Got answer on the nose clots and Basilar Tip Annies

Went to my post op appt. today and questioned the doctor about blood clots coming out of my nose Saturday. He said that during anesthesia with all the tubes and heparin being pumped into me (along with the aspirin and Plavix), that I probably had a slight bleed and once the heparin cleared my body, the blood formed a clot in my sinus. He said not to worry as long as it is a one time thing - if it happens again, I should call him.

I also questioned him about a comment he said the first time I saw him - that Basilar Tip Annies tend to spring new ones. He said because of the blood being pumped up the artery, if there is a weakening at the top, it is more likely to eventually form an aneurysm or to damage the annie that has been fixed. Therefore, I will be monitored more often. I have an angio scheduled for 3 months at which time he will decide if I can go off Plavix and then I will hopefully know how often I will have to see him and have the angios in the future.

Another thing I have mentioned, I called the office Saturday night because of the clots and was told that the dr's don't take calls after hours from patients - that I needed to call the ER. My doctor said today that I should have been told that the ER always has a neurosurgeon on call and when I call the ER, ask them to have the attending NS call me back - they do talk to patients after hours, but you have to go through the ER operators.

Other than that, he told me I can not play for the NFL (or any contact sport or any sport where I could be hurt or bruised, including bicycling). But those are my only restrictions, so that I can live with.

Hope everyone had the wonderful weather we did - it was gorgeous and I finally felt well enough to take the dogs out to the school fields to run off leash. I, overall, had a really good day.

I hope everyone is feeling better!

Sherri

Hi Sherri...he sounds like a great Doctor...and the nose bleed clots makes sense after the explanation...

I am a bit upset...I have been trying to get copies of my Neurosurgeon's records for almost one year...long story, but You know my Aneurysm was 9mm basilar tip...that was coiled...well I read what you wrote about more on that artery once you have had annie on basilar tip...well I was told I have an annie behind my left eye, small...watching and waiting...lo and behold I got my records today and no annie behind my left eye...it is on the basilar axil artery...I want to know more...I am calling my Neurologist tommorrow...I am sorry if none of this makes sense...just a bit upset...thought I was past the worse...and anything on the basilar artery isn't good, no matter how small or big...

Oh I am sorry for going on and on...thanks for listening to my vent...

Cyber~Healing thoughts continue your way...Colleen

Sherri-so relieved to hear your news! Hopefully, things will only get better for you from now on! Good luck and God Bless! Cece

Hi Sherri,

I'm so glad everything is falling into place and your questions are being answered . I'm sorry not to have gotten back to you sooner but my sister had personal issues and I havn't been on in a while .

I'm glad Dr. Schirmer enlightened you to their protocols . It's great when your put back in the loop and now know what to do.

I'm glad your feeling better,but still, don't over do too soon

All my best,

Joan

thats intrigued me as well, seeing how my 5mm rupture was on the basilar tip...but was never told anything by my nuerosurgeon or nuerologist that i could expect it to not hold or more annys to come...they all told me it was obliterated n shouldnt have to worry about that location creating any other annys,,but everyones different...take care n God vless

Joan, glad to hear from you - did you ever schedule that test? I hope your sister is all right! You were right, I really do like Dr. Schirmer and think he knows what he is doing. I had briefly thought about going to MGH, but the personal care I am getting from Dr. Schirmer is so good that I am glad I chose to stay with him (of course, your recommendation helped me decide!)

Colleen, please keep venting. There is so little on brain aneurysms, that we need to inform ourselves and each other (and besides, I have found that venting really helps me!). We deserve to vent.

I can't believe it took that long to get copies of your records! I guess I am so lucky in that every time I ask for a copy, they give it immediately. So sorry to scare you and anyone who has basilar tip annies, but I am glad to know all the facts! The only thing the doctor has not been forthright with me is if the annie had grown between the diagnosis in March (MRA) and the angio in September. All he will really tell me is that comparing the size between the 2 tests is different - he said it could have been slightly larger (the MRA said 3 mm - I forgot to ask for a copy of the angio test). I did find out that he used 2 coils, but he said they come in 2 different lengths, so the number of coils is irrelevant in that respect.

Considering you are getting conflicting reports, maybe you should get a 2nd opinion from another doctor - I would be upset, too. How often are you getting followup tests? Let us know what happens - what you are saying makes perfect sense that any of us would be upset. Please vent and keep us informed.

You have been so great at welcoming all of us and lending support - now is the time for us to give you support, my friend.

Sherri

Cece, I read your bio - I can't believe they do not want to repair an annie that large. I am 56 - at the first appt. I had with the neurosurgeon before my angio, he said that even though my annie was small, my age and the location were reason enough to fix it. After the angio, he said that he didn't want to wait 3 months (I had waited 6 months to even go to the Dr). Mine, too, was found by accident looking to find a reason for an ear problem - thank goodness, not traumatic like your injury.

How is your neck doing? Has your speech, etc. cleared up? Will keep you in my prayers.

Sherri

Michelle,

How did they fix yours? From research and what my doctor has said, unless they clipped it, there is reason to check a coiled one for the rest of your life. My doctor said there is a 30% chance of recurrence because of the location.

I now live in MA, but grew up in Dallas - lived there for 38 wonderful years (although I don't miss the summer heat, but really, really miss the winters!) And the wonderful, friendly people, although where I live now in the country, they are wonderful! God bless you and good ole TX!

Sherri

Hi Sherri,

So pleased you found your answers, sounds like you have a great doc, half the battle won, You have come remarkably far in such a short time, and done so with such a positvive attitutude. Well done you!

Enjoy your day

Gaynor

Hi Sherri...Thank~you so much for your kindness and response...it meant so much to me...

I am going to talk to my Neurologist today...(hubby thinks I am reading the report incorrectly) which could be, some of the medical jargon is difficult...truly, my Neurologist has been my husband and my Life~support through all of this, it has been the surgeons at the University...they are great at what they do, but no bedside manner...and difficult to get a record, etc., from them...even signed a paper to get copies and still have not rec'd...There are only so many hours in the day...and sometimes everything feels like "pulling teeth"...and I am not as good with fighting the fight even for "me"... but Today is a New day..."onward and upward" ...

I will keep you posted...like you Sherri...I am an advocate for me...and would rather know the facts then not know...I have so appreciated all of your information, it has been helpful...

Hope You have a Beautiful day...! Cyber~hugs Colleen

hey sherri,

i had coiling w/platinum coils..so good so far..i got a high dollar head..haha

As an aside to Colleen,

I hope all went well with your surgeon and that you have calmed down!! and Ditto everything Sherri said. You are the sunshine in the darkness of our days!!!! We are all here to let you vent for once.

Hugs and please let us know how you make out!

Linda

I know that feeling - am going to hate to get those medical bills. Did they put a stent in yours?

Thanks Gaynor!

Colleen, are you seeing a neurologist and a neurosurgeon? I have only seen a neurosurgeon and he is the one who will do all followups. I have seen others who have also seen neurologists. My doctor initially told me that I needed to see a neurosurgeon, not a neurologist. Just curious as to why others are seeing one as my neurosurgeon is supplying all the medicine, etc.

Like I said before, please let us know what your doc says about the report!! And no need to thank me for any words - I meant what I said - your welcoming brightens our day and gives us strength (you, too Linda). With affection to all,

Sherri

Hi Sherri...I talked to my Neurologist yesterday...he sent all the paperwork he rec'd from my Neurosurgeons...and this shows I am compatible to have an MRI...(I have an adenoma on my adrenal gland)...but when I asked him about the other annie...he told me that he and my Neurosurgeon argued over this situation 6 months ago...and Surgeon calls it something other than annie, and doesn't expect growth, but they are watching everything in my head...yet...with my 6mos angio checkup...they Surgeons said, Coiling working on basilar tip and other annie that is 2mm no growth...what the heck? I am too exhausted to pursue at the moment...and now my Neurologist wants me to do my MRI at his University so he can have Moffitt Cancer read the report...and they are good...I will not be back to Tampa until January 2012...in Indianapolis right now...so I will deal with one thing at a time...gotta stay calm...and that isn't me...

Again, Thanks Sherri...and believe me...you have a keeper of a Doctor...I am at my Doctor's Mercy's...

Cyber~Hugs Colleen

Sherri-the first doctor I went to wanted to do an angiogram followed by surgery to put in the Pipeline stent once he had better pictures. Found the aneurysm late July, saw this doctor within 2 weeks or so and had the angio scheduled for 9/12. My son was graduating from Army Basic Combat Training at Fort Benning, GA, and I didn't want anything to interfere with my attending his graduation. So I planned the angio for before and was going to schedule the surgery for late Sept, early October. Well, as I have found, I am not in control here, God is. My husband and I drove the 2 hours to the hospital for the angio, leaving at 3:30 am to be on time, only to be told my procedure had been canceled....no reason, no apology...just "You will have to call the office when they open at 8:00." Well, needless to say I was pretty PO'd, husband took off work, I was mentally and physically prepared, only to have it canceled without my knowledge. When I called the office the surg. scheduling nurse danced around, said she called, left a message, which I returned and left a voice mail for her b/c I was confused about her message, and she never called me back...long story short, office screw up. Went to GA for graduation and they were to have called with a reschedule date by the time I got back. No message, nothing, nada, zip. So, off I go to another highly recommended doctor for a second opinion. Doc 2 wants to watch and wait and wouldn't have even suggested an angio b/c of risks involved with that. He did order a CTA which I had under his orders and on which he based his advice. Well, I am not a wait and watch kind of person, I want results and I want them now, unfortunately. I had a follow up with the neurosurgeon who performed my Kyphoplasty and told him how I was treated by his buddy that he recommended, that I felt I was part of an assembly line, a statistic, not a person...blah blah...and that I went to another doctor for a second opinion and was even considering a 3rd! My husband had wanted me to go back to this guy after seeing Doc #2 and get his opinion, because we both hold him in high regard. Well, after long, silent, awkward pause, he says he sent me to Doc #1 b/c he's the best, he's done hundreds, if not thousands of surgeries and is one of THE best doctors in the country in his opinion, and that's where he'd send his mother if she had one. I decided to give Doc #1 another shot, and scheduled another consult. I went in with a file folder 3 inches thick with over 500 pages of case studies, reports, etc. and a list of questions. I think I was in shock the first visit, but I came prepared this time, complete with recorder because my husband couldn't go with me this time. I told him about the screw up in the scheduling, he'd had no idea I was there and had no knowledge of what transpired (course not, nurse isn't going to tell him!) and apologized and said that it is a direct reflection on him, as he could tell I was not confident or comfortable, and that from now on I was only to speak to the office manager when I called. I kind of felt like I one upped him and brought him down to my level at that point and we were on an even playing field and therefore, could move forward. Sometimes, their egos get the best of them, and when you point out they, too, are fallible, they approach you differently! I left his office with a "I'll let you know what I decide about the angio." and him scratching his head! Called his office after talking with hubby and scheduled it, but on my terms...my husband was only available Thursday or Friday 11/10 or 11/11....apparently they do angio's on Mondays, scheduled surgeries other days, office visits other days and teaching/education other days. Well, office manager calls back and he agrees he can do it 11/10. I was the ONLY one that day and I am so glad I did it. The pictures showed it was actually bigger, not that it had grown, but he said the pics were in real time, not computer time and more accurate. MRA/CTA show computer interpretations, not actual size...so he was surprised it was actually 12 mm and the baby annie showed up this time, never did on any of the other tests, and that it has expanded out of the cavernous sinus, leading to higher rupture risk. He was also able to get clearer view of the neck which is smaller than shown on previous tests, making me a candidate for the Pipeline device. See, he had said, if it was confined to the cavernous sinus, he also might advise to watch and wait. But, it wasn't and it has a daughter sac which concerns him. After my angio, while in recovery, I called his office manager and scheduled the next available surgery slot for the PED, because they have to fly people in from the company to oversee...which I understand is common for a newer device. He has put in thousands of stents, just not this new one as many times, but I am 100% confident in his abilities. All along, this whole journey has been out of my control and out of my hands. I didn't want to get on that boat, but I did. I broke my back and had successful surgery, but speech issues they say are not related to the annie....but my surgeon kept sending me for tests, had a CT-nothing, sent me for MRI/MRA and that's how they found it. Then to have angio scheduled to get there and be sent home?....How crazy is that? I was able to attend my son's graduation and explain my issue with him in person instead of over the phone and relieve any anxiety in person. Huge relief for me to be able to do that for my child as we had told him nothing so he could keep his focus on his training....and then the second doctor and me being impatient and persistent. And having the angio and coming through with flying colors, the arteries of a 22 year old he said! I know this sounds crazy, but I have been blessed...blessed to have found this so that I could fix it. I woke up one morning to that mantra...found it to fix it...bizarre I know....but it's what I keep telling myself. The size of it scared the crap out of the guy who operated on my back, I just keep saying, it's no big deal...it's been there, it'll be fine...He even slammed his head down on his desk during my last visit...I think he wanted to smack me! Hahaha But that's what all of them told me, it's not emergent, but should be taken care of at some point. Well that point in time has come, I now feel I have tempted fate and God enough. Doctor even said I could wait till after the holidays, but something tells me I need to go and go ASAP....so next Monday it is! And I am not the least bit nervous, am no longer having depression or crying bouts, because I have come to the realization it's all to no avail. What is meant to happen will, I am healthy, eat healthy, don't smoke, never have, have cut out all alcohol and anything that might raise my blood pressure, walk a couple of miles daily and have a family and friends that love and support me. All in addition, to a fantastic, gifted and dedicated surgeon who understands me and where I am coming from. It's been a long journey, and I am ready for whatever the future holds for me. I feel I have been truly blessed and only hope and pray my luck continues until next week.... To answer your questions, my neck is fine, have never had a headache, speech fine, memory a little off, but isn't that true of most women in menopause? I am truly asymptomatic....am going to the eye doctor this week to have him have a look...I think he will find it quite interesting...he never spotted it in any of my exams, it truly was a hidden, silent annie...Only by the grace of God did I find it. Sorry this was so long, but I just have to share this story, b/c it has so many twists and turns to finally come to this place where I now am, calm, peaceful and ready to live the rest of my life! Thanks for listening and especially thanks for prayers! Will keep you in mine as well...Cece

Cec, is your surgery today or next week? I am glad you are not delaying and glad you went back to the surgeon that you feel really comfortable with - it makes a huge difference. Can't believe they didn't notify you properly before the missed angio!! The anticipation is hard enough without traveling so far and then not be able to have it!

My doc's office had to cancel my post-op appointment when they didn't have electricity 2 weeks ago due to the snowstorm here in Western MA. The office manager called the afternoon before and left me a message. When I called back to re-schedule, they gave me an appt. for Nov. 29, which I said I needed earlier, but the receptionist said she would leave a message for the doctor's asst. I received 2 messages the next 2 days from their office and then the asst. called me at the end of the week saying they had electricity, could I come in on Tuesday? I feel very confident with my doc and his staff.

I should read up on Peds. Good luck, and let us know how you are doing (or ask your hubby to let us know). It took a few days for me to be able to go online afterward.

PS - the long story is called venting, which is what we need to do!! Glad to read yours, I'm sure I have written a book already! You and your family in my prayers,

Sherri

Are they going to do an MRA also? I am a bit confused - is the MRI for the adenoma? And are they thinking they might need to remove the adenoma? I had two of these in my breasts (although they don't really do any damage there).

Yes, those of us with great neurosurgeons are very lucky. I hope you will be fortunate enough to find one eventually that will shed better light for you - bedside manner is so important! Let us know when you are doing the MRI and results when you get it. Congrats on your 6 mos angio results!!

Sherri