Call confirming surgery

Several people have asked me what the doctor said when he called to confirm the surgery.  I recorded the phone call so I would not have problems remembering it and typed up exactly what he said:

Dr. Hardesty Call confirming surgery

We agree that there is a small cavernous malformation in that front part of where your brainstem meets your spinal cord at the cervical medullary junction.  It is a difficult location to get to surgically, but it is surgically accessible.  Dr. Spetzler’s recommendation to you was that it really depends on your symptoms and your level of botherness, how much it bothers you.  If you want to go through with the surgery that’s reasonably invasive, but provides a good chance of getting that cavernous malformation out, we would be willing to offer that to you.

I mentioned that my current neurosurgeon said that I am in a lose/lose situation and continuing to get worse.  The Dr’s response:  We agree, if you are continuing to get worse I think it should probably come out. 

The way we would get there is, the lesion is on the right side just barely, but we would do an approach on the lateral side on the left to get the angle just right to get there. Because if we came on the right side we would have to kind of reach around and so we would actually recommend a left sided, what’s called a far lateral approach.  That’s a craniotomy at the base of the skull on the left side where we take off some of the bone, open up the lining, the dura, and then head towards the cav mal and take it out.  The only thing is that at times we have to take off enough bone that it destabilizes the area between the skull and the spine.  And at times people do require fusion later in life after this kind of procedure.  But we wouldn’t anticipate you needing it at the time of the initial procedure.  But the hope would be to not take off enough bone to cause instability.  This is just a warning.

I asked what is fusion:  that would be putting little screws and rod between the bones of the skull and the neck, kind of like a brace inside.  That would reduce your neck mobility a little bit in terms of nodding yes and no, but not totally.  Again, that is not an upfront thing that is something down the line that might have to happen.   

I asked that I have heard that a lot of time the symptoms you go into surgery with often get worse with surgery:  yes, that is something we warn everybody with a brainstem malformation about.  Over the first couple of days, usually the first three days, you can have some worsening of your symptoms because of the swelling around the area of surgery.  That does not mean that they are permanent by any means, but you can imagine that the normal tissue around where we operate gets kind of irritated that can cause some symptoms for at least a little while.  However, that does get better quickly. 

I asked what new deficits the surgery could potentially cause:  very similar to what would happen from a bleeding episode.  So sensory changes, weakness on the side of the body, perhaps worsening problems with your speech, or with your tongue function, or with your swallowing function, but overall I think the chances of any of that happening are relatively low.  I am betting that if Dr. Spetzler were to see you in clinic and quote you a number he would say you have probably between an 85 and 90% of getting by with no new permanent deficits at all.  

I asked when I can put my contacts back in (I hate my glasses):  in recovery as soon as I feel like it.

Every day that you don’t have surgery is a day you could have a bleeding episode even if it is unlikely. 

If you are from out of state, you fly in and get seen by us in clinic, you also get a new MRI and that MRI is used at the time of surgery for our navigation system – that’s kind of day one.  You go back to your hotel and then the next day or maybe the day after that depending on the timing, you come in early in the morning and that is when you are admitted for surgery and you have surgery that day.  It is sort of an all in one process; it all gets taken care of within a couple of days. 

I asked about Mike staying with me:  When people are in the ICU or on the hospital floor there is a couch in the back of every room and family members are welcome to stay 24/7, at least one of them.  It can be anyone important to me; they do not have to be family.  After 9 or 10 pm it is just one person, but during the day as many people as can fit in the room are fine. 

I think we can do you some good and get this out. There is no guarantee that your symptoms will improve, but certainly we can prevent them from getting worse.  But there is always a chance for recovery as well especially since things have been getting worse recently and not over those last five years there is always potential for recovery in someone who is young as well.

You come in and have your pre-op and surgery the next day, so that is two days right there.  You stay in the ICU overnight, that’s another day, maybe two days depending on how fast you are waking up and everything.  Most people will leave the hospital by a week after surgery.  I tell people to plan on being in the Phoenix area for seven to ten days.  Obviously if you were to have a new deficit after surgery or need rehab or there was a complication, God forbid (yes he said that), that would put you here longer. 

I asked how much assistance I would need when I go home:  I anticipate you would not need much more than you already do.  Again, unless you were to have some new permanent or temporary neurologic deficit and in that case you would probably go to rehab, until you are at that baseline level again.  Most people get back to their normal lives pretty quick.

He does recommend going to dad’s house after surgery for the help they can give me and Mike.

March 14th we are EVICTING Damian!!