one month point I began to sleep at home which was about an hour away. I spent about sixteen hours a day at his bedside. On really unstable days I never left at all. I really trusted the staff there, but nursing has become so demanding that staff are often unable to do all they would like to. I felt that I had to be there to make sure everything was okay, without stepping on too many toes. I developed a great rapport with the staff, and it made it a little easier to leave for a while, but there was always that guilt when I did. I felt like if I left something terrible would happen. Being at the hospital and all that was happening was very surreal, but when I went home it all became very real. It was a lot easier being exhausted to the point of distraction than to be home and deal with the reality of it all. It was so hard seeing him in so much pain, and not being able to make it better. I just wanted to get into the bed with him and hold him. I wanted to tell him when he asked me if he was going to die that he was not going to but instead told him he was very sick and we were working hard to get him better. All the time knowing that there was a real possibility that he would die or worse be left so disabled that he would have no quality of life. I do not know which was worse, crying so hard you could’nt stop or just going into zombie mode. The best way I can describe the whole time he was sick was feeling like some one was holding my head under water, and every time I came up for air they would shove me back under the water. Some one said to me at one point, “who do we think we are? we are not God, we do not control the way things will ultimately be, so stop trying to manipulate His plan. Do not give up, but realize you are not in control”. I think that released some of the burden I had placed upon myself. I held up pretty well before, and after the crani, after the permanent shunt was placed, and then the feeling of losing your safety net of caregivers when he left for rehab. Fathers Day was the first time since April that I was actually able to sit side by side with my husband. His affect was still pretty goofey, but I could see a little more of the person I knew before. It was a great day. By afternoon, he just did not look right to me. Everyone thought I was paranoid, but I knew something was wrong. It is a terrible feeling to know something is wrong and everyone think you are crazy. I had the docs at rehab look at him twice and they told me he was fine. My mother argued with me that I thought I knew too much and I had to stop. By that afternoon Richies temp was 104 and he was back on the helicopter to Hershey. His shunt was infected. I think that day was almost worse than the day of the bleed. You know when you think you can finally take a little breath and then… I guess I can best equate it winning the lottery and then losing the ticket. Since I am even getting tired of hearing myself write, I will try to speed things up a bit. One week of antibiotics, me laying my head on his chest crying and blowing snot all over him, him barely able to speak but manages, dont worry it will all be okay and comforting me the day of the new shunt installation. Back to rehab, another shunt scare with an overnite stay in the ER in Philly. On July 1st I was done, not well done, burnt. I informed rehab that I would like to take my husband home that weekend. They were not to happy. They made it happen anyway. I brought my husband home on the fourth of July, Independence day. We know how to make a statement. He had lost sixty pounds, his head looked like the stitching of a baseball, and the the shunt looked like a little breakfast sausage on the top of his head, and he was the best looking guy I ever laid eyes on. I am so blessed and grateful to have him finally home and as intact as he is. It defies all medical reason we are told. Okay so after, writing so much that your eyes are probably bleeding from reading all this…I will write some more. I am on a roll. I will spare you the medical bill and insurance details, all of which I am sure you are very familiar with,(visualize me rolling my eyes while pretending to tighten the noose around my neck). So I guess after all of this verbal purging I can now get to the part where I need some help. I think after reading all of this you have already come to that conclusion . It is now November, over six months since the event, four months since he has been home, and I am still a flipping mess. I really thought things had settled down and I was okay. Wrong. I don’t know what happens, it just comes over me like out of no where and I am in a panic or crying. I have nightmares. Not even about Richie. I dreamt some one threw a giant guinnea pig into my car while I was driving…it was not a friendly sort of guinnea pig by the way. I do not know how to take care of me. I do not want to have to talk about what happened, I want some one to already know. I want someone to tell me how the heck do I find the reset button. I read some of your stories and you are all so amazing. I feel guilty for feeling the way I do when I am so lucky to have him back. I guess the bottom line is are there any family members as crazy as me, and how have they gotten their lives back on track.
Hi Laurie,
I’m new here to the site myself. I’m pretty sure you’re not crazy. When my son came home from a month in the hospital from his AVM…it all came rushing to catch up to me. I had panic attacks once I got home. I ended up in my cardiologist’s office because I thought I was having issues with an irregular heart beat again. He said nope … you’re just crashing from the past month of holding everything inside. I have found writing at a site like this does help. I’ve blogged my son’s story at another site and found support. Even with my son doing so well and trust me I’m very grateful for how great he is doing but… things can never be the same. My son even knows the difference from before to now. He refers to himself as the Old Ryan and the New Ryan depending on what he can and can not do. He is very aware of the differences. You are more than welcome to write to me anytime you need to vent. I’m sure there are many here that feel the same. We all have a connection.
Take Care,
Marla
hi laurie,
it all takes time sometimes it is harder for the love ones rather than us with the AVM…my mother was a miss for a long time…especcially after sitting by my bedside in ICU for 39 days…and anothertwo and a half months in rehab watching me learn to walk and talk again…it broke her heart…and 9 months later it still hurts as she watches me try so hard to regain movement in my left arm… so give yourself time it will get easier…unfortunatley there is no miricle cure it just takes alot of time…try to be positive and strong…feel free to drop me a line whenever …always up for a chat…take care
Hi laurie
Let it all out! As others have said it is harder on the family members than it is on the person with the illness. Though my AVM has not bled yet (only two pin hole bleeds) it has caused many side effects which my family has witnessed. My son actually witness me going into a seizure while driving and hitting a tree a high speed. It was more tramatic to him then myself. I had a complete breakdown once everything was over with my daughter having cancer (Synovial Sarcoma Biphasic). I think I was in such a shock state through the whole thing just listening to the docs telling me her chances were slim and then going through the amputation and just focusing on her I did not deal with it until months later. What you are going through is normal and again as others have said cry, scream, jump up and down, throw fits you need to get it out. My thoughts, prayers and heart is with you and I am always here to talk when you need to.
All my best to you and your husband
Lee Ann
What you’re feeling is very normal, Laurie…so don’t be too hard on yourself. I have to agree that it sure helps to havee this site where everyone already knows my story and can totally relate. Viva la AVM Survivors Networrk!
So I read every last word of your story and wow, what a story it is. I say as the others have, let yourself have whatever feelings you want. And know it is all normal and a needed phase to go thru to heal from all of this and get stronger.
I got so sick of people telling me I had to be positive when I wasn’t feeling positive, I was terrified and really p-off! Finally, I just stood up for myself and let myself feel scared, angry, bitter, and terrified and I cryed and cryed and I still do.
What you have been thru must have been just so difficult. I think you have to get used to this new you and a new “normal”. Maybe you need to talk to someone who has been thru something similar. For me it was reading, reading reading and finding out as much as I could about this condition. Maybe you could find books on dealing with traumatic life experiences because sometimes reading that what you are feeling IS normal, can be reassuring and comforting. Just a suggestion and I hope you are able to feel better soon.
laurie I read your stories and I LOVE YOU ! thank you for being you !
your avm husband… richie
Hi Laurie,
I just read your post and hope you and your husband are doing well! I was wondering how is he doing now? I am from the Philadelphia area. My husband had been at Abington hospital when we found out about his AVM and those people were absolutely amazing! He had gamma knife done on 11/6 at Temple hospital by Dr Laske and Dr Miyamoto who are also great. I feel a bit crazy at times. Even a bit overprotective. I’m scared to death and I’m praying my husband Steve will be ok. After your husband’s shunt was out in, did it stay there? Is he having headaches? Any info you can provide would be great.