Hi folks! Met with Dr.Oro and found that they have a GREAT group. Everyone of their team was very understanding and knowledgeable. Docs from my state could learn a lot by going to Colo. and hanging out for a while....Found I had blockage issues. They were very thorough! Only fix is the surgery so we scheduled it in late Nov. I wanted to be in charge of it instead of it grabbing me at the wrong time. A little nervous but I know that I will be in great hands. Hopefully this will not only take me out of the danger zone but it will also get rid of these stinkin' headaches, memory problems and balance issues ect.... I will let you know how it goes. Thanks for all of the info.
Bumping up so those that have scheduled a surgery date can post here so we have a way to keep track of when someone will be going in so we can keep u in our thoughts and prayers.....please ask someone to update us on ur progress : )
I am one week post op by Dr. Oro and other than the typical pain issues associated with brain surgery, I am doing really good. Dr. Oro and his team are some of the best that I have ever seen and the hospital staff was amazing! After care has been excellent and I know that I am in great hands as I walk through recovery. Never ave I seen a medical system like the one in Aurora Colorado work as well as it does. They are truly a "Whole person" medical system. We flew back home on Saturday and things are progressing well!
YEAH !!!...so glad to get an update from u and such a positive one at that .....looking forward to more : )
take it one day at a time, very slowly, and no matter how good u feel, do not be tempted to do things u should not, not bending, lifting etc.....rest, and walk and exercise ur neck to avoid scar tissue.....
I am! I've been meaning to update everyone, but I have been feeling very quiet and contemplative in the last month.
I'm scheduled for decompression on the 15th of May.
I know you guys like to have someone post to keep you updated, but that probably wont happen here. I just don't see it being realistic, the people I could ask would either see it as irritating and inconvenient, or are dealing with life, or just don't quite understand this all. But, I am generally okay with that, I will update you all when I can.
I think my quiet actually has more to do with being busy with the end of semester assignments, finals, concerts etc...that being said now that is all done and I am starting to feel jittery, doubtful and nervous.
Well for starters know that is normal, if u read my journal on my surgery experience u will see as I was waiting in the OR I wanted to jump up and run out of there...it is normal to get scared...but, I had a wonderful anesthesiologist that spoke to me and made me feel so comfortable with him, that helped me focus on all I did to get to that point, and what I had been thru pain wise and Drs not understanding to finally getting here...and I was relieved. and I just relaxed....another friend on MH told me about this bird...and as I closed my eyes after getting the meds to go to sleep I envisioned that bird taking flight....and it helped me knowing I had all these friends here....they all knew what I was going thru...that helps : )
See, I feel like i can manage my pain...I mean I have weeks where I cant think straight or see straight...but it comes in cycles....and even those cycles im not 100% sure are from the Chiari - they don't always fit the bill....so pain wise I am doubtful if I actually need the surgury....that being said
That being said, my MRI showed blockage....I don't remember how much...but it was definitely a concern. I have been having more and more problems with my limbs, exercising causing extreme pressure, blacking out and my balance....like its ridiculous....practically falling over every time I stand up....XD I could be a circus act of clumsy.
I was dealing with the pain too, it was the falling that got to me, not knowing when or where it might happen....and one fall resulted in 2 surgeries....so, I knew I had to do something....the Drop attacks scared me more then the surgery....
Having pain my whole life I am not sure if I would know what it would be like not to have pain...so I just deal with it....and yes, mine cycled as well, where I had days that were worse then others....and I had times I did not think I was in need of surgery....but those drop attacks, and needing those surgeries for the injuries was the breaking point.
Yes the drop attacks are AWFUL....I have always feared that I will get when while performing or in a concert or.....many other scenarios run through my head. My drop attacks begin with a sudden rush of pain/pressure in my head, then sometimes my eye site goes out..then I loose control of my limbs, and drop...but most of the time I can get myself to the ground safely before my limbs are completely out of my control because i can recognize when its going to happen. Except that one time it was like a seizure....then i did not have any warning or anything...but i typically remain conscious throughout them....sometimes i can talk, other times i cannot. Does that sound like yours?
The other thing that gets me is weakness in my arms and legs...I play guitar and draw and paint....and love playing sports. It is also the singing - which I feel is a silly really....getting a surgury so I can sing....but it is my love...and one of my gifts....I cant stop doing it even though it leads to black outs, migraines and just overall pain....I just cant....
But drop attacks...yeah....bad. Balance....bad....so bad...I do both kickboxing and yoga...(less and less in the last couple months though :( ) and many it is a site to see.....XD Oh boy....today I have been falling over (but usually able to catch myself) every time i move...its rediculous....ususally that is accompanied by slight amount of pain too...and my eye site...problems there
But surgery is not garunteed to help any of these things...I dont know...
Actually, no, my Drop Attacks did not give ne notice they were coming, I would be standing one minute feeling fine and be midfall the next second...aware I was falling but could not react to stop the fall or call out.
If I had gotten some sort of feeling it was coming it would have been a little easier to deal with, but I felt fine...I would just drop....and one such drop resulted in injuries that required surgery...2 of them one on my knee one on my ankle....all b4 I got my chiari dx.
I understand u questioning surgery, I did as well....but I will say this month I will celebrate my 3 yr post op zipperversary and no drop attacks : )
After just posting yesterday that my surgery was going to be June 27, I had it moved up to the next nearest appointment, June 13. I think I'm pretty tough, but I had to admit that I'm suffering.
Can anyone imagine what this used to be like to endure?
Ty so much selma. I went through what felt like a heart attack a few minutes ago. They had asked me tocall in the beginning of the week...so I did..over 15 messages later...someone decides to call the office for me. She proceeds to tell me I have an appt with Dr. malgar on the 15th and that he is a specialist and Dr walsh reffered me to him because he doesnt do chiari surgeries anymore. I was in peices. The nurse from Dr Walsh's office called me and I could barley talk to her. She asked me why I decided to see Dr. Melgar? WHAT.....the receptionist took it upon herself to make an appointment with him and cancel dr walsh !!! The nurse called Dr walsh and explained what happened...and he was FURIOUS !!!! How dare they put my patient through that and since when does she say what operations I can perform...oooohhh....somebody is in trouuubbblllle. :)- Just happy that it all worked out. His office never recieved any of the 12 messages I left. Dr. Walsh is having his phone lines transfered in two weeks becasue of this.
My DH said that he will make sure and update you guys for me frequently....he knows what you all mean to me :)
Went to Dr Menezes today and am scheduled for surgery on June 29 I am so excited and scared at the same time. 2 days of tests and MRIs and all with a little 3 yr old tagging along made it interesting to say the least but I hope this is the light at the end of the tunnel.
Hi. congratulations on ur surgery date!!...I know it is scary, and we do have a list of tips for the hospital stay, see the health Pages as it has several tips of things u will want to take along....and do ask someone ti post updates on ur progress and know u will be in our thoughts and prayers : )
No I don't have anyone to do that. I just got a new cell phone so maybe I can do that for myself. I getting kind of nervous; but my hubby has been my biggest supporter. He was the one that really suggest the surgery. He pointed out all the signs and symptoms to me and noticed them more that I did. I want to say that our families suffer from this disease as much if not than than we do. Because they can only watch. They are only helpless bystanders; who want to help. But are not sure how to help.
If there is any advise you can give to me before my surgery.....please give it to me!!!!!!!!!!
Hi...the best advise I can give u is be sure u have the right Dr.....and all the testing for related issues were done...like for a syrinx in all areas of the spine, disk issues, ehlers danlos, sleep apnea,
Ask as many questions as u can about ur surgery, what is planned, type of surgery, lamenectomy, with dura patch if with a patch which one?
How long ur Dr typically keeps patient in the hospital, does he place them in ICU...will u have a pain pump,the more u know the better u will feel.
Look at our Heath page of tips for the hospital stay, as u will want to get a pill box with days of the week and times on it to sort out ur pain meds, stool softeners, and the like so u do not forget a dose....get some J&J baby shampoo as it is gentle and should not dry the healing skin out.
Get some one dish meals made in advance and in the freezer and help for a few weeks for house work as u will not be able to lift, bend, push or pull......
What is a Ehlers danlos? I will be ICU for 1 day and then a step down room. I should be in for only 2 days as long as I eat and use the restroom; but she said I will be able to stay longer if needed. She didn't say what kind of pain management yet because at my last visit is when I was told it was my choice about the surgery and to let her know. My NS is 3 hours away. I'll know more at my June 18th visit. Any advise for the car ride home?
Ehlers-Danlos Syndrome is a connective tissue disorder and too many only look to see if u r hypermobile, but there r many types of EDS and many with chiari have it.
It can cause u to heal slowly, bruise easy, and be hyper mobile of the smaller joints and larger joints, u can have fragile skin, very soft velvet like skin, stretchy skin, skin that scars easy, tears easy, and for those reason u want to know b4 surgery as it affects how they approach closing, and the dura patch as we also tend to be prone to rejection of foreign matter. See the EDS group here on MedHelp for more info, there is a thread with links to video clips by a EDS dr who also has it-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
I took a big fluffy pillow and sat in the passenger seat with it slightly reclined
to help balance out the pillow so u r upright, and the pillow keeps ur head from bobbing all over.....I had a good 4.5 hr ride home as we had to stop at te pharmacy.
Surgery is always our choice unless our health is in danger ....so some have had emergency surgery.
June 7th is my new surgery date....
I am asking everyone to please pray that this it and that surgery will actually be on this day. I at least get to be at my little girls review and get her dressed myself. However, I can't get put off again...it is miserable right now and I am desperate for some kind of relief. ...
I am really paying for my trip to Philly last week to see my daughter graduate as NP. Of course I wouldn't have missed it for the world, but I got through it(all!) on sheer will power.
I'm sorry for your delay, but I'm glad that you'll be there for your daughter's review.
I've been trying everything lately--small meals, more salt, ice cream (to make my mouth happy), more coffee, less coffee, alcohol. Finally I took some Ritalin today (which I have for driving), and I actually got some relief, and I was able to cook a couple meals in advance. I had been playing a lot of solitaire & just looking at catalogs.
I presume "the dying feeling" is dysautonomia, although I'm not sure.
sorry, I've been gone from here just too much to do with work and trying to things sround the house...............but my surgery is this tuesday june 26th, in Danville pa...with Shelley timmons
I will try to keep you up dated.
I don't have the exact date yet, but my strabismus surgery to correct my double vision ( hydrocephalus caused 4th cranial nerve palsy) will be in late August. yay! Can't wait to see again...and pray I only have to have one surgery. 15% chance I will need 2.
Finally getting my surgery this Thursday, August 9 @ Yale in New Haven, Connecticut with Dr. Diluna. The procedure, as he referred to it, is called an "extradural chiari decompression with dural splitting." It should take about one hour and If all goes well, I will be home on Friday :) I never thought I'd be so excited to have surgery haha.
I'll make sure to come back here and post how it went when I'm ready :)
THANK YOU so much to anyone who has helped me find my way through this craziness<3<3<3 and also, a big Thank You to everyone in this community for creating a place that is so full of Love and Support. <3 Much love to all of you and your families.