Sutures Be Gone!!!

This morning Dana and I headed into the Huntersville office of Carolina Neurosurgeon and Spine associates to have her sutures removed.

The procedure was a success and outside of a few stray hairs getting sacrificed all the sutures are now gone.  The wound has healed nicely and every nurse/Dr we see always comments on how small and nice it looks (compared to others they've seen).

Our nurse told us that once we were done she was going to email Dr Deshmukh as she said he has been wanting to get an update on Mrs Degan.  Even on his vacation Dana is still a priority which is a great feeling to have when your the patient.

Our next follow up won't be until April 11th and that will be 5 weeks from our 2nd surgery.  During that check up we will hope to get the thumbs up on Dana being able to do normal/everyday chores/activities that she has always been able to do (especially the Lake Norman sale of Green Jeans...curious, investigate here: http://www.greenjeanssale.com/home/ ).  

So, here are some awesome pic's of Dana.  As you can see, she looks absolutely stunning.  Hard to believe that just 2 weeks ago she just got done with 2 brain surgeries...crazy.

Lastly, I wanted you all to know that our door is open to visitors all day long.  Now that she is feeling better and doesn't require as much sleep as before we can substitute that sleep with great company and gossip.  If you can swing by for a visit, you'll be more than welcome to hang out and catch up with us --- just drop me a line or email me and we will hopefully see you soon.

Dana's New Brain Images

We got the copies of all the imaging work done during the process today and I put together a couple screen shots of what the before and after looked like...enjoy.

Oh yeah, tomorrow we get to remove her sutures finally (2 weeks) and she is doing amazing.  The girls and Dad being here have helped out a lot and I don't know what I'll do without these guys to help wrangle her down from doing anything she isn't supposed to.

I'll figure it out....

1. Bleed event at the end of February, before surgery.

 After 1st surgery - note the tunnel to the cavernoma, however you can still see a cavernoma is in there!

After 2nd surgery - you can see the tunnel and this time there is no cavernoma present.

Girl Time

The 2nd battalion of troops have arrived and all is well.

Seeing that Dana has been relegated to not doing anything except chatting, enjoying the outdoors via a walk or sleeping (at a minimum of a 45 degree angle) this couldn't have happened at a better time.

The girls arrived at the house yesterday and we enjoyed the day up at mom's.  We took the pontoon out and explored a few coves and afterwards it was time for a nap. Today we spent all day outside since it was absolutely amazing --- light breeze, blue skies 70 degrees...amazing.  We ended the night with an awesome dinner that the girls put together and the finale was Dana being able to play a board game (Rummikub).  

This past Friday we learned from Dr Deshmukh that Dana was allowed to play board games.  The only warning he gave us that she was not allowed to get upset if she was terrible at these games.  He warned that she may be a little slow and if she got frustrated she needed to blame me (I'm still not sure how that happened).

Lastly, the spinal fluid hasn't increased anymore from what it was earlier in the week.  This coming week we get to remove the sutures (on Wednesday) and if all goes well we are hoping she'll be allowed to sleep flat again.  

Fingers are crossed...

Doing-A-Ok

Little update for you all.

Dana has been doing great and our little spinal fluid leak has toned down a bit after our Dr told us that she had to sleep between a 45-90 degree angle.

That sucks, plain and simple.

On the flip side of things the Dr orders did give me an excuse to buy a new recliner for the man cave.....

Unfortunately for me Dr's orders says she has to sleep at least 45 degrees for another 7 days.

Spirits are running high and having her mom around this week has been great. Because Rita has been helping out I've been able to catch up on work. Working from home is a bit hard to adjust to at first; however after the second/third day things came together.

Rita is flying home Sunday however the next battalion of troops are inbound from afar. My dad is coming in from Alaska and a couple of Dana's sweet friends are coming from Wisconsin. More help is a great thing and although each day is getting better for Dana I feel it may be getting harder on her personally.

Its hard for her to accept she needs to rest, cant do certain things, etc all day long even though she feels just fine. Although if she were to do those things she would quickly know that it was a bad idea. Slow and steady wins every time when it comes to the brain healing. Dr Deshmukh told her that if she does this first 4 weeks the right way she'll feel great and be on track for doing a lot of normal things in week 6. If she doesn't....6 weeks could be 8.... And that would really not be fun.

As you all can see she is doing great, can't even tell she had 2 brain surgeries!

The 2nd Surgery

Sorry this has taken a while to get to but I've been playing catch up for a while now.  Here is what occurred for us to have a 2nd surgery for Dana.

During 1st Surgery

During the 1st surgery, Dr Deshmuhk entered Dana's brain from the right side of her head, just above the ear.  The image to the left (hand drawn...sorry, not exactly a lot of images on Google that have what we were looking for) is of the right hemisphere of the brain but it's inverted (b/c that is how they do things).  The incision is around 3 inches long, no hair was removed and they did not have to do a controlled break of her jaw in order to get access to the brain.  After reaching the skull, a hole the size of a nickel was made and they entered the brain.  After tunneling through the brain they reached the void that the cavernoma made.  Upon entering this void, a large amount of very old blood came out. After that they could see the cavernoma but it didn't look like the  raspberry...instead it looked like a carpet of blood vessels.  He believes that the cavernoma popped during the Scotland event and that is why a bunch of blood vessels were lining the voided area like a carpet.  He proceeded to remove the cavernoma/blood vessel carpet, remove the old blood and then cleaned the brain.  Some of the brain was yellowed, that happens after the blood rests on the brain and the iron from the blood leaches into the brain.  Iron isn't good for the brain as it promotes seizures, so we had to get that out of there.

After 2nd Surgery

Dr Deshmukh was pleased with what he saw in this cavity after the void was clean, he could see the water canal/column/ventricle (all the same thing) as well as the carotid artery.  After inspecting the area, he did not see any more cavernoma on those two important pieces and that was very good we didn't have to touch those things.  The ventricle is circled in blue and the artery is in red.

The next morning, we had to do a MRI/CT scan so he could triple check that the cavernoma had been removed fully.  

After reviewing the imaging the cavernoma was still there in the area and he was shocked by this.  The only explanation was that the cavernoma had split and grown behind the ventricle membrane at some point in her life.  Based off of how large the cavernoma was there initially there was no need to break into the ventricle and explore in the brain...you just don't do exploratory surgery on the brain.

Dr Deshmukh explained to us in great detail what the situation was and gave us the option of going in a 2nd time or not.  The reason we opted to do the surgery again was b/c this remaining portion could have bleed in a week, month, year down the road and we'd be in the same exact spot we were in a few weeks ago.

We were so close to giving Dana a cure for this that we did not want to walk away.  

The risks were just as much as before (seizures, brain swelling) however because he had to go into the ventricle we were unsure how far he had to go in there to remove the cavernoma.  Also, once breaking the membrane to get inside the ventricle was done, there was a risk for spinal fluid leaking excessively (little bit is fine, a lot not so much).  Lastly, the carotid artery was in the general area too which is kind of a big deal.

After being told all of this and instantly being in shock we knew the right answer was yes, let's do it.  As quickly as we said yes, Dr Deshmukh had everything ready and we were whisked away into the OR and in 45 minutes we were having brain surgery...the same exact position we were in the day before.  

They went into the same exact way they did before, he opened up the ventricle and there it was. That cavernoma/son of a bitch was hiding behind the membrane and was quite large in size (almost as large as the portion that was in the voided area).  After removing what he could see he saw that the cavernoma was wrapped around the carotid artery.  This obviously isn't a good thing as this artery controls the left side of the body and any issues/complications from removing the cavernoma could result in paralysis....a catastrophic event.  He also told us later he felt this artery had a fissure vessel supplying the cavernoma with blood, this alone was not a good thing and amazing not terrible happened before (aneurysm). If that wasn't enough, there was evidence of more blood touching the brain as the Hippocampus was yellowed with iron deposits as well as another portion of the brain (can't remember if it was the Amydgala or Medulla).  He had to remove brain from these parts and that has it's own risks as well....short term memory, vision and personality.  Those components will heal in full over time so anything we lost should come back eventually....minus the personality.  An hour and a half later, Dr Deshmuhk spoke to me about the surgery and informed me of how much larger this cavernoma was.  They underestimated it and unfortunately there was no way to tell this until going through the first procedure then doing imaging afterwards to see if they got it all.  He told me that after the surgery he followed Dana to the recovery room and waited there with her until she woke.  After doing so much in a sensitive location he had to make sure she was OK.  She woke, he asked here some questions, she responded, before he could ask her to move her left arm she raised it...a sign of relief.  If that wasn't enough, Dana apologized to him for having a cavernoma.....must have been the drugs right?  Now it was time to make sure she was who she was still.  I went into the ICU room with my stomach in a giant knot.  I got to the doorway....she saw me and said, "Mark".

Dr's Orders

When we went to see Dr Deshmukh this afternoon (Dana, Cindy, Rita and I all went together) Rita asked the all important question of what she can and can't do.

Of the items that he went over he said he didn't want any use on the computer, TV or checking Facebook/email/text on her phone.  

That being said, if anyone would like to send pic's, etc chances are she isn't going to be able to check it until several weeks from now.  At the same time if you want to call her then call her phone and she can talk all day long; or at least until she wants a nap.

Soooo, we are putting away the computer and turning off the Facebook on her phone until we can get back into the swing of things (hopefully a couple weeks and not a month).  

We know all of you want to reach out and keep in touch so that is where I can come in and help out!  Any messages, notes, etc you want to send her way then please send to me and I will let her know right away.  If you don't have my phone or email address here is my email = markdegan @ yahoo . com.  Email me then  I'll send you my phone number if you'd rather do that instead. 

Yes, this sucks BUT it's temporary........and if you didn't know already Dana's favorite part of the day besides breakfast, lunch and dinner is checking the mailbox so a letter would be great too.

Thx for understanding and don't be offended if you send something her way (facebook, text, email, etc) and don't hear anything....she can't check it anymore.

A Sigh of Relief....

We just got back from Dr Deshmukh's office and are feeling better than we were earlier.

Here's the deal with everything from today.

There is a Spinal Fluid Leak.

However, as of today the leak isn't bad at all.  If it was bad, it would be a stream of fluid coming out of her nose.  

At the office Dr Deshmukh tried to induce this by tilting her head down for 5 minutes.  Nothing.


We had a CT scan done at the hospital b/c CT scans are excellent for seeing fluids.  After
reviewing the scans himself and with his peer's they were relieved.  If there was a problem the
fluid would be seen in the skull just behind the ear.  The bone in that area has a lot of air pockets
in it (insert joke here for being an airhead!) and the pockets were still all looking great and no
fluid was present.  If the leak was bad then we'd see it in there for sure and there wouldn't be air
pockets.

Where is this fluid coming from?  

Red circle = ventricle, Blue circle = Hippocampus

It's coming from where we had to enter the water canal (water ventricle) during the 2nd surgery in order to remove the cavernoma that split off and hid behind the water ventricles tissue surface (i know, more coming on the 2nd surgery process tonight I promise).  They patched this with a sponge/foam plug; however fluid can still get out and once it passes through the tissue wall the pressure of the right temporal lobe will help keep it in place, after that the membrane that encapsulates the brain holds in fluid and finally your skull stops any fluid from leaching out.  In our scenario the fluid is following the path of least resistance and that happens to be the route that they went in for the surgery.  Once the brain heals though it will not drain anymore.


Is this fluid bad?  It is and it isn't.  The body produces around a pint of spinal fluid a day and it is used in the brain/spinal cord for a number of things --- it's very important and useful.  The brain absorbs this fluid normally so the fact that it's in the brain cavity is just fine.  It's only bad b/c if a fluid is finding it's way out of the brain and going into her nasal cavity and draining into the throat/nose then that means things can go into the brain --- specifically infections like meningitis....not good.  

How to we fix this?  If the leak stays the way it's leaking today then chances are the brain will heal itself via the scar tissue.  This however takes days/weeks to heal and it may not heal quickly enough.  If the leak starts to be more prevalent then we can fix it without doing an invasive brain surgery!  We can fix it via an outpatient method where they go in the same route they went for the surgery.  They go through the skin and the muscle in the jaw until they get to the bone around the back side of the ear.  Once they get to the bone they cover the bone with beeswax?!?!  This will seal the last line of defense (bone) for holding in fluids.  There is a small risk for infection however like with anything it's minimal.  This works very good b/c the bone is porous and not solid.  Liquid can slowly/surely work it's way through it and if we seal the outside of it then it can retain/hold it in where it belongs and block other bad things from getting in.

We can minimize the amount of fluid as well if we have her sit in between a 45 and 90 degree angle over the next few days until scar tissue can form over.  That means she is going to have to sleep in a recliner (we don't have one yet but I'm working on it).  Dr Deshmukh will call us in the morning to get a report on how things are going and if the fluid is draining out quickly or not.

So as of right now it's not as bad as we thought initially.  If it does increase, we can fix it without being too invasive.  There are still risks but minimal when compared to where we were last week.

Thx for the thoughts and prayers so much - it does help so much.  I'll try and put together a illustration on what Dr Deshmukh did on the 2nd surgery that they couldn't see/do the first time tonight.