Florida Picnic

Treatments, Rehabilitation, and Recovery
Locked
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Florida Picnic

Post by Judy-T »


Space Coast Brachial Plexus Injury Support Group Picnic-
March 5 - 7:00 pm Dr. Nath presentation
March 6 9am-5:00pm- Picnic to include fun, food and friendship
Email for more details and registration forms.
LMPT@worldnet.att.net




SusanLynn
Posts: 18
Joined: Sun Feb 01, 2004 6:28 pm

Re: Florida Picnic

Post by SusanLynn »

Our baby is almost 7 months old. We just found out that she has Erbs Palsy. We are very interested in going to the picnic in Florida. We are a family of 7. Veronica is our only daughter, and I have been learning all about this horrible injury in the past 2 weeks.
Do you think Dr. Nath can help her now-ish? I think she might be a canidate for nerve repair surgery. She has never used her deltoid muscle, and it has atrophy. In fact, from the look at her MRI, it looks as though her entire muscle area has atrophy.
She has a very large abnormal mass in her entire left shoulder area. Both sides of her scapula, very deep. Some radiologists have said hematoma, some say hemangioma, some say fribrotic muscle, some say tumor.
Meanwhile....this mass gives her great pain. So there goes any PT now. (she went one day, before they said to stop)
I need help from an experienced doctor who is familiar with all these things and treat her. We are willing to go anywhere. Any time. Do you know anyone who can help us? 813 654-6799 Tampa, FL area
Please help if you can,
Thank you in advance, and my God bless you & your family
Susan
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: Florida Picnic

Post by Kath »

Susan

If you decide to go to Fla. Picnic you will meet many other families who are in the same position as you are and will be able to give you support... I met my first bpi injured friends there 4 years ago.

Have you read the resource pages and Awareness pages on this website? Before you can make any decisions you must be informed there is so much to learn about this injury.

I am adult/obpi and 64 - I am still learning new things about this injury. You should consult with a bpi specialist and also get second opinions this will help you decide what is best for your baby.

Kath

Kath robpi/adult

Kathleen Mallozzi
Kathleen M

Re: Florida Picnic

Post by Kathleen M »

Susan

Four years ago I went to the Florida Picnic it was a very good experience for me and for my husband. It was the first time I ever met anyone else with obpi and sad because I met so many children who were injured like me. I also met my first tbpi group there and that was a very positive experience for all of us.

Have you checked the Medical Resources here on the website for information on doctors and also please read the Awareness packets for new parents. It will help you to understand just what is involved with this injury. There is so much to learn about it and how it impact each persons body.

It would be great if you can make it to the Picnic it will help you to meet with other parents who share common issues and understand what you are going through.

Kath
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Florida Picnic

Post by admin »

I live in Southeast Florida (Parkland) and my 21 yr old son was in a terrible car accident on Dec. 19, 2003, resulting in a paralyzed left arm due to a Brachial Plexus injury. We had a EMG done today (2/19/04) and it was not encouraging as it showed no activity in any of the muscles. I had contacted Dr. Nath earlier and will be sending him the EMG report. My question is do you think this "Picnic" and presentation will be helpful to us and does anyone knoe of a support group for TBPI in south Florida
Thank you
shelbel1950@aol.com
Posts: 33
Joined: Fri Sep 26, 2003 11:47 am

Re: Florida Picnic

Post by shelbel1950@aol.com »

Hi Steve,
My 23 yr old daughter and I live in Michigan. She has a tbpi-right dominant arm. Our mri's said no life in the muscles also, but through much searching, asking, searching, asking and researching, we were fortunate to find Dr. Nath, who by the way is phenominal, a are all the other doctors you'll see mentioned on the boards. Dr. Nath checked out my daughter's bicept with an emg after he opened it and found activity. We're going to the picnic in Florida to see everyone, visit and listen to more of his work. He's having app'ts on Saturday, short ones, but maybe he can give you an idea of what is up with your son and his injury. We have been blessed. HE said she should have had the surgery 1 1/2 yrs ago or so and she is now 2 yrs 10 mos post crash (as she says). It was well worth the trip to Texas and the exam to see what may yet be able to be done. She had surgery in Sept 03 and has movement in her arm that she never had before and it is coming along slowly, but surely. He said we need to see it in about 12 more months. She does lots of therapy and uses her electical stimuli machines and is doing wonderful. We first saw Dr Nath, by fluke, at the camp in New York. We were scheduled with another Dr who was running behind on appt's and Dr Nath had an opening so they put us with him. Four wks later, we were in Houston in surgery...he told us either 10 minutes or 3 hrs. When it got to the first hr, I was just applauding inside. We've learned so msuch on the boards. I think it would be very informative and educational for you to attend the picnic, if you choose, as well as beneficial. IF you want to email me just use the address at the top of this. Good luck with things and if you choose to make it to the picnic, we'll see you there. Shelley
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: Florida Picnic

Post by Judy-T »

Steve and Susan I e-mailed you the info on the picnic.If you plan on attending, mail the forms back to Hope. Judy
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Florida Picnic

Post by admin »

I emailed you directly just now however I wanted to say that I have talked to both Courtney and her mother Shelley. I met them from the boards and am so anxious to meet them both at the picnic. The three of us have talked and both of them are great. Courtney is coping and I am so happy that she is getting movement. Everyone is so different, just like the injury. You just have to search and cover all your bases and then make a decision. I should say, your son has to make the decision. That's so important. I am still trying to learn that. Good luck and please call.
Linda
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Florida Picnic

Post by admin »

Past, but still from Florida.
Locked