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AVM Survivors Network

Daughter has AVM on left side of brain in the sensorimotor


#1

Hi there! My name is Celeste and my daughter has an AVM on the left side of her brain in her sensorimotor. She had two Grand Mal seizures in November 2015 that brought us to this conclusion. She is 23 and just graduated from college! Yay! Before the seizures she was experiencing numbing on her right side. Mainly in her hand, leg and foot. Also had some nausea and headaches. Three days after the seizures she had an angiogram. The AVM is approximately 3 cm. We live in Fayetteville AR and had a neurosurgeon here who has been watching her progress this whole time. His approach has been to repeat the angiogram each year to look for changes. So far she has had a total of three. She was put on Keppra from the beginning to control the seizures and about four months ago her neurologist added Lamotrigine. Even with both meds she still has small “episodes” or seizures. They consist of the numbing/tingling that she felt before the Grand Mal’s. Two months ago we learned that her neurosurgeon was moving to Kentucky. We have found a doctor in Dallas at UTSouthwestern. His approach has been just the opposite of her first doctor. He feels he can do surgery with minimal deficiencies on her right side. One thing he did mention was doing a functional MRI before anything is decided. We have never heard of a functional MRI. But he does not like doing angiograms due to the risk of stroke. He mentioned Gamma Knife, embolization and radiation.

We are scared. Scared to do the surgery but scared not to. Will she gain back full use of her right side? The “what if’s” eat you alive! I know that we have to make all of these decisions but we feel so alone. He has told us the risks if she doesn’t have the surgery. I just want her to be able to live a normal life. To not have to always worry about a rupture. To be able to have children. Her friends don’t get it…heck, our friends don’t really get it! Can anyone tell me about the days and weeks after surgery. What deficiencies did you experiences? Has anyone not come back 100%? Sorry I am going on and on…I think this is why it’s taken me a while to introduce myself. I have so much to say and just don’t know how to get it out! Thanks for any information you can give.


#2

Hiya clanier,
I have just had surgery 10th may for my avm which was right temporal lobe and around 3 1/2 cm it was an emergency after I suffered a bleed. Luckily I bled into the fluid part of the brain so I didn’t suffer from any defecits! My surgery was a success and I am now avm free. It has took two years from first diagnoses as I had two lots of gamma knife to try and obliterate avm, which I also tolerated well with no side effects or complications,.it was just unfortunate that I suffered a bleed which led to having the surgery. Surgery went well with no defecits as of yet. I had the op on a Wednesday and was discharged the following Tuesday so 6 daysstay in hospital.I did have headaches after which was controlled with the pain meds the hospital giv you. After about a week to ten days I was of all medication and recovery seems to be going well. The first couple of weeks I was extremely tired and had lost my appetite but they are both beginning to return. No two recoveries are the same due to different locations and sized avms, but I hope this helps keep you positive when having to decide which treatment is best for your daughter. Please don’t hesitate to contact me if you have any more questions regards to gamma or surgery. I wish you,Your daughter and family all the best in this journey. Xx


#3

Amanda, thank you for reaching out to me! All info is very helpful and I appreciate you telling me about your procedures. I am so thankful that your surgery has been a success and you haven’t experienced any major side effects!! Was the bleed during the Gamma Knife? Or had the AVM not been completely obliterated by the Gamma Knife?


#4

Hi, thankyou. my bleed was 18 months after the 1st gamma treatment and just under a year after the 2nd treatment. When my surgeon spoke to me after surgery he said that the gamma was doing its job and it was the right choice to make having gamma. It was just really unfortunate that I suffered a bleed, I had been having somestress leading up to that day so I don’t t know if that contributed to it. I’m not sure tho if gamma aggravated the avm as when j was first diagnosed I was told it was 33mm but my recent discharge notes stated it to be 4cm so I’m a bit lost to as why this is. A jesting I shall ask when I have my post op appointment.
All the best
Amanda xx


#5

I was once completely paralyzed on my right side for a month because my brain AVM ruptured. I of course didn’t no what an AVM was and just a 10 year old boy at the time. After my first surgery kept having small seizures 2 or 3 a week. So I then was taken to St.Louis and Had more M.R.I checks and an E.E.G. They found 3 small clots from my AVM bleed that had formed so 3 more surgeries. To this day great health but still have some miner problems with my right side. My balance if standing with just my right leg isn’t the best. I also have problems with my right eye. The vision isn’t as good as my left eye and the right peripheral vision is of a lot. It will be best to have the surgery if it stops the seizures I’ve gone 10 years without having one happen and am even able to drive now best of luck to you and your daughter.


#6

Hi I have an AVM on the right sight of my brain, the doctors said that it is too risky to operate because of the size & location. I have had 2 gamma treatments about three years ago., that was the only option I had. the doctors are happy with the progress, The AVM is shrinking. Gamma procedure is not as hard or complicated as brain surgery.You can go home at the end of the day,fixing the frame is the hardest part. a MRI, ct & an angio is done for the doctors to decide on the time & strength of Radiation.I am on medication for seizures. Didnt really had much difficulties after the treatment. Hope this helps & good luck for your daughter’ treatment. We all do understand how you feel as we all being /is there.


#7

Mine was in the occipital region so I know it’s not the same but mine went untreated and undiagnosed for 36 years and I can tell you it’s not easy I got so used to headaches that they became the norm I was only bothered when they became migraines and I had everyone thinking I was the world’s biggest klutz because I would space out and walk into things and trip over my own feet as they called​ it! In reality I would become uncoordinated and fall , and dizzy and strange feeling that’s when I usually walked into things people never understood that I had weird things happening all the time my mom thought I was a hypochondriac!! She cried when I was diagnosed because all those times she yelled at me to get outside and play there wasn’t anything wrong with me made her feel guilty! I had a craniotomy 20 yrs ago and I feel better than I have ever felt in my life! The first couple years after surgery were not easy but I healed and got better over time I would recommend taking care of it now but that’s just me and my experience I think the wait and see attitude is ok with some things but this is serious and I prefer to fix it before something irreversible happens!


#8

Clanier - Get another opinion from a top Neurosurgery facility. Can you get to Mayo Clinic in Minnesota, or Northwestern Memorial or Rush in Chicago? I had an embolism done in NYC (NY Presbyterian) many years ago, 3cm AVM left side with numbness on right side of body. NYC has some of the best specialists in the world. Good luck, I wish you success !


#9

Thank you all for sharing your journey with me! It helps so much! I am very thankful I found this network. It is great to talk with people who have experienced the same issues. To be able to ask questions and opinions is amazing! We are still waiting to hear from her doctor to schedule the functional MRI. John_O, I can’t imagine being 10 and going through this process. Can’t imagine what your parents went through. Your recovery is remarkable and gives me such hope for Paige. ANSUL, I have read several stories about the head frame being the worst part of Gamma. So with Gamma, the AVM isn’t taken care of at that time?? Does it just shrink as the years go by? This leaves me to think that a bleed is still very possible during that period of time?? I am writing every question down to ask when we return! Beverly, I have thought back on times when Paige felt bad and wondered if I blew something off thinking she was being a little dramatic. (She was a drama queen in her younger years!) When Paige has her episodes she actually has a dazed look and is unstable. Her episodes aren’t as frequent now that she has graduated from college. We figured out that stress, lack of sleep and menstrual cycle (TMI-sorry) are when she mostly has these episodes. Her doctor has stated the same thing about having surgery opposed to a bleed or rupture happening that may cause serious irreversible damage. I want her worry free, happy and healthy again. EastCoastAVM, we have thought about going to Mayo or Johns Hopkins. My mother-in-law had a friend give us Dr. Welch’s name in Dallas. Her nephew had an AVM removed by him. We would like another opinion to compare since this one is completely different from the first. Did you have any side effects after your embolization? How long did it take to recover? Again, thank you all for responding! I am grateful! Paige isn’t in a place where she is ready to read responses or hear about side effects yet. Not until she has to. But as her mom, I want to have as much information as I can get, to ask as many questions as I need, in order to help her make the best decision!


#10

Hi Clanier ye s Gamma knife does not remove the AVM instantly ,it is a slow process, they it takes about 3 years for a complete recovery & yes the danger of bleed does prevail. Thats why if the AVM is operable they will always recomend that.mine is unoperable because of size & location. I know its hard making the decision,when you do have faith in that ,all thr best.ask any thing any time u want.Happy to help


#11

Hi Celeste,

I am sorry for all that you and your family are going through. My little girl is 9 years old - she never had a bleed or seizure, but she had other symptoms that led us to her diagnoses. She had gamma knife a month ago and came through with flying colors. Gamma knife or other forms of radiation such as cyber knife are not an instant fix. It can take a few years to see the full effects, but it has a pretty high success rate. We were out to dinner that same night, so the recovery was pretty quick! Her only option was radiation and we agonized between gamma knife and cyber knife. We met with MANY doctors. There are some excellent doctors that specialize in this. After I had multiple doctors tell me that radiation was the way to go, I felt confident. Embolizaiton was not an option for my daughter. It is fairly easy to get doctor opinions if you send your disks around, but ALL doctors are going to want to see at least an MRI / MRI and I was asked to get a CT Angiogram, which is just a specialized CT Scan. My heart goes out to you. I know how hard it is, but once you make a decision about treatment, you will feel much better. After my daughter had gamma knife, I felt like I had just won the world series. It was a roller coaster for the whole family leading up to her procedure, but once it was over it was a true sense of accomplishment. There is lot to know about radiation and embolization. I felt good because I had very good doctors all telling me the same thing (more or less), so I knew I was on the right track. Then I zeroed in on who I thought was the very best neurosurgeon / radiation oncologist to perform the procedure. Do as much research as you can. Try to send your records around and get opinions from other doctors. Medicine & prayer are both very powerful - we need all we can get! If you ever want to talk by phone, I can send you my phone number. All the best & your little girl & trust that she will be okay - Jill


#12

Hi
reading your daughter’s story I found it in a way similar to mine. I had an AVM in the right parietal 2.8 cm in diameter not in the sensorimotor area but right next to it. Asking for more opinions is a good thing. I was told that my AVM in terms of difficulty to be removed was around 2 may be a bit more from 5. I was given the option not to do anything or have surgery which potentially could have paralyzed the left side of my body minimally the left arm maybe more or do Radiation but it would take at least 2-3 years to see if that works. I was nervous about every option. Interviewing the radiologist she said that I should not worried because she thought she can direct radiation to where it should go. She told me she had removed a tumor from the center of the sensorimotor area. My AVM was easier to be treated being on the side. That gave me the confidence I needed to decide to have radiation. My 2nd annual followup after the radiation was last January and the AVM has disappear from the CT scan. You can only see some small activity in that area with the MRI detected by the computer but not with the naked eye. Don’t be afraid to ask for more doctor opinions especially if you get different opinions from one doctor to the next. Good luck to you and your daughter I am sure at the end everything will be fine and you will make the right choice whatever that is.


#13

My son has a 2 cm AVM on left side of his brain. He is currently being treated by Dr. Welch at UT Southwestern. He had gamma knife February 2016. He will have his 18 month check up/MRI in August.


#14

Hi everyone! I want to thank each one of you again for sharing your stories! I have gleaned something from each of you and have started a notebook to take with us wherever we go! Sorry for not responding sooner…it has been a crazy summer! My dad fell due to a heart attack and broke his ankle two places. After two heart caths, three stints, a plate and several screws he will go home tomorrow! It’s been 16 days in the hospital! My daughter had a wreck and totalled her car. Although she was not injured she hit her head and it scared us all to death!

All that to say, we are going to Mayo August 8th. Our doctor in Dallas has made connections for us. So we will get another opinion and go from there as far as which treatment they decide is best! I will keep you all informed after we return! @Pallison, I am anxious to hear how your son’s 18 month check up goes! Did he have any side effects from the Gamma?? Good luck to him!


#15

He has not had any side effects from the gamma knife. We have been very thankful. At his 12 month appointment, it was beginning to shrink. I am anxious for good news!


#16

He had gamma on a Thursday. He was back at work on Monday. He was tired about a week after gamma knife. He had headaches everyday before he was diagnosed with an AVM. After gamma, the headaches went away.


#17

Pallison, that is great news as far as no side effects! Please let me know how his August appointment goes! Anxious for you! jillyinphilly, so glad that your daughter has done so well. I’ve heard the younger they are he better they recover! And I CANNOT wait until I have that feeling of winning the World Series! We are a little over a week away from our Mayo trip and it just can’t get here fast enough! Could do any of this without prayer! :slight_smile:


#18

I am looking forward to your daughter’s Mayo appointment too. Keep all of us posted. Prayers for a perfect peace to accompany you all as you listen to a second opinion and move forward.


#19

Hi everyone! I’m finally getting back on here to update everyone! We took Paige to Mayo on August 8th and on August 11th they did Gamma Knife radiation on her. At first they thought they would have to do two surgeries but after the MRI and angiogram they determined they could get it all in one surgery. That was a blessing! The head frame hurt like everyone said! 5 weeks later she is doing good. She is still having daily headaches and fatigue. She has lost hair and that was devastating but tonight I could see hair growth! YAY! Her doctor said 6 months will be the mark if she is going to have any deficits so we wait for that! They won’t do another MRI until 12 months but we really, really want one at 6! We would love to know if anything is changing/shrinking! She has had two small seizures (one in the hospital as we were leaving and one at home). Thanks for all of your thoughts and prayers!

@Pallison, I would love to hear the August update on your son! Hoping there was no sign of the AVM!!


#20

I am so glad that the gamma knife is over. It will only get better from here… I have been checking he website daily for any news from you. Yippee for new hair growth. That is a blessing. Hopefully, the headaches will go away soon. Our son, had no swelling or any other issues, but if your daughter does it just means the radiation is working! The appointment in August went well. The AVM which showed as a round circle on the February MRI is now showing as a crescent shape. The dr used the words “good chance” and “likely” when we asked about obliteration in the next 6 months. So, the wait continues. We prayed for it to be gone in August, but we still feel very blessed by the news. 18 months down and hopefully only 6 months to go! Still keeping Paige in my prayers.