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AVM Survivors Network

The mental fight


#1

Hi everyone,

My name is Rachel. I’m 21 yrs old and I have an AVM in my left mandible. I’ve had almost 20 operations since I was nine and have usually dealt with the trials of this alright. But within the past year things have been really difficult for me emotionally. I keep asking myself, How much is “enough” treatment? It seems like things aren’t ever going to get better and I’m only buying time or… I don’t know. My pain is through the roof and the doctors took me off opiates because I have a “long term problem and opiates are a short term solution”. Neurontin doesn’t work and they don’t think other pain meds will either.

I was supposed to have another angiogram and bleomycin injection in NYC next week, but I just found out today they still don’t have authorization for my operation. In addition, they were also going to do a nerve ablation in one of the areas I’ve had intense pain in. However, that’s not happening either.

I just feel like at this point I’m going to live in pain forever. With every operation it just gets worse; and my AVM only is manageable for a year or two before I have to go in again. Has anyone else struggled with questions of how much is really worth it/Would it be terrible to just let it grow? I’m tired of countless appointments, traveling, and missing school and work. I don’t know how to grow to be ok with it all again.

Thanks for reading. Also tagging @Facial group (hope that works) in case anyone there has dealt with similar issues.


#2

Rachel,

It makes me sad to read your post. I can feel your pain, even though it sounds like I can’t feel nearly as much of your pain…

Two thoughts come to mind right now - maybe more later. I have been battling my AVM for 41 years which means for pretty much all of 41 years, I have had neck, shoulder, head or left arm pain. Other than the first couple months post op, none of it as been like the last twelve months. But my therapist has helped me see that while my life is substantially different because of the AVM, in spite of the pain, I’ve been able to have a good life. Why do I say that? To urge you to get with someone - therapist, counselor, mentor - whatever - who can help you see the whole picture. The thing we often lose when it hurts like hell and you can’t do what you want. Yeah, that picture. Buried beneath all of the pain, it’s there - it’s hard to find many days, I know.

Second, have you thought about getting a second opinion? I would definitely recommend getting your doctors to send your file to someone like Mayo Clinic (I can help you figure out who to send it to there - I know people who know people). Speaking personally, having another doctor say, “Yep, they are doing everything right and there is nothing more we could do” was good, even though it sucked.

Hang in there and keep in touch,

TJ


#3

Hi TJ,

Thank you so much for the thoughtful response. I’m sorry to hear you’ve had a long battle. My pain is similar to yours (chin, neck, shoulders, back). And I think I need to begin the road to accepting that this is something I’ll probably live with for the rest of my life. Sometimes there isn’t a “magic pill” or operation that can help. Thanks for also sharing your therapy story. I’ve been debating seeking out therapy recently. My doctors recommended it too, that it’s helpful for people with chronic pain.

Recently my parents pushed me to get a second opinion. I was really hesitant at first because I sometimes struggle with wondering if my AVM is at the point where it’s “severe enough”; but maybe the pain & bleeds are signs pointing towards that, it is. In December my doctor at the University of Michigan was ready to take out my left mandible bone because of my pain, and they thought that the AVM had grown into my bone. When I was younger I was treated by doctors in NYC and went back to see them again a few weeks ago for a 2nd opinion. They said it wasn’t necessary to take out the bone; that instead, if the pain & bleeds worsened, they would do a direct bleomycin injection to the bone. I felt a lot of relief at their opinion. I’d also be open to hearing about your experiences at Mayo Clinic too, if you think that would be a good idea.

I have hope that, in the long run, things will be ok. Even though I’ve dealt with this my whole life, it feels like a new journey from here on out.

Thanks for your support. Wishing you the best,
Rachel


#4

@ssweet-dispositionn I am so sorry. It seems like most neuros are not used to dealing with pain patients, Are you seeing a pain neuro clinic dept? I have been at Stanfords pain clinic for about 7 years and they are finally going to try Ketamine infusions. One of the pain drs who is a physio thinks I have centralized pain I have brain pain and leg pain after my stroke and then got occipital pain - These are all constant and never go away. I cant take opiates - Ketamine Infusion is supposed to reset a persons pain and hopefully it helps but just checked and they have not got the pre authorized so not sure it will happen next week either…-
My stroke dr who is the head of stroke at Stanford found out and is so worried is having me admitted cause I am allergic to so many meds. I guess you can also have like an acid trip. But I cant afford to pay for 3-5 days of Stanford hospital stay…

I do also get Botox shots where my pain is and my migraines got worse after the stroke and AVM so this has taken it down 1 notch and occipital shots have helped for 3-4 weeks- so there are things they can do to help
Please get referred to a university pain clinic if you have not.

Hugs
Angela


#5

Hi Rachel, I understand your frustrations, I had a brain AVM so was different to you, But understand the waiting for treatments and how much longer can this go on etc …. its very tough and frustrating, But I’ve always been a positive guy, I know first hand it could be worse, you’ve probably seen first hand also this situation, Keep fighting on, At 21 your just beginning your life and have many, many adventures ahead of you !, lifes a tough and rough ride, but worth it :slight_smile: , you have been though so much so far and we both know you are a strong person, you know this, keep fighting and smile each day, it will make you feel happier and changes your day :slight_smile: , Take care

Martin.


#6

Rachel, Sorry for the delay, I have been off line a lot this week. The kids had snow days 5 days in a row this week, so that kind of messed with my schedule too.

Let’s see, my experiences at Mayo. First time I was there was in 1978. At that point, I had a major surgery and they removed 95% of it - the rest was too close to my spinal cord.

I went back in 1984 for a potential follow up treatment but they determined that the risk of treatment was greater than the benefits. While my doctors talked to the Mayo team and shared copies of records, I did not go back there until 2009 (actually 10 years ago this week - we were part of a Super Bowl party in the hotel lobby.).

I have always found the people at Mayo to be compassionate, consummate professionals, extremely knowledgeable and very service oriented. The entire town is built around caring for people who come in from far away and are in a very hard time in life. I would recommend that you pursue a second opinion with them and have your local doctors try to get Dr. Giuseppe Lanzino to look at your file.

Any other questions, let me know.

Thanks!

Tom