Back from shriners
Back from shriners
Well we are done. Frankie saw Dr Kozin today and he feels there is nothing more to be done for Frankie. As he so kindly put it both Frankie and I have to come to terms with the fact that frankie has a very bad injury that can't be fixed. He said he was surprised that we went ahead and had the Mod Quad done since when we saw him in 2003 he was against it. He was glad that Frankie felt it helped him pain wise and feeling looser but he didn't see a difference in function which I don't get because there is a lot more function and even measurement wise there is a difference from when he measured him last in 2003.
He also said there is nothing to be done for the elbow that the dislocation can not be corrected and that serial casting like Dr Cornwall suggested would only cause problems due to boney growth. He also said that turning the hand palm down (Dr Cornwalls suggests)would take away Frankies use of the hand since he has little feeling he relys on visual to tell him when to grasp. With the palm down this would be taken away and he said he sees it in older kids that have had this done they stop using the hand altogether. He did say frankie must start wearing an elbow splint a few nights a week to help the elbow from further contracting and the mod quad splint should be wore 1x a week to keep the muscles loose and prevent contractures from coming back in the shoulder. Frankie feels disappointed but in a way relieved now he says he can go back to the way he was before Nov 9th 2006 a normal kid. He said he is glad he had the Mod Quad but sick of all the doctors saying different stuff and not knowing who to trust. I personally am sad but also relieved to get back to normal. I must say it did tick me off the way Dr Kozin said that Frankie and I have to face the fact that he can't be fixed. No one has excepted this more then Frankie and I his last surgery before the mod quad in 2006 was in 1995 and when we saw Dr Kozin in 2003 it was not for surgical advice but for pain in the wrist. I truly don't remember his discussing the mod quad with us and in 2003 Frankie was still dead set against any further surgeries he did not change his mind until spring of 2006 when we started looking into the Mod Quad.He also felt that the surgeries that Dr Nath wanted to do on Frankie were for cosmetic purposes only and that no function would be gained. I am greatful to be getting away from all this and maybe in the years to come there will be something that can be done but who knows by then Frankie my not be interested having once again found peace with himself. Mare
He also said there is nothing to be done for the elbow that the dislocation can not be corrected and that serial casting like Dr Cornwall suggested would only cause problems due to boney growth. He also said that turning the hand palm down (Dr Cornwalls suggests)would take away Frankies use of the hand since he has little feeling he relys on visual to tell him when to grasp. With the palm down this would be taken away and he said he sees it in older kids that have had this done they stop using the hand altogether. He did say frankie must start wearing an elbow splint a few nights a week to help the elbow from further contracting and the mod quad splint should be wore 1x a week to keep the muscles loose and prevent contractures from coming back in the shoulder. Frankie feels disappointed but in a way relieved now he says he can go back to the way he was before Nov 9th 2006 a normal kid. He said he is glad he had the Mod Quad but sick of all the doctors saying different stuff and not knowing who to trust. I personally am sad but also relieved to get back to normal. I must say it did tick me off the way Dr Kozin said that Frankie and I have to face the fact that he can't be fixed. No one has excepted this more then Frankie and I his last surgery before the mod quad in 2006 was in 1995 and when we saw Dr Kozin in 2003 it was not for surgical advice but for pain in the wrist. I truly don't remember his discussing the mod quad with us and in 2003 Frankie was still dead set against any further surgeries he did not change his mind until spring of 2006 when we started looking into the Mod Quad.He also felt that the surgeries that Dr Nath wanted to do on Frankie were for cosmetic purposes only and that no function would be gained. I am greatful to be getting away from all this and maybe in the years to come there will be something that can be done but who knows by then Frankie my not be interested having once again found peace with himself. Mare
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Back from shriners
Mare - there are so many good "non surgical" things that you and Frankie can do to make change...surgery is not the endall. I'd love to talk with you more about this. (I am a bodywork therapist)
Email me if you want... franlitz@gmail.com
And I also want to say that each day brings more learning and opinions of "today" might completely change in one year, two years, five years, ten years. I know many adults who did all different kind of surgery and non-surgical interventions and got lots of change even later in life. So don't ever feel like you are at the END. There is no end.
Email me if you want... franlitz@gmail.com
And I also want to say that each day brings more learning and opinions of "today" might completely change in one year, two years, five years, ten years. I know many adults who did all different kind of surgery and non-surgical interventions and got lots of change even later in life. So don't ever feel like you are at the END. There is no end.
Re: Back from shriners
I'm glad frankie has found peace with himself. You shoud be proud of the way you fought for your son. Sometimes there is a limit to what we can do to fix our bodies. This doesn't mean that you failed. From your posts it sounds like your son has gained function and that is a positive thing.
Good luck,
Becky
Good luck,
Becky
Re: Back from shriners
Hi Mare,
I can really relate to what you and Frankie are going through right now, especially to Frankie's distrust of doctors...I know it was really hard to see my child go through that.
If you would like to email me, I have unblocked my email.
Sue
I can really relate to what you and Frankie are going through right now, especially to Frankie's distrust of doctors...I know it was really hard to see my child go through that.
If you would like to email me, I have unblocked my email.
Sue
Re: Back from shriners
Its not that he doesn't trust the doctors its just that they all say something totally different from each other and its hard to know who's right or what will work and what won't and Frankie is not a risk taker. Mare
Re: Back from shriners
I can only say that Dr Nath did do the mod quad on my son when other BPI doctors said no way it wouldn't work and my son is thrilled with the outcome he is pain free and gained alot of movement and for that I am greatful to Dr Nath. Mare
Re: Back from shriners
It sounds to me like everything is pretty good. Both you and Frankie are happy with the results from the mod quad with both fuction, and pain reduction. I sure don't blame him for wanting to get back to "normal".
