Hi All, (bear with me, I'm not much of a story teller :-0---and wow, its kinda loooong) My husband has a rupture on 3/30/05 which they coiled and luckily he made a full recovery. Still has headaches from time to time, but thats a drop in the bucket after reading some of the stories on this site (which is great by they way!-this site I mean). So here we are again...we were living in NJ at the time of his first, since then we have moved to south MS and here is where our delima is. We had been on watch and wait for the past few years, seeing a neurosurgen at USA medical in Mobile, AL. We weren't so sure about him but hadn't had much to worry about. At our last visit, he refers us to a new Dr. at the same hospital who does coiling (this was good since 1st dr. didn't) so we were excited. Anyway, we meet with him and he wants to do a CT angio to see where we are and how things look. We thought "ok, this is good since he hasn't had one since '06'". Well he just had his angio on Tues., again the new dr. was very nice and sat down with me and went over the scanns with me then and there. After that, he came out and explained everything again to my husband, never rushing us, answered our questions. So he finds a new 8mm annie (scary, since they thought it was a 4mm after reviewing his last CT :/) forming off of the orginal. He suggest coiling with stent or balloon assit. OK, so now I'm going back into OMG mode (old memories....swoosh....came right back to me). Plan is to get a second opinion (didn't know who or where) and go from there. Then BAM!! Get a phone call following day from dr., he informs us the results/scans from Tues. angio are GONE! Accidentally deleted!!! My husband is laid back,"it is what it is" he says, and that he still likes this dr......OK, well huh, wifey not so sure!!! Its 2012, HOW DOES THIS HAPPEN??!! Now there goes our 2nd opinion unless he gets another angio, which he does not want to do................
My question to you all here, does anyone know of any great doctors down in this area, and I would love, love, love to hear any suggestions from anybody, cause we are just not sure what to do!!! Thanks!!
I’m so sorry to hear that your husband’s Annie has grown and another coiling may be needed.
Having worked in IT, I know that it is possible in 2012 for data to be deletdd accidentally. However, before agreeing to another scan, please insist that the doctor to go back to his IT dept and question them about their backup procedures. There may still be file that can be retrieved. Please also ask him for a copy of his written/dictated notes.
Thanks Carole, I will definitely do that. I actually got a disc the day we were there and looked at it when we got home, since my husband didn't get to see it, and noticed there was only one small image. I thought maybe it was just a problem with the disc.....then I got the call.....arrrrggg. The dr. is fairly new at the hospital and he told me they are in the process of getting a new coiling machine, so there's another yikes!! More old equipment....
Hi Dana...I just welcomed you on your Home page and asked some questions...I am sorrry ... this post I think you have answered me...so I will read and respond...again...Welcome...~ You and Hubby have my prayers ~ Colleen
Hi Dana...Oh My God...how scary ??? I am hearing this more than not...about 2 things...paperwork in Doctor's offices getting lost...I am not sure I understand our society ... we have computers and things seems worse...
Now on hubby's coiled annie...I am so upset for both of you and all of us Survivors of coils...I was coiled 18 months ago...9mm leaky annie on my basilar artery...headaches like your hubby and droopy and painful right eye and swollen head at times...anyways...went for 3rd angio checkup June 12th and told the coils slightly compacted and residual is happening...asked to explain...told just a little bit of blood is getting through and feeding the annie...Gosh...I was in shock for 2 days...told to just wait for 2 years for next angio to check on this one...oh and annie behind left eye...now...I am off to a 2nd opinion...
I wish I could be more help...but I will keep you and hubby in my thoughts and prayers...~ Colleen
Hi Colleen, hubby's 1st was a 9mm also, in the ACA.....what is really scary is how little either of us actually know about the 1st, or I would give more info..... We are in the process of getting ALL of his old medical records, I'm usually pretty good at keeping up with his stuff but some how this slipped through the cracks.
Luckily his coils didn't compress and are intact, unluckily the old annie has grown and is almost as big as the 1st. Its on the side, near the neck, which dr. explained is a position where it is less likely to bleed (less likely, not unlikely....urrgg) BUT...(yep, the big ole BUTT) there is an irregularity at the top which concerns him......so, we still haven't found another dr., mostly because of unreturned phone calls (frustrating), and not really sure who is best....hubby is getting impatient, so the search is still on as long as I can hold him off.....he's a stubborn man ;)
I hope your doing better after your latest angio, I saw how it didn't go well....that's definitely scary, sending prayers your way...I hope you share your news once you get 2nd, and got my fingers crossed you get better answers, hubby and I both would've been in shock too.....
Its stories like yours that make me nervous since hubby may have to have a 2nd just so we can get a second opinion.....your were exactly right when you said "a never ending journey"!! I know another test is what needs to be done, but how much radiation, dye, poking and prodding can a body take before something goes wrong......or before he glows in the dark.....
Dana, welcome...so sorry to hear all you and hubby are going thru...
Based on my second and third opinions...I learned I misinterpert medicalese...which brought me strongly to rely on Dilbertese...
Ask the doc how the angios were deleted...and, what about the back-up system which usually fs/up daily...at least daily, if not sooner, for critical issues...
Based on this...you need to know about the doc and the facility for its quality...of its systems and back-up systems... You, your insurance, are paying for those...and, they are yours, and should be available to you...
I still get wickedly wired over the list of questions provided to patients to ask their doc...
I am still on the hunt to be positively and absolutely sure that the scans are gone....poof, waiting on a call back now...seems like thats all we do now is wait on people to call back....as for CD/DVDs, I requested one that day to be sure we had it, they gave it to me and that night we took a look since hubby didn't get the full run down of the scans, I was going to show him what the dr. showed me, but then I noticed what he had showed me wasn't there.....I figured it was just a copy error, ya know?! but it wasn't.............sigh.....
So I'm curious how any of you stay sane when doing internet research on hospitals and doctors....my head is spinning and seems like I'm just going in circles. Seems when I find a hospital that looks pretty good online, I talk to someone and they give me a "Don't go there, that place is a s*** hole"............urgg, ok, then back to the internet I go......
Anyway, sorry for the long response......but thank you very much for the info, and is there a list on this site of question suggestions for the dr.?
Hi All, quick update....we met with another dr. wednesday and it went well. The stress is getting to hubby so he just wants to get it done so......upcoming procedure set for July 17. WOW!!! Can't say I'm ready but its not my head and I'm going to support him on whatever he decides.....(though I may go bald while supporting him :)
So I'm searching the site trying to find recovery time/experiences for unruptured coiling. Spoke with the nurse today and she says he should be back at work within a couple of days to a week of the surgery........ummmm, I'm not sure if that sounds good or bad. So MY brain says "YAY, he'll be all better in a week!!Woohoo!!!" then my brain does a 180 and says "Umm, that doesn't sound right.....doesn't he need to recover, doesn't he need to take it easy.....it can't be...that easy"........yaarrrggguuula
Question to you all is, how fast have any of you returned to your normal life after the procedure, and how normal is normal?? My husband has a pretty physical job, so besided being panicked about the surgery, I"m a little panicked about him going right back to work.....
You need to urge your husband to get another CT angio. Accidents happen so it's probably not the doctor's fault, but he should still pursue the scan so he can move forward with a second opinion. Anything that happens to him, also happens to you. He needs to remember that when he makes the decision not to pursue a 2nd opinion.
I am so sorry to hear about all the trouble you are having. I know that your husband is scheduled to have another angio but if you ever want a second opinion I know an awesome doctor in Louisiana not far from Mobile. I totally trust this doctor. My daughter had one ruptured aneurysm and two others. At first things did not look good for her because of their locations but this doctor was determined to save her life, my daughter was only 12 years old at the time. He figured out a way to coil two of the aneurysm and the other he has been watching. Our last visit we were talking about a new stent that the FDA just approved. He said that he would never do anything unless he was 100% sure it would work. People come from all over to see this doctor. His name is Robert Dawson and works with Culicchia Neurological Clinic in New Orleans. Hope everything goes well for y'all and will start praying for both of you.
Bless your Heart and Hubby for his upcoming surgery...I don't think anyone knows how each person will heal and the length of time...it is different for everyone...
I am a housewife and do not work out of the house .. and the first 3 months after coiling I couldn't imagine working...but I am 47 years old...and had many complications ... so you can't go by me...lol...
Hi Jo, I just read your entire blog and I'm so glad you posted step by step. I know everyone will be different but just reading the good ones seem to help raise the spirits especially when you're doubting and second guessing everything. Hope your having a good time in Meridian, even though its hot, hot, hot. Not positive but I'm pretty sure its hotter up there than it is down here....
The procedure is scheduled to be done at Tulane University Hospital. Even though I feel more confident in the new doctor, they seemed so nonchalant about the procedure that it's setting off little alarms in my head (stress is probably making it a little worse).
Thank you for the blog, prayers and positive thoughts. It does make a difference and I'm thankful for this site for that reason. Hugs to you lady and hope you're staying cool up there.....hmmm, then again you did come over from TX so can't imagine it was any cooler there ;)
Thanks Colleen, I read your stories too and I'm so sorry for all your complications, but you have such a great outlook and positiveness that makes me smile when I read your comments. :-)
Hope you are feeling better lately and getting the answers you're looking for.
Hi Martha, we did just go for the 2nd opinion. We didn't have the images from the CT angio, but we did have the dr.'s dictated notes from the procedure (thanks Carole for mentioning that!!!) which we took with us. The new doctor reviewed the report and told us he didn't need another CT angio unless we really wanted to get one.....because either way he will be having one prior to treatment. At first I was kindof glad and of course hubby was too, but then (nagging feeling again) are we jumping in feet first without another..........whew, somebody just added loops to this up and down roller coaster ride....
Hi Janice, thanks for the information....I have heard of this clinic once before, I'm definitely going to check it out. So sorry to hear about your little girl, how is she now? Would love to hear your story. It is hard enough with a spouse but I can't imagine with a child.
We just went to Tulane on recommendations from others but its good to hear from someone who has had experiences with these gremlins. And to top it off, we are in MS so you are super close!!
Thanks for the prayers and sending some in return to you and your daughter
However, before agreeing to another scan, please insist that the doctor to go back to his IT dept and question them about their backup procedures. There may still be file that can be retrieved. Please also ask him for a copy of his written/dictated notes.