Lauren,
It sounds very logical what you write. Problem is that it not proven right by the scientific studies that I saw.
I'm not a doctor so I can't tell if Amaru's doctor is applying the right policy. But from what I know there is evidence not to over hurry into a surgery.
I'm not offended. Why should I? I thought this forum was open for discussion, and that is what we are doing. Or do you see this otherwise?
Does anybody knows some statistical evidence that an early surgery is better than a late surgery? If that is the case, I will of course change my opinion.
Lauren, did your doctor publish anything on this matter so we can all learn from this?
John
Amaru's test results
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Lauren (Brooke's mom)
- Posts: 73
- Joined: Tue Aug 02, 2005 1:48 pm
Re: Amaru's test results
Kate-
Since you are the subject matter expert here, and are WELL versed in all documentation concerning nerve regrowth, and everything else for that matter...will you please help me out here and post some information? Honestly, I would..but I am SO busy lately that I don't have any time to do so.
THANKS KATE.
John- Like I said, I am very sorry if what I said sounded rude or like an attack. However, I am very versed in total plexus injuries and absolutely KNOW what I am talking about based on hands on experience. I just want to help and not give anyone false hope. You are absolutely CORRECT that early surgery is MOST often not the best course of action, however; total plexus injuries are a completely different story. They are much more severe than the regular erbs palsy and usually signify a greater injury to the upper extremety nerves as well. When a total plexus injury is present, the "the sooner the better" principle applies.
Take care,
Lauren
Since you are the subject matter expert here, and are WELL versed in all documentation concerning nerve regrowth, and everything else for that matter...will you please help me out here and post some information? Honestly, I would..but I am SO busy lately that I don't have any time to do so.
THANKS KATE.
John- Like I said, I am very sorry if what I said sounded rude or like an attack. However, I am very versed in total plexus injuries and absolutely KNOW what I am talking about based on hands on experience. I just want to help and not give anyone false hope. You are absolutely CORRECT that early surgery is MOST often not the best course of action, however; total plexus injuries are a completely different story. They are much more severe than the regular erbs palsy and usually signify a greater injury to the upper extremety nerves as well. When a total plexus injury is present, the "the sooner the better" principle applies.
Take care,
Lauren
Re: Amaru's test results
Lauren,
Your child didn't have primary, correct? And had hand-to-mouth function at 5 months of age, which would have put her outside the prescription for primary by MOST BPI specialists. And don't you say that not having primary surgery was the best thing that ever happened to her? So I'm confused why you are pushing someone else to make a primary surgery decision prematurely?
Kate
Your child didn't have primary, correct? And had hand-to-mouth function at 5 months of age, which would have put her outside the prescription for primary by MOST BPI specialists. And don't you say that not having primary surgery was the best thing that ever happened to her? So I'm confused why you are pushing someone else to make a primary surgery decision prematurely?
Kate
Re: Amaru's test results
It looks like the paper that John cited (full text is included in the link) addresses many of these questions. Surgeons CAN afford to wait until 6 months to get a better idea of what natural recovery can be expected -- but for UPPER plexus injuries (where the hand/wrist is not affected). Many of the children in the study had no visible recovery at 3 months (the frequently used age for determination for primary surgery) who later had very good recovery by 6 months old. These children would have been harmed by primary surgery, which would have disrupted their naturally occurring recovery for what is usually a poor substitute using grafts and re-training of the brain.
"Between 1987 and 1998, 470 patients visited the national clinic for obstetrical brachial plexus palsies at the Karolinska Hospital, Stockholm, Sweden. This study reports on 247 children examined at 5 years of age using a special protocol for testing the sensory and motor function of the hand. The children were distributed in various groups depending on the number of injured nerves, whether they had some muscle activity in their biceps or deltoid muscles at 3 months of age, and whether any operations with nerve reconstruction had been performed. The shoulder range of movement in C5–6 palsies was significantly better in the group which had been operated on (operated group), but otherwise there were no differences between children who had been operated on (nonoperated group) and those who had not. A decrease in grip strength and bimanual function in level C5–6 palsies was found, though these roots should not innervate the distal hand. Outcome was not influenced by the number of avulsions in upper-plexus palsies or whether the operation took place before or after the age of 6 months. The group with extensive lesions (C5–Th1) had the most root avulsions, showing a correlation between increased avulsions and decreased hand function. This study does not support operating on children with no activity of the biceps and deltoid muscles at 3 months of age, as other authors have concluded. Rather, it favours waiting for a late recovery."
It is important to note that injuries including the lower plexus still are recommended to proceed by 3-4 months of age. The study doesn't say anything differently there.
I would be very concerned about a doctor leaving a global injury until 8 months of age before addressing primary surgery. There have been numerous studies to show that lack of hand and wrist function by 3 months of age suggest a very severe injury. EVERY doctor (including those in the study John cites) believes that primary surgery should be done as early as it is *certain* it is necessary. I don't think John and Lauren are disagreeing on this point, just the answer to "when is it certain?" That is the million dollar question, still.
Kate
Kate
"Between 1987 and 1998, 470 patients visited the national clinic for obstetrical brachial plexus palsies at the Karolinska Hospital, Stockholm, Sweden. This study reports on 247 children examined at 5 years of age using a special protocol for testing the sensory and motor function of the hand. The children were distributed in various groups depending on the number of injured nerves, whether they had some muscle activity in their biceps or deltoid muscles at 3 months of age, and whether any operations with nerve reconstruction had been performed. The shoulder range of movement in C5–6 palsies was significantly better in the group which had been operated on (operated group), but otherwise there were no differences between children who had been operated on (nonoperated group) and those who had not. A decrease in grip strength and bimanual function in level C5–6 palsies was found, though these roots should not innervate the distal hand. Outcome was not influenced by the number of avulsions in upper-plexus palsies or whether the operation took place before or after the age of 6 months. The group with extensive lesions (C5–Th1) had the most root avulsions, showing a correlation between increased avulsions and decreased hand function. This study does not support operating on children with no activity of the biceps and deltoid muscles at 3 months of age, as other authors have concluded. Rather, it favours waiting for a late recovery."
It is important to note that injuries including the lower plexus still are recommended to proceed by 3-4 months of age. The study doesn't say anything differently there.
I would be very concerned about a doctor leaving a global injury until 8 months of age before addressing primary surgery. There have been numerous studies to show that lack of hand and wrist function by 3 months of age suggest a very severe injury. EVERY doctor (including those in the study John cites) believes that primary surgery should be done as early as it is *certain* it is necessary. I don't think John and Lauren are disagreeing on this point, just the answer to "when is it certain?" That is the million dollar question, still.
Kate
Kate
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Lauren (Brooke's mom)
- Posts: 73
- Joined: Tue Aug 02, 2005 1:48 pm
Re: Amaru's test results
Kate,
Actually I'm saying the exact opposite. I think primary surgery is a BAD idea. Especially if the child shows any recovery within the first 4 months. What I am saying is early surgical exploration IS very important,as I don't think Brooke would have had enough time to regain her hand function if she wouldn't have had the mod quad surgery (to release the contractures and let the nerves heal). The point I was trying to get across..and I'm sorry if that wasn't clear...is that primary surgery is a LAST RESORT...however, if it is found that nerves are severely injured (full rupture or avulsion) grafts must be done as soon as possible. If not, I, personally, am against any child having primary surgery.
Lauren
Actually I'm saying the exact opposite. I think primary surgery is a BAD idea. Especially if the child shows any recovery within the first 4 months. What I am saying is early surgical exploration IS very important,as I don't think Brooke would have had enough time to regain her hand function if she wouldn't have had the mod quad surgery (to release the contractures and let the nerves heal). The point I was trying to get across..and I'm sorry if that wasn't clear...is that primary surgery is a LAST RESORT...however, if it is found that nerves are severely injured (full rupture or avulsion) grafts must be done as soon as possible. If not, I, personally, am against any child having primary surgery.
Lauren
Re: Amaru's test results
Lauren:
I am confused...did your child have function at 4 months old?
I know of the study that Kate mentions, and it was interesting that he was proposing a wait and see until 6 months of age, provided there was hand function.
We did primary on Juliana at 4.5 months, as she had a flaccid arm, shoulder and hand at that time. She scored a perfect 0 on the Mallet scale (except for a .5 given for some perceived pinky movement).
The question of should we have or shouldn't we have (in the past tense) is a slippery slope. Not only don't you have a control subject, but you also make your decisions based on info you have at that time. I am glad we did primary early, as I believe it led to a better outcome for Julie.
claudia
I am confused...did your child have function at 4 months old?
I know of the study that Kate mentions, and it was interesting that he was proposing a wait and see until 6 months of age, provided there was hand function.
We did primary on Juliana at 4.5 months, as she had a flaccid arm, shoulder and hand at that time. She scored a perfect 0 on the Mallet scale (except for a .5 given for some perceived pinky movement).
The question of should we have or shouldn't we have (in the past tense) is a slippery slope. Not only don't you have a control subject, but you also make your decisions based on info you have at that time. I am glad we did primary early, as I believe it led to a better outcome for Julie.
claudia
Re: Amaru's test results
The Stromberg study wouldn't have changed the recommendation for Juliana at all. Complete lack of hand function at 3 months old is indicative for microsurgery. MOST doctors still agree about this. And as far as Brooke is concerned, classical primary surgery would have revealed whether or not she had root avulsions. I'm curious what Dr. Nath would have done if the testing in her armpit had revealed avulsions? Would he then have closed up the armpit and proceeded to do a full plexus reconstruction? Or would he have just done nerve transfers in the axilla (as with the Iraqi child)?
Where primary reconstruction has diverged most is in how partial tears (with accompanying neuromas) are addressed. The surgeons at TCH had a peculiar (as in unique to them) way to address neuromas, and it seems to have not been very successful. Several studies since then have reinforced that the outcome with neuromas is better if they are resectioned and grafted, rather than the neurolysis and "bypass" graft that TCH usually performed.
As for "not grafting the lower roots" (a claim I have seen mentioned several times on this board) this is NOT universally true, especially now. Up until about 4-5 years ago, many centers (including TCH) did primary reconstruction with the main goal of innervating the upper plexus (for shoulder function) and didn't do much to address hand function. It was believed (based on adult reconstructions) that the hand was unrecoverable in BPI. That opinion has gradually modified as specialists have realized that a functional shoulder is not much use without a functional hand, and HAVE seen reinnervation of the hand from primary surgery. You can see this in an assortment of recent papers and updates published on primary nerve reconstruction in OBPI, most notably the Stromberg paper, where they apply extensive testing in order to fully determine arm and hand function after intervention (compared to how most studies just reported Mallet shoulder function). From their experience, they are now *strong* advocates of restoring the hand as the most important goal of primary surgery in total plexus palsy.
Kate
Where primary reconstruction has diverged most is in how partial tears (with accompanying neuromas) are addressed. The surgeons at TCH had a peculiar (as in unique to them) way to address neuromas, and it seems to have not been very successful. Several studies since then have reinforced that the outcome with neuromas is better if they are resectioned and grafted, rather than the neurolysis and "bypass" graft that TCH usually performed.
As for "not grafting the lower roots" (a claim I have seen mentioned several times on this board) this is NOT universally true, especially now. Up until about 4-5 years ago, many centers (including TCH) did primary reconstruction with the main goal of innervating the upper plexus (for shoulder function) and didn't do much to address hand function. It was believed (based on adult reconstructions) that the hand was unrecoverable in BPI. That opinion has gradually modified as specialists have realized that a functional shoulder is not much use without a functional hand, and HAVE seen reinnervation of the hand from primary surgery. You can see this in an assortment of recent papers and updates published on primary nerve reconstruction in OBPI, most notably the Stromberg paper, where they apply extensive testing in order to fully determine arm and hand function after intervention (compared to how most studies just reported Mallet shoulder function). From their experience, they are now *strong* advocates of restoring the hand as the most important goal of primary surgery in total plexus palsy.
Kate
Re: Amaru's test results
I just wanted to add that when my child, who suffered a severe BPI at birth, was nine months, doctors urged with alarm that she undergo primary surgery immediately. I scrambled, and we traveled to many doctors for that primary surgical evaluation. We meet with Dr. Howard Clarke, Canada, who I believe was one of the original theorists on the "cookie-test": if by three months a child cannot put hand-to-month then primary surgery is a good option.
Frankly the primary surgery really frightened me: it is microscopic surgery in an entanglement of nerves.
I choose rather to wait and see what nature would deliver to my child. She did gain hand-to-mouth at about 20 months. Then I waited for more -- with lots of OT of course. By her fourth-year, I definitely felt more comfort with her outcome and that very mysterious and prolonged travel of nerve repair. We then explored secondary surgery, which she did have. I am very satisfied with that outcome, although I do believe it has flattened and we are looking at new methods in OT/PT.
dunloe
Frankly the primary surgery really frightened me: it is microscopic surgery in an entanglement of nerves.
I choose rather to wait and see what nature would deliver to my child. She did gain hand-to-mouth at about 20 months. Then I waited for more -- with lots of OT of course. By her fourth-year, I definitely felt more comfort with her outcome and that very mysterious and prolonged travel of nerve repair. We then explored secondary surgery, which she did have. I am very satisfied with that outcome, although I do believe it has flattened and we are looking at new methods in OT/PT.
dunloe
Re: Amaru's test results
Actually, the "cookie test" was recommended at 9 months of age in this paper:
"An approach to obstetrical brachial plexus injuries." H M Clarke and C G Curtis
Hand Clin. 1995 November; 11(4): 563–581.
http://www.ncbi.nlm.nih.gov/entrez/quer ... &DB=pubmed
As silly as the title sounds, we used the "towel test" which is similar to the "cookie test", but can be implemented as early as 2-3 months of age (most 2 month old kids won't get a cookie to their mouth even with the good arm...):
"The towel test: a useful technique for the clinical and electromyographic evaluation of obstetric brachial plexus palsy." Bertelli JA, Ghizoni MF, J Hand Surg [Br]. 2004 Apr;29(2):155-8
http://www.ncbi.nlm.nih.gov/entrez/quer ... &DB=pubmed
I know it sounds pretty stupid, but it is a very good test method which they validated with EMG studies. Basically, the paper shows that even young infants (2-3 months) will activate biceps in an attempt to remove a towel covering their face. They need use biceps, deltoid, triceps, wrist and hand to get the towel off, which most can do by 6 months of age if those muscles have recovered enough. Other papers had shown that the ability to activate biceps, deltoid, triceps, and wrist, finger and thumb extension by six months of age predicted good recovery without nerve reconstruction 95% of the time. So if a child can get a towel off of his head by the time he is six months old, his recovery should be better than if nerve reconstruction was performed. They also showed that kids who couldn't get the towel off at 6 months of age also couldn't do it at 9 months of age, indicating a more severe injury.
Other tests rely on a child being cooperative during the test, while this one doesn't (every six-month-old will strive to get that dang towel off, no matter how distracted). It did feel mean to put a towel on Joshua's head to see if he could get it off, but it is over very quickly and is a very short time of frustration compared to a huge and invasive surgery.
One disclaimer is that I don't know how much the new knowledge of glenoid malformation and humeral subluxation is going to change any of these "tests". It does seem like many times function is severely limited, not by lack of nerve recovery, but by shoulder malformation. Joshua was *barely* able to get the towel off to avoid primary surgery, but certainly could do it a whole lot better after his capsule release, which had nothing to do with further nerve regeneration.
Kate
"An approach to obstetrical brachial plexus injuries." H M Clarke and C G Curtis
Hand Clin. 1995 November; 11(4): 563–581.
http://www.ncbi.nlm.nih.gov/entrez/quer ... &DB=pubmed
As silly as the title sounds, we used the "towel test" which is similar to the "cookie test", but can be implemented as early as 2-3 months of age (most 2 month old kids won't get a cookie to their mouth even with the good arm...):
"The towel test: a useful technique for the clinical and electromyographic evaluation of obstetric brachial plexus palsy." Bertelli JA, Ghizoni MF, J Hand Surg [Br]. 2004 Apr;29(2):155-8
http://www.ncbi.nlm.nih.gov/entrez/quer ... &DB=pubmed
I know it sounds pretty stupid, but it is a very good test method which they validated with EMG studies. Basically, the paper shows that even young infants (2-3 months) will activate biceps in an attempt to remove a towel covering their face. They need use biceps, deltoid, triceps, wrist and hand to get the towel off, which most can do by 6 months of age if those muscles have recovered enough. Other papers had shown that the ability to activate biceps, deltoid, triceps, and wrist, finger and thumb extension by six months of age predicted good recovery without nerve reconstruction 95% of the time. So if a child can get a towel off of his head by the time he is six months old, his recovery should be better than if nerve reconstruction was performed. They also showed that kids who couldn't get the towel off at 6 months of age also couldn't do it at 9 months of age, indicating a more severe injury.
Other tests rely on a child being cooperative during the test, while this one doesn't (every six-month-old will strive to get that dang towel off, no matter how distracted). It did feel mean to put a towel on Joshua's head to see if he could get it off, but it is over very quickly and is a very short time of frustration compared to a huge and invasive surgery.
One disclaimer is that I don't know how much the new knowledge of glenoid malformation and humeral subluxation is going to change any of these "tests". It does seem like many times function is severely limited, not by lack of nerve recovery, but by shoulder malformation. Joshua was *barely* able to get the towel off to avoid primary surgery, but certainly could do it a whole lot better after his capsule release, which had nothing to do with further nerve regeneration.
Kate
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: Amaru's test results
This is a message to Amaru's mom, I don't really want to be in the debate going on here,however I thought I would share with you that my daughter had primary surgery at 9 months and our doctor, Dr. Howard Clarke did recommend the surgery due to the "cookie test" which is done at 9 months not 3. I have spoken to parents whose children have been operated on by him and are very,very happy with the outcome. My daughter is only 2 months post op and she is already showing signs (small ones) of healing.
Just do what you feel is best you half to live with the decision. But in my experiences and everything I have researched, time is of the essence and that should be taken seriously. I wish you the best of luck, no child or parent should have to go through this.
Dawn
mom to Cassidy ROBPI
Just do what you feel is best you half to live with the decision. But in my experiences and everything I have researched, time is of the essence and that should be taken seriously. I wish you the best of luck, no child or parent should have to go through this.
Dawn
mom to Cassidy ROBPI