Anna's Heart Valve Journal

I'm really not sure if I was supposed to have a six month follow up after surgery, so I guess I'd better contact Dr. Stewart's office. I was worried about a few chest pains and some minor swallowing and choking issues and found out that I have a hiatal hernia. The proton pump inhibitors aren't controlling it so they are recommending surgery. So...guess I'll eventually set that surgical consult up. I have polyps in my stomach from the PPI's but I guess I'll be on them the rest of my life because they found something rare (SURPRISE-haha), I have an inlet patch and it encompasses 60% of my esophagus and is releasing some mucosa but should be controlled with the PPI's. My esophagus is quite an interesting little organ. lol Anyway, off for a long drive today to see my son before he starts the new college semester and to celebrate both our birthdays. Everyone have a beautiful and blessed day! As Adam would say, Keep On Ticking!

My son and I just a few weeks after surgery. We were out with my husband at one of our favorite restaurants. The scar didn't even look bad then.

Update: This is Anna, I had my 3 month check up, CT scans of the chest, abdomen and pelvis and everything looked great since surgery. A few other problems were found and I ended up having back surgery. 15 staples across my lower back from having 2 over 7" cm of lipoma tissue removed. All of it couldn't be removed as the doctor said it's like one giant one that is running along my spine, and all over the lower lumber back. After that, I had my staples removed the 30th and it's healing great, then the 31st, I had an EGD as I've been again experiencing chest pain, a small amount of choking and major heartburn. I have a hiatal hernia and will need surgery for that. I also have a lot of polyps in my stomach from taking proton inhibitors for GERD. We're waiting on biopsy results on those but apparently they're pretty much always benign. I also had something called an inlet patch, which is some stomach tissue lining in my esophagus so they biopsied that as well. Just waiting for results and a surgery date for the hernia. This one will be an inpatient stay. We thought we'd start 2015 off without more surgeries but are thankful that they find and fix the problems. Hope this finds everyone happy and healthy in the new year!

I am feeling amazing and just have an issue that seems to be minor but I'll keep track of it. I've been getting kaleidoscope vision once in awhile and it pretty much will stop me, no matter what I'm doing. I get a little nauseous and have to stay still due to the vertigo like symptoms. It's not frequent but it is new after the surgery. I should get the orders from Dr. Stewart, this month for a CAT scan, routine follow-up, so I won't worry unless that shows something to be worried about. All in all, this has been the absolute best surgical experience of my life. Unfortunately, I have a few under my belt. lol I'm blessed and continually thankful to Dr. Stewart and Dr. Ellozy. Thank you!!!

And this past weekend!

The scars are barely noticeable!

After surgery, but NO ICU

Well, I'm a little over 6 weeks post-op and feel so good! The only problem is, I've been experiencing episodes of kaleidoscope vision and it just hits at random times. Not while I'm driving yet, thank goodness! Sometimes I get a headache or vertigo with it. I just had it and it just suddenly cleared up.

Going to NYC was the best decision I've ever made, regarding my health care. Both surgeons were informative, patient, great bed side manner and best of all, very skilled.

My scars are hardly noticeable. The neck, inner elbow and groin. I had a subclavian to carotid bypass and three stents put in.

I actually have to be a little careful, because I had such a lack of sensation in my right hand before that I could stick in scalding water and not even notice. It always worried my husband and son. Well, I can definitely feel it now! So that's a good thing :)

The best part is not waking up at night gasping for air or having to make sure someone is around when I eat or take medicine in case I choked.

I'm so blessed for this community and for my community that has done a lot in the way of fund raising to get us to NYC and for the lodging (WOW it's expensive. lol), their support, kindness and prayers. Thank you to all of you and May God bless each and everyone of you!!!!!!!

(I am so behind on thank you cards, it's shameful but I will do it. It's never too late to say thank you!)

I have so much to write but am really tired tonight. Dr. Allan Stewart and Dr. Sharif Ellozy performed my surgery June 19th. The surgery was 5 1/2 hours long and as told to my family, "was a perfect fit".

I can't say enough wonderful things about both surgeons and for the rest of the teams and staff at Mt. Sinai.

My family was told that I'd be in ICU after surgery and eventually move to a step-down unit. I skipped the ICU and went straight to the step-down unit and was in a room that evening. I stayed one night in the hospital and was given the option to stay a second. In retrospect, I should have stayed the second, but every thing worked out fine.

More details later and many thanks to all for the love, support, prayers and wonderful care I received. I am indeed so blessed and I will recommend Dr. Stewart anytime anyone asks about any cardiac care!!!!!

I see Dr. Stewart is the Spotlight surgeon right now. How appropriate for me. lol I talked to his office this morning, Angel Flight had called me saying it was important they had a little time to make arrangements. Understandable!

They had planned on the 9th, but I was a bit worried about it being that fast, my mom and son need plane tickets and it gets so expensive that close. Then Deb said the week of the 16th would be better for them anyway, so that was awesome.

I'll have labs, pre-op and all that stuff and then I believe, the surgery the 17th.

My fundraiser is the 14th, so we'll either leave before it and they can party on without me or we'll be leaving the day after. Father's Day. Either way is great.

Very worried about lodging and the expense, near the hospital. First hotel I tried was booked up and everything is over $200/night. That's like a million to us, but the funds from the online fundraiser should cover lodging. The church fundraiser will pay Dr. Stewart and the hospital directly so that's a really good thing.

The dance/benefit will go to the doctors and hospital too. Getting ready to call my insurance and try to get this authorized as in-network. They said it should be a problem, last time, since my condition is so rare. I guess that's the upside to it.

I'm running on nervous energy right now so I'm going to get off the computer and use that to my advantage!

Thank you to everyone who has been such a huge support!

Much love to all!!!!!!

Anna

Well, I went on the 20th and had the lower lumbar spinal injection; the doc "slipped" with the first injection and showed me afterwards on anatomy skeleton what he did. It didn't make it hurt any less, but I understand things happen. The second one was on the money.

The Synvisc One is a pretty big needle. They basically took the old three shot Synvisc series and rolled it into one injection. Again, this one seemed unusually painful and it took him awhile to find the "right" place to inject. Oh, and the pharmacy messed up and only had one injection available not two, so I chose the right knee. It's a blessing in disguise that I didn't have two.

The day after, my left calf ached some, but just enough that I was wondering if I had aggravated it by walking in flip flops. By the next day it was very obvious that wasn't the problem. My calf was huge, tight and hurt worse than anything I had ever had, and I've had my fair share of pain. I called and they said to ice and elevate and if it gets hot and red, go to the ER. It just kept getting worse and then by Sunday night, my foot looked like I had broke it. It's still huge, bruised and bloated. It was incredible how fast the bruising came on. I went to my appointment yesterday and they were a little freaked out by how it looked. The thing that got me was that the doctor kept saying, oh, that bruising can't be from the injection, you must have twisted it. That, I would remember, plus the nurse had already said it looked like a hematoma bleeding down. They did not have an in house ultrasound tech on duty so wanted to know what hospital I wanted to go to. I picked my home town. The doctor said their might be a blood clot and it could cause a pulmonary embolism. This was a week to the day after I had it. He even had the other injection in his hand for my left knee. Ummm....no thank you! I did ask if it was the same batch and lot and he said yes, I told him I wouldn't want that one anyway. I've since read some pretty scary stuff about the Synvisc One. The pain I'm still in and my whole foot is just starting to turn blue; yeah, I think I'll pass.

Dr. Stewart's office was going to call me as soon as he spoke to a vascular partner to see if he would join in on the surgery. I'm having a hard time waiting, but his receptionist let me know that they would get hold of me. I got the hint, but I don't think I'll last another week without calling.

The online fundraiser has gone amazing, Angel Flight is handling the tickets, but wanting a surgery date obviously, my land lords told us to forgo June rent for NYC and the things I get in the mail are crazy. Our church has set up a fund raising account and they will directly pay medical bills right out of that for us and that makes me feel much better. My wonderful friend Scott that I graduated high school with, and his band, are donating their time and talent, their band will be playing at a charity fundraiser at the local Catholic Church that another high school friend's parents, are paying for. We'll be having a charity dance June 14 and if I'm in NYC then they'll just have to have lots of fun without us! lol

I need to go elevate again, but hadn't posted an update in awhile, so there it is. Thanks to all of you for your prayers and support!

Dr. Allan Stewart, I look forward to meeting you!!!!

I made it to my pain clinic appointment today and it was every bit worth the 60 dollar co-pay. The neuro. did a lot of the usual neuro testing; went over my crazy medical history, stacks of MRI, CT's, reports etc. and confirmed I'm not crazy, my spine is curved! Haha A little twisted humor there. Oh stop me now, I think the lidocaine and steroids have seeped into my brain!

Regardless, five trigger point injections later, a little pain and blood to go with it and I have range of motion in my neck and shoulders that I didn't know existed anymore! I realized that I didn't have as much choking going on tonight either and that the chest pains were very few. So....either it numbed a lot of things or the intense pain was intensifying everything else. I'm going with the latter, but I'm just the patient, not the doc!

I have an appointment on the 20th of this month to get the lumbar spinal injection into S1 and the Synvisc One into both knees. Oh joy! I'm not going to lie, the lumbars are not a problem, that Synvisc in the left knee, had me clenching my fists trying not to punch someone. For days I thought he had really messed up because of the intense pain and swelling, but.......I also remember when it started to feel better, it felt better for almost a year!!! So...I'll suck it up, not look at the biggest needle I've ever seen in my life and think about the relief!

At least I can go into the heart surgery without some other parts being quite so painful. That's the goal, anyway! My multitude of lipomas seem to get quite the varying opinions from docs, specialists in all kinds of feels. I'm old enough to know what I feel, so here's a fact. Some of them hurt! Not just the ones touching nerves or attached to spines, but just some free floating little ones. The huge ones are aggravating but it doesn't seem to affect the pain level. He did give a new view that I hadn't heard; that people with arthritis throughout their body seem to have a lot of these. So, something to drive myself crazy researching! lol He confirmed the fibro..almost all 18 tender points, but still had that tone that I'm not sure he'll actually diagnose it because the theory is that it can only be diagnosed when everything else is ruled out and I seem to "have everything else". Whatever. I'll just keep on keeping on cause that's just what you have to do! Oh, he also did confirm the Thoracic Outlet Syndrome which is good, but come to think of it, he really didn't address if I should have therapy for that or not. The stinging pain just reminded me of that. Of course that could be from all the bone spurs from C2-T1! Oh my! This is like science fiction. On that note, I have convinced hubby that I should donate my body to science, I'll pick the school and it's not going into writing immediately. I don't want anyone that anxious to get their hands on it! haha My soul is going to heaven and if my former shell can help teach, heal or save then my life had some more meaning!

Wow! One glass of champagne and I've become a philosopher! I guess that means it's time for me to take a hot shower and go to bed. More fun and games tomorrow!

Blessings and lots of love and healing to everyone who's come upon this site for whatever reason!

Anna :)

Horseback riding/mountains & ocean

Dr. Stewart's office is going to call me back after lunch. I'm ready to get a definitive date with that and learn more about funding, costs, where hubby and mom can stay. Daniel might come, my son, and my mom will be buying both their ticket's so it doesn't come out of the fundraising money.

Tomorrow I go for my lumbar injection. So ready! Now if I could just get in for the Synvisc One at least that would be less pain to worry about.

I ordered the book and am checking the mailbox every day. I sure hope it gets here tomorrow! I want my family to have a chance to read it after I do.

The things, regarding fundraising, that people have been doing for me have brought me to tears of joy more than once. And how wonderful to see a donation from someone off this site this morning! I can't wait for the day when I can pay it all forward!!!

I'm going to go out and plant in our garden while I'm waiting on these calls. It's a beautiful 82 in Missouri today and I don't want to miss out on that!

Peace, love, healing and prayers to all the wonderful people on this site ! Thank you for the support!!!

Well, I decided to contact Dr. Stewart in NYC as I had spoke to him before and he had said he'd look at my scans and I hadn't heard back from him. I wanted his opinion as well, as I knew he was highly respected.

He kindly promptly replied and said that he could do the surgery quite easily. Since money is an issue for us I took the advice of some friends and started a fundraising site on Go Fund Me. My Facebook friends have been so supportive and really gotten it rolling today. This will help with travel, meals, Tod's time off from work, etc. Very thankful for this.

I hope to hear back from Dr. Stewart this week. We plan on keeping the consult, at this time, in St. Louis because we are so afraid of losing all the surgeons but we are being straight up about our decisions.

This site has been such a blessing. I hope my book gets here tomorrow.

Oh, the pain clinic sent me for a street drug test at my primary care's yesterday (which even the doc thought was odd, but I didn't care as that's not an issue) and my consult is Wednesday, so hoping to get the lumbar injection by the end of the week. SO much going on but as long as it's forward, it sure helps!

This is the link to the fund raising site. <object classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" width="258" height="338" title="Click Here to donate!" type="application/x-shockwave-flash"><param name="movie" value="//funds.gofundme.com/Widgetflex.swf" /><param name="quality" value="high" /><param name="flashvars" value="page=Share-your-heart-for-Anna&template=8" /><param name="wmode" value="transparent" /><embed allowScriptAccess="always" src="//funds.gofundme.com/Widgetflex.swf" quality="high" flashVars="page=Share-your-heart-for-Anna&template=8" type="application/x-shockwave-flash" wmode="transparent" width="258" height="338"></embed></object>

It's been very helpful.

I'm wiped. Good night everyone!!!!! <3

I didn't hear back from Dr. Brinkman's office all this time after the surgery. My gut was really telling me to go with Barnes-Jewish as everyone I know that has been there sings their praises. Dr. Luis Sanchez/Chief of Vascular Surgery will do the first surgery. I understand going through the neck and bypassing the extra artery into the carotid. Then a day of "rest" in the hospital and then cardiothoracic surgeon Dr. Marc Moon will go in via thoracotomy to ligate the end of the artery that's running into the right arm. This is how I understand it as now. I have my consult in St. Louis May 13 and although they suggested I do the surgery the day after, we'll come home to be able to go through all of the details of the consult thoroughly with family members. With both of my sister's recent deaths, and me living here closest to my parents all these years, they are having a tough time with this.

To top it off, I take dad for another MRI Monday as they are monitoring a lesion on his brain. Mom is supposed to go in to have her esophagus stretched. She's very unsure about this as am I. Her symptoms are an awful lot like mine and I'm wanting them to take a closer look at her heart.

My primary is trying to get me schedule for another lumbar injection into the S1 as my sciatica is in full swing from the ruptured disk. He's also getting me into the ortho that did my Synvisc One injections last year to do them again. I don't want all that hurting while I'm recovering from these surgeries.

The lipomas that were taken off both sides of my spine are rampantly growing all over my back and they found one in my stomach. I just can't deal with that right now. The goiter on the thyroid doesn't seem like much right now. lol

I'm trying to stay upbeat but today has just been a bit rougher than usual. On the bright side, my hubby and I have rented a beautiful cabin in the hills of Arkansas for two nights this weekend. Woot! Woot! 180 acres of private land with a stocked pond and lake, hiking trails, canoes and paddle boats. The cabin looks insanely gorgeous and is stocked with everything. We have a nice grill on the porch, swing for two and rocking chairs. I can't wait. Our son is coming home from college to house sit so I get to see him Friday and Sunday which is just icing on the cake.

Oh, went and had a lipid done since I realized that I hadn't had my cholesterol checked in 2010. My thyroid function tests came back good but my blood sugar was borderline elevated so I was sent home with a glucose monitor and am supposed to check that for three weeks. It hasn't been that bad and it's making me eat better and exercise again, so maybe it's a good thing.

So, that's where I'm at in a nutshell and I still haven't found one other single soul with my problems. I'm sitting here getting shoulder spasms and back pain form Hades so took a muscle relaxer which I generally abhor but I'm a bundle of nerves tonight and need to chill.

I hope this finds everyone on the road to recovery and full of love and hope. God is good!!!!

Well, I don't have a lot to post as I am still waiting on Dr. Brinkman's opinion after the barium swallow. My primary switched my blood pressure medication, at my request, from metroprolol to carvedilol. It seemed like I was gaining weight really rapidly on the former. I've managed to do enough of that on my own and I'm so short that ten pounds looks and feels like twenty. I'm gardening a LOT right now and being more active, also starting to go back to some health shakes, so I'm hoping to get into better shape before any procedures. My blood sugar was high so he sent home a glucose monitor for me to check it for about three weeks. It only had ten strips and I'm trying to get insurance to pay for more. I guess I'll break down and buy some this weekend if they don't approve it. I really don't think I have diabetes but it's good that the PC is checking it thoroughly. We have people who have talked about doing a fund raiser to help us with traveling costs and bills, but I want a firm answer on what we're doing before any of that happens. I'm usually the one organizing or helping with things like that and it's awkward being on the other side of the fence, but......it's much needed and appreciated. I still haven't met one person on any site who has my condition. I guess it's not a necessary thing but it would be reassuring. Anyway, I'm waiting for a package in the mail from my brother-in-law. He went through my sister's things and is sending me a box. I'm half anticipating that and half dreading it. That won't be a good day. I have many things from my sister Jeanette, and it does make me feel closer to her but I have to be careful not to wallow in my grief. It's very hard having these fresh wounds from their deaths and dealing with all of us this without them. We would be on the phone constantly if they were alive. I miss them very much. My husband and son are my strength and I try to be strong for them, as well as my parents. I think I do a pretty good job but I have my moments when I don't even like myself. Just reading other posts on this site helps me feel human and that it's ok to handle everything the best I can. I better get to bed and try to sleep. The nights are hard but I want to help my dad in the garden tomorrow. Busy is good! God Bless you and all and stay strong!

Well, it was a battle, and I still don't know why, but after numerous calls from me, visits to the hospital, medical records, radiology, the doctor faxing STAT requests, etc...a call to the supervisor of radiology this morning, with quite the flow of apologies, resulted in the radiologist being ordered to read my test, that was done over two weeks ago and to have the results ready for pick up at my local hospital. I got them after five and wanted to scan to the surgeon's office that ordered them, and of course my scanner won't work. I do have copies that I can mail to the surgeon in St. Louis as well as the one in Plano. I'm pretty good at somewhat interpreting results, but these are just too technical for me, so another sleepless night waiting to hear.

Oh, my new thing that used to happen very rarely. Night terrors. As in horrid dreams, mostly about my two sisters that recently passed away in questionable circumstances. I have been reading a lot of books on NDE's so probably not helping. Also my Bible a lot which I'm sure helps, but lots of thoughts swirling in my mind. I wake up screaming at the top of my lungs repeatedly during the night and my poor husband has a time getting me awake and calmed down. He has to get up at 5 in the morning to work and to work overtime. He's a disabled combat veteran who went back to work so I would have health insurance. It's admirable and I love him more than I can say for it, but sometimes the guilt of it lays pretty heavy on me, too.

Apparently it's National Siblings Day. Yeah, that's not helping much. My sister Madge passed away in October and I hadn't gotten over grieving my other sister Jeanette, and this happened. I helped my mom with all details of both funerals and gave the eulogies and we all thought we would start 2014 with a brighter outlook. Nope.....of course, more medical issues.

My husband and I were married in August 2011, I was diagnosed with endometrial cancer or severe hyperplasia depending which doctor you want to ask, in November 2011. Either way, it resulted in a radical hysterectomy and frequent trips to the oncologist after. Then I had back surgery for huge lipomas growing up both sides of my lumbar spine. After that my husband had his second spinal fusion. Through it all we have enjoyed life, love and family but to say there are days when I don't feel that I can't handle the weight of it, then I would be lying. Today just feels like one of those days.

I'm an optimistic, generally happy person, so tomorrow's another day. I helped at our church's Lenten service this Wednesday and some of the ladies were asking about my health. I didn't realize I was explaining what was going on with a smile until one of the ladies says "you say that with a smile and a laugh". I just said you have to laugh or go nuts. It's questionable, by the way, where I stand on that ;)

Ok, The report has a lot of different things in it it, but I'll focus on the Impression:

1. Thoracic dextroscoliosis with an associated aberrant right subclavian artery which does result in indentation upon the posterior esophagael wall at the level just below the thoracic inlet. The findings would be compatible with changes of dysphagia lusoria.

2. There are 2 additional ares of indentation upon the posterior wall of the aorta in its mid and distal aspect related to the tortuous aorta from underlying dextroscoliosis.

So, I tried to look some of it up but I'm just too tired. I'll wait for the doctor's opinions. I do know that all the doctors or people who kind of blew of my scoliosis, in the past, when it seems to be getting worse to me and I know what pain I was having and now do have, should have a slap on the wrist. ;) I'm a pretty pain tolerant person and an old Missouri farm girl who takes off her Sunday best and pearls and goes outside and runs the tractor, tiller and picks up some big ole logs when needed. I will find the right surgeon for this and I WILL beat it. I miss my sisters badly but they'll have to wait on that Heavenly reunion.

Love and hugs to all and sleep well. God is good and my faith is just getting stronger. He is testing me and I plan on passing <3

Well, I had the test March 26. I picked up the disk of the test itself within days of getting the test. The radiology report has been a different animal entirely. I have never gotten the run around so bad before on the written report. I'm starting to think the Cox health system realized they screwed up two years ago with the neuro not following up or even mentioning all the findings. I just want to deal with what's wrong and how to fix it, not who screwed up where. I have been feeling guilty for thinking I'm not grieving my sister properly because the findings, fir me, were so soon after her death. My other sisters death in 2010 was something I never quit grieving. I loved thhem both but am afraid I'm becoming numb to so many problems. I hate to think that...it's not who I am at all. Then again, every night I've been having bizarre dreams about both my sisters. I think I'm just stuffing as a coping mechanism. Regardless, praying the results come this week. Too much time to over think!

Fingers now after getting better...

I'm getting ready to leave for the Barium Swallow test, but wanted to kind of remind myself about something to tell the doctor.

The last couple of years I've been having problems with my feet and hands and after studying on it, it looks like classic Raynaud's. Now a doctor hasn't specifically diagnosed it as I guess there's no test. So primary just jots it down. I think. lol

I took pictures today because my fingers were really bad today and I have been cold. He put me on a beta-blocker and I just read that can make the Raynaud's worse, so that might be a contributing factor due to the past week's flare ups. Basically writing this as a reminder to tell the surgeon. Does anyone else have this problem?

Class reunion with hubby-2012

The surgeon in Texas has ordered a Barium swallow, so I have that Wednesday.

I think it took me a few days to get adjusted to the new blood pressure medication. I was very tired the first week but seem to have gotten my energy back. I just get winded really easily and have to remember to make myself stop and slow down when that happens.

I'm still a bit torn about the surgeon in St. Louis (the cariothoracic surgeon) wanting to do a thoracotomy. I really liked the vascular surgeon, A LOT, and I guess that I can call and see if Dr. Moon might reconsider his approach on his side of things.

I also wish I had a definitive answer on the probability of an aneurysm. It weighs heavily on my mind and decision making.

I have started night terrors. It reminds me of being a child. My husband had to shake me and shake me as I was sitting straight up in bed and screaming at the top of my lungs, apparently over and over. I have hardly any recollection of this. Hopefully that part was a one time thing. (it has happened in the past)...I can't seem to even get through a grieving process and then another death comes along. I'm trying to hold tight and pray that my sisters are with me, every step on this journey.

My son is home from college for a few days and that has made me very happy. Tod is working nine hour days and I've always done so much, that trying to slow down was definitely driving me stir crazy.

Who know? Maybe this week's test will rule out surgery. I can cling to that hope, right? lol

Seriously though; whatever happens, I know I'll get through it and I'm blessed to have a very supportive husband, sons and more extended family. God is with me and I truly feel that it's not my time to be with my sisters yet. I have lots of unfinished business and hopefully, a lifetime of giving back.

I have had some wonderful doctors contact me and the opinions are very similar but the only thing I'm questioning now, is that the first surgery is going to be done by a vascular surgeon...making a bypass from the carotid to the subclavian, it's the second surgery that the cardiothoracic surgeon is proposing (the only one that I've talked to who is excellent in his field)...he wants to do a left thoracotomy to ligate the other end of the vessel. I have read about these and am understandingly terrified of having one done. I have so many other problems and chronic pain that I'm really scared to add to the pain issue. One doc says yes that eventually I'd develop an aneurysm and the next says no, the choking would stay status quo. I read about some of these surgeries where they've done a supraclavicular approach. This seems so much less invasive but I'd love some doctors opinions. Here's a cut and paste from one article I read regarding it:

Aberrant right subclavian artery or arteria lusoria (AL) is the most frequent anomaly of the aortic arch, secondary to abnormal embryogenesis. It is usually asymptomatic and fortuitously discovered. It can compress neighboring structures and cause dysphagia or, more rarely, dyspnea. In symptomatic cases or in the presence of an aneurysm of the AL origin, it should be surgically treated. The case herein reported concerns a child presenting with respiratory symptomatology related to an AL that was surgically treated by right supraclavicular approach.

Please, any opinions?

Ocho Rios 2013

Well, I had the appointment with the vascular surgeon this afternoon to hear about the results of the CT's and CTA and for his plan for surgery. I'm not going to lie, I was a little relieved and a lot let down. He said he had spoke to the cardio department and Cox South and that none of them wanted in on this case and that they all recommended I go to St. Louis. He said I could go there and "have my chest cracked open, my heart basically put on ice, my body temperature lowered to 10 and no blood going to my brain for about 10 minutes". Or....I could let him do it, even though he's never done this kind of surgery and the hospital as a whole has only ever seen 2 cases. He could do it in three increments, or two or 1 but that would leave me more stress on my body and him "a cranky doctor". He would recommend the two step procedure and make an incision in my neck and stent the extra artery. It's growing between my esophagus and spine and running down my right arm. This "might" fix the choking problem but if I don't do it, then within ten years, I'll get an aneurysm that could burst. My extra artery is unusually large, even for an aberrant artery and it runs down my right arm. He did a couple of little sketches on a note pad and said he's a surgeon not an artist. (Thank the Good Lord. lol) The more I type this, the more I become aware that this is not the surgeon for me. He wanted to know if I wanted to schedule or think about it. I definitely wanted the extra time. I am still confused as to his sketches, exactly how many stents and bypass grafts or whatever he plans on. After leaving and discussing it more with my husband, I called back and asked for a written plan. I was told they could send a pamphlet or brochure. I said, "I don't think so as he's never seen this before"...a couple times back and forth and she went to visit the nurse. Again, I was told they could send a pamphlet or brochure on similar procedures. I asked that they talk to the doctor and have him consult his written notes and charts to see what his plan was and to please mail me a written or typed plan on the specific course of action for me. Two very kind doctors off of this site (or their nurses) have spoken with me and I plan on mailing copies of my scans to them tomorrow. I pray that they have a better plan and a lot more confidence. The truth is fine, but the scare tactic as to what will happen if I don't let him do it seems a little wrong. Am I paranoid? Well...I don't think so, but I did appreciate his candor regarding some questions but am very uncertain regarding his experience and possibly wanting to operate on something that's new to him. He did show us the artery and how it's running and it's unusually large and doesn't "leave me much room to work with".

I'm getting ready to leave for the surgeon's office to see what big plan there is. I'm very nervous as I have yet to find one person with my condition. We have an hour drive and hubby (Tod) is going to drive so maybe I can take a few deep breaths on the way. Our Ash Wednesday service is late this afternoon. I hate to miss it, I feel like I really need that blessing. But as my mom said, I am indeed already blessed. How she can be so strong after my sister's death 4 months ago, almost 5 and my other sister's three years ago, I don't know. I guess adversity brings perseverance.

I was very thankful for this site and the fact that we contact surgeons on here. Dr. Allan Stewart called yesterday and discussed my condition with me. He said he would email me and then I can get copies of my scans to him. My husband and I have been completely thrown for a loop by these diagnoses and just hearing Dr. Stewart explain, by what I've told him, how he could possibly fix this, gave us hope. I hope to hear from him again and am ready to get my scans from the hospital tomorrow. I made the mistake of having some milk awhile ago because I was craving it so bad, and sure enough, had so much trouble eating any supper. Sometimes it's scary to go to sleep because I wake up gasping for air. Thank you again to all of you on this site.