Husband just diagnosed

Hi everyone, My husband was just diagnosed 7/8/10 for a cerebral AVM, after a cat scan for what we thought were infected sinuses. He was being treated for a sinus infection and had stayed home from work as he wasnt feeling well. He called me at work and needed to go to the ER he said because something was wrong. When we got there is BP was 186/156, which they said was anxiety, but decided to do a cat scan before sending home. Next thing we know he is in an ambulance headed to the neuro unit at Ohio State University. We founf out he has high blood pressure and an AVM, which we had never heard of. They did an angiogram and siad it it the size of a large plum, racquetball on his left side above his ear and is deeply seeded in his brain. The neuro dr has him sceduled for surg this upcoming Fri, and said course of tx will be 3 separate time of putting what he called glue in it to blocked off flow, then a craniotomy to remove it. He said it is to large to just remove it now. They are planning 1 time per week for 3 weeks then the craniotomy. Can anyone please tell me what to expect after the embolization, and just how to cope with this. We live on a small farm in Ohio, I just dont know where to turn for help. Thanks so much in advance and please keep us in your prayers, my husbands name is Ron. He has never had the first health problem, no broken bones, nothing.....we are not coping well.

Hi Angela,

You and Ron have come to the right place for excellent support and information.

My AVM was in the spinal cord, and while embolization for either brain or spinal cord AVMs may be pretty much the same as far as the procedure itself goes, I don’t know that anything else is the same. So I will leave it to those who have had embos for their brain AVMs to talk with you about that.

I’m sure that, much like with a spinal embolization, your husband will have to lay flat on his back and remain still for several hours after the procedure. Beyond that, what to expect can vary. If all goes well he could be released the same day.

I’m glad your husbands AVM was discovered before there was a rupture. It isn’t uncommon for treatment to be done in stages, and the waiting to find out how the AVM is responding to treatment can be one of the hardest things to go through.

I’ll be sending out good vibes and good wishes for Ron, and for you. I know how scary this can be, especially in the beginning. If you can, take a deep breath and just know that there are many people here who will share their experiences and knowledge with you, and most of all, be here when you have questions or need to vent.

Best to you both.

Tori

Hi Angela, and welcome to the group. I know the shock and uncertainty you are feeling, as I was recently diagnosed and I’m still waiting to get an angiogram and learn what my treatment options may be. It sounds like Ron’s AVM is accessible, but too big to remove right away. But, the fact that they are going to embolize and then remove it is really a good thing, in my opinion. Many AVMs are inoperable. Try to be strong for Ron and know that you are both in our prayers. Please keep us posted and don’t hesitate to ask questions. We are here to help. Ron is going to be fine.

Angela,
I’m so glad you found this site, there are so many people that have been through the same situation as you, your husband and family. Please know we are here praying and thinking of you all. My husbands AVM battle started about 22 months ago. He is doing well, and we both consider him very fortunate. Please don’t hesitate to ask questions, we are here to help any way we can. Blessings to you all! Please keep us imformed.
Marie

Thanks to all who have found me, I am still trying to navigate around this site, but so far it has been extremely helpful for me. I think it is the fear of the unknown that is the worst. The what ifs… We had to to the living will and also had a will prepared this week, guess we thought we would never grow old and need one. Ron just turned 50 and I’m 43, and we have the most perfect daughter ever,Makenzie who just turned 13. Can anyone tell me what to expect after his first embolization? His Dr siad he would be in the hosp for minimum of 2 days, to monitor for bleeding. Will he need someone with him 24/7 afterward when released? Im a vet tech and will be working as much as possible between treatments. I tried to get him to read what you have all said to help maybe reassure him in some small way things will be ok, but this is weighing heavily on him and it breaks my heart. He never has handled even the smallest stress well and this is overload. Fortunately I am the strong one, but I think this could break me, worrying about him, taking care of things at home, work, bills with decreased income, you name it…hope you are all well and I am looking forward to new friendships. Thank you again ever so much, Angie

We will be praying for you. I’m so sorry to hear how this was dropped in your lap.

Good news is he has not had a brain bleed from what you typed up. He needs to take it easy and keep that blood PSI down.

First off has this doctor had a history of dealing with AVM’s ? Have you guys had any second view points on how to deal with it? Find the best doctor you can find. AVM’s are dif. and dif. case by case due to the location and the size.

Lots of great people on here. The chat room is a nice area as well.

You guys hang in thier! We are all here for you.

Get a copy of his medical records as you go a long. So you can start his S.S.D. paper work. Also find a S.S.D. Lawer so this way you don’t have to worry about handeling all the paper work on that end of things.

AVM are cover by S.S.D.

Hi Angie, welcome to the group! The good thing is that they found your husband’s AVM before there was a bleed. That’s a VERY good thing. I wasn’t as lucky and it wasn’t until my bleed that we found out. Bleeds can be very debilitating and can cause many more problems than just the AVM itself. Embos are done to seal off the biggest vessels and to make surgery much more successful. I’m sorry that you have found yourself in this situation. I know how difficult this is for you. My husband has told me everything about that time (from bleed to coma, to surgeries, to recovery, and rehab.) I don’t remember all of that but to have to try to keep going along while the person that you love is going through this must be terrifying! Hang in there and keep reading others experiences here, it really helps. We are all here to help. Good luck and please keep us updated on his progress.

Hi Angela
First I want you to know you and your husband are in my prayers. I just had my fifth embolization on July 1st and each one for me was different in the recovery area. I will be having several more done before my radiation treatments start again. It is so hard to comprehend when you are diagnosed because it is something that is not really heard of but know we are here to support you and your husband. I was diagnosed very young and have dealing with mine for 38 years now but when it came to the point of treatments being necessary I did alot of research and asked alot of questions don’t be afraid to do this. My heart goes out to both of you and you both are in my thoughts and prayers.
All my best to you
Lee Ann

Hi Angela:)…had no previous health problems as well, I was really happy with the embo,they didn’t want to do a craniotomy because of the area it was in, was exhausted for about a month,kept in a few days under observation, 3 months now,5 since the bleed and not getting headaches anymore:)hope everything goes the best for you and your husband:)Good luck and best wishes, Jmo…

Angela, I just signed up to this site today. I am 51, on 6/10 I was found to have my AVM, it is not bleeding in reading your information I don’t think your husbands is bleeding. I went to UPMC in Pittsburgh, on 7/14 I had the Gamma knife radiation. Has your Dr. talked about this with you as an option? I believe they can do the embo and then the Gamma knife to shrink this until it is gone. My Dr. recommended the Gamma knife due to no bleeding and I was not having any head aches, I had only 1 experience with a black out of some sort. The EEG did not show this as a seizure.
Since you are fairly close to Pittsburgh you might want to have them also review the test results. The more Dr’s you have looking at this the better off you can be.
Prayers and thoughts your way.
John

Hi Angela,

You’ve come to the right place, everyone here is brave - even when they’re falling apart. My AVM was discovered Feb. 2, 2010 when I had an MRI to rule out if the vertigo I had was due to vestibular neuritis. I got a call back from the ENT 2 hours later telling me he was referring me to a Neurologist because “they found something”. My AVM was considered small at 1" on the right cortex between the Parietal and Frontal lobes. They tried to embolize the AVM on April 5th, but the Radiologist couldn’t do it. I spent Tuesday in a fog from the anesthesia. (Be thankful that they CAN embolize your husband’s AVM - it greatly reduces his chance of having a stroke). I had 2 hours to decide on Wed if I was going to have the Craniotomy on Thursday morning. I completely understand your stress, I have a 2 1/2 year old son who needs his mommy. My husband was a wreck and I was numb throughout the process leading up to surgery. Just know that you and your husband will go back and forth through all the stages of grieving as you come to terms with this. I am now 17 weeks out from my surgery and while I had a setback (major T/C seizure lasting 2 minutes) 8 days postop, I’m doing very well. Once the Neurologist put me on Lamictal instead of Keppra, I really felt encouraged that I could have a full recovery. I’ve gone back to school this summer, and while it takes me a bit longer to process information and some of my short term memory got zapped, it’s improving.

We have all been there and I pray for you and your husband. I sometimes wonder if it’s harder on the spouse than the patient. I can’t really tell you about what to expect after the embolization because they weren’t able to do it on me, but I’m sure others can tell you. By the way, I never had health problems other than nasty headaches before all this happened either. My neurosurgeon told my husband and parents that my AVM had slowly been leaking blood for a long time and it was killing the surrounding brain tissue.

As far as turning for help, we’re all here for you! There are great resources and recommendations by other survivors. Just know that we love you guys and your family will be our prayers.

Karen

Hi Angela. I know very well what you are going through. My husband too had a very large AVM in his temporal lobe also very deep seated. His unfortunately ruptured causing a huge subarachnoid bleed and we were very lucky he survived. I know that nothing really sounds like good news to you now but it is very fortunate that it was found before it ruptured and caused a lot if damage. The embolizations take several hours. Richies first was eight or more. They use what is like a large IV that enters into the large blood vessel in his groin that allows them to thread it up to where the AVM is and glue it. He will be really stinky for about 24hours from the glue. He had to have several of these before his craniotomy. A follow up six months later showed that there was still a little left and another embolizations was needed. That last one would be more like what your husband will likely go through because he had mostly recovered from his bleed and surgery. It took three hours or so and he was home the next day. He has had repeat arteriograms and so far all is gone. Again,I know it is a very scary time but it is a real giftvthat it was found before it ruptured and you have the time and good health on his side. Find the best neurosurgeon you can and one who does a lot of these procedures. There are risks just like any other surgery and it is their job to tell you all of them so you will hear a lot if scary stuff. Try to focus on the fact that they are repairing this before something bad happened. I know that it feels like he has a time bomb in his head until they tell you all of it us gone. There is little any one will say to really take all if you fear away. It is a very stressful time and it’s okay to be scared. You will find a lot if caring and supportive people at this site whovtruly understand what you both are going through. You are in our prayers and I really believe he will be okay. God bless you both. Laurie

I echo everything in the comment below. You are in the right place! We are a family like no other. Here to help in anyway we can. It is great not to be alone in such confusing times. You, Ron and the rest of your clam are in my paryers. It is so amazing how we can walk around for so long and never have a symtom and then go in for something so small and then have a doctor tell you so…There is a bomb in your head and we need to fix it. It won’t be easy and there will be pain, but every moment of pain is worth a life time. My love and friendship are here for you whenever you need it.

Hi Everypne !!!

Thank you all so much for the support, I dont know if this is where I should be writing to give everyone an updatebut here it goes.

We went in Fri for the 1st embolization, and I have never felt so much stress in my life, I did not realize it was such a lengthey ordeal, those 5 hours waiting seemed like 24, but all said his surgeon is pleased with results thus far. He was able to decrease its size by approx 40%. He stayed in ICU for 2 days for monitoring and got the green light to come home today. He hasn’t suffered , thank god, any effects other than a dull headache. Neurologically now all seems well. I found it hard to deal with the worry of my husband and everyone calling to check on things to the point I just couldn’t do it. How did you all do it??? I felt like I could just not take 1 more call. We are so thank-ful for his Dr. What a great Dr. and person also. He just moved to Ohio State University from Duke and his name is Dr Cirian Powers. He has just been wonderful to Ron and made him feel like they are a team in this together. Its hard for me to comprehend that we have to do this all over again. The strenghth you all have shown is unbelieveable to me. What special friends you are. Dr Powers mentioned today possible radiation after the next embolization, but has not mention anything about a gamma knife. For fear of sounding stupid, what is the difference?? We are looking for all the info we can get, and I will ask about it at our follow=up this week.
Hugs and Kisses to all who have made me realize we are not alone. Thinking of you all, Angie

Angie, I’m glad he got through the first embo. fairly well. I can imagine it must get pretty frustrating to have to try to answer all the calls when you’re racked with fear. What my husband did was had my friends and family make a phone tree. He would call one or two people and then they each were responsible to calling certain people. That way you can concentrate on getting Ron well and not having to call everyone! Good luck!

Richie was in the ICU for several months so it was exhausting fielding calls. Initially I designated s family member to update everyone but it still was difficult. People really mean well. I began sending out a mass e-mail and that really worked out well. My one friend would post the updates at work and everyone else got the email. I also found it a great way to let some of it go. Sort of like keeping a journal. A friend kept every e mail and we we able to give them to richie like a diary of what happened because he couldn’t remember any of it. It really made things a lot easier. I am so glad that things went so well, our prayers remain with you

Angela Johnson said:

Hi Everypne !!!
Thank you all so much for the support, I dont know if this is where I should be writing to give everyone an updatebut here it goes.

We went in Fri for the 1st embolization, and I have never felt so much stress in my life, I did not realize it was such a lengthey ordeal, those 5 hours waiting seemed like 24, but all said his surgeon is pleased with results thus far. He was able to decrease its size by approx 40%. He stayed in ICU for 2 days for monitoring and got the green light to come home today. He hasn’t suffered , thank god, any effects other than a dull headache. Neurologically now all seems well. I found it hard to deal with the worry of my husband and everyone calling to check on things to the point I just couldn’t do it. How did you all do it??? I felt like I could just not take 1 more call. We are so thank-ful for his Dr. What a great Dr. and person also. He just moved to Ohio State University from Duke and his name is Dr Cirian Powers. He has just been wonderful to Ron and made him feel like they are a team in this together. Its hard for me to comprehend that we have to do this all over again. The strenghth you all have shown is unbelieveable to me. What special friends you are. Dr Powers mentioned today possible radiation after the next embolization, but has not mention anything about a gamma knife. For fear of sounding stupid, what is the difference?? We are looking for all the info we can get, and I will ask about it at our follow=up this week.
Hugs and Kisses to all who have made me realize we are not alone. Thinking of you all, Angie

Richie was in the ICU for several months so it was exhausting fielding calls. Initially I designated s family member to update everyone but it still was difficult. People really mean well. I began sending out a mass e-mail and that really worked out well. My one friend would post the updates at work and everyone else got the email. I also found it a great way to let some of it go. Sort of like keeping a journal. A friend kept every e mail and we we able to give them to richie like a diary of what happened because he couldn’t remember any of it. It really made things a lot easier. I am so glad that things went so well, our prayers remain with you

Angela Johnson said:

Hi Everypne !!!
Thank you all so much for the support, I dont know if this is where I should be writing to give everyone an updatebut here it goes.

We went in Fri for the 1st embolization, and I have never felt so much stress in my life, I did not realize it was such a lengthey ordeal, those 5 hours waiting seemed like 24, but all said his surgeon is pleased with results thus far. He was able to decrease its size by approx 40%. He stayed in ICU for 2 days for monitoring and got the green light to come home today. He hasn’t suffered , thank god, any effects other than a dull headache. Neurologically now all seems well. I found it hard to deal with the worry of my husband and everyone calling to check on things to the point I just couldn’t do it. How did you all do it??? I felt like I could just not take 1 more call. We are so thank-ful for his Dr. What a great Dr. and person also. He just moved to Ohio State University from Duke and his name is Dr Cirian Powers. He has just been wonderful to Ron and made him feel like they are a team in this together. Its hard for me to comprehend that we have to do this all over again. The strenghth you all have shown is unbelieveable to me. What special friends you are. Dr Powers mentioned today possible radiation after the next embolization, but has not mention anything about a gamma knife. For fear of sounding stupid, what is the difference?? We are looking for all the info we can get, and I will ask about it at our follow=up this week.
Hugs and Kisses to all who have made me realize we are not alone. Thinking of you all, Angie

Angela,

This is a tough situation. Went through something quite similar. But keep you hopes up, it sounds much scarier than it is…read my blog if you want, might help.

All the best

A

Hi Angela... I know you posted this 3 years ago, but I was wondering how your husband is doing>