TheIcelandicPrincessNewNeck2022

  For all the EDS patients and also their/my friends: THIS is why I cannot get sick with a cold or COVID! If you see the parietal diagram below:  Look at where my surgery was:   the Atlas is C1 is where the weight of the brainy skull is supported.  That was fused with C2 which is the Axis.   So there are now some pretty big screws along with some titanium there. I will soon have CT images of it but you can see that there is not only swelling but also VERY little additional space to take up. Look at where the sinuses are, also the nasal passages and the esophagus. Food (and wine!) has to travel down the esophagus w/o getting hung up on the tissues. The air tube (trachea) and the food tube are RIGHT there.   This makes it very clear why swallowing is an issue.   Also it is clear why one does not want any additional mucus or inflammation in the sinuses, nose, trachea.   I panicked at the hotel during the first few days postop because I could not brea...

  Today I am supposed to be able to go most of the day w/o the hard collar, but since I had to wear it for so many months prior I can only go w/o for several hours interspersed in the day.  My shoulder muscles are unhappy about keeping that big brain up! THe incision looks great I think; the sticky stuff from the around the incision comes off little by little as everything under is healed.  The hair tends to pull off with it so it will be a badass scar! Slowly. I am having likely one less nap a day or so; at least one in the AM and PM or I am ready to bed at 5:30 PM! I have been walking but decided it is better to try shorter spurts than all at once. Swallowing slowly better but it could take a full additional month of course.There is still swelling around my neck front and also the back swelling is less solid, slowly ebbing.   I am also able to slow down on pain meds. All in all my current situation is SO MUCH Better than prior to surgery! I may go out today in the ...

  5.5 weeks post op! Sometimes it amazes me I had this surgery after so many months of work to figure out why my head was exploding and why I couldn’t perform the “drunk walk” (very ataxic), and oh so many other problems from the brain pressure!  I am cutting back on the pain meds because the pain is now less but that can be a problem just to judge so I don’t let it get too bad.  I still experience some “sledge hammer to skull” and of course the muscle spasms and swelling on neck and shoulders is abating.  Incisional pain is almost nothing although there are still some areas that have more healing to do.   NOW I have to be patient with my body to catch up to what I would like to be  able to do. I made some pancakes for breakfast and couldn’t finish putting away the ingredients after I made them for us. Napped.  I feel pretty weak from time to time and of course I still nap several times a day.     We have been so so lucky to have so many...

  5 WEEKS! Yessiree! Yesterday I was able to walk slowly almost a full mile while today less than 70%, just too sore at the time.  My incision continues to heal—still very itchy and scabby around the dissolvable sutures.  If I could actually see this myself Nurse Ruth would have cleaned it up. Pretty sure it will take more weeks before I can sit and have someone work on my hair tugging and pulling.    I find I cannot take intellectual focus for more than about 40 minutes; I had to go back to bed during a zoom class.  My naps ARE tending to be shorter and less frequent so I can be up a bit longer so that all shows progress.  I am SO thankful I can swallow better….I still feel kind of congested but I find I could slowly chew and swallow a tortilla w cheese and ham today without blending it! Wooohoooooo!! Always remembering my bone stimulator also each day so hopefully all this protein and calcium means healing!  I still do not know how travelin...

  Here are a few things to know ahead of time: 1) you will have to go off of your NSAID or Celebrex for 3 months postop. I had zero idea how much my daily Celebrex was helping until I did not have it. Every joint hurts.  Especially those more prone to dislocation.  2) You will have really shitty days post op (especially immediately postop) but I had way more weeping days from pain prior to the surgery.  (It was daily hell) BUT I think what I am learning now at one month as I ebb off the anti inflammatories that all of those previous joint issues are clearly present. 3) ALso; I need to let people know, because I am pretty positive overall and that I tend to be hopeful, that this is NOT how I am EVERY DAY.  I am no fakey “all is well when it is clearly NOT”  type person. Over the years with EDS I have been in despair many times. BUT  I am lucky that I have excellent support systems and so many lovely people in my life, and those that will help me get thr...

It is definitely a blessing to be alive after all this process.  Feeling like I am still a bit in a tomb but getting better each day.  It is hard to see progress unless I look back a week or so.  I DID walk .75 mile yesterday by our creek (with Phil). Creek is running hard due to our needed rain. I did shower again and wash my messy graying carrot top. (I now think that besides being cold, and hungry, being dirty has to be one of the worst things about being homeless. Or in a war.)   For those having to have this surgery I want you to know (most likely!) you WILL get better and want to live again. Truly I am aware in the most intimate manner how long term unrelenting pain can wear a person down to the soul exposed.  There comes a point at which you figure there is little hope of continuing.  However.  TAKE COURAGE.  There is hope of relief.  I want to send a message of hope and relief to all those in Ukrainian who are fighting, bereaved, hung...

  For people having this surgery; It was just over a month and they ask you to start taking the brace off when sitting etc. and turning head a tiny bit. DO NOT leave it off for too long! I am not kidding.  I thought I was doing ok and didn’t over do but then in the night had to get up and take a Norco and muscle relaxant.  I know it had nothing to do with the $84,000 HOSPITAL ONLY BILL. It hasn’t been sent to Medicare and my other insurance (Anthem CA BC) yet.  So no worries but I see how people from UK need $200k for this surgery.   It is worth it.   What is your life worth right? 

Yippee!!! Wendie came over and helped cut out the dead crappy tape on my head. I cannot believe how wonderful it was to scrub that crap out! We tried hexachlorophene surgical scrub and you can see the end results.   OH MY my head feels so much cleaner and less itchy! The pink is the scrub not blood! My hair has grown a ton it seems but this girl will sleep happily tonight! 

This thing is costing me $1500 out of pocket! Medicare in its wisdom and glory has decided I did not have “enough done” as per neck levels (they do not count C0-C1) so I have to pay for this SOB out of pocket!  Infuriating.   AND the stop at a certain # of treatments so that you CANNOT share it.  I shared mine the last time when I had a c4-c6 b/c they covered it and luckily found someone to use it before it ended itself. BAH! 

  Well.  Mostly I sleep.  Not kidding. I nap at least 4x a day and most of the rest of the time I am either on couch or in favorite chair! This is normal and to be expected.  Again, I am not phoning ppl because I am too tired and often find myself having to go back to bed at a moment’s notice.   Swallowing is better and throat swelling is some better.  We have been so lucky to have so many wonderful friends who have brought GOURMET food (lately Barbara and Chris!) and friends who brought flowers and plants and wow! Just so overwhelmed with all the kindness.  I am walking slowly and that is to be expected because I am still quite weak and my HR goes up too far if I push it.  I am so so glad to be home in my own bed for a week now! Remembering that they unfolded my cerebellum and pushed my brain back in place and then did all the fixing of my skull and neck I guess it would be a long recovery…plus I have not slept worth sh+t for over a year.  B...

  Just a quick update to let you know that I went to my primary care doc and everyone very happy with progress.  I am not and cannot push myself anyway.   My incision is healing: next week is a month and midweek I can wash my hair finally and also get water on the incision for the first time.   People have been so lovely and bringing over food (YUMMMM) and flowers! Phil got quite a bit done while Matthew was here so he got more caught up. Matthew was a huge help also emotionally for me (Moms love to see their boys!) So we are doing great.  I am not phoning people because my voice and throat are still healing.  And also my swallowing is still problematic but slowly getting better.  I am still blending foods and thicks are working best.  It will take time.  For anyone else having this surgery: Just know having your skull sawed open and shoved back into the right place takes time as does the recovery from the fusion.   So do not plan Big Th...

Hi I am so happy to be home! I am sleeping A LOT.   This seems to necessary but also the way I tend to heal, of course.   I am finding now that I can get thru a whole night w/o pain meds and also I have been able to eat by chopping up food and/or blending it. Still cannot swallow well.   Had to go to bed at 7PM (of course we were on East Coast for 3 weeks) But i was just tachycardic and weak.  Today was able to walk slowly a half a mile, average HR 87.  It is getting some better. Basically just day to day and seeing some small improvements.  Ataxia way better, balance way better, brain fog better! Nausea better also.  It is SO nice to be at home! Matthew is here helping and doing chores and getting groceries, food, dishes etc. etc. It is also great for me to have someone to babysit me while Phil does his thing b/c he has had to be completely watching over me constantly!  I cannot believe we are almost 3 weeks out from surgery! I go see primary car...

YIPPEEE SKIPPEE DOOOO! Made it! And we cannot thank all our neighbors and friends enough for the warm reception! We have a fridge full of food and also dinner(s)! AND house was decorated (seems cleaner too than I left it but….) and flowers etc! So so sweet! It was a bit brutal getting home a few times but mostly I just clicked my heels together hoping for Dorothy to kick in.  We got in about 10 PM Pacific so we were tired (like 0100) and just hit our lovely bed and we were so thankful for it.  Matthew gets here in a few hours so we shall soon have extra help too.   We appreciate you all so much! I will rest up from the journey after a couple of days and reignite that healing process.  As an Icelandic Shield Maiden Princess Should.  

Do you believe it? The hotel part of this recovery is ending! (At least I hope so; Alaska Air is doing some strike picketing and we are on Alaska at 5pm out of DCA.) The Thursday night tornado warning dumped us out of bed but the twister came down pretty far from us.  So neither blizzards nor tornados or ice storms have gotten in the way of us yet.  We plan to fly out and I will update after we get home (after some sleep I should think!) so everyone knows we made it.   Given our slushy frozen train in January from Boston to DC you just never know……And Matthew is coming on Sunday to help for a few days.   Also Barbara and Paula and Colleen and Mary Sue and others in SR have set up some food for us at home and more to come! People are being so very kind and we cannot thank you enough for all of your help and kindness!   Thank you all for reading and being a part of this journey because I could feel your thoughts, love, prayers, joy, all of the good stuff keeps me ...