willandadri.com

Sooooo such a confusing time.  My neurosurgeon says (via my PCP) that nothing will help the CSF leak and I must have surgery to repair it.  However my MIL’s DO says there is a 50/50 chance it will heal itself.  Google says that depending upon the circumstances most CSF leaks resolve themselves.  Hopefully my chances of not having to have another surgery are improving.  I would hate more than anything to have to go through that again simply because it would feel like the first surgery was a waste of time.  After all that we have been through I am not ready to do that again very soon.  I have also been very nervous the past few days since my neurosurgeon told me (again through my PCP) that there is no real danger associated with waiting and seeing what happens but that there is a risk that my symptoms could come back.  I think he jinxed me because for several days after that my neck has been very stiff and sore in the right neck muscle.  It has even limited my mobility looking to the right a bit so I was worried that they were indeed coming back.  But this morning I noted that the soreness was still here but not as bad and the stiffness is gone.  Also the lump has been gone for the majority of the day and when it was here it was much smaller than usual.  I am trying to stay positive and hoping this means the healing is coming along slowly and we are on the right track.

So just got the call back from my PCP.  She spoke with the PA (and neurosurgeon via the PA).  At this point the neurosurgeon believes doing a head wrap would be pointless.  He told the doctor that I need surgery to repair the CSF leak.  Wonderful.  She specifically asked if there was any danger in waiting to see what happens (such as risk of infection, etc.).  He said there is not but he believes this will not be corrected without surgery and the putting it off increases the chances of my symptoms coming back and the headaches returning.  The good news is she said not to worry about the spinal tap because the results are normal for post-op patients. Sooooo she is giving me the referal to UNC to get a second opinion but based on her conversation with the neurosurgeon’s office it appears there is no alternative to surgery at this point because they have tried what they could and it didn’t work.  What a bummer!

Today was a roller coaster day. I woke up in a pretty positive mood this morning. However, once I got up and moving my headache started to return (though on a very minor scale in comparison to previous headaches). I went back to bed and dozed in and out until around 10:30 when some friends from church arrived and graciously provided us with some food, dessert, and fresh hand-picked strawberries. I sat up and visited with them for a short period noticing I felt groggy but my headache had disappeared.

By the time they left it was time to get ready for a follow-up visit with my neurosurgeon. We actually arrived on time this time! Things became even more positive when the receptionist informed me that I didn’t have to pay the customary $60 copay because all subsequent visits would be lumped under the same umbrella as the hospital and follow-up visits were. Shortly after we sat down we were called back by one of the nurses.

She briefly examined the lump on my head (where the pocket of fluid remains) before declaring that she was surprised I had stitches and not staples, putting some materials on the counter, and informing us she was going to get Dr. Zomorodi’s PA to take a look and remove the stitches.

Dr. Zomorodi’s PA arrived and also played with the lump on my head seeming surprised that it was there. He discussed the symptoms surrounding my headaches and then said he was going to have Dr. Zomorodi come have a look before he removed the stitches.

Dr. Zomorodi arrived and began playing with the lump which he described as a cone. He said that he had only seen this happen once before and it was odd because typically the cone at the top of the stitches dissolves first and the neck gets bigger as the CSF moves and absorbs into the body. My case was the exact opposite with the swelling going down on my neck and remaining constant at the top of my head. We talked for quite a while and he answered many of my questions.  He then said he was going to go take a look at the CT scan and to drop by the office next door after we were done to chat with him.

At this time the PA began removing the stitches.  I had been expecting something horrible given that my skin had started to grow overtop of the stitches.  It wasn’t nearly as bad as I had expected.  I felt some tugging and cutting motions but really only felt a little burning sensation once.  Otherwise no pain or weird feelings as he remoed all of the stitches.  After he was done we headed over to see Dr. Z.  So here goes, let’s see if I can remember all of the details.

So first thing we learned is that I did indeed have a laminectomy. Dr. Z had told me before the surgery he was sure that he wouldn’t have to do a laminectomy based on the MRI but he couldn’t guarantee it if he got in there and saw something different. I just assumed he had not done it since there was no mention of it after I awoke in the ICU and he gave me the report of how the surgery went. However today he went over my CT scan showing me everything that had changed and said he did remove part of the C1 to make things wide enough for the CSF to flow properly and allow him to close and seal the incision.

But back to the headaches. Interestingly enough he thinks that caffeine will help immensely. He asked me if the headache changed or if there was anything I could do to make it better. When I explained that after laying down for 15 – 30 minutes it felt pretty good but anytime I moved, particularly if I sat or stood up, it started throbbing and you could often see my temples pulsing in rhythm with the throbbing. He nodded his head as I was describing this and informed me that it is all related. Apparently when I lay down the spinal fluid pools in one area. Then when I sit or stand up the blood all rushes to my head to try and disperse or relocate the CSF which increases my blood pressure hence the pulsing in my temples. This made sense since I also get a strong head rush if I bend over below the waist such as to pick something up from the floor. He said that he wanted to treat the problem rather than the symptoms so he prescribed me a new medicine to use instead of the Percoset. The new pill has a lower dose of narcotics (he called it a wimpy narcotic) but a high dose of caffeine. Supposedly the caffeine will cause the blood vessels to constrict which will prevent the pounding effect when my blood pressure rises preventing or lessening the headaches. I can’t remember the name of the medicine at this point but will post it once I pick it up. The interesting thing to note is that the brain itself doesn’t feel pain so apparently it compensates by tightening the neck and shoulder muscles which cause pain to notify you that something is wrong.

As far as the cone or pocket of fluid, he didn’t expect it to remain this large but he was relieved that they did him the favor of taking a contrast CT scan because he could verify that it was indeed just fluid and there was no infection present. He showed us on the CT where he had removed the section of bone so that my skull resembled a horseshoe with the bottom portion of the U that connects the left and right sides missing. Where that bone was missing you could very faintly see a dotted line connecting them where the dural patch was sewn in place. Then immediately behind that you could see the bulge or pocket of fluid.

His explanation of the fluid is that when they sew the patch into the dura it causes tiny perforations in the dura caused by the needle during the procedure. Until these perforations are healed the spinal fluid will leak out of the perforations. He also said that the patch and perforations acted as a one way exit allowed the spinal fluid to leak out but not allowing it back in. This explained the pocket of CSF. He said you can tell that the perforations in the dura had healed since the lump was not increasing or decreasing in size (meaning not only was it not letting the fluid back in the skull but was also no longer leaking). The other patient he had seen with this “problem” had the lump for 2 months so with a few people it just takes longer for the CSF to absorb back into the body and disappear. Thankfully he didn’t want to do anything radical such as trying to drain it. He basically said to just wait and watch to see if it goes down and call back in about 5 days to see how I am doing and to especially call if it starts to grow in size. Another option he mentioned is to wrap my head to put pressure on the cone to try and make it disperse or absorb into my body quicker.

After the appointment we went by Target pharmacy to see if the 2 prescriptions had been called in yet.  Ironically enough, they had the 2 prescriptions waiting that Dr. Z’s assistant said she was going to call in.  They tried to convince us that they had been received and filled last night but if so it was done after 5 pm (over 30 minutes after the office had closed).  And another shocker, the 2 that were supposed to come in today from Dr. Z’s office were not there.   Oh well, will take what I can get I suppose.

So long story short, it turned out to be a very informative and exciting day. Just a week ago I was having crippling headaches with no knowledge of what was causing them. I was starting to get scared that I wouldn’t be able to come off the pain medicines. And I was sleeping pretty much around the clock because of the doses of pain medicine I was taking to manage the pain.

Now I have hope for a brighter future. It is an immense relief to know what is causing the headaches so we know how to battle it and know that while this is not normal, it is not serious and there is a light at the end of the tunnel. Also with the new prescriptions I will not have the same side effects in the sense that I won’t be drowsy. I can go back to the normal routine after hospital release of sitting in bed playing around on the laptop trying to get some minor things I had been putting off done. And you can’t even imagine what a relief that is.

so we’ve determined –

the size of the bump is directly proportional to the size of the headache.  will’s fluid filled “bump” on the back of his head was monitored by ct last friday and it was determined that it was just a fluid filled pocket, and nothing to be alarmed about – that it would just go away on its own.

however, it grows and shrinks just according to how it feels every day of the week and every hour of the day.  however, the one thing we are sure of is that the size of the bump correlates to the intensity of the headaches that will suffers from.  unfortunately we do not have the magical morphine at home to help keep these headaches at bay.

fortunately tonight we did know that we needed to attack this thing with pulled curtains, silence, extra flexeril, extra arnica phosphorus, arnica montana, coca-cola, a lavender scented candle, and lots of love.  luckily i think we knocked it out of the park.  hopefully it will stay that way.

large thanks go out to will’s cousin lisa white for our scrumptious dinner this evening.  lisa stopped by tonight with a tasty chicken cheesy casserole, tortilla chips, and red white and blue cookies.  thanks to her for keeping me away from the kitchen, out of the dishes, and husband’s belly full of goodness!  hugs to lisa!  we owe you big!

we found out this morning that we have a follow-up appointment on wednesday at dr. zomorodi’s office at 1pm.  they are going to evaluate the incision, see if stitches can come out, discuss the scarring, and the BUMP!  hopefully we can get will some better pain management, and some answers to the things that have been plaguing us recently.  get this bad boy under control!

apparently i was such a sad sack yesterday i’ve convinced my poor momma to come to town for a few days to help me get things under control.  she’s such a sweet little thing to come and help me, i just feel bad that i am 32 years old and still need her to come bail me out.  however, either way i can’t wait for her to get here.  sometimes when you have all of this pressure on you, you just like to be a little kid, if even just for a moment.

So I haven’t had a chance to post very much because I just got home from the hospital yesterday after completing surgery.  I decided rather than post one long massive posting with everything I can think of I will try to make it a little more organized and make multiple smaller postings by topics.  That way I can work with my ADHD and stick to topical discussions rather than let my mind wander and get sidetracked forgetting important notes I wanted to record.  More to come shortly …

surgery went amazingly, perfectly, remarkably well.  dr. zomorodi came out to give us the good news just about 2.5 hours after the surgery initially began.  we were elated to hear that everything went according to plan and that it was already confirmed that will’s spinal fluid was once again freely flowing.  they let us know that will was moved to the icu and shuffled us from the 3rd floor waiting area to the 4th floor waiting area.  we’d had an outback steakhouse style pager throughout the entire process that alerted us when he was ready for visiting pre-op, when he was given his second round of anesthesia, when the surgery began, when the sutures were being put in, and when the surgery was over.  we carried this little pager with us up to the 4th floor and waited for some buzzing action to go see our surgery survivor.  after about an hour of us being impatient i checked with the nurse who told me will was ready for two visitors.  lori and i gathered up all of our worldly possessions (including and not limited to a rather large bag that weighed about 400 pounds) and made our way back to the icu. 

we found will laying peacefully in the bed in the icu, looking as great as usual and were surprised how wonderful he appeared.  he seemed to be dealing well with the medications, morphine pain pump, and other drugs the attending nurses were supplying him with.  he rested well and immediately fell in love with some lime sherbet.  the nurse made sure he had an endless supply and i stayed with him until they kicked me out for the night.

the following morning i showed back up at 8:30am as soon as visiting hours began and found will sitting straight up in the bed munching on some breakfast.  i thought he was doing pretty good to be eating scrambled eggs, but it was not until about 30 minutes later that i found out he had already scarfed down some bacon and home fries!  that boy was hoongry!  he did well throughout the morning and they got him up and walking a lap around the icu before they determined he was ready to move to a regular room around 1pm.  they asked if he would like to be driven in his bed, or walk over to the new room and he decided he was good enough to walk, so off they went.  lori and i tagged along behind him lugging our 400lb bag and everything else we’d seemed to accumulate over the past 24 hours. 

we arrived to will’s new room – 4130 on the same floor as the icu, just around a different wing.  we got will settled in and tried to get him comfortable.  he seemed to be doing okay for a while, but then his morphene began to wear off and the pain began to escalate.  a group of 1st year med students dropped by to ask some questions and learn about patient-doctor relationships, and we allowed them to sit and chat for about half an hour.  after this visit will really felt his condition was declining even further and we then had to try and seek some additional attention from our nurse.  unfortunately the pain combo they first attempted was not putting a dent in the pain and the pain had risen from a 3/10 to a 9/10.  will felt frustrated and irritated in the lack of time of the response and the pain he was feeling.  luckily a new nurse came on board around 7:30pm and sat and listened to our frustration and got will on a new pain combo.  his new medicines are working much better to curb the pain and he is now settled at a 3 – 4 out of 10 for the most part.

he’s been up walking two laps today and has gone up and down three stairs to prepare him for getting into the house.  the nurse removed the original gauze bandage and replaced it with a new bandage.  will’s scar is sutured with nylon stitches and looks perfectly healthy.  the incision measures about 5 inches in length and extends about 1 inch past his hair line. 

we’re staying on top of his pain meds and keeping him perky with piles of delicious treats from the cafeteria and around the durham area.  he’s received 4 flower arrangements and two balloon bouquets that brighten up his room and help him keep focus on the healing process.  he attempts his neck exercises and works on them as much as he can while his pain meds are in full effect.  so far so good.

he’s been a trooper, cracked some jokes, and looks like a precious doll resting in his bed.  so proud of all he’s done, the pain he is dealing with, and the grace in which he has handled it all.

I went back with Will and Matthew for a pre-surgery prayer session. Will found comfort in the calming words Matthew offered. I stayed with Will until the first series of anesthesia cocktails were administered and they took him off to another pre-op waiting area where the breathing tube and head confinement gear would be put in place. We were just paged again and informed that the surgery is now underway. We’ve been here since 9:30am and they tell us that Will should be done with his surgery and in the ICU recovery afterwards. Lots of nervousness and jitters were in place for both Will and myself this morning, but we know that God has everything under control and that we will have him resting calmly soon and on the road to recovery in no time. Thanks to everyone for your continued love and support. Will update you as soon as we get more information.

So as you may notice I am jumping around in the time frame a bit.  I decided to post smaller topic specific entries so they can be digested by the reader in smaller more meaningful chunks.  This will also help me work with my ADHD and ensure that I do not forget to post something important to me because my mind wandered off on a tangent as I changed topics.  You will also notice a common theme in most of my postings.  My emotional journey was very diverse and my mood could change quickly for no apparent reason.  Many people will feel this way and it is completely normal for what you are going through, I just tried to make sure I allowed myself to accept and experience these feelings instead of bottling them up.

So the day before surgery arrived and was met with both excitement and anxiety.  I was sad because we were leaving the beach and I knew I would not be returning until September.  I was excited because we were going to pick up Lori at the airport in the evening and it is always a blast visiting with her.  I also felt anxious because it seemed time was slipping through my fingers so fast.  I still didn’t really know what to expect for recovery from the surgery but it seemed as if each step we took (leaving the beach, calling the surgery hotline, picking up Lori at the airport) seemed to happen at a steadily accelerating pace propelling me towards the dreaded surgery as time passed in a blur with events happening merely in my peripheral vision.  I started to panic feeling as if I was not ready and not prepared but surgery was looming ever closer on the horizon and there was nothing I could do to make the situation any better.  I tried to simply hold on tight, keep all the pieces together, and not fall off the ride as we zoomed right along.

Shortly before I was to call the Duke hotline they called me.  I was requested to arrive at 12:30pm the next day to check in for surgery. While I felt very relieved to finally know when the surgery would be taking place, my anxiety level also increased as the whole experience was made more real.  We distracted ourselves by sending updates via telephone, Facebook, and email to notify friends and family of when the surgery was anticipated to start.  I then got online to look up Lori’s flight information and received a text message from her saying she was delayed just as I saw the delayed status online.  Her flight leaving Chicago was delayed and she was stuck on the tarmac at Detroit waiting for them to find another pilot as the primary pilot called out sick with the flu. I called the Pit and explained our situation and they were kind enough to allow us to bump our reservation back by 45 minutes even though their website said there were no more reservations available for that day.  We left and picked up Lori at the airport before continuing on to the Pit for a fabulous dinner.  More sadness set in once we were seated as I realized this was my last meal before surgery.  They were out of the beer I had wanted to try but I was able to select a 2nd one with no problem.  They also told me they were out of the meatloaf that I finally decided to try after eying it the past few times we came to the Pit but after I gave him the evil eye the waiter said he would go check and returned with good news.  We enjoyed our dinner and catching up and just being in this moment of normalcy before the unknown began.  Once we returned home it was time to take a shower using my own shampoo and some special anti-bacterial sponge provided by the hospital.  After the shower it was past midnight so I was no longer allowed to eat or drink anything and went to bed knowing I needed the rest but wishing that sleep wouldn’t make the next day come so soon.