Is it o.k. to not have surgery ever?

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Is it o.k. to not have surgery ever?

Post by veggiebug »

I hear so many people talking about getting surgery but I don't think I would want surgery.
Are there others who opt not to have surgery ever?
I just feel like I'm the only one not pursuing surgery.

Just curious,
-Traci
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Is it o.k. to not have surgery ever?

Post by admin »

If you feel that there is nothing you need to change, then why do it? Don't follow the crowd, just follow your own heart.
njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: Is it o.k. to not have surgery ever?

Post by njbirk »

Traci,

I think you will actually find that most adults posting here have NOT had surgery. Whether to have surgery or not is a personal decision for an adult. While I have had surgery myself, I know it is not the solution for everyone, it was simply MY solution and what was best for me.

As well, this injury manifests itself in so many different ways because the extent of injury varies. Surgery may not be indicated for everyone.

I hope you feel comfortable here no matter what your choices or decisions. We all are learning from each other.

I think what is most important is that we have choices. For so long, we had no or little choice of whether to have surgery or not.

Nancy
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Is it o.k. to not have surgery ever?

Post by Kath »

Traci

I have never had surgery and while I think surgery will help some I don't think that surgery will help me to gain anything.

You don't have to have surgery it is a matter of choice or options that some have to gain more movement.
This injury is like a fingerprint each person while having the same injury has a different range of motion. I learned that when I met Nancy and Judy... while our injuries were similar we had much different motion...
I really think it is up to each person to make that choice... It is a big step
Kath
Kath robpi/adult

Kathleen Mallozzi
jep98056
Posts: 322
Joined: Sun Apr 14, 2002 10:25 pm

Re: Is it o.k. to not have surgery ever?

Post by jep98056 »

Traci:
Nancy and Kath are right - surgery is a very personal decision that is dependent on individual circumstances. One must weigh the benefits in terms of removing limitations of movement and strength versus the costs in terms of money, effort, and time spent in recovery. I had surgery when I was 13 but in 1952 BPI surgery was not very well perfected. I was told at Camp last summer that surgery could help me but was also asked the question "Are you satisfied with what you have?" Another BPI specialist has told me that although he loves to do surgeries, he wouldn't recommend it for me because of the life time of adjustments that I've made and, in his judgment, I've obviously done very well.

It's true that these forums may seem to highlight those having surgeries but I think that there are plenty of examples of BPI victims leading successful and rewarding lives without having surgery. However, I think that, especially for a young adult, the idea of surgery that could improve one's mobility and strength, mitigate the potential for overuse of the unaffected arm, and deal with self image issues need to be carefully considered. Speaking to qualified BPI medical experts would help answer questions of possible improvements and determine the costs. Should you decide to investigate surgery, obtain second and even third opinions because while some surgeons may be enthusiastic about their procedures others can be more cautious for very good reasons. Also, have someone that you trust with you to help you understand and remember the specifics of the discussion. Listen to the advice of family and friends including those who have had surgeries in these forums. Take the time to make an informed decision because as a potentially life changing decision, it is vitally important that you do so.

John P.
User avatar
patpxc
Posts: 315
Joined: Sat Nov 03, 2001 1:06 am
Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis
Location: Ohio

Re: Is it o.k. to not have surgery ever?

Post by patpxc »

I met Dr. Nath about 3 years ago and he did not recommend surgery for me--although he did say he could improve my function. 10--20 %. I didn't feel that was worth the risk. If he would have told me 50%-- I would have gone ahead with surgery. It's a personal choice. Do what is right for you. Good luck. Pat
rachelcasa
Posts: 729
Joined: Mon Apr 21, 2003 11:45 pm

Re: Is it o.k. to not have surgery ever?

Post by rachelcasa »

I definately agree with Nancy and Kath. We all have choices and everyones injury is different. I had surgery in Sept. 2003 and it gave me more r.o.m. and also 2 inches in length back, however, my arm was shrinking and paralyzing itself. I am only 32 and felt that it was necessary to give me hopefully 20 more years plus. Don't feel as if you have to have a surgery to be in here. That's not the case. WE love everyone weather they choose surgery or not!!
*HUGS*
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Re: Is it o.k. to not have surgery ever?

Post by veggiebug »

Does everyone's arm shrink and begin paralyzing itself? Or does it depend on the person.
I've been using my arm less since last year when I broke my arm, because my wrist hurts when I over use it. I know I need to use it more or the outcome won't be good.

User avatar
patpxc
Posts: 315
Joined: Sat Nov 03, 2001 1:06 am
Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis
Location: Ohio

Re: Is it o.k. to not have surgery ever?

Post by patpxc »

My arm doesn't look any different in size than it ever did--although I am sure I lost legnth due to the increased elbow contracture. It's a little skinnier than the other--but not anything anyone would notice. I think everyone is different depending on the exact injury--not that any of us know the exact injury.
By the way--can you see a wristbone on your erbs arm? Mine never developed. Just curious. Pat
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Re: Is it o.k. to not have surgery ever?

Post by veggiebug »

No mine never developed either. I thought it was odd till just last month when I read that someone else had mentioned there's never developed and then I felt normal. (in the BP sense)Which is the only sense I'll ever know, and that's fine.


-Traci
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