Frustrated

[kubiksquare]

I'm at my wits end! And that's saying something considering that we've been very fortunate.

Lukas is nearing 8 months old and his improvement is staggering. He lifts his arm, he's leanred to move his fingers, though not a lot, independantly and I see him constantly lifting that hand to his mouth. He's finally realized that he's got two! The other day he even sat up on his own instead of throwing himself back. He figured out how to use his back muscles and pull himself forward again. Rejoice!

Alas I am still not happy. I called TCH and was informed that surgery was probably still needed. I'm scheduled to go see Dr. Nath in August in San Diego so he can evaluate Lukas personally but it crushed my hopes of a surgery free recovery. I feel deflated. Here I was hoping that my little boy was going to come out of this on his own (I know some people whose children have healed on their own) and now...now I'm wilted with the prospect of surgeries and pain and...ugh.

[PeggyF]

I hear you! I've been there. It takes time to let go of that feeling/wish that your baby will fully recover (even after surgery--even though you KNOW differently, your heart can't help but let your head hold some hope that YOUR baby WILL be 100%.
You will go through peeks and valleys and please come here for support on both ends of the spectrum.
Your child will never stop amazing you--REALLY.
Surgery or no surgery, you will both be just fine )

Peggy

[m&mmom]

Sorry for what you're going through. I remember having Matthew seen at a picnic and then the recommendation of surgery. Hits you like a ton of bricks. We were ok with the second, but when we found out he needed the third we were really unprepared to hear that news.
If you were able to put off surgery so far maybe you'll be blessed with more miracles down the road. Don't give up hope. Have you considered acupucnture or any other type of alternatives to possibly help.
Cindy

[pepper]

I hear you. We had a reunion day at the University of Iowa in December for the current patients. Brie was 9 mos. old then. I really thought at the time that she was not going to need surgery, but one thing I kept hearing the other parents say was "We really thought our child had progressed enough without surgery, but the difference after the procedure is remarkable."

Brie is 16 mos. old now and we are have the tendon transfer/muscle release done at the end of the month. She has good range of motion, but her muscles are just so tight... There are days I look at her and think it isn't necessary but then she'll try a complex movement and her little shoulder slips way down and her elbow sticks way out and I realize that it is for the best decision for us at this time.

I will pray for peace and guidance for you at this difficult time. You are never alone.

[Francine_Litz]

I will never forget how crushed I was to hear that Maia needed primary surgery. I was just absolutely SURE everything was going fine.... and then once they went in there, they found 3 ruptured nerves. We got there a bit late but I'm so glad we got there!

It's a very fine line.... one minute you have all the hope in the world -you think it's a termporary thing...and the next minute you're learning that not only does it require surgery but that it's severe and permanent.

And then again don't give up hope. You might just get there and there may be enough increased function in just the wait time for a surgical date to turn your little one away. This happens VERY often.

My heart goes out to you. These are very hard times.
big hugs,
francine

[Kristie]

I am so sorry you feel frustrated! I know it is hard to think of surgery and all that goes a long with it.

I just want to encourage you that you can always decline surgery. You can get a second opinion to be sure that whatever surgery is recommended is really the best option for your child at the time it is recommended. I do not intend to start any contraversy but from what questionning I have done the Mod-Quad (or other surgeries like it- muslce/tendon transferes/releases) can wait a little while longer. We have turned the Mod-Quad down for now. I am about to get a thrid opinion this coming Monday. And I am pretty sure that if surgery is recommend we will still wait a little while longer.

Ask tons of questions and I truly believe in getting second opinions.

Blessings,
Kristie

[admin]

I know how you feel. My little one is 4 1/2 months. He had surgery June 25,2003. He is currently in an immoblizer. We cannot wait to see the improvements after surgery. At first I'd believed the doctors when they said it would be a few weeks and he would be able to use his arm again. After 5 weeks he started to move his shoulder, at 6 weeks I saw him wiggle his finger, and at 7 weeks we started PT. I saw him lift his arm several times, no elbow bending though. I read alot on the internet so when Dr Nath and Dr Laurent recommended surgery I did not hesitate.
My son at this time is recovering, but he is just himself with his beautiful smile. Don't get me wrong it was a hard decision, and to see my son after surgery broke my heart. My decision was made for my son out of love and trust in God.

[admin]

Please let me tell you;
just because a surgeon says you need surgery does
N O T
mean you neccessarily need it.
We are surgery free and have excellant recovery!
with sincere respect, keep in mind that peer pressure, not at all meant to be 'pressure' but simply surrounding yourself with others who have had surgery, can also work to...frame your thinking.
If you are at all...hesitant about surgery,
DONT set yourself up for having it untill after you have spoke with the surgeon and at least a few parents of children who have good recovery without surgery,
we do exist...and contrary to popular opinions; it isnt neccessarily due to the fact that our children's injuries were not as severe,
Think about it, any illness/challenge...no matter the severity, affects each child differently- one child can successfully accost a seemingly huge challenge, whilst another succombs to the smallest, there are few ultimate truths and facts, statistics are all both valuable and misleading...its like a huge paradox.
DONT give up on being surgery free and recovering well...be open to what is best for you, and ofcourse if that means surgery, honor that as well, but do not allow some surgeon to change your opinion about your child...if YOU are happy with his return and recovery, listen to what the surgeon has to say, and remember , he is a surgeon, thats what he does, -
If you are sincerely trying to avoid surgery, find someone who BELIEVES recovery is possible without surgery and listen to their opinions too,
happy ROMing and bright futures

[jennyinsandiego]

Marymom,
I was wondering as a point of reference- could give me an idea of what your child's progress was like? Movement, when etc? I know you have been without any surgeries and was wondering what kind of injury your child did have and how you knew. What about in the case of avulsions? The surgery/ no surgery debate is so interesting to me, but I am wondering about the sliding scale of severity of injury vs. allopathic intervention and you mentioned non-surgical healing with "severe" injury; what do you consider severe?
I wish I had a huge chart with each injury/progress/tx on it-oh well,
BTW , just to make it clear while my daughter has had surgery, I am not in a "camp" one way or the other and in fact would put myself in an alternative viewpoint in other aspects of medicine.
thanks,
Jenny

[admin]

I have read several of your other posts and totally respect where you are coming from, no worries.
TBH I do not think Max was at all on the most severe of injuries, I cannot be sure he was not avulsed but I do not believe he was,
We are told by surgeons that avulsions can only be healed with surgery butthen what exactly are they going on
and what IS healing?
is it simply function?
These are very subjective words with definitions as individual as the injuries we are discussing.
I think with natural healing one focuses more on what one is doing with the recovery, and the function rather than how bad it is, the "injury"however I did obsess a bit with max and focuses my share of how "bad" it was, in retrospect Id have skipped that part oh but isnt hindsight 20/20
so to answer as specifically as I can;
Max was flacid at birth with hints of finger movements, I remember the firsttime he showed shoulder tightening,
He had no bicep at 3 mos, at 7 mos he had some bicep but no deltoid, to this day he has minimal deltoid...and his,well his deltoid, is small- he was very internally rotated and pronated,
He was suggested for primary at TCH or nerve grafting at Miami at...3 mos ish (memory fading)
It was recommended to us that we schedule immediately to receive the maximum benefits, we didnt, by 7 mos of age we were told maybe he didnt need surgery after all from one place, the other still held to surgery but we declined, they told us that he had to have estim at the very least or we would see little recovery,
Personally, I think the sooner chiropractic adjustments can be started, the better the healing progression for many of our kids, they are all different, but chiro is a hugely understated treatment option in my opinion,and I wished the surgeons had not scared me away or I would have started them even soner than 7 mos of age, (we were told chiro could further injure a child..but I wont further down that path during this post)
Max has wonderful recovery,(no estim either by the way)
We did so many many things with him -ice(cryotherapy), water water water(continues to be our favorite) lifestyle therapy focusing on ...well life, not injury,regular chiropractic
andthere was a time not so long ago, when I looked at what he cannot do, that I thought I might try and do the muscle tendon transfer stuff but today I choose not to even have an eval for it, actually, after it was backtracking and tightening maybe 6 mos ago it has gotten alot better with lifestyle stuff- chiro and swimming, and not allowing myself to be consumed with checking out surgery,had it not been for some of the more hardcore moms in the support group I belong to who were vbisably(ok, online word for visably,...clearly?) taken aghast when I began mentioning surgery I believe I would have had him evaled and we would have probably scheduled surgery, (Jess,Pam,u guys know who you all are-Kari, are you out there?)he is loose again and has very good range, he is 4 1/2 by the way, oh and we tried acupuncture too this time, with aloty f help from big brother...
The original eval from one place ( at the 3-5 mos evals)said, signifigant upper brachial Plexux injury, the other said moderately severe BPI
I know of a woman with a daughter with what I would call a...(severe sounds so severe) far reaching injury...smaller hand, shorter arm, minimal movement in fingers,internally rotated no suppination, Id call that ...far reaching)the young lady was 12 I think? well adjusted, happy, NOT IN PAIN,. did she function differently? yes, was her appearance different? yes, did she have healing? according to her she did, Can anyone else really judge?Last time I heard,altho she used compensation, she played the harp for goodness sake, there are not many left I have contact with anymore who are avid persuers of recovery without surgery, most of the ladies(moms) I know are more middle of the road, but as any media expert will tell you, exposure to any idea is going to warm you up to it, and the more I read all the time about surgery, Im sure it is for many many people, but not having surgery is always a choice, or should be, and we should be aware of the fact that constant exposure to so many people talking about how wonderful it is is WILL affect our decision processes, and for many thats fine, but forthose who wish to be open to not having surgery it is good to be aware/conscious of the affects from constant exposure to peers who believe in surgery ~
Thus my mission to provide exposure to the non surgical options,
to promote true CHOICE

ok, have I rambled enough for you yet!!!
peace and consciousness to everyone