The plan for the Spine and Paul McCartney

I wanted to start off the blog today by letting you know why I do this blog.  The blog is both therapeutic for me and helps me keep up with Brandon's progress.  But I started the blog with the intention that when someone asks me how is Brandon doing, I can say fine and then refer back to the blog for how he is really doing.  Repeating the same story over and over sometimes is difficult for me and it is just easier to say he is fine.  And let me say - Brandon is really doing great.  He has a great life despite the challenges he must deal with everyday.  He doesn't even think about those challenges and instead focuses on those things he loves.  It is about music and in particular the Beatles.  He is very happy.  I want him to always be happy. 

I also do the blog because I hope it helps at least 1 more family searching for that little bit of information they have been seeking.  Maybe it is the name of a doctor, a drug Brandon is using, diet, supplements, employment, housing and accessing services.  I feel lucky that we have been able to find great resources for Brandon because of my past work, work on advisory committees or where I currently work.  But not all parents have the same access and don't really know where to start to find resources.  I hope some of this is for parents searching for answers.  

Probably more importantly I do the blog for all of you who have looked at a child with special needs and don't know what to say or don't understand what it is like to be a parent of a child with special needs.  Many of my friends are lobbyists/lawmakers/policy developers making policy for people like Brandon.  But they don't know any Brandon's.  This is my attempt at helping educate, even if only one person takes an interest and then uses the examples for change.  I have found over the years Brandon has been referenced in many conversations and I am fine with that when the end result helps many Brandon's in the future.  I will continue to be the voice for change for Brandon and so will Brandon.  

Many of you have commented that you are so glad Brandon is doing better since my last post on facebook giving an update.  I have mixed response to this.  Brandon still has a serious medical condition he is facing.  He still must have surgery to correct this condition and it will be major surgery to rebuild his spine.  But what we have learned for the last few months is there is a treatment that can slowly improve Brandon's osteoporosis.  Brandon's bones are too fragile to handle a major surgery today.  Continuing with treatment of the osteoporosis must be a priority for Brandon currently.  Monitoring Brandon's spine will be a priority.  At some point probably within the next 3 years Brandon will have the surgery.  Because Brandon's surgery is so complicated we really need to have a surgeon who has done other Brandon's.  And it is a plus if the surgeon loves the Beatles.  Our goal is that after a successful surgery Brandon does not have any more pain than he currently has today.  So here is the latest.

Update on Brandon's Osteoporosis - Before we went to meet with surgeons this week Brandon had a repeat bone density performed.  We received the results right before our meetings with the surgeons.  The results are similar to what we were told to expect by the MD Anderson doctor.  Brandon's overall improvement after 1 year on forteo, changes in supplements, exercises and vibration improved by 5.4%.  However the hip and femoral neck declined. Brandon is at risk of a major osteoporotic fracture at 13%.  Brandon's scores in the spine which is the area we need more increase of bone, range from -2.5 (T and Z scores) to -3.4.  Normal is 1 and low bone mass (osteopenia is between -1 and -2.5).  Our goal is to get to these scores to the osteopenia range.  This was important news before our visits.  

The Austin surgeon's surgery plan - Brandon met with the Austin surgeon who was scheduled to perform surgery on him in October.  This surgeon reviewed all the records and is suggesting that Brandon have a rod inserted from T9 through L4 (see below).  The surgeon was ready to do surgery in Oct but agreed that more bone improvement is always ideal.  He said that Brandon could wait while completing the osteoporosis treatment.  He said he wasn't sure, but he may need to insert the rod from T9 all the way to the pelvis because Brandon's spine is not aligned.  He would open Brandon up in the OR and decide if he would need to go all the way to the spine based on the alignment.  He said that balance is key to the success of the surgery.  He also said that Brandon's curve has changed from 52% to 56%. He went on talking about how bad Brandon's curve is which is in between T 9 and L4 and specifically serious decline between L1 and L4.  He really didn't have much more detail on what he is recommending for surgery.  We actually left this appointment feeling fairly good with the recommendation except the part where he would not decide whether to go to the pelvis until in the OR.  

The second opinion - We left Austin and headed to Dallas for our first second opinion.  It was actually nice that they were close to each other in time.  Dr Robert Viere in Dallas was our second opinion physician.  We have another one scheduled in Houston with Dr Hanson in a few weeks.  When everyone said Brandon needed surgery on the spine I outreached to Brandon's foot surgeon at Scottish Rite.  He followed Brandon's scoliosis for several years while treating the foot.  I sent over a few reports to him and he looked up Brandon's history from Scottish Rite.  He was concerned and strongly insisted that we see Dr Viere.  He said they refer their patients who age out of Scottish Rite to Dr Viere and all the physicians practicing at Scottish Rite use him personally.  I brought all of Brandon's records and films with me.  Dr Viere reviewed all the records and reports.  When he came in he immediately started checking all of Brandon's limbs, moving them around and pressing on them.  That actually felt great because no one seems to be interested in Brandon's overall musculoskeletal health and I have always thought that is important even in regards to his spine.  We did not move forward with his foot surgery until we were able to determine the impact on Brandon's body from the deformity of the foot and the impact surgery will have to improve his gait.  I thought this was lacking for prep of this spine surgery.  The first thing he said was you cant do surgery on a person with cerebral palsy or a neurological condition the same as other adults.  Spasticity plays a large role.  A person with tight spasticity can pull bones through the implants.  Based on his exam Brandon could have the surgery as his muscle tone in the truck is low and therefore is a candidate for surgery.  Brandon's x-ray in his office is showing the curve is around 52% overall in the spine.  He is also concerned with the curve between L1 and L4 and the severity of the decline.  

But his plan is different.  He says that Brandon's spine is leaning to the left and this is why Brandon walks leaning to one side.  The only way to repair this is to align Brandon's spine to the pelvis.  Brandon's spine will need supports when doing the repair.  They will insert these supports through the front.  This will cushion the spine as they align.  Besides tilting to one side, Brandon is tilting forward which will also need to be corrected.  Once the rod is inserted all the way to the pelvis Brandon will not be able to bend over or move from side to side.  Bending over is really not an issue because Brandon rarely does this now.  But he does not want Brandon to have this surgery until Brandon is in the osteopenia range as I described above.  He is recommending that we continue on forteo and then the new drug until we have better bone health.  He wants to check Brandon next year to see progress and anticipates in a couple of years he will be ready.  He also believes Brandon must be checked for any genetic condition because this will factor into the surgery.  He definitely wants more information on osteogenesis imperfecta or any other genetic information.  We will come back to his office for more tests and review in 1 year.  As we were walking out we met Dr Viere heading to the hospital.  We commented about Brandon's love of the Beatles and Dr Viere said he has every original Beatles album released and that he is a major Beatles fan.  That really made Brandon's day.  

Recovery - For both surgeons Brandon will be in the hospital for 5-7 days.  Dr Viere's plan is for Brandon to go to inpatient rehab to learn to walk again without leaning and improving his balance.  He will need to be in a hard plastic brace after surgery and will be in significant pain for around 2 months which they will manage. At 3 months he will begin to feel better.  When recovery is complete Brandon will be feeling better than he is currently.  

The heart - The Austin surgeon wanted Brandon to go through a complete adult assessment to make sure he is healthy enough to go through surgery.  At our hospital visit to check his ability to undergo surgery Brandon flunked the EKG.  This is not unusual and normally associated with a lead from the test not correctly placed, but he looked through previous EKGs ( he has had one every quarter for the last 15 years) and requested Brandon go to an adult cardiologist to get checked and to review his genome results.  We did have a check previously with the pediatric cardiologists but it has been at least 8 years.  We will go meet with the adult cardiologist to make sure we have checked all the possible conditions.  As Brandon said - mom we will check this one off the list.  Hmm wonder where he heard that.  

Relief - I can only tell you that I have a major sigh of relief, even if for a short time.  Relief is that we are not doing surgery in 6 weeks.  Relief is that we have a good plan and a good team (with the exception of genetics -still working on this with Baylor).  Relief that Brandon is not in significant pain and will not be in significant pain for a few more years unless his condition worsens. Relief is that we have time to work through any other major issues that may come as a result of the genetic workup or the cardio visit.  AND relief is that Brandon gets to see Paul McCartney in October without worrying about a surgery around the corner.  

And to put it in perspective as Brandon says - All you need is love (and Paul McCartney).  

More on the genetics as we move through this process and the heart with includes some genetics.  But all is good for now.  

Leah