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Chiari Malformation Community
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1968463 tn?1374761413

13 month post decompression update

Hi ALL :)
I know my appearance has been few and far inbetween, my sincerest apologies once again. It seems like everytime I think of getting on, someone stubs a toe or needs a drink or there is a lesson....lol.

My hubby was in a motorcycle accident on July 4th while him and my DS went to retrieve a part for our broken A.C.
Living in New Orleans, that IS a NECCSITY. Both him and my son and the bike are all ok, my DH however did break his leg in three places in both bones and required surgery to place a rod and screws.... It sort of happened all so quickly, so I have been doing my best to take care of him, but boy has it been a challenge, and then the onset of a horrific flare up that landed me in emergency oral surgery to have two exploded teeth removed, but also landed me in a new NS office, in which I must say, WOW WOW WOW !!! I felt like I had walked into a Chiari institute of some sort. They have scheduled a new flow study and new CT's Mri's and X-rays from brain to butt, lol !!!! All scheduled within a week. My follow up appointment is August 6th and in the last week they have call 3 times just to check on me. WHAT? No, seriously...just see how I was feeling. He suspects craniocervical instability and that I have scar tissue blocking the flow of the CSF.  He also thinks I have EDS and that we need to replace my current patch with a patch made from my own skin . They also think all of this is rooted to EDS and that the EDS has actually caused my chiari. And that my mother actually had eds as well. I will find if I need surgery and what date that surgery will be if needed on August 6th. I just cant believe how awesome these people are. I mean even the receptionsist and PA's knew all about chiari. I have to say I am just so amazed. I am on the other hand horrified at the idea of having my neck fused and gong through a whole new surgery and patch.... I am still getting past the last one. Hope that you are all doing well and taking care. I see a lot of new names and this saddens me to see so many of you being dx'd but in the same breath glad that you have a dx . Prayers for you all always each and everyday.
13 Responses
620923 tn?1452919248
COMMUNITY LEADER

  HEYYYYYYYYY !!

Sure did miss u...glad ur DS and DH are ok after that accident....
WOW so EDS huh?....I know if u have it and u get a patch that is not ur own skin it can cause all sorts of problems.....I am so happy u have a Dr that is so knowledgeable...and so on top of things checking on u....

I hope u can keep us posted....and I would love to catch up with u soon <3
Avatar universal
I want your doctor!!!!! ANd glad they are on the mend.. motorcycle accident can be really bad :( What new symptoms were you having that caused you to get looked at again?>
1968463 tn?1374761413
HEYYYYYY Selma, I have missed you as well. Going to try and pop in more often now that my laptop is fixed it wont be as hard too. I hate using the mobile site, it drives me BONKERS !! lol. Yeah, EDS, I go for all that testing too next week, even though Dr. Richter said he doesn't even need to test it because apparently it is very unnatural for a 30 year old woman to still be able to pop into a spilt ( right left or stratle) at any given time without first stretching. I thought everyones thumbs bent backwards, lol.
Grinlixie, this is my 4th NS. The last one I had I loved but he retired, which lead me to find Dr. Richter at the Challiciual clinic ( I think that is how it is spelled) I started having some numbness in my hands and feet again, and started getting those instant headaches whenever there is a valsalva maneuver involved, as well as this horrible vertigo and a new head pain not pressure but sharp constant pain on the right side of my head as well as the pressure once again. Honestly I was also looking for my 1 year follow up too. The day I went in last week, I was having probably my worst day since surgery, so he got to see first hand what I was experiencing. My first post op MRI was 3 months ago and it showed a herniation of 17 mm. Now that  is better than the 3 cm I was and there is a lot more room, but something is blocking the flow. This is why he thinks there is something else involved. He said there has to be a reason. The good thing is that he actually knew my previous NS very well, and has a lot of respect for him. He said that my decompression was textbook perfection at it's finest. That says a lot. Anyway, My hubby and I realize just how blessed we are to have such a slight injury from the accident. We know just how bad they can be. The lady literally just hit his leg, he never even dropped the bike, and there is not a scratch on it or my ds. Hope you all have a pain free day!

Selma, what is the latest update on you? How have you been feeling? How is your beautiful DD?
620923 tn?1452919248
COMMUNITY LEADER

  Big NEWS !!! She is moving back to PA...closing on the house is Aug 15th and moving day is the 17th...so I am beyond happy : D

  The house they purchased is beautiful....huge, it has a large yard for little Lucy (dog) to run around....and for me to putter in a garden ....lol....

I am going to miss NYC  but I am  sure DD and I can go visit like we did when she was younger...lol...

Me...well this a roller coaster ride as u know, and with TCS and EDS I do have some issues that at times need strong meds....but other then that , I am drawing floor plans for the redo of the kitchen in DD's new home....lol...I am keeping busy with sewing and painting like b4....just can not wait for her to be here.
1968463 tn?1374761413
YEAH !!!! I am so happy for you :) I know how close you two are and it so nice that you two will be close again :)

How awesome to be able to draw up the plans for the kitchen . That was what I went to college for , home design.
I pray for you always Selma. I know it can be hard on you at times, but you do such a great job of pushing through. I have learned a lot of acceptance. I went through the denial, and am ready to just kick butt and take names now,lol. I'm still sewing and crafting and still have my business. My products are now sold in stores :) My latest venture is I started making memory foam handmade roll up nap mats that have and flip up memory foam pillow and attached blanket. It all comes apart for easy washing of the fabric and easy cleaning of the memory foam and they are a HIT !!! I have had 7 new orders overnight, I may have to hire someone to help :( It is prospering though and my kiddos are doing great . Paris is starting her 5th year of dancing and she has moved up to a more advanced class...and the boys are gearing up for football now. Cheer season is upon us as well, and we are ready (Paris and I) to take it on and make this a winning season. Coaching these girls has been such an eye opening experience. They are walking with me for Chiari walk this year in city park :) Now that is a serious support system little girls all walking beside me. I am just so thrilled for you that your DD is coming home !! I cant wait to see the pics of the new house :)
620923 tn?1452919248
COMMUNITY LEADER

  U r selling ur items in stores !!! WOW....amazing, u have been busy huh? I thought just with ur kids and their activities....but goodness u have ur own stuff going on....u still making the bows?

I am soooooooooo impressed...and want to see pics.....

My recent move to making head pieces and hats was making a few hats for my niece's kids, and I did post a pic.....I am in the process of trying to find more millinery products, like the wire, ribbon and a hat block....lol...

I have a bride that wants a fasinator, in black.....so I am going to purchase the bird cage net and satin to work on it, but I want to get all the other items, so I know how much and what it will look like....lol...

I know u will kick butt....sorry u have this set back....as it can slow down the healing if u should need another surgery...praying it all works out.

I need to see pics of ur DD's latest dance recital....last yrs costume was so cute <3

1589097 tn?1343436712
Welcome back Sheila! Missed your posts and was wondering about you!!
Mazie :)
1827123 tn?1383868876
So happy to hop on here and actually see an update from you! I have been wondering how you have been, you cross my thoughts frequently! So very excited about the new NS, what a blessing. Boo for the hubby - poor guy! What a blessing your DS wasn't hurt! Keep us posted with all the EDS and new patch. If you are in need of EDS link, let me know - I'll pm the on I use all the time! Hugs to all of you!
Jiggle
620923 tn?1452919248
COMMUNITY LEADER

  Feels like old home week on this thread....nice to see so many familiar names....

  Hope we can keep u all on for a while : )
1968463 tn?1374761413
Wow, having a pressure rainy day, and I pop on to see all these familiar faces :) It's like a little reunion !! Mazie, so nice to see you !!! Jiggle, you often cross my mind as well. If I can possibly find the time today, I will try  and upload some pics. I have some new post Mri's too that I have been wanting to upload for some opinions.
Selma, wow you have been a busy little bee yourself. what an adorable hat. You did a phenominal JOB  :) yes, my bows are in stores now too, lol. My just went insanely popular last year. It is an awesome feeling to accomplish something for yourself. I will have to upload some of my more recent work, it truly is much different than it was. So glad to see some old friends :)
620923 tn?1452919248
COMMUNITY LEADER

  Thanks, it was my first attempt....and I plan on doing more...lol...u will never guess what I used for a pattern....I am still amazed.

I am still working on the Duck quilt as I am hand quilting it....no machine for this.....so it slows down the process a little...lol...

I am so glad to see u all too...and happy u got ur stuff into stores u will have to let me know how u did that : )
1827123 tn?1383868876
Cant wait to check out all the new pics ( I have new MRIs too). Love seeing all the familiar faces/names
Storms are bad here, its our monsoon season. So the whole day is about the pressure increasing in order to get the rain = no bueno for my cabeza!!  heat and humidity are pretty nasty...but, probably nothing compared to LA!  
Are you selling like crazy, or at a steady pace to keep up with?
1663373 tn?1333639589
Hi!!! So awesome to see you on here I am not on often am so glad I did!! I am so happy u found a good NS!! I had the cervical instability and had a fusion it made a world of difference!! I am sorry about your hubby mind rides a lot also and it is a constant worry! Keep us posted and praying you find relief!
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