2 Years Post-Surgery

[jennyb]

Pam, I think you could be right about a seperate 'place' for parents of tbpi, or their partners, we do have a seperate message board like this on the tbpi uk website message boards (URL in my post above) but we actually found family members were happy to post on the 'general help and support' board there, probably because they want input from the injured people posting there. Seperating message boards too much does mean posts are fewer and that maybe stops the 'flow' of posts/answers. The general board here can be daunting for someone who doesn't 'fit in', but as a parent of an injured person you might find the emotional support there helpful, even though the treatments etc are different for your son than for the babies. I have email friends among some of the parents who have helped me to understand how this injury impacts on the family. Before that I never gave the suffering of my poor parents a thought....

I'm glad you brought up the psychological side of this injury, it's not something I've seen mentioned on any medical site, and only briefly in books about bpi. Many tbpi do suffer from severe psychological after effects, often Post Traumatic Stress Disorder or other problems, and the ongoing pain can have an effect on a person's mental well being. This is very hard to cope with on top of the injury to/loss of the arm, especially when there is so much focus on function rather than just living with what you have (or haven't!) got. We are actively looking into this and when we have something concrete in place on the site I'll link it here.
It's good you are telling your son to guard his 'good' arm, but I'm not surprised he didn't listen, I wouldn't listen either! I was 21 at the time of my injury and just wasn't interested in hearing how I had to limit my life EVEN FURTHER....It took my first serious injury to the 'good' arm shoulder (more than 20 years post injury) and a couple of years of nagging from the REAL long termers before I would listen. On the other hand, that bull headed attitude is what helped me get through the trauma of losing my right arm, and it's what has made me who I am today. Even being careful of my good arm I still manage to do things most 2 handed 43 yr old women can't. It's how I stay sane :0) I have read that being forced to change to the non dominant hand as an adult can cause 'a confrontational attitude' so that's what I blame my temper on......it works for me!
It's great your sons have such caring parents, and it does make me realise parenting will never end......my youngest has just started kindergarten, I thought I was almost out of the parenting woods....obviously not!

[david wilson]

hey tmga and pamala
i'm really glad to have both of you mothers with us. good info is good info and i'll take all i can get.
dave wilson
sorry about the june 23ed reminder, it makes me a little weepy too if i dwell on it and its only been 4mo

[Nancy (Eric's Mom)]

Oh boy!

You just brought up my own biggest issue. It absolutely has killed my husband and me watching Eric's suffering over the past 2 years. The emotional suffering was nothing compared to the physical suffering that Eric has dealt with, and we have witnessed, since the injury.

Eric's surgery was successful, although the repair was only to fix biceps and deltoid. We are happy with that. The arm was completely flail. At this point it's been almost 2 and a half years since the accident and Eric has moved on. I doubt that he will pursue any additional surgeries unless there are huge strides in this field and he feels that it would bring more than moderate improvement. The surgery is pretty invasive and unless there would be dramatic improvement, we feel it's not worth it. Of course, it's up to him.

Life has gotten a lot better for all of us since Eric started working full time (same job as before the accident), gone back to school (part time) and moved out. When he lived with us, it was a constant reminder to him and to us how much his life had changed. Every time he was having bad pain, it hurt us bad to see him suffer. Of course we were there for him completely but it wasn't helping him because it was very easy for him to take it out on us (especially Mom) because that's what parents do. He wouldn't dare treat his roommate the way he treated us. The horrible thing is that he hated doing it to us but needed to vent and we understood that. So many tears in 2 years.

Our other issue (my husband and I) is that for a long time after the accident we were afraid that he was suicidal. We were afraid to leave him alone and there were times when I thought he'd jump out of my car on the highway because the physical pain was so bad. There was a period of depression that was scary but that was easier for him to accept than the chronic pain. I was always afraid to bring it up on the message board because I was afraid that it was something that those with BPI must have all thought about at one time or another and thought it too personal to share.

I know I'm rambling so I'll stop. I just want to add that this is one reason why Hazel's untimely death hit me so hard.

[admin]

It is really nice to know that other people have the same thoughts and are going through the same thing. Like you Nancy, sometimes I wonder if Tim is suicidal. He says things like he will not live like this if the surgery doesn't work. (Everyday) That only implies one thing to me. I don't know what else I can say to him to get him to realize that there is a lot still out there for him and he is not the only one. How did everyone else get through the depression and how long did it take.
Also to everyone who had surgeries in New Orleans, who are the Doctors and what hospitals are the surgeries done in.

[Brian - ATL]

I'm not sure about the C8/T1 to C7 idea you mentioned.

I have been to Dr. Peljovich here in Atlanta. He and his radiologists have reviewed my c-spine and BP MRI's and believe I have an avulsion of C8, based on the MRI's, my Horner's syndrome and my emg results. I have a visit scheduled with Dr. Kline on 1/27/03. He has requested that I have a myelogram done. I am hoping his review of my case will clear up the avulsed vs. bad stretch mystery.

I certainly understand why Eric chose to focus on his upper arm. I was wondering if the docs discussed any hope for potential recovery in the hand, or was that ruled out as not possible from the beginning?

Thanks for your help!

[mikeyb]

I'm in the same boat, C8-T1 roots avulsed. I had reconstructive surgery 4 years ago. Not much they can do about root avulsions except work around them to give you as much movement as possible.

All the tests are pretty inconclusive until they actually explore the bp surgically.

Mail me if you have any questions,

Mike

[Nancy (Eric's Mom)]

Hi Brian,

the lower arm was never even a consideration because the first and foremost issue is getting ANY return at all to the arm because if you don't have that, you have nothing.

Please know that things do get better. We were lucky that we had great success with our surgery and hope you experience the same.

[admin]

TO WHOM IT MAY CONCERN:
MY NAME IS STEWART IN 1993 I HAD A SEVERE AUTO ACCIDENT
NUMEROUS INJURIES FROM 2 COLLASPED LUNGS LOTS OF OTHERS
BUT NONE MORE DEVASTING THAN THE BRACHIAL PLEXUS INJURY
I RECEIVED.IT HAS BEEN 1O YEARS NOW SINCE I HAD AVULSION OF C-6,C-7,C-8 AND T-1.AT FIRST IN THE TOWN I LIVE IN THE DOCTORS HERE AT THE TIME NEVER EVEN SEEN A BRACHIAL PLEXUS INJURY.ABOUT A YEAR AFTER THE ACCIDENT
THE PAIN WAS EXCRUICIATING,IT WOULD START AT SHOULDER
THEN I WOULD FEEL IT IN HAND,TO MANY FEELINGS OF PAIN TO DESCRIBE.BUT IT MAINLY FOCUSED IN HAND AREA FOR ME.
I WOULD BANG MY HAND OFF WALLS SQUEEZE WHAT LIFE WAS LEFT IN IT OUT, HIT IT WITH THINGS ETC.ETC.
I WENT THRU SOME VERY DIFFICULT TIMES IF IT WASNT FOR THE SUPPORT OF MY WIFE AND SON GOD ONLY KNOWS WERE I WOULD BE NOW.BECAUSE I CONSIDERED SOME VERY BAD THOUGHTS AT THAT TIME.THEN MY WIFE COULDNT STAND SEEING ME LIKE THAT SO SHE BEGAN MAKING PHONE CALLS.
UNTIL ONE DAY SHE FOUND A DOCTOR WE WENT TO SEE HIM.
AS SOON AS WE WALKED INTO HIS OFFICE HE STATED WHAT ARE WE DOING HERE. WE SHOULD BE IN BALTIMORE MARYLAND AT JOHNS HOPKINS HOSPITAL.THERE IS A DOCTOR DOWN THERE WHO IS DOING CERTAIN THINGS WITH THE INJURY YOU HAVE THAT MAY BE ABLE TO HELP YOU.
THIS DOCTORS NAME WAS DR.ALLAN BELZBERG WE TALKED ON THE PHONE FOR ABOUT A WEEK THEY GOT ME AN APPOINTMENT WHEN I GOT THERE THEY EXPLAINED A PROCEDURE THAT WAS IN THE EXPERIMENTAL STAGES BACK THEN.THERE WERE QUITE ALOT OF RISK INVOLVED WITH THIS PROCEDURE CALLED THE
[DREZ PROCEDURE]SO I ENDED UP HAVING THIS DONE.
FOR ABOUT 2 DAYS AFTER SURGERY THE PAIN WAS VERY MINIMAL ABOUT THE 3RD DAY THE PAIN WAS BACK IN FULL
FORCE SO FOR ME THE PROCEDURE WAS A FAILURE BUT THAT
DOSENT MEAN IT WILL BE FOR EVERY INDIVIDUAL PERSON.
THIS DR.BELZBERG I WOULD PUT MY LIFE IN HIS HANDS ANY TIME THATS JUST THE WAY I FEEL ABOUT HIM.
NOW THIS INJURY HAS ALSO PARALYZED MY FRANTIC NERVE WHICH GIVES FUNCTION TO MY RIGHT DIAPHRAM AND RIGHT LUNG ALSO MY SWEAT GLAD NERVE HAS BEEN AFFECTED ALSO.
I HAVE BEEN TAKING OPIATES FOR RELIEF OF PAIN FOR 10 YEARS NOW THIS IS THE ONLY THING THAT HELPS ME BE ABLE TO LIVE SOME WHAT OF A NORMAL LIFE.FORTUNATLY I HAVE A DOCTOR THAT BELIEVES THAT YOU DO NOT LIVE WITH PAIN YOU DIE WITH PAIN.AFTER 10 YEARS THIS IS A VERY DEBILITATING INJURY THAT EFFECTS MY LIFE IN EVER WAY IMAGINABLE POSSIBLY THERES DAYS I DONT CARE HOW MUCH PAIN MEDS I TAKE ITS SO POWERFUL ITS ALMOST MAKES YOU NUTS
THINKING HOW CAN SOMETHING YOU HAVE NO FEELING IN CAN HURT THAT BAD.BUT I WILL CONTINUE TO LIVE MY LIFE TO THE FULLEST REGARDLESS OF MY PAIN BECAUSE I HAVE ADJUSTED WELL TO HAVING ONLY ONE ARM.I MUST SAY I HAVE THE MOST BEAUTIFUL WIFE AND SON WHO GIVE ME EVERYTHING TO LIVE FOR
SORRY THIS IS SO LONG OF A POST BUT IF ANYONE NEEDS SOMEONE TO TALK TO JUST DROP ME AN E-MAIL

[david wilson]

hey stewart
just read your post and my heart goes out to you. wanted to say that dr belzberg is alive and well at johns hopkins and still doing bpi surgery and research. he told me that the drez surgery is fairly common now. is there any trying it again? he is also researching ways to keep the musles in the hand receptive to reinervation in the 2 yr regeneration time frame that bpi can represent.

you must have seen br b early in his career, you may want to talk to him again aboutthe pain.410 955 5810 talk to stephanie, she is a sweetie.
hang in there stewart they are working all the time on new ways to help. sometimes it works. red

[Paul]

Stewart thank for the good post its a good letter. I'm supprized they did not delet it. When you talk about doctors they rub your posting out which sucks. I found Stephanienie at DR.ALLAN BELZBERG very nasty and doctor Belzberg not a nice man. I never got to see him. I would have paid cash on top of my insurace when i read his curdentulls. But when you post accedent 1 or 2 years some doctors don't want to see you, it brings down thair sucses rate if they work on you. Good luck Stewart hang in there, keep posting. Paul