New...... from gen board

[cbe411]

Hello, I am new to the Boards. My son is 19 and he has a severe plexus injury.

We had several problems with care. The doctors new very little about the injury and how to manage the pain. They made us wait far too long befroe getting expert help. We were finally informed of Dr. Belzberg who has made a big difference in our lives. He did a nerve repair that is now showing activity and we are hopeful for at least some recovery. He also changed the pain medications and had us work with a pain pyschiatrist and now the pain is under control.

My question is now what? How do I cope with the fact that my son will never have a normal arm or hand. How will the girls relate to him? How will he be able to relate to other young males? Will he ever be able to get medical insurance on his own?
I would already be crazy if I did not have Dr. Belzbergs shoulder to cry on but I need help from those of you who have aready been through this.

Steph

[jennyb]

Hi Steph
Sorry to hear about your son.
You ask how you will cope with the fact that your son will never have a normal arm or hand, that's an interesting question because to be honest I never asked my parents how they coped with it and if it bothered them they never let it show for an instant. So I guess my advice would be not to let your son know how much it bothers you. I think it would have been far harder to come to terms with the huge emotional and physical upheaval losing my dominant arm was for me if I had thought my parents were suffering as much as I was. That sounds self centred and I guess it is, but at the time I was like a baby and very sorry for myself, my parents were relentlessly upbeat and realistic and not only they but everyone else in my life helped me adapt but never acted as though I was an object of pity. Everyone acted like the fact that I was alive at all was a major celebration. And it was! So although it took a while I was back to my old self very quickly and my own terrible fears about not being attractive to the opposite sex, looking like a cripple, never parenting etc were proved to be unfounded. I was 21 when I got injured, I'm 46 now and my life has had its share of ups and downs, but these are the same as the ups and downs any other person has. I am happily married and a parent of 3 sometimes lovely kids.

I'm not criticising you for worrying about your son, please don't think I am. I'm just saying how it was for me. I have realised since that my injury would have been devastating for my parents, they opened the front door to see a police officer standing there holding my broken crash helmet, they rushed to the hospital to see me being wheeled into a room with my eyes open but noone home, my arm at a weird angle and one pupil of my eyes a wildly different size than the other, full extent of injuries unknown. My mum said my skin was grey and I didn't recognise them, she thought I had brain damage. That would have been more dreadful than I can imagine, and I don't know how I would cope if something happened to one of my kids. All I know is I feel I have recovered despite not having a usable arm and wouldn't change any aspect of my life.

I can't help about the insurance, both countries I live in have universal healthcare. I hope you get some answers and maybe input from parents as to how they coped.
Keep us posted on your son's progress, I hope things get better for you all soon.
Jen NZ :0)

[Brandon_3]

Hey Steph,
Sorry to here about you situation! It is a terrible f$#%ing injury,and evil too.Definitely not fair or fun. Especially when you have trouble finding Doctors who even have a clue as to what this injury is. Then actuaaly finding someone who can do anything about it. Luckily you have found Dr. Belzberg, now what you'll have to find is patience, probably the hardest part is dealing with the pain. Me, I am 5 months Total RBPI. I have yet to have surgery but am scheduled to have it soon. What is your sons name and where do you guys live, would love to hear from you guys to see how your doing and if you have any questions maybe I can help. Take care.
Brandon

[babyryd]

Hi Steph,
I'm glad you found Dr. Belzberg. My son Chase (age 7, LTBPI), had surgery w/Dr. Belzberg in June and we chose to travel to be w/him not only for his expertise in BPIs, but also because of his compassion. He's an amazing person and very down to earth and personable. When was your son injured and when did he have surgery? My son was injured while on a dirtbike - I think because of his young age, he's doing better with this whole thing than I am. I worry about everything for him... some of the questions you voiced as well. I do think because he is so young, it will be easier for him to adapt, but I worry about his being accepted just the same. I'm glad you found UBPN, these folks have helped me through some very difficult times and with advise, encouragement, support and hope. Feel free to ask quetions, vent and even cry on our shoulders - we're all in this together
Take care,
Lourdes

[EllenB]

Hi Steph,

Just letting you know I sent you a note via email...I got 'way too longwinded to post it here!

Take care,

Ellen

[admin]

dear steph my name is ronnie and i have a severe bracial plexus injury from a car accident in 1988.my left arm is paralized.i was 27 at the time of my accident.the majority of my nerves were completly severed.i had nerve graft surgery 4 months after my accident.dr david kline,in new orleans,performed the surgery.at that time he was the only doctor in the united states whodid the surgery.In fact,just before i had the surgery a neorologist at the university of pa. told me that the only doctor who would do such a thing would be a witch doctor.so,i know exactly what you mean by finding doctors who are even aware of the injury.at the time of my injury i was living in philadelphia(my hometown)and luckily my family doctor referred me to an orthopedist who was very familiar with the injury.my nerve surgery was unsuccessful ,so my orthopedic surgeon had to perform a few operations on my arm.my shoulder had been out of the socket as a result of the injury and my muscles were not strong enough to hold it in there myself,so when the e.m.g."s were not showing any improvement i decided to have it fused in 1992.i only did this after it was quite certain my arm was never going to move again.my shoulder being out of the socket caused me severe pain.also,my wrist was palsic and i could not move my fingers.somy wrist was fused and i had tendon transfers which enabled me to move my fingers. i don't want to scare you with this info,i'msure my case was more severe than your sons,because i showed no improvement after nerve graft surgery.about nine months after it i began to get feeling back,but that was all that ever resulted from that .it is very good that they have been able to manage your sons pain.the pain i had in my arm and neck was my biggest obstacle,that was a 13 year battle.I was always in pain through the years and it just did"t seem like anyone really understood.the pain lessened some after my shoulder was fused,but then about four years later it started to get unbearable again.i was living in atlanta georgia then and i could not find a doctor to sympathize with my plight.they thought they were doing me a favor by giving me 15 percoset a month. i began to feel like a drug addict,always seeking pain relief.my pain governed my life.All my activities had to be planned around my pain. finally, in 2001 i saw my orthopedic surgeon in philadelphia and he told me all the muscles in my back(surrounding my left arm)had collapsed and that i should be on some type of time release ,long acting pain medicine.he refferred me to a pain clinic who put me on methadone for pain control. it has made all the difference in my life,my pain is now managable.At first i resisted it because all i knew about methadone was that it was used for heroine addicts,but after getting some information on it and trying it, i highly recommend it.however,at the pain clinic i once again was faced with doctors and nurses who had no idea about brachial plexus injuries.Eventually i just started to see a neurologist who prescribed the medicine for me. it has been my experience that at least neurologists know what a brachial plexus injury is, and understand the pain it causes. to answer your question abouy the effect om parents,i was an only child and my mother was devasted. i had trouble seeing her pain because i was so wrapped up in my own problems.but, i remember about a month after my car accidenti was upset and freaking out and she said to me "how do you think i feel,this has happened to my child"of course that made me freak out more.but if it wasn't for her i would have never gotten through it.she handled all the medical issues,insurance problems.she handled everything that first year,beacause i was uselrss.if it was up to me,i would have just left myself die .i was so depressed,and the only thing that got me through was hoping that i would move my arm again.i now believe you need that hope until you can come to terms with your loss.once i made the decision to live life using one arm ,my depression lifted,but that took about 3 years,and acceptance comes in small doses.i was extremly lucky to have my mother,grandfather and friends.they all went above and beyond to make my life better and worth living.my grandfather was 78 years old and he would drive me to all my appointments,physical therapy ect.. and wait there hours for me to finish.it sounds like your son has that support with you.just be patient with him and take any moodiness or meaness personally.its just so hard,and because hes young he probably doesn'tunderstand how it affects you.my mother died in 1995,at age 53,and not untili went through all the hospital and doctor things with her did i under stand what she went through.i now feel guilty that the last years of her life were spent dealing with my medical crises.i am married now,and i really did not experience any negative responses regarding my arm. i did not have aboyfriend at the time of my accident and i was scared about dating,but hoestly it really was not an issue with anyone i dated.i think once your comfortable with it,anyone worth anything doesn't really see it as a big deal. when i would voice my concerns about a guy wanting to date someone with a paralized arm my friends would tell me it was not a big deal,and it really wasn't. the insurance issue is always tricky,but if your son stays with the company that is covering him now it should not be a problem.if he is covered thruogh your insurance he shuold be ale to convert it into an individual policy with the same company and not have to worry about pre-existing conditions.the after time goes by his injury would not be an issue.even with the worst case scenario there is always a period where the medical visits die down for a while.most companies cover pre-existing conditions after 1 year of being insured.well, i hope i have been of some help to you please feel free to e-mail me.the toughest part for me in the beginning was not knowing anyone who had the injury.this message board would have helped me in the beginning.i searched and searched but could not find any relevant support group.

[admin]

Dear Steph
I have not posted on the boards for some time as like everything in life our family has been busy. A quick hello to everyone to let you know we are all well. I will post a message re Michael's progress a little later on.

Well Steph, I have been through what you are going through and my personal advice to you is "dont't panic" everything will work out fine for your son.

My son Michael had his accident 22 months ago now and he is doing well. Yes he also has a severe bpi injury to his right dominant arm. He and "us" have coped well. He is progressing every day and between us all have kept a positive attitude towards his outcome and what he can achieve for himself.

Michael had to review career choices and has gone back to "school". He is currently doing his Real Estate License and will continue next year to do a diploma course which will set him up within the industry. He is not working as yet, but eventually that will happen. Until them his mom has him working at home. Yes I am a hard task master, making him doing washing, cleaning etc, but this keeps him motivated and helps me out at the same time. It is quite amazing what he has learned to do with the use of one arm only. It astounds me at times.

As for the social aspects of things, Michael has not suffered in this area at all. His mates have stuck by him the whole time and as for people treating him different because of his arm, well people seem to have taken a curiosity attitude towards him and he has met some wonderful people because of it. I will admit he is a player and uses his arm as a "girl" magnet. The girls seem to show a remarkable amount of interest in him because of his injury and mark my words he knows how to use it.......ha ha.....

I know it is hard for you all Steph but believe me things will work out. This injury will only get you down if you let it get you down. Keep your chin up things will get better and I am sure your son will be okay.

Michael said to tell your son to email he anytime he would be happy to talk to him and answer any questions he might have.

Take care....regards Michael and Narelle

[admin]

I can’t thank all of you enough for the kind words and thoughts. It is very reassuring to know that I am not crazy and there are plenty of other mothers out there who have been having similar feelings
And to the children, you are all so brave! It is wonderful to see a positive attitude and some of the personal stories that have been sent have put a smile on all of our faces.

There have been some rather odd private emails sent to me. It is clear that there have been some people we have been less than happy with their doctors and wanted to know how we ended up with Dr. Belzberg. Simple, our doctor told us to go to him. Also, we did see a few others but simply liked him best. We talked with the Mayo but they did not have anything more to offer than Dr. Belzberg and said he would do just as good a job. I will say that Dr. Belzberg said the same nice things about the Mayo and encouraged us to get as many opinions as we wanted.
Some of the email that I have gotten has been a little crazy and I think they must have come from very religious people who have confused certain doctors with the Lord. Best to keep fanatics under control.

Thanks again to all of the wonderful people who have supported my son and me. We will give you updates as available.

Steph

[admin]

I can relate to your son's injury. I am a 23 year old male who had a complete avulsion of all 5 nerve roots in my left side. My arm does not work, and I am probably going to have it amputated soon.

I can give you reassurance that males and females will not look at your son differently based on my experiences. I am an officer in the Navy, so all the people I typically deal with are alpha-male type. I have had no problems making friends.

As for women, I have had no shortage of dates on Friday nights. The thing with girls is confidence, and so long as he has some, it will come through. Right now, I am dating this sweet little thing i met after my accident, so I know I still have something to offer. The worst thing that can happen is if your son has lost all confidence in himself, then he will have problems.

But that's true in everything after this injury. A lot of that gets better with time. A lot comes from the type of person you are before the accident.

More than anything, you cannot let this injury get you down. Sure it blows, but hey: I AM STILL ALIVE AFTER ALMOST DYING THREE TIMES IN THE HOSPITAL. What else is there to be happy that I have this second chance at life. I am so happy to still be here with my family and friends. I feel likeI am put here to do something now with my life. I don't know what yet, but if I can bring a little hope and joy to someone, then I served my purpose for this second chance.

As for careers, I just l;ost mine. I am being discharged from the Navy because of my actions and injury. I had it all planned out: I was in Nuclear Power School, going to be on a submarine driving it and running the nuclear reactor, serve my country, and get the chance to see the world. I know what its like to have your hopes and aspirations dashed.

But fortunately, I have a strong academic background BS in chemical engineering (NCSTATE Wolfpack baby!!!!). That's my best advice for career options. Make him get a good education. And especially now since he has a disability, there are more scholarship opportunities available. As some doors close, some will open. Make sure to get involved in helping out your son if he needs it. Do your research and form a plan of attack.

To wrap up, things suck at first. But once you realize that things aren't going to be normal, deal with it, and gain confidence in who you are as a person, things don't look so bad. I know I'm facing a challenge, but I've never met a challenge i couldn't overcome.

I hope things are going well for your son and yourself. if you or your son need any support, I'm more than happy to offer what I can. I'm sure I could talk to my mama, and she might be able to offer some support to you as well. It was really tough for her, and she was very shaken up by my wreck. She's still not over it, but I have her support in amputating my arm. Just remember, your son needs your support, don't ever show signs that you are dissappointed or upset at him for whatever caused the accident. It happened, you have him, and let him know how much you care.

If you want to contact me, MichaelNorby@gmail.com

Take care,

Mike

[admin]

I am a 23 year old male who just had all 5 roots avulsed from my left side. I can offer you any support needed since your son is close to my age. I'll post more later seeing as how its late.