6 months and Going Strong!

Well, our 6 month "zipperversary" has official come and gone.  I thought it was only appropriate to write an update since I totally spaced writing an update after G's follow up MRI in October.

Quick overview of G's 3 month follow up with MRI from October:

Scheduling this appointment was a bit of a hassle.  I was jockeyed between a few different people in the office and seemed a little disjointed.  I later found out they had just hired new office staff, and miscommunication may have caused the majority of the issues.  Finally, G was given an appointment and subsequent MRI almost 3 months to the day of surgery.  I was very disappointed that we were not going to be able to see Dr. Mangano, but his Physician Assistant was very very good.  She was able to pull up the before and after MRI scans and the difference was quite impressionable.  However, even after surgery, G still has a fairly severe herniation, but her CSF flow is better.  Remember, her herniation was 21mm upon diagnosis, so even with the best decompression results, it would only decrease it, not resolve it altogether. Her CSF flow is not perfect by any means, but much, much better.  There is less compression of the brain stem as well, which is very good news.

All in all, the procedure worked as it should have. It have the cerebellum enough time to heal, and everything seems to look as text book as it can.  We were very relieved to hear this news. 

Below, you can see the before and after MRI scans.  I have highlighted the area that has the most noticeable difference.  It is truly amazing how much of a difference that a few millimeters will make when it comes to brain and CSF compression!

So, how is she doing?  In one word... Great!  Her recovery has been text book, and honestly there are now days that I forget anything even happened.  And I believe she has these days too.  Her incision has healed wonderfully, and her hair is a good 2-3 inches long around the site.  I have to look for scar as it is almost completely obscured by the hair.

Symptom update: She has improved immensely in the last 3 months.  Numbness, tingling, and weakness have continued to be resolved, and have not reappeared.Her headaches gradually have improved, and are down to 1 every 1-2 weeks.  This is such an improvement I cannot begin to express how thrilled we are for this progress!  The main symptoms she continues to have is the ringing in her ears.  As I mentioned in previous posts, we did not expect this to resolve, but was hopeful after she woke up in ICU reporting there was no ringing.  She does mention that the ringing continues to change. Currently, it is louder, and a lower buzzing that changes frequency throughout the day. At times, the "booming" still occurs, but not as often.  She has lived with this type of sound all of her life, and does not seem to be bothered by it.  For this, I am grateful.

Dr. Mangano has left most of her restrictions up to us.  He heavily recommended no roller coasters, trampolines, or contact sports.  These can cause whiplash type injuries that may trigger additional symptoms.  I do have to share a quick story about this...

Well into G's first semester of school, all students who behaved in accordance of the school's behavior policy were rewarded with a surprise party one day after lunch. I had received the email alerting parents to this party, however they did not elaborate what would be included in this party.  As I dropped G off at school, I told her that she will have a surprise after lunch, and to have fun.  Unknown to me, a bouncy house had been rented for the party, and was the focus of the surprise. G, thinking that I knew about it, had fun bouncing around.  After school, she said she couldn't believe that I was OK with her participating in the surprise bouncy house.  To say the least, I was shocked to hear of it.  I asked her how she felt afterward, and she mentioned that it did give her an 8 headache for about an hour afterward, but recovered with a dose of ibuprofen.  So, lesson learned- Even though your 7 year old knows what he or she is supposed to do, they will do it anyway, especially when they think they have your blessing. 

Let's talk restrictions for a moment.  I am very glad that G is rule oriented, and that she will, more than likely, obey all restrictions placed on her.  She understands the need to be restricted and the relapse of symptoms that could occur if she were not to follow them.  I cannot imagine the frustration and concern parents have when they have children who are too young to understand, or those who choose not to obey them.  We have chosen the non-helicopter parent mentality, but have fully educated G on the consequences of her future choices.  Restrictions we have placed on her follow Dr. Mangano's suggetions.  No roller coaster, or jerky rides, no rowdy or contact sports, no bouncy houses or trampolines.  Thankfully, she has taken a liking to Chess Club and Theater, so she has extracurricular activities without the risk of much head trauma. Our true test will come later this year when we head to an amusement park that will tempt her.  I am curious how she will handle this, but we intend to do many other activities and lower risk rides.

School has been going very  well.  Everyone at the school has continued to be very supportive. Up to very recently, G has been using the custom ear plugs during lunch. Now, noise is much less of a concern for her.  We continue to drop her off and pick her up from school, and will more than likely continue to do so through this year.  We will begin the bus routine at the start of next year.  She is eager to get back on the bus, so I will probably relent in the fall. Her school nurse visits have pretty much diminished with an average of 2 or so visits per month.  These visits are typically due to a headache being brought on by an external source, such as bumping heads with someone, or looking down for extended periods.  She began PE in November, and she seems to be doing well.  The PE instructor does a wonderful job observing the students and pulling her in a direction with less risk.  I have no worries about this at all.

We return to Cincinnati  in July for her 1 year appointment.  I was clear that I wanted to see Dr. Mangano during this follow up, and they were happy to oblige. We can only hope and stay positive that the MRI continues to show improvement or at least static information.  With her being so young, and still has a ton of growing to do, we do not know how that will affect her Chiari. Only time will tell.

I have to give another shout to all of the support our family has had in the past year.  What a crazy, whirlwind year, and it was bareable due to the wonderful support from everyone.  People continue to text, email and stop by and ask about G.  And I am always thrilled to tell them how well she is doing.

For all the parents out there reading these posts, know that you are constantly on our family's mind.  We were there, with the same deer vs headlight eyes and I only wish I had a blog similar to this to read.  I wanted to hear the good, positive stories, and to follow along with a family who has gone through the journey that we were only starting.  Lord only knows, you hear the scary, unfortunate stories everywhere.  Do not get me wrong, they are important to tell and to hear as well.  But along with everything else in the world, moderation is key.  If you hang heavy on one side, it could set you up for failure no matter the outcome. Arm yourself with knowledge of the good stories as well as the bad, and you can't go wrong.

8 Weeks Post Op and Counting

I said in mid-July that I could not wait until September/October.  Not because of my usual excitement for football, or bonfire weather, nope.  But, because I knew that this was the time frame in which we would be over the post-op hurdles, and back to as normal of an everyday life as possible.  So, when I realized that G would hit the  8 week mark this coming Wednesday, I was relieved.  I don't know why, but the 8 week mark, in my head, was the freedom date.  Not from restrictions, or from symptoms, but from the constant worry of whether our decision was the right one.  The memory of sitting in the Pre-Op room seems so long ago, yet so recent.

I am amazed everyday how well G has done during recovery.  Since school has been in session, I have only been called to the school a handful of times, and these calls have decreased dramatically in the last 2-3 weeks.  She has only gone in once late due to symptoms, and has been picked up early very few times.  My fear that she would miss out on a major part of the first 9 weeks was, in relief, unfounded. 

Symptom update:  G's symptoms are, by no means, gone.  They are different, and less severe, but I am concerned that we will never quite win this war.  Her leg weakness is gone, and her falling spells have disappeared, which helps me know we made the right decision to choose the surgical option.  However, her headaches are still present, and I am not so sure the frequency is better.  Severity scale is better, but she still complains of headaches on a routine basis. I am hopeful that these will continue to decrease the farther from surgery we get. Most headaches are caused by an external source such as loud noises, over doing activity, or looking down too long.  Only occasional headaches come on with no warning or external source, which is an improvement from her pre-op complaints.

Her ringing in the ears has been the most interesting symptom to watch.  And, frankly, I do not know what to make of it.  She went into surgery with a steady ringing sound in both ears.  In ICU, the day after surgery, she reported it being completely gone. But as the recovery period has proceeded, it has come back.  But now, instead of a steady ringing, she reports an alternating higher and lower pitch every few minutes and a loud "booming" sound a few times a day.  Occasionally, she describes the sounds around becoming louder and deeper, then return to normal.  As the healing process continues, I expect this particular symptom to evolve. And I truly hope, with every ounce of my being, that it will resolve.  

We return to Cincinnati at the end of next month for a follow up MRI and appointment.  This is when we will know for certain if the surgery did what it was supposed to do both physiologically/anatomically.  I have talked with many other Chiari moms, and a large number have gone to this visit expecting a 100% fix, but they find that the healing process has gone slightly wrong.  In some cases, they may need additional procedures or therapy.  Others are watched more closely with more frequent MRIs.  I hope we are in the minority and find that the surgery gave her cerebellum enough room to heal, and her spinal fluid is flowing freely.  Until then, we will continue living a crazy, busy life and having fun.

-SCM :)

Incision Photos

As promised, here are the incision photos in order, with a short description of each one.  I have added a few lines of spacing to allow anyone who does not want to see these photos, to exit. :)

Food for Thought: We were instructed to wash it everyday until suture removal and were told at our NS follow up that they can always tell the patients who have followed these instructions. Suture removals are much easier and less painful if instructions are followed. It seemed to work for us.


Scroll->

Scroll->

Scroll->

Scroll->

Scroll->

Scroll->

Scroll->

Scroll->




Post Op Day 2. Bandage removed approximately 44 hours after surgery.

 

 

 

 

 

Post op Day 5

 

 

 

 

 

 

Post Op day 6. We began to see some redness and slight puffiness appear at the very bottom of the incision.

 

 

 

 

 

 

Post Op day 8. Redness is increasing, but only around the sutures.  Watching it closely, but no drainage or excessive tenderness.  G is beginning to complain about itchiness.  She likes to have the water run over in the bath to help with the itchiness.

 

 

 

 

Post Op Day 10. Redness is very pronounced now, but still only around sutures and no drainage.

 

 

 

Post Op day 12. Redness is somewhat subsiding.

 

 

 

Post Op day 14.  Day of Suture Removal.  Confirmed with office that the redness was a local reaction that will improve now that sutures are out.

 

 

>photo<

 

 

Post Op Day 22. At about a week after suture removal, the puffiness and most of the redness is gone.  Incision line is still tender, but able to use a very soft brush with shampoo during the bath to remove the remaining scabs.

School Nurse Instructions

I want to provide the outline of our If/Then statements that I sent in to our school nurse.  I tried to be as detailed as possible when writing these, and included symptoms that G has never even had, just in case. This has been copied and pasted from a Word document, so I apologize if the formatting does not work with your interface. 

August 7, 2014

School X Nurse Office

Re: G DOB: xx/xx/xxxx
 

Upon returning to school, G may have residual symptoms given her recent Posterior Fossa Decompression procedure on July23rd due to her diagnosis of Chiari Type 1 Malformation. Below are a list of symptoms that she may have, and what I request happen if these complaints occur during the school year.

 

Headache with pain scale of 1-4	·         Lie down for 10 minutes to help alleviate symptoms. ·          If no relief, give 320mg Tylenol. ·         Call Parents if headache lasts longer than 30 minutes.
Headache with pain scale of 5-10	·         Give 320mg Tylenol ·         Advise to lie down ·         Call parents
Pain or Tinging in Extremities	·         Lie down for 10 minutes to help alleviate symptoms. ·         If no relief, call Parents
Dizziness	·         Lie down for 10 minutes to help alleviate symptoms. ·          If no relief, call Parents
Neck pain or stiffness	·         Give 320mg Tylenol ·         Advise to lie down ·         Call parents
Any swelling, pain or discharge at incision site	·         Call parents
Confusion, light headedness,	·         Call parents
Seizure, Dyspnea	·         Call 911 ·         Call parents
If she presents to the nurse for any reason	·         If call is not warranted, then please send a note home with details of visit.

 

Please use the following numbers, in this order to contact parents:

·          555-555-5555

 

If you do not reach us at the above numbers, please use numbers below:

·          555-555-5555

 

Post Op school tips and tricks

As the first week of school comes to an end, we have had a steep learning curve. I want to offer the tips we learned and to help you know what to think about before you send your kiddo back to school post-op. 

First, think about school bus riding.  This was a restriction I placed on G right away.  I dropped off and picked up each day this week to eliminate any extra bouncing and roughness.  I was also concerned with the elongated day if she were to ride the bus.

Secondly, be aware of their noise sensitivity.  We had thought about it in terms of home life, but didn't dawn on me to plan for the noisiness of school.  Fire and tornado drills were discussed at my school meeting prior to school.  But, HELLO, what about the lunch room, you know, the nosiest place in school, and possibly the planet?  I had to come visit the school after G's lunch on the first day because the elevated level of noise in the lunch room caused a level 6 headache. The headache resolved with rest and she was able to return to class.  Our long term solution is still being worked out. I bought a custom ear plug kit from Amazon (link here), and the mold itself worked well, but I don't think I have the skill to successfully produce usable ear plugs.  Once at school, she could not insert them into her ear, and neither could the nurse.  I have enough to try one more set, but if those do not work, we may need to go the professional route.

Thirdly, the bright sun during recess caused a headache for G during her first day.  This had not been a problem before school, but I have noticed that she has been closing her eyes on her way home due to the bright light.  I am not sure what to make of this.  Our resolution was to leave a pair of sunglasses at school for times she is outside. She is currently enjoying quiet recess inside with a buddy, so she is not routinely outdoors during the school day.

Fourth, The collared shirt, oh the collared shirt.  I am still running for mother of the year since I placed my newly decompressed 7yo in a nice collared shirt for her second day of school.  It didn't even cross my mind that the collar would rub the bottom portion of the incision.  So, back to school I went with a backup shirt.  As a side note, I obviously do not learn quickly, because the shirt I laid out for the last day school... You guessed it, another collared shirt.  I do wonder about my sanity sometimes.  Luckily G caught it. :)

Fifth, Be open minded about their desk.  G's school supplied a type of tilted area on her desk to elevate her work so she would not need to look down and cause a kink in her neck. After her first day, it was obvious that it was not elevated enough.  I sent in the laptop desk from Amazon (link here) that was working well at home. This allows it to be positioned at, pretty much, any angle and height required.  We are going to try this for about 5 school days, and if it continues to work as well as it does, then we will buy a second one for home. 

All in all, the first week has gone well.  I am super glad that it was a shortened week!  G was picked up early one day due to a level 6 headache with dizziness that was not resolving. But the other times I have been called to the school, we determined that she could return to class. The school nurse has been wonderful about contacting me each time G visits the nurse's office.  She is averaging 4 trips to the office and 1 dose of Tylenol per day.  Most headaches are relieved by resting and an occasional dose of Tylenol.

2 Week Post Op Appointment Update

So, I have been reprimanded by a few folks for not updating our blog after our appointment.  Ooops!!  

We returned to the outpatient NS department last Wednesday. We were scheduled with the Nurse Practitioner who was very impressed with how the incision was healing.  I, personally, have been very happy with it, however the portion at the very bottom was becoming a bit more red and irritated than I wanted to see. But she confirmed that it was more of a local reaction to the sutures, and as it turns out, after the sutures were removed, the redness has almost disappeared.  Quite honestly, when she goes to show someone her incision, it is very hard to see.  Her hair has grown in so quickly, that it hides all but about ¾ of an inch.  I will post progressive pictures in the coming week to help future parents and patients see how G’s incision looked during recovery.  

The nurse practitioner released most of G’s restrictions.  At this point, there is no gymnastics, trampolines, PE, rambunctious recess, excessive running/jumping or horseplay.  She is able to leave the house now as tolerated and she is to increase her activity slowly over the next 3-4 weeks.   I think the hardest part of this will be the ‘slowly’ portion.  She feels so good that she doesn’t remember this word during recovery.  If you had told me 2 months ago that we would be sending G back to school with the remote possibility of a full first day, I would have looked at you as if you had two heads. Now, as the first day of school looms, that is exactly what we are doing.  

I met with the school before surgery and again as last week.  We discussed G’s initial needs, and they are most willing to provide needed services.  A few things we discussed follows.  I will be dropping her off and picking her up from school initially.  I do not want her carrying a heavy backpack each day, so I will walk her in the first few days. We will work out a system so she won’t have heavy items each day.  She will not be attending Gym class.  Rather, she will be given rest time in the nurse’s office. Same goes with recess.  She will have her choice to rest, sit on a bench with friends, or stay inside the classroom for quiet play.  Before our meeting I made up a table of If/Then statements.  It labeled what symptoms to watch for, and what to do if they happen.  Symptoms ranged from mild headaches to tingling to confusion to seizures.  Another concern is loud noises.  Fire alarms and loud lunch rooms may be concerning, so we will play these things by ear. (Pun not intended 😊)

 
G has enjoyed a few trips out of the house since our trip to the NS last week.  We haven’t over done it, although I notice that she does wear down much easier and faster than in the past.  I’m sure it will take some time to build her stamina back up.  This is a little concerning with school around the corner.  But I must say, the school has also been very understanding in knowing that there is a possibility of a need of partial days.

Look for an update on how the first few days of school went, as well as photo log of her incision.  Don’t worry, I will put a disclaimer on the latter post in case you are squeamish about that kind of stuff.  😉

1 Week Post Op

The first few days home were filled with determining our new normal for the next few weeks. G is not allowed in a car until her follow up appt. Keeping her busy has proved tricky, but our friends and family have been so very generous with crafts, games and visits. She has already finished a few projects and even learned a few new skills! 

The scheduling of G's follow up appointment has been a little difficult. When I first called the scheduling department, they scheduled her suture removal/follow up for 23 days post op. I told the scheduler that this was too long and needed in earlier, but she wouldn't budge on the date. So, I called the NS office directly and spoke to the triage nurse. She took a message and I waited for a call back. The day went by with no call back. I then called early the next morning to touch base. I am not clear where my message went or if anyone would have ever called me back. But after explaining, again, why I was calling, they found a place for G 14 days post op. This was the first negative experience I have has with this facility.

Another negative experience came the following day. I realized that G was very low on her pain medication and called the NS for a refill. It Is a highly scheduled drug, and I was afraid it would be a battle to get it refilled.  G was still in need of an occasional dose due to pain just under the incision site near the area where they removed the piece of skull. We only give it if pain is a 7 or above. I had the same experience with this message not getting to right people as I had with the follow up appointment message. But finally was able to talk to a Nurse Practitioner. She was extremely nice but she informed me that G was no longer considered under their care. (Which surprised me since it is only 8 days out from surgery and sutures are still in.) Since she was no longer under their care, they will not refill the medication, and advised to contact our Pediatrician. This was Friday before I received this call back from the NS, and completely out of pain Meds. Our Pediatrician is out of office on Fridays (of course). So we had to speak with one of the other providers in the office.

They finally ok'd the script and sent to the pharmacy. DH was tasked with stopping by the store to pick it up. Before he got there, I received a call from the pediatrician office advising they withdrew the prescription due to a high risk alert that the pharmacy received when they attempted to fill it. Evidently it interacts with her Erythromycin which G takes for reflux. And by interacts, I mean respiratory and cardiac concerns.  I plan to address this situation at our follow up next week since she was scheduled to receive both medications during her entire hospital stay. This concerns me very much. 

Needless to say, we are back to only having Tylenol as an option for pain. It has been an issue only once so far, and seeing her in pain and only being able to do the bare minimum kills me.

G's incision has looked phenomenal for the first week. On post op day 6 I began noticing a small amount of redness at the bottom 1/2 inch of the  incision. It has become slightly more red each day, but not terrible. While on the phone with the nurse practitioner we discussed it. Since there was limited swelling, no warmth and no drainage, we opted to watch over the weekend. I tend to think it is a reaction to the sutures, but her continued low grade fever has me on high alert. 

On the subject of the low grade fever, I do have concerns with dosing Tylenol regularly due to the possibility of masking a higher fever. We went about 9 hours with no Tylenol today and it was during this timeframe when her temperature spiked close to 100. Again, the magic number is 100.5. Needless on say, we are continuing to monitor this closely.

There seems to be good days and bad days and the good definitely outweigh the bad.  She gets very worn out in a short amount of time. Naps are rare except for her bad days. Headaches continue, but with less frequency and severity. Unfortunately she reports a return of the ringing in her ears. But it is different. The pitch and volume changes, and even is different from one ear to another at times. I am optimistic that this will improve, but I know this is one of the most chronic of G's symptoms and may not go away completely. She does report very occasional tingling, but again, I hope this is only a post op symptom that will eventually resolve.

We still consider the surgery as a success and are relieved with how well G has progressed this far.