The new neurologist is amazing! God led us in the right direction on choosing a neurologist and I am very happy about it. First, he knew about NBIA which is a huge blessing since that was one of the biggest fears I had going into the appointment is trying to explain this horribly complicated disease to him. For Alis OCD and Anxiety he is recommending she see a psychiatrist to see what they think/feel and hopefully it will be one that he works with so I wont have to try to remember everything and relay it back. He has also ordered a new test that will check how the brain and nerves are interacting? He said they put headphones on her that does little puffs of air for the test, super simple and Alis kinda test since no needles are involved. He is also willing to work with us on the crazy scheduling like Dr. Stocco did, what this means for us is that when we have appointments with other doctors that he will find a way to see Ali while we are down there instead of requiring another trip, this is awesome because 3 hours is a long ways to drive especially multiple times in the same month. He did ask about changing her physical medicine doctor to there, because he knows them, and I explained to him that currently our appointments with Dr. Neidzwecki also has a neurosurgeon in there and while at this point I can care less about Ali seeing Dr. Neidzwecki anymore, I do not want to lose the neurosurgeon Dr. Stocco trusted in case it does ever come to having surgery. However, after this appointment I think we will be changing her physical medicine to the same office as Dr. Lankford and not worry about a neurosurgeon or surgery at all. We have always been against the baclofen pump and deep brain stimulation because there are major risks involved and everything is already complicated enough.....however if at some point it became necessary to keep Ali out of pain we wouldve rethought about it I guess. However, today Dr. Lankford told me about a procedure today that definitely sounds like a better idea if ever necessary, its less risky and it would be a permanent fix (for the legs) not temporary like the baclofen pump. This procedure would make it so she could no longer use her legs but the would be loosened up and no fear of breaking bones from trying to stretch her (this wouldnt be done until she could no longer walk), she is no where near in need of this procedure either but I definitely like the sound of this over surgeries that could kill her. He gave us new prescriptions for speech, occupational and physical therapy as well. He told us that if Insurance denies her again, he wont be writing a letter but will be personally calling them and taking care of it so she can get the therapy she needs. He confirmed my worries about her not having therapy and it weakening her legs so much, and when she stops using the leg muscles that it will probably progress the weakening of her other muscles. I am taking these new prescriptions and looking into a new physical therapy facility for pt and ot, it will be the same with a physical therapist doing the occupational therapy but she will have more guidance/assistance then she was getting before. Dr. Lankford also recommended finding out stretches we can do at home from PT, and doing those everyday (getting help from friends and family if possible) to help keep her legs as strong as possible. Next week we will have the spine MRI done, as well as see Dr. Neidzwecki and Dr. Curry (neurosurgeon) to discuss the tightness in Alis legs and probably upping her baclofen again, also about her feet curving like they are. Dr. Lankford said that is toning issues. All in all I feel like we are back on the right track and it seems that Dr. Lankford is going to push not only to keep Alis muscles as strong as they are for as long as possible but to make it even better and hopefully get Ali back to walking some! Sorry super long post but Im very excited by the new news
Posted on: Tue, 15 Jul 2014 01:51:10 +0000