Drs ruined my liffe now they wont acknowledge my existance!

General
1

For total lack of anything better to say about this, its not fair.

My all 2 long story hasnt ended yet.

I'll start at the beginning which was 6 years ago. I was only 20 years old and got diagnosed while I was 32 weeks pregnant with my only child. I HAD to have her by c-section 8 weeks early. Then I was told my AVM was pushing against my brain stem and that I HAD to have surgery and couldnt afford to wait.

So 6 months to the day later I gave my baby a kiss, cried for the 1st and last time since I was 12, and left for Dallas to have surgery. I had 4 embos and surgery in 10 days. I did not have any type of radiation surgery because they said I couldnt. I had to have actual cut-you-open surgery.

But there was no precident for some1 my age. Most people diagnosed with cerebral AVM were 40 or more. So I took 1 for the team. Figuratively speaking.

Since my Dr. didnt know what he was doing it took him almost twice as long. First we were told it would take around 8 hours, but he took around 15. Because of it I had a stroke. He also messed up somehow and I went deaf.

I was told that worst-case I would never swallow again. Instead I couldnt hear, walk, mone my arm, feel my right side, or swallow. I was in that hospital for 3 months. I turned 21 and got married there.

Then I came back home and went to a nursing home for 8 more months.

While there I got barely any therapy, and no sign language classes. Since I am disabled, my ex-husbands parents were awarded custody of my daughter. While in the home I missed her 1st words, and 1st steps. Now I never even see her.

Since surgery I have had barely any physical therapy I havent done myself, barely any sign language I havent taught myself. I was told too late that I have to have the shunt in my head changed every 4 years, and I almost died. I had to spend another month in the hospital.

So, for now, I am unable to walk, swallow, hear, use my arm right, or feel my right side. I've had 2 more surgeries, 3 permanant iv's, and way too many antibiotics. I lost custody of my child, got divorced, and now live in a far-too-little trailer with my parents. Now I am told that in pre-surgery I started menopause. At 20! So never can I have another child.

But I will live.

Physically I get better everyday because I say I'LL BE FINE. This wont stop me.

I guess the hardest part was finding out I didn't even need surgery. Now when we call and ask to talk to my Dr. they say they have never heard of him. I can't work and my parents have helped me so much that now they can't work either.

So we have no money coming in. I was only 20. How much is 1 teenager suppsed to work in 4 years?

I feel like the Drs. got paid to ruin my life. I can do my own therapy. But it doesn't work if I'm always depressed. THIS IS NOT FAIR!!!

2

Welcome Chrystal,



I had to think about how to respond to your story–it took me awhile, but here goes.



I feel badly for you for all that you have had to go through. I don’t think any of us feel it is fair that we ended up with an AVM and had to go through hell trying to fix it. So most of us can relate to your unfairness label.



Yours is one of the (hopefully few) stories that are posted here that don’t turn out well at all. I think almost none of us come out with zero deficits, you seem to have received more than your share (grin).



While I think it is true that most AVMs show up in we “old” people above age 40, there are quite a few posters here who have young children (10 and less) with known AVMs who are having them treated in multiple ways.



It sounds to me like you are trying to improve your situation alone, and I understand that due to $$$ concerns, but I would encourage you to seek some counseling for your depression. I have depression, have had it for a long time, and know what a toll it takes on my health. So if you can find someone who can help you work through depression, I would encourage you to do so.



Please continue to post here and let us know how you are doing. A lot of fine folks here care for one another. We can understand how you vent about the Drs, but all the ones we’ve dealt with have gone out of their way try to help us. While not totally related, our neighbor just had “female surgery” which took longer than expected. She had a bleeder in ICU, so the doctor (who my wife went to high school with) had to go back in. She lost 9 units of blood! When he was done with round two, he came out to talk with the husband and daughter. The daughter told us that HE, the doctor, was CRYING when he told them! I know it was that he had compassion for his patient.



I do wish you well in your journey.



Ron, KS

3

Chrystal - it sounds like you’ve had a very hard road, with quite a domino affect resulting from your AVM.

I agree with Ron, KS that counseling could possibly be a good thing to help you deal with your depression and all the losses, setbacks, deficits, etc., you’re having to deal with. You might try someplace like United Way. And maybe if you can hook up with a social worker, between them and a councilor, maybe you can get information and contacts that can help you out in other ways too, like maybe advocating between you and your Drs., etc.

I’m sorry you’ve had to go through so much, and at such a young age.

Hang in there, and let us know how you’re doing.

Tori

4

You had a tough one here.

The way this AVM has hit me has been tough. Depression, ADHD, loss of mental and physical abilities. It’s not easy. So, sometimes I have problems keeping control. And I feel I’ve done better recovery than many on this website. Still, I keep working on it. By the way, my last surgery was 21 years ago.

I was 26 when I had my first seizure, 28 for the second, and surgeries at 29. There are even kids on this website that have had the surgery before 10.

There is a lot of information on this website from others who have AVM. Keep talking and do a lot of reading. It has helped me get ideas on things to do like get counseling. Now, it took me 20 years after the operation to get counseling and I had to go through 5 people to get one who works good with me. I think this AVM makes all of us stubborn and proud of it.

So, while I agree with the others on recommendation to get counseling, I think you should keep your positive attitude. The story is not over, it is in a tough section. Things are going differently and you’ll have to push hard.

Keep going with your “I’ll be fine”.

5

I will not say that I know how you feel because I’m not sure if I do but I can tell that your a person with a very strong will. I hope you will get better and try to think positive because even in the darkest of night, there will always be light.

6

I am so very sorry for you. I hope this doesn’t sound insensitive but this is a clear example of how important it is to research your doctor and verify his/her competency and specific experience with AVMs. I think we need to have something pinned to the top about this very subject because I’m hearing many stories about doctors who are making quick judgments with little or no experience with AVMs.
As many have pointed out, there isn’t a magic age for AVM diagnosis. I was 13, my youngest was 5 and her sister was 7 when our AVMs were discovered. Actually, many women are diagnosed during pregnancy.
I feel very badly for you. This life isn’t easy. Prayer, faith that it will get better. Hope that things will turn around. You have to hold on to all of these things. One thing you do have in your favor is that you are young and the body has an amazing ability to heal itself.
If you feel the doctor was really the cause of unnecessary damage then try contacting the hospital to get info on him. Also, there are lawyers who will work on contingency. It may be better for you to focus on yourself and your healing but I don’t discount the power of righteous anger and the energy that is created by it. Perhaps getting some justice will help you in your recovery and mental state.
I’ll pray for you.
{{{hugs}}}}
Christine

7

Chrystal,

This is a perfect place to vent, because most of us here have gone through some of the same emotions. First thing I might suggest is that you get in touch with a local (competent) brain injury rehab facility. They have social workers who know their way around the system and can get you on the right track. Some therapy (physical, occupational and speech) would do wonders and allow you to take charge of some part of your life.

I can tell you that there are plenty of 20-year-olds who have had AVMs. This discussion board is full of people who have had them at all ages. My daughter’s first one came at age 6, then regrew and required a second craniotomy at age 8. I know people who have had them at 14, too.

I believe the connection between pregnancy and AVM is pretty well-documented. It sounds like you feel as though your life fell apart because of your AVM. I can tell you that not a day goes by that I don’t wish I could back up 2 years before my daughter’s first AVM and have her back (and our old lives back). But it’s not healthy. We have to move forward. I was talking to a friend about all this the other day. We both agreed that sometimes, we have to take things in very small chunks – maybe a day at a time, maybe even an hour at a time.

You’re right – it’s not fair, for any of the AVM survivors.

Try googling the “Brain Injury Association” and see if you have a local support group. There is one here, but it’s primarily adults and really doesn’t help me very much. But it would help you to know that others share your feelings. That’s a very reassuring thing.

My daughter receives occupational therapy three times a week, physical therapy once a week, speech therapy once a week, psychologist once a week, neurotherapy once a week. Getting you involved in some therapy and finding a way to get your life moving forward would be a great start.

Hang in there. Best wishes,
Tina

8

Dear Chrystal,
Where to begin? It is great to read the part where you will not give up. I was not 20 (an old 46) when I lost it all due to a doctor who thought he was God and really didn’t know what he was doing. Please keep in mind that you have to keep thinking positive because it gives your body more energy to heal. Read the funnies, watch comedy movies…keep pushing. You are young and have more power than folks in their 40s…show your child that his mom is not a quitter and he/she comes from a strong fighter! You’re right, it’s not fair what happened. Remember that you are not alone and you are strong! Keep smiling! :slight_smile:
Gisele

9

VENT.

I think I can cover that.



I’ve spent the last 6 years in total freaking acceptance of everything that’s happened, and I won’t do that anymore tomorrow than I did today.

How am I suppose to be expected to live the rest of my life on $490 a month,and be able to take care of my parents too?

How is it right that I missed ALL of my little girls most sacred 1sts, and now I have to miss the rest of her life as well?

I can’t, no, I WON’T just accept surgery for the restof my life, Dr. appointments, evrything I have missed, and everything I will miss, knowing that it’s all someone else fault.

Especially this time of year. Christms used o be a very happy time.

Now I dread it more every year.

My mom should not have to choose between paying part o a bill, or buying gifts for grandchildren. I shouldn’t have to choose between back-rent, or buying a gift for my child. And my dad shouldn’t have to see us cry.

I wish I could support myself with the supprt of others, but I can’t.

I am unable to work also. I need surgery to shut my jaw to swallow. But it’s consiered cosmetic, and I CAN NOT afford it.

And I’m not looking for pity. If I give up here it’s on me. But I DON’T WANT TO.

I’ll fight this becaus I have no choice. I WLLget better because I HAVE TO. And I won’t lose because that is not an option.



But do feel very useless and like I’m not ven human now.

I’m tired of crying, but it won’t stop. I’m sinking and need help, but I find none.

I’lm scared.

10

Chrystal,
I was 22 when I had my first grand mal seizure, and was 24 when my AVM was diagnoised. My treatment was “wait and see – we don’t have the technology to fix it” so I did – suffering from horrible headaches and other life interfering effects for decades – until my ancient AVM finally ruptured some 35 years later. I lost half of my vision and ability to read easily, some hearing, developed dyslexia, and have other unhappy shortcomings due to the 5-inch blood clot that the rupture created. The good news is that over the years, in pushing myself hard, I have been told that I am better than I was 2 years ago. It gives me hope that recovery from traumatic brain injuries is slow but possible. You are likely experiencing the same. I don’t know what the complexity/situation was with your AVM, no doubt much worse than mine. It would have been better if you had been able to get a second and third opinion of your treatment before surgery and had a chance to weigh the options and likely outcomes. Sometimes that won’t matter – the risky nature of AVMs cannot be mitigated and we make decisions and hope its the right one. You really sound like you are suffering from a PTS syndrom due to the outcome (it needs treatment – it does not go away). In a way, with my AVM rupture, it settled my decisions about how to treat my AVM – I had always feared and dreaded making a decision to have my AVM treated – so the rupture overroad that decision and I went through the embolism and surgery – however it is actually better to do this before they rupture! I urge you to seek some counseling to relieve your trauma from this, your grief over the loss of parenting your little girl, and hang onto your hope of a better future. I will keep you in my thoughts and prayers!

11


Chrystal Pena said:
VENT.
I think I can cover that.

I've spent the last 6 years in total freaking acceptance of everything that's happened, and I won't do that anymore tomorrow than I did today.
How am I suppose to be expected to live the rest of my life on $490 a month,and be able to take care of my parents too?
How is it right that I missed ALL of my little girls most sacred 1sts, and now I have to miss the rest of her life as well?
I can't, no, I WON'T just accept surgery for the restof my life, Dr. appointments, evrything I have missed, and everything I will miss, knowing that it's all someone else fault.
Especially this time of year. Christms used o be a very happy time.
Now I dread it more every year.
My mom should not have to choose between paying part o a bill, or buying gifts for grandchildren. I shouldn't have to choose between back-rent, or buying a gift for my child. And my dad shouldn't have to see us cry.
I wish I could support myself with the supprt of others, but I can't.
I am unable to work also. I need surgery to shut my jaw to swallow. But it's consiered cosmetic, and I CAN NOT afford it.
And I'm not looking for pity. If I give up here it's on me. But I DON'T WANT TO.
I'll fight this becaus I have no choice. I WLLget better because I HAVE TO. And I won't lose because that is not an option.

But do feel very useless and like I'm not ven human now.
I'm tired of crying, but it won't stop. I'm sinking and need help, but I find none.
I'lm scared.

Chrystal, have you spoken with anyone at an organization such as United Way? It sounds like you could really use someone to talk to, and who would also be able to help hook you up with some services of various kinds that could help out you and your folks.

I can see why you would be stressed out, and even though our situations are different, there’s a lot of what you’re going through that I totally understand. My husband was laid off last year, and we only have my disability income. It’s bad enough having a physical, medical condition that causes all kinds of stress and other situations, but not having enough money is also very stressful.

You have an awful lot on your plate and you obviously can use some help. I urge you to contact someone who can set you up with, first of all, someone to talk with on a regular basis, who can help you sort through your feelings and help you cope with all the stress, and even figure out what you can do to turn things around. And again, many of these people have lists of resources and can put you in touch with other people and organizations/agencies that can offer help and resources.

You don’t need to exacerbate your physical and emotional problems and stresses by continuing to try to manage all this on your own. Ask for help!

If I think of any organizations or agencies that could be useful I’ll let you know. In the meantime, keep talking to us here (and even if you talk to a professional), and try to hang in there.

Let me know if you need someone to talk to, someone to listen, and if there is anything I can do to help.

Tori

12

Hi chrystal , you might try ss disablity. It is hard to find a good Dr.Its been about 10 tears since I had X knife a few mos. later I started to have memorey problems and continues today.

13

I'm going 2 vent again.

I'm going to hurl feces like a howler monkey and as for who catches it, well don't confuse me with someone who gives a damn.

As far as I care right now, it can be the queen freakin' mother.

I took everyones advice, and I asked for help. I cannot begin to tell you the kind of pride I had to put aside to do that. But I asked. I trusted that there are still some people who care. That this country has good left in it.

That was my first mistake. And all of the good guys keep getting sent to war.

United Way.

I contacted United freaking Way. their response was the exact same damn 1 I've gotten from everyone:

NADA. ZERO NOTHING. SHIT.

How do I teach my child that kindness exists, and people care when I know they don't.

I contacted the hospital in Dallas, some local organizations, The Drs tv show (to ask a question), Oprah, the governor of Tx.-Rock Perry, the 1st lady and even the freaking President. I even applied for Extreme Makeover to help my parents out some.

NOTHING. No response at all.

So no more about how I don't need to try to do it all myself. Apparently, that's all i can do

GOD F@#$ING BLESS AMERICA!!

14

Well Chrystal, I guess I have not much more to offer, and again, I'm sorry that this is going so badly for you.

I will share one incident that I am not proud of (now), but it seemed like a good idea at the time. My son has epilepsy, and several years ago, while he was in college, I tried to set up an appointment for him to see an epilepsy specialist over his Christmas break from college.

I had his appointment set up, from an un-referred call by me to this specialty clinic. The guy I spoke with in Nov said it would be ok, and just to come in for the appointment, bring his records, etc, etc.

Well, I called back just prior to Christmas to confirm the appointment. I was told by a different person that NO, he had to be referred by a Doctor, and there were no appointments listed for him, and their schedule was full and he could NOT be seen over his break.

Well, I was livid, and spoke to 2 or 3 people up the chain trying to get it overturned. I used many of the terms that you have been posting. I was getting no where. The final person told me that if I continued to talk to him like that, he was going to hang up, that he nor his people had to listen to people talking that way. I calmed down a little, but still didn't get in to see them.

I share this with you just as something to think about how you are approaching people. Even if you aren't using those words, if your tone with them is shining through, I suggest that fewer will want to help you.

Feel free to tell me to go **** myself if it make you feel better. Life is definitely not fair, and many times, you have to step back and decide that this is how things might be for awhile, then see how you can make the best of what life deals you. It won't be easy or fun, but it sounds to me that it might be an option for you at this point.

I would encourage you not to give up, but to keep trying. I do hope this helps.

Ron, KS

GOD F@#$ING BLESS AMERICA!!

15

Hi Chrystal,

First, welcome. Second, I have come through hell and back in recovery, and I think that being stubborn is a big part of resiliency. I had a much easier road than you in many ways, since my recovery team was incredible. But working every day is a part of AVM recovery for many of us, and it can be a hard, long slog with lots of hurdles and surprises. I personally just want to relate that for me, I think it's better to be angry and fight hard than to concede and give up. I sense that in your post,and while I do think that controlling the anger to be productive is important, I think your resiliency is going to serve you amazingly well.

But also, great stress creates great anger, and it sounds trite but meditation and being grateful helped me to convert that into a great motivating force while also being positive. I am known for being stubborn and in many ways,it's the best attribute in a daunting task. The words 'give up' will never be in my vocabulary or thoughts as well. I'm glad is is not an option for you as well.

AVM's are very unfair. You didn't choose it, you did nothing to cause it. But, I like to say, 'it is what it is'. Being sad is fine, but being depressed is very common and very treatable. It's important to find a good therapist and you will get better. It will take time, and keep fighting and working hard. I hope this site brings you hope and support.

God bless, Sharyn