Hi, I am newly diagnosed with an avm in the back of my brain. I am so scared, because I have a new baby. I’m also afraid that they will shave my head to treat this. I will know more on Feb 4th. I’ve broken 2 bones from seizures which are eclampsia related. (they found the AVM by chance on a CAT scan) I’ve never had a seizure in my life until Dec. 2009. I’m scared can anyone help?
Tinamarie it is hard right now b/c you don’t know what they have planned for your treatment. If you have a craitonomy you will get your head shaved at the area they will entire. If the do any embolizations they will most likely go though your groin area. If you have gamma knife or any other kind of radiation there is a chance you will lose some hair. I lost a chunk and was upset but it came back to pretty quick. and the radiation takes 2-3 years to fully treat it. And depending on the size some have had to have more than 1 radiation treatment. Have they put you on seizure meds yet? Which one? I’m on keppra 1000mg a day and klonopin .50 mg a day. I wish you the best of luck and hope this info helped you some!!!
Welcome to the group and congrats on the new baby. Its hard to say exactly how treatment will effect your ability to care for your baby until you’ve had all the preliminary tests done, particularly the angiogram, and discussed with your neurologist your best option for treatment. I would recommend you start writing down any questions you come up with now, especially your concerns for caring for your baby, because once you start meeting with him, sometimes it can become so emotionally charged that questions get lost in thought of what the doctor just said. I would also recommend bringing someone close to you who you have discussed many of your concerns with, this was most helpful in my case.
I can say that for the first two weeks following my surgery, I was most definitely incapable of caring for a baby, let alone myself. I had to rely on the care of my wife to help me get through the first couple weeks, hopefully you have a close family or friend who may lend the same assistance. But there are other option available for treatment, i.e. radiation and embolization. Unfortunately I can not speak directly in regards to the recovery following these procedures, but there are many people on this site who can speak directly for the recovery for these treatment options and they will be most willing to help in any way they can!
I would have to say that you are definitely one strong individual if having to shave your head is one of your greatest concern…my head was swirling with much more damaging thoughts, especially once I set my sights on having surgery!! I did have to shave the right side if my head, but I had a little fun with it and gave myself a once in a lifetime faux-hawk. But in your case just remember that hair grows back, its only temporary!!
Please keep us informed of your progress and feel free to ask me any questions.
Best wishes going forward
Thanks, Ray
Welcome Tinamarie,
Being super scared is a very common initial response that all of us share.
I don’t mean this to put your down or anything, but once you hear about treatments, the least of your fears will be shaving your head (grin). Honestly, if they do embolization the hair stays fine. Radiation will cause a few patches missing most likely. Now surgery… When my wife had an aneurysm fixed and later conventional surgery, she was missing large pieces of hair. Any more, they try to keep the scars within the hairline and with the ways they pull it back, only the scar area is bare following.
Wearing hats or scarves takes care of it til it grows back.
Once you hear the treatment plan after the 4th, you should have a better feel.
Best wishes,
Ron, KS
Losing your hair is the least of your problems. They shaved my head when i had a craniotomy after my AVM bled (I didn’t know I had it and almost died…it was just luck that I got to the hospital in time) You should be relieved yours was found and you can be proactive about the treatment. Hair grows back. I have had hair down to my waist my whole life and now think I might keep it short cause I get so many compliments with the short hair. At first i worse a lot of head scarves but now it’s growing in. You rbaby will just be happy you’re bal and alive. Best of luck with your treatment.
Thank you everyone for your replies. I have to have surgery on March 31. They will do a crainiotomy. I go for pre-op next week at Mass General. How long is the hospital stay? What is recovery like? I know everone is different, but I need a rough idea. I know the hair comment must seem very vain, but my biggest concern is leaving the baby, and for how long.
Hi Tinamarie,
My heart goes out to you. You are lucky that you are able to have surgery as it should be a complete fix. Did the Docs tell you that surgery will cure you? What are the risks? I’m just asking because my avm was not in a good place for surgery, it would have been too risky so my docs chose to do two embolizations and one stereotactic radiation procedure. I did lose a very small patch of hair but you couldn’t see it, it was underneath the top layer of hair. I am thankful that I do not have any symptoms, no seizures, no headaches (other then normal ones people would get) and my dizzy spells have gone away. Now it’s wait and see for 3 years to see if my avm shrinks. You are at a very good hospital. I am from Massachusetts. I moved to TN 6 years ago though as my husband’s company (based in MA) transferred us out here. TN has great hospitals too though. I’m sure you are in excellent hands!! I’ve never had brain surgery so I cannot tell you how long you will be " out of commission" but make sure you have lots of help. You will get through this! Have faith, stay strong and know you have lots of support here on the AVM site. Congrats on your new baby, let your child be your strength to get through this!! ((((hugs))))
tinamarie said:
Thank you everyone for your replies. I have to have surgery on March 31. They will do a crainiotomy. I go for pre-op next week at Mass General. How long is the hospital stay? What is recovery like? I know everone is different, but I need a rough idea. I know the hair comment must seem very vain, but my biggest concern is leaving the baby, and for how long.
Tinamarie:
I understand your fear and unsecurity. For your own peace of mind just think that now this procedures are more advanced than ever before. Just be greatful you are in a country where you can rely on the knowledge and special equipment that can help you.
Be positive and this is going to help you go through this experience. Just think that after all you were lucky to find out about your AVM before it was too late. Nothing is just plain coincidence because the Lord wanted to give you another chance to live for your child so go on forwar and place your self in God’s hands. You will come out of there with new streghth to raise your baby.
I will peronally be praying for you. Just tell me what time is your procedure on March 30th?
God bless you""""
Hey,
I had a craniotomy on Nov. 9. I stayed in the hospital for 13 days. Wasn’t fully awake until the 11th. Pain wasn’t so bad at first cuz I was on morphine which makes u extremely woozy and tired. The first week is pretty much a blur. After about a week, they moved me from ICU to a post-op room and took me off the morphine and started giving me percasset, which is not as strong but works pretty well. After 2 days out of ICU they let me walk around (I snuck out of the room twice to go to the lobby and see my kids cause they weren’t allowed to visit) I tended to have good days, where I was very alert, followed by days when I did nothing but sleep. When I came home, I stayed at my parents house for a week, where my mother took excellent care of me and forced me to rest and would not let me do anything at all. For the first two weeks out of the hospital, I was extremely tired and took many naps. I couldn’t take care of my baby (he was 15 mos at the time)Two weeks after leaving the hospital, I went home where I was still extremely tired, but was better able to do some things like cook a small dinner and watch the kids. . less than 2 months after the surgery (jan. 4th) my doctor told me to go back to work (teaching 5th grade). I was extremely tired, but now I think it might have more to do with the seizure medicine than the surgery. Seizure meds are given as aprecaution even if u never had a seizure just cause the swelling in the brain. As soon as I stopped the seizure meds (Keppra), i felt a million times better. My doc also prescribed pain killers called fioroset(dont think its spelled right) but its basically acetaminophen (tylenol) with caffeine…gave me a lot of energy. I wasnt allowed to drive for about 6 weeks, just in case I was gonna be prone to seizures (which never happened)
GOOD LUCK! I hope this was helpful…everyone’s experience is different…urs might be easier cause u didnt have a bleed…p.s. my hair is already about 3 inches long
I had the same thing. When I was six months pregnant with my first baby I had a massive brain hemorrhage from an avm rupture. I was in a coma for a week with a zero chance of survival. They had called all of my family to come say goodbye and told them that I wouldn’t survive the first night. They were wrong. I was very afraid when I woke up since the first dr. said that he wouldn’t deliver my baby. He wanted to do immediate surgery and she would die. Ugh! I fired him. I got Dr. Bruce Anderson to do my surgery. They had to shave nearly all of my golden blonde hair. It was very disturbing since I had never cut my hair… lol. That became a non-issue believe me! I spent a week in the hospital following surgery. I had a small baby that I had to come home and take care of. I had to do it myself since the husband was not helpful! That was eight and a half years ago. My baby lived. I am alive and mostly well. The only advice I can give you is to treasure what you have now. Always get a second opinion. And realize that you have the right to decide what course of treatment you receive. I will pray for you. God bless.
xxmissa
Thank you so much everyone. I have faith that God will help me pull through. I am on Keppra 1000 a day. I am thankful to live in the Boston area, with great medical treatments. I’m still breastfeeding, and hoping to continue (pump and dump) after the narcotics leave my system. Narcotics are scary to me because I’m a recovering alcoholic (5+ years) Honestly I will need them, and am looking forward to catching a buzz again. How sick is that? I will have surgery on March 31st at 6:00 am. I’m trying to see the positive, like not having to do laundry for a while. Thanks again everyone
Be positive and focus on the positives which are they have found this before it has had a chance to bleed and that you are getting surgery very quickly following diagnosis and that this surgery should fully remove the avm They good thing is if they can fully remove it then you are cured so to speak. Good luck for 31st.
you can do it! Best wishes and keep us posted!
tinamarie said:
Thank you so much everyone. I have faith that God will help me pull through. I am on Keppra 1000 a day. I am thankful to live in the Boston area, with great medical treatments. I’m still breastfeeding, and hoping to continue (pump and dump) after the narcotics leave my system. Narcotics are scary to me because I’m a recovering alcoholic (5+ years) Honestly I will need them, and am looking forward to catching a buzz again. How sick is that? I will have surgery on March 31st at 6:00 am. I’m trying to see the positive, like not having to do laundry for a while. Thanks again everyone
Tinamarie,
I can imagine it’is a scary time for you since there are so many unanswered questions. All I can tell you is that I had my craniotomy two weeks after I had my bled and diagnosed with AVM. I had my craniotomy and was discharged two day later. I was tired for the next few after the surgery however I returned to work 3 months after my surgery. Maybe I was just lucky but I do know that GOD was with me. Be positive.
Good luck on March 31