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-   -   AVM of Rt. hip,thigh pelvic & back (http://birthmark.org/board/showthread.php?t=1245)

maryditz 02-26-2005 04:12 AM

AVM of Rt. hip,thigh pelvic & back
 
Hi all. Im a "newbie" and very happy and relieved to find others that are going thru the same as I am, allthough I am very sorry you are all suffering as well. I was diagnosed at 20 with an extensive avm. I was told i had 6 months to a yr. to live because my heart was overworked. Of course I was devastated to say the least but the worst part was that I had just given birth to beautiful boy & was in no way ready to leave him yet! Well the good news is.. I'm stubborn, I turn 40 this year. So dont give up hope!!! I have had over 40 embolizations, high output heart failure, "mini" strokes, unbearable pain, seisures, miscarriage,divorce, seen countless dr's and tests, and more. Mostly alot of deppression. But I am lucky to be here and I was able to have a beautiful baby girl and remarried and have 3 gorgeous step sons. I'm determined too get thru this and when I am ready to give up, which is often, all I do is start thinking of my family and find strength to go on to be the best mom and wife I can be for them, my goal is to see each of them graduate and become independent and all this hard work would be for a great reason. Ive read some of the posts and the most important thing I can tell you is get INFORMED ask any and all questions you have, if you dont agree with the dr. dont give up, keep looking and researching dont settle for less. I have made to many uninformed decisions and I am paying for them now. I was told if I didnt have my rt hip and leg removed within a couple months that I would die, and that same day a diff. dr. said if I had that surgery I would die on the table because it was to extensive and there was no way to control the blood flow and I would bleed to death. Needless to say I still have my hip etc. I finally found a dr. at John Hopkins who took a chance on me and saved my life and is still continues to keep me going. Most avms never go away they just keep growing but you can control them.If I can help anyone please let me know. I have also been thru pain management clinics and that is another place you need to be Informed about because sometimes "quick fixes" arent always the best way to go. God bless you all and the best of luck.

eprmo 02-26-2005 09:00 PM

Re: AVM of Rt. hip,thigh pelvic & back
 
what a wonderful strong woman you are.. I applaud you,,,Would you like to share the name of the doctor at Hopkins that is helping you. The more names we have with great reccomendations,,,the BETTER!!!!!!!!

Elissa


maryditz 02-26-2005 09:29 PM

Re: AVM of Rt. hip,thigh pelvic & back
 
Unfortunately my doctor no longer practices at john Hopkins, but he has moved to Adventura Hospital in Florida and his name is Flyod Osterman and he is a magnificant doctor! Very caring and concerned and if he doesnt have an answer for your question he will find someone who does. I owe him my life and hope that he can help others, he doesnt give up very easily.Thank you for your support it helps give me strength!

eprmo 02-27-2005 02:33 AM

Re: AVM of Rt. hip,thigh pelvic & back
 
Thank you,,

I'll keep that him in mind...

Elissa

drobles 02-27-2005 06:47 AM

Re: AVM of Rt. hip,thigh pelvic & back
 
Hi--my name is Debbie and I have an AVM rt thigh that is very extensive as well.* I have been told that my heart is being overworked because the tumor is so big. I too was told to have my leg amputed and seen many doctors.* No doctor would touch it through surgery due to the fact that I too would bleed out.* *I am having my first embolization on Friday, Mar 3.* I am scared to death.* I am in soo much pain and going through the pain management clinic.* It was really good to read your article and get some comfort that there is someone out there that understands what I am going through.*

maryditz 02-27-2005 10:03 PM

Re: AVM of Rt. hip,thigh pelvic & back
 
I'm sorry that you have this disorder. Dont give up! Embolization is the first step to getting this "thing" under control. The procedure sounds alot scarier then what it is. I may be saying that only because I've been thru so many, i know I was afraid the first time too. I think it may help you too know that you are getting control of the AVM now instead of it controling you, always keep that in mind because the disorder does make you feel out of control of your own life sometimes so it is important to get your mind set that you can beat this no matter what it does and you wont allow it to take over your life. I know it sounds easier to say then do and sometimes it is, but as long as you keep strong emotionaly you will get thru this so much better. I believe the stronger you are emotionally the better you will feel physically. It is an ongoing battle of control but I believe you can do it and as soon as you believe it you will be so much stronger. Feel free to email me at anytime and i will be happy to help you thru this if I can. You arent as alone as you may feel you are. I'm glad you are getting pain management but please beware of the "quick fixes" because they do have lasting effects on your body if your on them to long. Please get informed of all side effects especially the long term effects. Keep in mind that there may be many embolizations in your future but you are gaining control with each procedure and you will conquer this! Believe in yourself!!!! Please let me know how your doing.

pennyroyal 03-04-2005 04:36 AM

Re: AVM of Rt. hip,thigh pelvic & back
 
Dear Mary,

When reading your post I felt as though I had written it myself. I suffer with depression that I try to keep to myself, as I have a beautiful little boy myself to keep fighting for. He breaks my heart, as he worries so much about me and is so afraid. I try to stay strong for him, but it is so hard. My pain is unbearable too, and I just began seeing a pain management specialist. He has prescribed a myriad of heavy narcotics and nerve medication, and they do work, but I feel as though I am a coward or some sort of drug addict. I am treated by Dr. Yakes in CO, and his staff tell me that I should not be in this much pain, and I feel as though they don't believe me. It is such a lonely feeling, and I am so embarrassed too. As you know, the AVM causes such deformaty, and most of the time I just feel like a science experiment. Your posting has given me courage, and thank you for writing in. I am fairly new to this site as well. If you wouldn't mind, could you tell me of your experience in pain management/depression and offer me some advice. I feel like giving up a little more each day. Thank you so much.

Deb

maryditz 03-07-2005 03:05 AM

Re: AVM of Rt. hip,thigh pelvic & back
 
Hi Debbie. I was glad to hear from you.It sounds like we do have a lot in common.Before I get into my pain management experience I'd like to tell you that not everyone has this experience, I've talked to a lot of patients in the clinic and found out there is a lot of problems involved with pain management. As I have said before it is very important to get any and all information about your treatment. I was in treatment for 15 years and ended up physically and emotionally addicted to the narcotic pain relievers. I was on the highest doses of meds that I could be without overdosing. I have been on all narcotics and I mean everyone of them. I, unfortunately never got informed, I just trusted in the doctors that they knew what was best and they would do only what was needed to help me cope with the pain. I was highly over medicated, I missed a lot of my life because I was constantly in a haze. The side effects were terrible, and I ended up at the doctors mercy. About three years ago, I was having surgery and the nurse was giving me demerol and ended up giving me too much and I had a grand maul seisure and almost died. It took me awhile to get back on my feet and when I did I started asking my pain dr more and more questions about alternative treatments and lowering my meds. They didn't agree with me and I talked to other drs but they wouldnt treat me as I was already being seen by the pain dr. So in a sense I was stuck there and I gave up hope. My divorce went through at that time and i was only receiving medicaid and the pain dr said they didn't except medicaid even though I have been a patient of theirs for 15 years. They said they would refer me to a new dr and I waited and waited for my refferal but it never came and eventually my narcotics ran out and the pain dr. would not refill them, so they told me I needed to find a dr quick because I could die from withdrawls because of such a high dose I was taking. I called around to many drs and they wouldn't have anything to do with me because I was taking so much medicine and they told me to go to the emergency room. Well, I was scared to death, I couldnt imagine dying because I was off my pain meds after all I had already struggled with to get through. I got more and more depressed with each dr telling me they couldnt help me. Finally I just got angry, thats when things started to get better for me. The withdrawls were ungodly and no dr would touch me, they wanted me to go to rehab, I kept insisting I didnt need to go to rehab, i was on the meds for medical reasons and didnt understand what all the trouble was to find a dr to treat me. Many drs told me I was on too much pain meds but never would help me to reduce them, they were always quick to tell me to get off them and quick to say they couldnt help and to ask the very dr. I was seeing to take some meds away, which he wouldnt do. So I went cold turkey from my pain meds, which I dont recommend because it is not safe, Ive been off all narcotics except xanax for 15 months now and going strong. The pain comes and goes and it takes a lot of will power to get through but I am so much better off without the meds. I am able to make better descions now and spend quality time with my husband and children. My husband calls the pain clinic a legalized crack house. You litterally could see a line of patients waiting to pick up their narcotic scripts, it is a reality check when you find yourself standing in line with the other patients waiting for sometimes two hours for the dr. to give you a script for your meds. We were all addicted, unable to admit it, complaining to each other that we werent ever going to come stand in line again and wait two hours for a stupid little script, knowing deep inside that we would all be there next month for the meds because the withdrawls were worse then taking the actual meds and having to wait for them so long was never an actual issue because we all feared the withdrawls. I would have never "popped a pill" as a quick fix for the pain had I known what I would be going through 15 years later. I'm sorry it took me so long to write back to you, I was trying to find a way to tell you of my own exp. without scaring you because you may have better luck in the pain clinic then what I did. The deciding factor was when my husband told me that my story may be scary but its the truth and i may be able to prevent someone else from going through the same nightmares as I did. That motivated me more then anything, this is a nightmare all the way around and a never ending battle, and if anything is going to help you it is knowledge and the power and control you have in your mind. You are not alone, and you have a beautiful little boy who needs you and you use that to empower yourself. I hope this has helped you in some way. Good luck and I wish you well. I'm still here if you need me.

tami403 06-21-2007 07:36 PM

Hi. I am a 40 year old woman who has a AVM behind the left knee and one behind the hip. The one behind the knee is very extensive and is high flow. It was diagnosed 11 years ago - I have probably had embolization done 12-15 times or possible more, I've lost count already, and used a sclerosing agent twice. The last time did not go well. I ended up will tissue damage, which became dry gangarene which ended up with a psuedomonas infection - nice scar also. I got so sick, I have never be the same. Nothing seems to last long. I am from Canada and through all of this thedoctors and nurses didn't seem to recognize the pain that goes with it. I remember after my first embolization at the hospital laying in the bed almost screaming in pain, and they seemed to think that tylenol should cut it. At the moment I am waiting for a MRI on my knee. It has gotten so bad it barely holds my weight. I have never spoken to anyone who actually understands the pain and dealing with having the leg problems that go with it - veins, ulcers, longer legs, etc. I am currently fighting for disability as I can't work since the gangarene incident and was informed that the AVM could not be causing me any pain. The only reason I would have any pain was "mechanical pain caused by the left leg being longer which could be fixed by phyical therapy". What dipsticks, do they even know what an AVM is? I just found this site today, and almost cried when I read your post because someone knew what I was going through. I am sorry that any should feel this kind of pain.

Csterges 09-21-2010 05:50 PM

Hi I'm Chris - 16 years old
 
I've been diagnosed with this condition about 2 years ago.I
Live in Australia and was diagnoses with the help of the doctors
At royal childrens hospital - Victoria. My Avm is located at my left thigh
But I've relized lately new pains emerging under both my knees
And lower legs. I'm now seeing my surgeon in 2 days. After doing
research on the Internet I have now become even more depressed.
What my surgeon is telling is about 25% of what I'm reading on the
internet. I have now put up with pain embarrassment of my condition
For around 11 years. My first proplems were in primary school were
I got bullied emenceley. Before I was due for my operation I told the kids to stop kicking my leg, otherwise I will make you pay for medical cost. I also remember this kid saying " there is no way and get over it" - not the exact qoute. After my operation at around the age Of 7 my leg did improve. After a few years the real pain came out of it's shell. This pain I experienced was the wort pain I've experiend in my whole life. This was because the doctor thought I had varicose veins in my leg. After another 2 years I got an actual dianosis at the age of 14 . I got treated with the alcohol stuff - I forgot what the treatment is called. After 3 treatments I felt good but now pain is emerging again. I'm afraid that I'm going to put on weight again but most of all will this ever end. After all I've been putting up with pain for as long a I can remember. OMight be asking the wrong question to the wrong person but what is the point of continuing on?


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