I guess my first question is about seeking help. I currently have an appt. with my PCP for next month because of the increased pain I've been having in my arm. I know she has no idea what OBPI is because I had to explain it to her when I first met her. I know there is a lot of talk on here about certain drs and such. But how does that work with insurance and all. Is all the treatments you recieve out of pocket? There are no specialists very near me and we really don't have the extra money for something not covered by insuarance.
How did you go about finding medical help?
Are the tests, like the EMG, as painful as it was 20 years ago? I'm terrified to go through them again.
If you chose to do surgery and such, how was your family with support? My husband just doesn't understand any of this. I don't think he understands why I want/need to seek treatment for something I've lived with for 30 years and can function with pretty well.
I have so many more questions but that will be a good start.
So many questions I don't know where to start.
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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: So many questions I don't know where to start.
Christina
Would you please send and e-mail to Nancy@ubpn.org
She will send you copies of our publication Outreach and maybe she has some older copies to help fill in your family on OBPI... I know my family did not understand why I was asking so many questions and why I wanted to know so much ... my sibling thought I was crazy... I was fine... My husband understood but could not grasp the problems I had because I did not know how to explain it to him or my kids. I had such limited knowledge that I simply did not talk about it ... the pain pushed me into seeking information once again.
Have your husband look at the publication it will be a big help to him. My husband saw nothing wrong with me... Love is blind...
Doctors/primary care physicians have limited experience treating adult/obpi so the experience it not there nor are there any text books with information on obpi/adult/long term effects. I realized I had to read all the awareness materials and brought copies of Outreach to my primary care physician. I explained that most of my life no doctor ever mentioned my arm nor did I... She was very receptive to all the information I had... But I studied the Awareness material and realized that I had to be educated first or I could have been ignored again. Insurance paid for my first 30 visits and that helped. But I walked into a doorway (well my robpi elbow did) and I hurt my self on the unaffected side very badly. My doctor wrote it was due to erb's palsy and I need more PT... Insurance told me I was cured! now why can't I supinate was my question... She had to write the script without using erb's palsy again. I thought that was so silly but the unaffected side was injured and it was the result of the erb's arm sticking out so we did not think it should be a problem... at least I got therapy again. Compensation leads to more back problems and neck problems and the area affected by compensation should be written up in your script for follow up treatments.
My insurance paid for the PT after I had emg and was sent to pain specialist. I did not take the drugs because they did not agree with me. I found PT much more helpful and supportive of my needs but I had a great PT. I had 3 emg and yes they are uncomfortable but they have a cream you can get it is called emla cream and somepeople had the doctors use pediatric needles on bpi arm.
Ask any question you can think of ... one of my first question when I found the boards and a very few obpi/adults was so silly but solved a minor problem for me.
So here goes...
Do you walk around with something in your obpi hand and not even realize it?
Sometimes holding you keys until you look down ... tissues or hands free phone... I would look down and realize I had something in my hand and was not aware it was still there... I also tuck things under obpi arm to hold while I am doing things with my left hand.
When I was a child, my siblings said, I would look for something and it was in my hand all the time. My siblings would get so annoyed at me because they did not understand.
How is that for a silly question? many answered back they did the same thing.
OK fire away
Kath
Would you please send and e-mail to Nancy@ubpn.org
She will send you copies of our publication Outreach and maybe she has some older copies to help fill in your family on OBPI... I know my family did not understand why I was asking so many questions and why I wanted to know so much ... my sibling thought I was crazy... I was fine... My husband understood but could not grasp the problems I had because I did not know how to explain it to him or my kids. I had such limited knowledge that I simply did not talk about it ... the pain pushed me into seeking information once again.
Have your husband look at the publication it will be a big help to him. My husband saw nothing wrong with me... Love is blind...
Doctors/primary care physicians have limited experience treating adult/obpi so the experience it not there nor are there any text books with information on obpi/adult/long term effects. I realized I had to read all the awareness materials and brought copies of Outreach to my primary care physician. I explained that most of my life no doctor ever mentioned my arm nor did I... She was very receptive to all the information I had... But I studied the Awareness material and realized that I had to be educated first or I could have been ignored again. Insurance paid for my first 30 visits and that helped. But I walked into a doorway (well my robpi elbow did) and I hurt my self on the unaffected side very badly. My doctor wrote it was due to erb's palsy and I need more PT... Insurance told me I was cured! now why can't I supinate was my question... She had to write the script without using erb's palsy again. I thought that was so silly but the unaffected side was injured and it was the result of the erb's arm sticking out so we did not think it should be a problem... at least I got therapy again. Compensation leads to more back problems and neck problems and the area affected by compensation should be written up in your script for follow up treatments.
My insurance paid for the PT after I had emg and was sent to pain specialist. I did not take the drugs because they did not agree with me. I found PT much more helpful and supportive of my needs but I had a great PT. I had 3 emg and yes they are uncomfortable but they have a cream you can get it is called emla cream and somepeople had the doctors use pediatric needles on bpi arm.
Ask any question you can think of ... one of my first question when I found the boards and a very few obpi/adults was so silly but solved a minor problem for me.
So here goes...
Do you walk around with something in your obpi hand and not even realize it?
Sometimes holding you keys until you look down ... tissues or hands free phone... I would look down and realize I had something in my hand and was not aware it was still there... I also tuck things under obpi arm to hold while I am doing things with my left hand.
When I was a child, my siblings said, I would look for something and it was in my hand all the time. My siblings would get so annoyed at me because they did not understand.
How is that for a silly question? many answered back they did the same thing.
OK fire away
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: So many questions I don't know where to start.
My Dr had no idea either. He was very surprised when I saw him and told him about Dr Shenaq and the Mod quad. (and pleased:) )
There were no Drs. on our insurance plan either. It took a bit of doing, but we got them to cover it as there are only these few Drs, they had no one under plan qualified or even very knowledgable about it. I choose Dr Shenaq because he was on our plan as a pediatric Dr. I thought it would be easier to get him covered for me too:)
The only tests Dr Shenaq ordered for me were an x-ray and a MRI (the first ever of my shoulder of either of those) Neither were painful.
My family was wonderful for support. After surgery, I was in a splint with my arm straight out to my side (I looked like a 7) for 4 weeks, 24-7. My mother came to help me with the kids (we have 5) and the house. After 4 weeks, I only had to wear the splint at night. So mom went back home. It was hard for the kids, so much change, but they have held up well.
My husbands family were surprised to even find out I had the problem, as I hid it well. They helped out mostly through prayer. I knew their thoughts were with us.
My Best Friend was soooo surprised when I said something, because she had had a dream the night before. In it I had flown to Georgia to visit. When I met her at the airport, I held up my arm and told her it was fixed. So strange she had that right before I told her of the possibility of surgery.
Our Church was wonderful. Besides praying for me and my swift recovery. They got together and brought dinner over several times while I was wearing that splint.
As for living with it 30 years and functioning pretty well...... DH felt that way too (except in my case 36 years), but then I started showing him how much damage the right arm was going through by doing double duty. The over compensation of the right to make up for the left. Pointing out how, at 36, I am already developing arthritis in it. How if we do nothing I may very well be unable to use both arms by the time I am 60. I told him it was about time my left started sharing the workload. To me, being unable to use either arm well is VERY frightening.
There were no Drs. on our insurance plan either. It took a bit of doing, but we got them to cover it as there are only these few Drs, they had no one under plan qualified or even very knowledgable about it. I choose Dr Shenaq because he was on our plan as a pediatric Dr. I thought it would be easier to get him covered for me too:)
The only tests Dr Shenaq ordered for me were an x-ray and a MRI (the first ever of my shoulder of either of those) Neither were painful.
My family was wonderful for support. After surgery, I was in a splint with my arm straight out to my side (I looked like a 7) for 4 weeks, 24-7. My mother came to help me with the kids (we have 5) and the house. After 4 weeks, I only had to wear the splint at night. So mom went back home. It was hard for the kids, so much change, but they have held up well.
My husbands family were surprised to even find out I had the problem, as I hid it well. They helped out mostly through prayer. I knew their thoughts were with us.
My Best Friend was soooo surprised when I said something, because she had had a dream the night before. In it I had flown to Georgia to visit. When I met her at the airport, I held up my arm and told her it was fixed. So strange she had that right before I told her of the possibility of surgery.
Our Church was wonderful. Besides praying for me and my swift recovery. They got together and brought dinner over several times while I was wearing that splint.
As for living with it 30 years and functioning pretty well...... DH felt that way too (except in my case 36 years), but then I started showing him how much damage the right arm was going through by doing double duty. The over compensation of the right to make up for the left. Pointing out how, at 36, I am already developing arthritis in it. How if we do nothing I may very well be unable to use both arms by the time I am 60. I told him it was about time my left started sharing the workload. To me, being unable to use either arm well is VERY frightening.