It's Lori! I'm back home!!!

{{SelmaS, PLEASE delete my other erroneous posts... my finger kept hitting enter and I wasn't ready... this is the same message, just with an appropriate title.  I tried to remove them, but it wouldn't let me.  THANK YOU, LOVE!!!}}

Hello to all of my wonderful blessings! Yes!  I mean you!!!

Surgery went well.  Dr. Di did endoscopic decompression with C-1 laminectomy.  He did dura splitting as opposed to completely opening the dura and therefore having to do a patch.  He said my surgery went perfectly and there were no problems and no leaks.  I can't remember if some of this was already passed along, so bear with me, but he said that even though my "tonsils" were only 5.5mm and 6mm, they were really fat and were pulsating down into my C-1, which was causing it to piston into the C-2.  He sees a good outcome for me, but is concerned about the fact that I have been symptomatic for 12 years without treatment.  I could very well be faced with permanent nerve damage, but we'll see.

Yesterday was the day I did the most.  PT came in in the morning.  Though I had been up a bit with assistance, I hadn't walked a whole lot and hadn't braved it on my own.  I had to have someone or something to hold onto as I was too unsteady on my own two feet.  The PT ended up ordering me on a walker for a while.  Also, home healthcare will be coming tomorrow to follow up with some PT and check in on me.

After PT, I had a little bit of an upsetting incident at home I had to deal with (but shouldn't have had to), so I was pretty upset for a bit and it took about three hours to get my head back into line.  Once that got better, I got to take my first shower and get all the "gunk" out of my hair.  Then we made the trek home.  The 6 hour drive took us only about 7.5 hours this time.  For a part of our trip, we were driving in a torrential downpour.  After a reminder from someone else about the barometric pressure change, I'm sure that added to my discomfort.

Today has been so-so.  In all, I actually feel better than I thought I would after this type of surgery, so I can't really complain!  I had a really good evening on Sunday evening... and I'm looking forward to more times like that.  I certainly wasn't 100%, but I felt ok physically, but really good in my spirit... and that was just really refreshing!

I want to add some encouragement to all of you out there who are nervous or scared.  I NEVER got scared.  I remained calm with regard to this surgery right up to the moment.  (Now there was a different situation with regard to me and IVs... but that's another story!  LOL!)  I had such a peace in my heart and soul that I can only attribute to the following things:  #1, I prayed for peace and for discernment in all decisions, by my doctor and myself... and I had faith that these prayers would be answered.  #2, I knew that I had the two best doctors (for me) that I could have - Dr. Di and the Almighty Healer who was right there guiding Dr. Di's hands.  Again, I had complete faith in them both.  The last thing, I had pretty much reserved myself to shortly after realizing finally that the Chiari was my problem.  I knew in my heart, after having progressive symptoms for over 20 years (and 12+ years since it was first diagnosed as a "benign finding"), that this surgery/treatment was the ONLY chance I had at slowing this progression and HOPEFULLY alleviating some of my symptoms.

As far as surgeries go, my shoulder decompression surgery was WAY worse than this.  I truly expected to feel like I did the first 24 hours after surgery for quite some time.  But I didn't!  Friday was surgery.  After the first 24 hours (Saturday), the worst pain I experienced was intense pressure and pain in my eyes, and I had to shield them from the light.  On Sunday morning, I still had the eye pain, so I asked for all of my meds... went to sleep for about 4 hours... and when I woke up, it was just gone!  I was amazed!  Later that day, I was laughing with my roommate, and then her family when they came in.  I felt pretty good, all things considered!

Monday was a little different.  My head and neck hurt when I woke up, had PT, then I had a little incident from home that was upsetting and I had to deal with, so my headache came back a bit stronger.  I took my meds and after about 3 hours, it calmed back down, so I decided to go ahead and go home... knowing the car ride was going to be taxing.  And it was.  We had a 6 hour straight through drive that took us only about 7.5 hours this time :)  During the trip we ran into torrential downpours... so the change in barometric pressure I'm sure didn't help me.

Today... I'm doing ok - and again, all things considered - I feel better than I expected to feel by now.  I'm waiting for a call from Dr. Di's office, as I am having problems with my tongue.  Could be thrush, or maybe Sjogren's Syndrome, as my eyes have been bothering me too.  Home healthcare will be here tomorrow, but I don't know if they'll deal with it.  I may have to go to Dr. House, my pcp, tomorrow or Thursday for a check on it.

Well, that is the full scoop (and way more than I'm sure you wanted to know) about me :)  I just wanted to put everything out there for those of you who are still considering and/or facing surgery.  Please do yourself three favors.... BELIEVE in your doctor, TRUST in your faith, KNOW this is the beginning to something better for you... maybe a LOT better, maybe just a LITTLE better, but BETTER nonetheless.

Thank you all for your support, assurance, and your prayers!  You are all very precious blessings in my life!

Love, ((HUGS)) and blessings to you all!

[selmaS]

Hi Lori...welcome home !!!

Wow it all goes so fast....I am so glad u r doing so well.

And u r so right about the things we all need...our faith, a good dr...and support : )

Thank u for the update...and so soon...I stayed off the computer for a few weeks....remember, don't overdo...it is easy to think we can do more than we should bcuz we do feel so much better after surgery.


"selma"

[stephanie_C]

I can't tell you how much your posts means to mean! It came just at the right time for me. I just saw Dr. Ellenbogen yesterday and was told that my chirari was "a pretty significant one" based on all my MRIs (13mm and also being compressed by C-1). I have been going back and forth on how I feel about having this surgery for the past 4 years, but now it looks like I should have it sooner rather than later. But there are so many negative things that get posted about being post-op and how people still have all these symptoms and pains I was beginning to wonder if some people had regretted their decision to have the surgery. It was REALLY good to hear that you have had such a positive experience so far, it is VERY encouraging to those of us facing this difficult and life altering decision.

Please keep us posted (as you are able to) in the coming weeks. Good luck and I hope your recovery is speedy.

PS - Do you know where I can find more info on the endoscopic version of the surgery?

[ChiariWolf]

Very Cool Lori!!!! Glad to see you made it home safe!


Stephanie- Dr Di has received awards based on his approach to endoscopic brain surgery. His approach to chiari surgery accourding to the Cleveland Clinic web site. There is a tiny bit of info there but in a nut shell his goal is to go in through a 2 cm hole, yes 2 cm, and through that hole he removes whatever bone needs removed and will when possible scar the dura so as to allow it to naturally stretch itself without introducing any forein substance into your body. He expressed to me that patients have much better success this way as there is far less chance of a CSF infection, leak or other surgery related infections. Don't know if the URL will post here or not, but here is Dr Di

http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#7644

Tell you what, again I went from 43+ symptoms down to 3 that are pretty constant and 1 occasional symptom at nearly 6 mos post op. NONE of these 4 symptoms are anywhere near the frequency or intensity as they where pre-op. Do I feel great? No I don't, but for what it's worth I'd go through the surgery with Dr Di in an instant!  If you like pm me or post back here I'll have my wife take pictures of the scar that I"m left with.
The wife of a Chiari patient who went elsewhere looked at my scar yesterday. Being as she is my PCPs nurse she also questioned me about symptoms and was totally flabergasted. Just let me know if you want the pics I"ll get some and post to my profile. I had some up there from right after the surgery but they disappeared for some reason.

Wolf

[shanmomof3]

Welcome home Lori! So glad everything went well and that you are already seeing improvements. I will continue to send good vibes ~~~~ and pray for continued healing and speedy recovery! Blessings and (((Hugs))) Shannon

[cyberpyxi]

Thank you so much for posting this. I am going to be doing my surgery in June, and have been PETRIFIED! Just about every story I've read talks about the worst pain in their lives, and horrible headaches, and leaks... Your story made me feel quite a bit better. Thank you so much for sharing!

[zygy]

I would like to agree with that last statement :)  I am scheduled for May 12th and LOVED hearing that you did so well with your surgery!!!  I keep telling my husband I am young, healthy and ready to recover quickly.... he just laughs!!  Congrats on everything going so well, hope it continues in that direction for you!

[*Stormy*]

HI Lori

I did post before but I think mine may have been on one of the ones that got deleted!

I just wanted to say that it was very thoughful and caring of you to post in that much detail...I'm sure that it was invaluable to those who are awaiting surgery. I am so glad to hear that things for the most part are getting better ...please remember to take it easy and rest!!

In my other post, I mentioned my curiosity about the tongue issue you are having. About 2 weeks or so post op I started having problems with my tongue and eyes too. My tongue burns, tingles and my mouth feels extremely dry. My eyes burn, feel like sand is in them, swell and are very dry too. My tongue seems to be enlarged and I constantly have this bad taste in my mouth. I went to my PCP and had an ANA test which came out positive, the Lupus and Sjorgrens antibodies came out neg but I did come out positive for Hashimotos. For now, I am assuming that the mouth and eye thing is a symptom of Hashi's but my meds have been increased and I've seen no improvements. When you feel up to it, I wondered if we could compare symptoms? In the back of my head I have wondered if this is a surgery side effect...

Again, thank you for all your positive words of encouragement..you are a truly a blessing

Carolyn

[mikeysmom1995]

Hi Lori,
so glad to here that your surgery went well, and that you are feeling better. I have heard so many good things about Dr. Di, and this endoscopic chiari surgery he has pioneered. Amazing to me how surgeries evolve at such a quick pace. It gives me great hope as I am a mom of a chiari pt. We are seeing Dr. Frimm in a couple weeks, and we will go from there. Sorry to hear about your long drive, that I am sure was not easy after surgery, but being home is the best place to recover. I will say lots of prayers for a speedy recovery.
Barb :)

[letterchick]

Hi Lori,

Wow, what an amazing testimony!!  I am so happy for you that things are progressing as they are!  I was especially curious as to how the endo would work.  Praise God for the wisdom he gives these drs to progress this way!  I pray I will not have to have surgery, but if it turns out that way I know where to go!!

Take care and don't over do!  I will be looking forward to hearing how WELL you are doing!

darlene