A New-ish Kind Of Surgery

I was told about Dr. Susan Mackinnon from Washington University in St. Louis and her nerve work, last year from another Mom of another neuro clubfooter.  It sounded fascinating and that Mom was going to try and get her son in to see her.  Long story short, it didn't work out.

Anyways, this is the reason why we were very excited to hear about Dr. Susan Mackinnon and her close proximity to Dr. Dobbs.

Nerve transfer operation restores hand function for paralyzed patient

 

Surgeons in St. Louis, Missouri, have restored hand function to a 71-year-old paralyzed man — the first reported reactivation of muscles in thumb and forefingers after a spinal-cord injury — thanks to a new operation called a nerve transfer.

You can read the whole article here.

http://www.medicaldaily.com/news/20120515/9890/nerve-transfer-rewiring-paralyzed-hand-quadriplegia.htm

It is fascinating and amazing and really so very simple.  I think this could be too late for Matthew as he has already had the tendon transfer, but for other kids coming up this could be a breakthrough for them.

I would also interested to hear if Dr. Dobbs has any thoughts on this. 

I know it made my day just thinking about the possibilities!  What a breakthrough!

Unsettled or How Big Is Your Ego Anyways?

If you have been following along on this crazy train, you will remember that on Friday Feb 13 I tried to get in to see Matthew's surgeon to talk to him about seeing Dr Dobbs.

Guess who called my late yesterday afternoon? Yup, only 4 1/2 weeks after trying to speak with him, he called. Seems he just received the referral letter that I wanted to speak with him about seeing Dr Dobbs. He apologized and gave me a number for his secretary so in the future I can get a hold of him a lot sooner.

That concluded the nice part of the conversation. The next thing he said to me was "What hat did you pull this name out of?" It went downhill fast after that.

To summarize the conversation, basically he feels I am searching for a Ponseti trained doctor for a second opinion and that I have gone 'internet shopping' (his exact words). He feels I should have come to him and he could refer me to a better doctor, either the one that he works with (Ummmm, how is it a second opinion if it is your colleague?) or one in Seattle. That Dobbs is good, but not the best.

That was hard to hear. This is the man that I have trusted with my son's problems for six years. To have a professional tell me that I have not found the best doctor was hard to hear. Maybe I didn't look hard enough, maybe I have jumped into this with my eyes closed, maybe I should just make an appointment and have Matthew seen by his doctor again.

Professionals can yield a lot of power over a desperate mother.

The call did end on a somewhat positive note. He told me that if I did seek a second opinion (No, I didn't say we were going, I didn't get much time to talk and I was in a bit of shock) that I should make sure I send his file. I was able to say that I was not unhappy with his current care, but that I wanted to make sure that there wasn't something else out there that could be done. He did say he understood that I need to be Matthew's advocate and that if I need to talk to give him a call.

Sheesh. Talk about feeling unsettled.

Then I spoke with my husband. Funny, I was unsettled and unsure of what to do after the conversation. My husband on the other hand said the conversation left him feeling more sure about what we were doing then ever before. He said that most likely it was ego talking.

I had to go over in my mind the things I am not happy with here.

1. I have been asking for physio for Matthew since 2007. His surgeon keeps telling me to this day that it is unnecessary.
2. His surgeon explained Matthew's surgery to us but never once mentioned the possibility of bone surgery. He did that without us knowing.
3. He doesn't want to see Matthew until June. He seems to be waiting to do more surgery rather then prevent or prolong it.

And then I checked my email. A mom from the US with a son with neuromuscular clubfoot was asking what shoes/AFO's to go with a brace. Here in Canada, I was not given options so unfortunately I was no help. She emailed her son's doctor (Dr Dobbs) and found out he is in Hawaii on vacation. She thought she would have to wait awhile for a response. She didn't. He emailed her back from his vacation with the answer she was looking for. Amazing.

Thank you, that helped me so much. I do believe that this is a great doctor despite what I heard yesterday.

10 days and counting.

Frustration

I have been trying to get Matthew's medical file to St Louis so Dr Dobbs can take a look before he sees Matthew. Seems like a normal, simple request, right?

Wrong.

I am getting rather frustrated.

First, I called the hospital here requesting his file. I had to leave a message and then wait to be called back. When I was called back, I was given a new number to call, which of course was the wrong number to call. I was given a third number where I again left another message.

That person did get back to me and was the correct person. However I was told that a file would take 7-8 weeks to get to me. What? I said we have an appointment at the end of the month! Oh, that is different. If another hospital needs the information, they can call this number and request the file to be sent. Yay! Finally something solid!

I called St Louis and tried to find a person there that could call here to request the file. Seems that I did not sign a release paper to allow for that kind of transfer of information. What? I was transferred to another department. Seems that Matthew's file in St Louis states that medical information is not needed. What? She said that was unusual but not uncommon.

I emailed Dr Dobbs nurse asking if that was what he wanted. She emailed me back Friday afternoon that I could email or mail his file. Guess it is needed then. I emailed her back asking if she could request it and sent the phone number I had managed to find. Seeing it was Friday afternoon, it was too late for a reply.

So, here I sit, waiting to find out if she can request this information. And watch the calender. We are going to be there in three weeks.

Other news, Matthew spent most of yesterday hopping around on his right foot. He said his left foot hurt to much to walk on. Uh-oh. That can't be good.

My morning chuckle

I called Matthew's surgeon's booking office this morning to make an appointment to go in and chat with him, sans kids. Seems like a reasonable request? Right? Chat with the man who has operated on his foot, transfered a tendon, removed part of his heel bone, botoxed him, casted him for the past 6 years...right?

Wrong.

This simple request can not be easily granted. Apparently, because it is not an appointment for Matthew, they are unable to bill this appointment. And because the surgeon doesn't need to see Matthew until June, the booking receptionist didn't think she could make an appointment for him and take up valuable appointment time for another child. I think that was her way of saying nicely 'I know if you book for him now you are trying to get in the back door.'

Insert scratching head here.

So, the way around this is for me to make an appointment with my GP to request a referral appointment with my son's surgeon (of SIX years). Then I can get a referral appointment (I have no idea if I have to have a regular wait time or if I can just make the appointment) to see said surgeon so I can talk to him with out Matthew present.

Insert head shaking here.

And no, his surgeon does not take phone calls over this nor does he answer emails like the American doctors.

So, I now have an appointment next week to see my GP to request a referral to see my son's surgeon so I can chat with him without Matthew present.

Honestly, how can you not laugh over this? I sure have.

I called the Shriners after this amusing phone call. The receptionist said that the person I needed to talk to was out for the day but she would call him on his cell and see what can be done. He called me back moments later and is stopping by my house this afternoon to drop off the application forms.

Wow.

Shriners vs Alberta Health Care? What's your verdict...

Happy New Year!

Happy New Year everyone! I took a break from the computer over the holiday but am back now that I have a few hours to myself every week again. Pure bliss I tell ya!

I noticed I have a few more followers so I wanted to say Hi to them! Some of you are leaving wonderful comments for me on facebook or my personal email which I enjoy but also, feel free to leave comments here whenever you wish. You never know who's heart you will touch with your words.

So what is new here? Matthew saw his surgeon just before Christmas. He is generally happy with the newest AFO but as always, he is asking for adjustments. So off to the orthotist we go. One thing he did say was that he didn't think he has ever seen Matthew walk so straight before. Of course that was WITH the AFO. Again, as always, once the AFO is off, it is a different story. Dr. K even said to the resident "he still has the foot drop" which I immediately jumped on and said "does that mean at some point he could walk with a heel strike?!"

You could tell Dr K either forgot he said that outloud, or forgot that this is a mom who speaks up. The look on his face was slight embarassment. He said with the most compassionate look "it is too soon to tell" I guess I could take that two ways, I prefer to take it the positive way. :)

What else is new here? We took the boys to Banff over the holidays to see the 'castle'. It was a lot of fun exploring.

The castle all decorated

in front of one of the big trees

The best part was watching the boys race through the quiet ballrooms. I suppose that we should have told them not to run, but as many of you who know me realize, I don't always follow the rules. ;)

You see, the boys were running all out... and finally, after almost one year post-op, Matthew won every race. And in true Matthew style, he didn't gloat, just took it all in as the way life is. Warms the heart. What a way to start the new year.

A fellow blogger suggested an idea to come up with one word that describes what you want for yourself in 2009. (From tip junkie ) I thought immediately of the word Believe. So powerful. 2009 will be a year of wonderous things if I believe it.