Hi Guys,
I hate July 2nd. It just isn't my day. Both my cancers were diagnosed on July 2nd 4 years apart. Normally I hide under a rock on that date but forgot to yesterday. So the phone rings yesterday and its the vascular doctor. My right carotid is 95% blocked and both my legs have severe arterial blockage. He says we have to balloon and stent all three. At least it not cancer.

I don't think I have any choice in this. I have no symptoms on the carotid but am having extreme difficulty walking any further than a couple of blocks starting last fall and it is getting worse. My legs just tire and ache and I can go no further. They think that the carotid is due to radiation. I have no clue as to why the legs are blocked because my cholesterol is normal on meds and my HDL is very high. I did start taking zetia in addition to Pravachol about two years ago and it lowered LDL. I've heard some controvery over this drug recently but don't know if related.

Anyway, I'm scared to death of both of these surgeries. My uncle died within a month of having his carotid done. Does anyone know anyone who has had this done? Any problems? What questions should I be asking this surgeon?

I was hoping to get all three surgeries done at once so only one recouperating time, but now thinking twice about that. You are awake when they do this and I think the neck is 2-3 hours. If it is the same legs, I don't think I could do an awake surgery for 6-9 hours without having a heart attack. I had a rhinoplasty years ago and let me tell you, awake surgical procedures are no fun.

My appt to discuss the surgery is Tues the 8th. I expect the carotid surgery to be the follwing week. I would appreciate any info anyone can give me about the balloon and stenting and problems people had after it. I did ask the surgeon about the problems with the stents that Brian mentioned and he said that was heart stents, not carotid which are different.

Everyone have a wonderful 4th of July or summer weekend if not in US and thanks for your help.

Take care,
Eileen

Hi Eileen. I'm a newbie to OCF, but have read many of your posts in the past six weeks. My neighbor's mother-in-law had a carotid stent put in just two weeks ago. She stayed one night in the hospital, and is doing fine. She, too, was extremely apprehensive about being awake, but she did great. Hope this helps. Don't know anything about the legs. Have a great 4th of July.

Andie
Friend to BOT patient. Stage 1A; no node involvement; no metastesis. DX April 6, 2008. Rad. completed on June 23,2008. 10 more weekly Carboplatin.

Eileen, I got your PM about this too. That stinks. I can see why awake surgery couldn't go beyond a certain time. Are you really wide awake or is it semi-conscious like when they give you a colonoscopy (if it's the latter, it's not really awake in my experience--its very very sleepy but barely conscious).

I wish I knew anything about this surgery that could help you but unfortunately I don't. Just wanted to say that that stinks and I think next time you should plan on sleeping through July 2nd somehow!

Nelie

Eileen

i am so sorry to read your news.

I hope all goes well and you should feel much better after these procedures,

try not to worry too much

love liz

Eileen, my younger sister had it done on both legs 3 weeks ago and she is doing fine. She says she has a little pain but is fine with it. I have you in my prayers.

I had a neighbor who had his carotid done a few weeks ago and he was out doing yard work last Sat. He never told me that he was awake during the procedure. Sounds creepy but I'm sure you will just do great.

I think I would turn off the phones and sit in your closet next July 2nd.

Hi Eileen,

Sorry I can't shed any light on your questions, but it seems that others here are giving you some good info.

You will be in prayers and I will be thinking of you on the 8th.

Happy 4th to you and your husband.

Jerry

Thanks for the replies everyone. I see the surgeon tomorrow so should know more after that.

Jim,
PAIN?? What kind of pain? Where? At the entry site of catheter or from the stent? How bad? I don't do pain. The whole purpose of doing the legs is so I DON'T have pain after walking a few blocks.

Take care,
Eileen

Eileen, I certainly don't have medical advice, but as far as the carotid goes, I think that the primary danger of stenting those is the chance of having plaque break loose. It sounds like you don't have a plaque problem, but stenosis due to radiation, so the procedure should be much safer in that case.

Nonetheless, I can imagine your anxiety. At least, as you said, it's NOT cancer! How nice, for a change!

Keep us posted.

XO--Colleen

Eileen, my sister would call sitting down too hard pain. LOL I pay no attention to her. You will be fine because you are tough.

Eileen:

I hope your appointment went well. Its quite a coincidence that every year on July 2 you have bad news. You are right with being optimistic with it not being cancer this time. Hang in there. If you beat cancer then you can do anything.


Christine

Left the house at 11:29 for 12:45 appt yesterday. Arrived at hospital at 12:30. At 1:30 they tell us dr had been called away for emergency surgery they don't know how long he will be, at 2:00 they say go to lunch for an hour, at 3:00 still no word on how long, at 3:45, told to go home, he doesn't know when he will be done. Get home and there is a phone message on the machine that was left at 11:33 from the hospital to call so they knew when I arrived that the doctor was in surgery. The appointment is now 10am Friday.

While I understand that emergencies occur, this will be the third day I have had to take off from work to discuss this surgery. On the first appointment he couldn't get to the CT scan results. I had hoped to have had this surgery over and done with two weeks ago. Now there are going to be interfering with my vacation in August. Hope to find out more on Friday.

Take care,
Eileen

Eileen, Aargh. I hate that attitude that when you need a procedure done, you should be infinitely flexible in when your apppointments happen and when the surgery happens.

I am running into the same thing with my two docs who will do (I hope) the coronoidectomy. The ENT said, over 3 weeks ago, he would coordinate things with the oral/maxilloficial surgeon but apparently nothing ahppoened for a weeek and 1/2 and then when his nurse finally tried (after I made several phone calls asking what was going on), the oral/maxillofacial guy was away on vacation. I was so ticked off. Anyway, that was last week, he is back now but still no news about when they might be able to schedule this surgery. I have been calling daily this week and hope to hear tomorrow (of course that's what I hoped yesterday). I've made it very clear that if it doesn't happen in the next couple of weeks, it won't be able to happen until next summer as I have to be back in the classroom (part time but still) the Thursday after Labor Day and there is a several week healing period. Then there's also the matter of the D&C my OB/GYN wants me to have. They've said that can wait 6-8 weeks so it can wait until I've healed from the coronoidectomy as long as it happens soon.

I had hoped I would get a date a few weeks in advance then be able to plan a vacation but instead I've been hanging around talking to doctor's receptionists every day. Oh well--I'm also getting a lot of gardening done and my garden needed it!

Anyway, sorry to turn this into my own whining but this is all to say I feel for you because I'm running into the same sort of stuff and it stinks.

Nelie

So it gets worse. I saw the doc on Friday. He has no surgical openings next week and leaves on vacation on the 18th returning the 26th. I leave on vacation the 4th of August and he can't guarantee I will be well enough to go. So I say OK, well do it when it get back. How about Aug 14 or my lucky surgery date Aug 15th(both my cancer surgeries were coincidentally done on that date). Nope he leaves for vacation again August 14 until the 25th. Then he tells me he won't even consider doing the surgery until I see a stroke neurologist to see if he agrees that stenting a 95% blocked artery is a good idea if patient is asymptomatic. Last Decemeber he was already to do it when it was 70% blocked. Didn't mention sending me to neurologist then. I'm trying to get this done while I still have house at shore so I can recoup down there on 1 floor. This guy is pissing me off.

He had assured me on July 2 that getting a surgical date the week of the 14th of July would be no problem. Now I can't even get one in mid August. He is offering to set me up with another surgeon in the dept after I see the nueorologist but I didn't want to have to explain all the other possible complications to a new doc. This is beginning to sound like Nelie's problems getting surgery scheduled. Glad it is only a stroke were are trying to prevent and not cancer. GRRRRR

Sorry for venting but I needed to blow some steam. Will keep you posted on this saga. Let's see how long it takes to get appointment with neurologist.

Take care,
Eileen

Eileeen,

I'm so sorry to hear about all of the problems you're having with getting your surgery scheduled. When is enough, enough? You dsereve better.

I hope that by some miracle you can get this worked out sooner. I'll be thinking of you.

Jerry

Eileen, you are due for a big break . You sure have been put off enough times. Maybe now the odds will work for you. I'm in your corner for sure as we all are.

Eileen, I have decided scheduling surgery in the summer, when docs go on vacation, is just the worst time! Your story just confirms it for me. I finally heard about a date for mine this morning with a different oral surgeon, after a month-long run-around so you definitely have my sympathy (and I still haevn't tried scheduling the D&C--dreading that).

I hope you can at least get in to see the neurologist quickly.

Nelie

Well I finally got an appointment with the neurologist this Weds at 2:00. They have to page him so I hope he is isn't in surgery. He doesn't normally see patients that day and has no open appointments until October.

Also got an appointment with surgeon on the 29th to discuss what the neurologist says and hopefully get a date for the surgery.

I'm now on Plavix and my stomach doesn't like it any better than it liked the baby aspirin although I don't have the bloating I had with aspirin. It is also giving me diarrhea and today it was green. That usually means blood. Not liking this at all and will discuss with doctor.

I was also reading an ad in Newsweek for Zetia which I'm on. It said that 'in rare cases' if taken with a statin, which I take, it can cause severe muscle problems. If this is what is causing my inability to walk more than two blocks, I'm really going to be pissed. I'm gonna ask about that one too but I doubt they will let me stop before surgery. I often come up with side effects to drugs, sometimes rare ones, so it wouldn't surprise me.

Take care,
Eileen

Hi Eileen, I certainly hope they can get you in for the surgery soon and then hopefully afterwards you can get some of the drug side effects dealt with. It's amazing how swtiching to a new drug can mess everything up sometimes. Hang in there and I hope everything goes well (and on time) on Wednesday.

Nelie

Hi eileen

it grieves me to see you in such a rotten place at the moment,your posts have always been so upbeat and warm.In the uk at the moment the use of statins is being investigated as so many people are having serious side effects.they wanted to put my mum on them for her cholestorol but when she read the literature she flatly refused saying she would take her chances .These treatments are a lottery aren't they.

take care

liz

I am leery ahout Plavix. My PCP put me on it . One morning after showering, I noticed in the mirror that I had a purple stomach along a surgery scar from an aortic anneurysm. Yep, bleeding under the skin from the Plavix. Needless to say I called the Dr and trashed the Plavix.

Strangely enough there has been an artical in the sun newspaper today syaing that statins are causing many problems,one of which is muscle and leg problems.

So I see the neurologist last Thursday. I'm still not certain why I need his opinion. The surgeon has told me both in December and July that a neurologist was going to tell me NOT to have the surgery because neurology had done a study and found that there was no benefit to women to have the procedure, however that the study was flawed because there were so few women in it that results weren't valid. So why send me there unless you are looking for an excuse to NOT do the surgery.

Anyway, so I meet with this guy. Can't say I like him. First thing he says is he wants to go over my meds with me 'to see if I know why I am taking each of these drugs'. I say the list with the correct dosages is in the computer. He says 'We don't use that computer, we have our own.' Well up to this past February, that was true but this bigass fancy hospital finally got smart and put all depts on the same system, but no I got a wise guy who doesn't want to use the system. They still make you fill out a form every time you get there but I don't bother memorizing the dosages anymore. Turns out he had looked them up 'on other computer. Then I have to sit there and explain to him what each of my meds are for. How dumb does he think I am?

Then he goes into his speil about the study and how they can't do surgery on my carotid because of the radiation and neck dissection and as far as he is concerned stenting the carotid is still and experimental procedure and in my case extremely dangerous because it is 95% blocked. The surgeon said 1-2% chance of stroke. Neurologist does NOT recommend I have the surgery. He wished it was a 100% blocked and says I'm probably not getting any blood to the brain on that side anyway. I said, 'what are we going to do when the other one blocks? It is already partially blocked? Leave me a vegetable like my father because you can't operate because one is 100% blocked and the other 80%?'. I then burst in sobbing tears out of both eyes. I haven't been able to cry since radation in 1997. That was sheer fear.

These guys are telling me the narrowing is caused radiation and neck diseection and then they seem to think that my left one which is already partially blocked isn't gonna do an 80% also. Cut me a break.

So he finally agrees to schedule an MRI and review the results with surgeon before making up his mind. I don't do MRIs but I've got no choice in this one. He wants some fancy new test run and it can only be run on the little MRI. I take a deep breath, schedule it 7:am the following morning that way I don't have to think about it for days, get my script for knockout pills and leave. Go to fill script and jerk left off the date and DOA number. Two hours at the pharmacy trying to get someone from hospital to call in new script which they finally did.

I DID it, I ACTUALLY DID it and survived. Talk about mind over matter. I took one pill a half hour before MRI. Looked at the MRI and it didn't look to be much tighter than a CT machine. Remember, I'm tiny, 108. I wouldn't want to be a 200 lb man in one of them. But then they got out the head mask and I freaked. You would think they would have warned a H&N cancer patient about that. So I popped another pill and in I went. Whoever wrote the symphony that those machines play will never get work in a concert hall. No wonder you need ear plugs and cotton buffers on the sides of your head. Sweet music it ain't. Slept like a log for 5 hours after I got home. Those pills knock you out.

Liz, the statins aren't the problem with the legs. I'm been on Pravachol for so many years with NO problems, probably 20-30 at least. Problem started aftr I added the Zetia which I'm going to ask to stop.

So tomorrow I meet with the surgeon at 1:45 to get results of MRI. Whether they do the carotid or not, they still have to do my legs. He he doesn't want to do the procedure I need a real reason, any BS about a study that says if has no effect because I'm a woman. How many woman in that study have had XRT to BOTH sides and neck dissections on BOTH sides. I need to know what the surgeon thinks my chance of stroke is from procedure and if they will be able to do procedure on left if we don't do right one before it gets 100% clogged.

Do you think this surgeon is just looking for an excuse for not doing this? Something here is fishy. Will let you know what happens.

Take care
Eileen

Eileen, I can see a doctor wanting to be sure all your meds are really necessary, though it seems to me that would be more the job of your primary care doc, but why you ahd to explain what each one was for to him is beyond me. And then he tells you he doesn't want to do the surgery--I can see why you reacted with tears. If the arteries on both sides are blocked, surely trying something is better than just waiting for the worst!!! Good for you for doing the MRI. The first time I had one, I freaked out about the mask a little too but compared to the OC mask, that mask is extremely roomy.

I really hope you get some good answers from the surgeon tomorrow and, if not, that you can go somewhere else and get another opinion.

Nelie

Good luck tomorrow and lets hope they have a great solution.

Hoping all turns out ok.

Well the sage continues. Saw the vascular surgeon on Tuesday. He still hadn't been able to talk the neurologist and hadn't looked at the MRI or couldn't bring up the results on the computer. Little strange since his secretary could get to it to print off a copy.

Finally, he gets a hold of the neurologist while I am listening. Neurologist says I'm getting plenty of blood to the head and does not recommend stenting. Then this doc goes into spiel again about study saying it has no effect on woman. I keep asking the same question over and over 'what happens if left gets blocked? Will you be able to stent it if right is 100% blocked? and he keeps ignoring it.

Now he tells me that stents tend to block again in 6 months in patients that have had radiation so he doesn't want to start the scenario. I had asked this question June 24, and got a NO PROBLEM. If it blocks again, we just put in another stent. He still hasn't answered me on the left side question.

So I ask if we can schedule the legs for end of August, he says NO and DEMANDS that I go to another hospital for yet a third opinion on the carotid before he will schedule legs. He doesn't think that not being able to walk two blocks is any big deal. My carotid which he REFUSES to stent is a BIG deal.

I ask the question about the left side as he is walking out the door and he finally gives me an answer of YES, they will be able to stent left if right is 100% blocked. That's a relief. I'm now finally comfortable, not not completely happy with not stenting it.

So I now have an appt on Aug 16 with supposedly one of the top cardio guys in Phila at Hahnemann. I don't know what I'm going to do if this guy says he thinks the right carotid needs have stent, get a fourth opinion. I'll about to outdo David. Maybe this new guy will at least explain to me what the MRI says.

We will see what happens next.

Take care,
Eileen

So I had the appointment with the top cardiologist on the 26th at Hahnemann. He reviewed my films and called late last Thursday and said he needs a carotid angiogram ASAP and to cancel my leg stenting which was scheduled for tomorrow.

So I am now scheduled for a carotid angiogram at Hahnemann on Weds Sept 3 at some unknown time. They will call me tonight. Depending on what the angiogram shows, he may then stent it on Thursday. He refuses to do more than one procedure at a time so legs will have to wait until carotid addressed. I like this new guy so am not too worried about the possibility of angiogram causing a stroke. My husband however thinks the 'do nothing approach' is just fine.

I will be out of work until at least Monday and since I can't post on the board from home, will not be able to give you an update until some time next week. Wish me luck.

Take care,
Eileen

Good luck, Eileen. I'll keep you in my thoughts this week. And thanks for the update. I had been wondering what was going on with this. I'm glad you like this cardiologist.

Nelie

Eileen,

Good luck from across the Mighty Delaware.

Jerry

Eileen,
Prayers and best wishes that all turns out well for you.
Malka

Thanks for the prayers and good wishes guys. They must have worked.

Had the angiogram last Wednesday. Besides the 95% blockage in the right carotid, I also had a 99% blockage in the right iliac artery above the groin. Since he has to stent this to get to the carotid, he did that last Weds. Because I had such high levels of dye in my system, he decided NOT to try to stent the carotid last Thursday but to do it this Wednesday.

So I get to do this all over again in two days. Can't say I'm looking forward to it. This is about the most BORING recovery procedure I've ever been through. After they spend an hour or more trying to get your blood to clot again, they remove the catheters and then send you to a room or this time ICU where you must lie on your back with leg straight out and not move for 6 hours making it impossible to read and almost impossible to see a TV. And since I have a trach which puts pressure on the wound if I talk, I'm also not allowed to talk. Sleeping it not an option as I might roll, plus it is too noisy. I think I got a total of 1 hours slepp that night.

The stent in the iliac did solve the problem of my cramps in my right thigh. The other doctor never even suggested this. He was going to stent below the groin. This doctor says that usually doesn't work for long and he is going to try to avoid having to do it. We will address other leg problems 4 months after carotid. Tey may need to stent left iliac.

So off I go again on Wednesday. Will then be off the board until at least Monday. Will let you know what happens, I hope.

Take care,
Eileen

You'll be in my prayers. For the boredom, what about a book on CD? I know I couldn't lay still and do nothing for 6 hours. Linda

What else can I say but Hang In There.

I wonder why 6 hrs? I had to lay still with a weight over the spot where they cut for the catheter to go in, but only for about an hour and a half. Good luck and I bet you are glad it's over.

God, Eileen, sounds like quite the ordeal keeping still for that long but not sleeping. The book on tape or CD idea is a good one, though those often put me to sleep. In fact, if I had to lie flat on my back for any length of time and wasn't allowed to sleep, someone would have to be waking me up a lot I think!

I'm sending all the good healing vibes (and not-too-bored vibes) that I can. Let us know how it went as soon as you can!

Nelie

Eileen

I am so sorry i have been remiss is sending my warmest good wishes to you,and wishing you luck in the treatment,but here they are.

(((((HUGS)))))
LIZ

This time I got to go through the BORING recovery TWICE and the procedure once.

As I was lying on my gerney waiting for to go to OR for procedure, a woman who was having a heart attack was wheeled into the next bay. She had collapsed at her office for no known reason. After getting some background info from her, they rush into OR for an angiogram to determine what is happening. About 15 minutes later they pick me up for carotid artery stent procedure. Now my surgeon is the head cartiologist and if there is going to be any complications in this emergency in the other OR, he is likely to be needed. They get all the equipment set up for me, do the prep work, and then the IDIOT intern decides to run the IV lines into the groin WITHOUT checking to see if my doctor is going to be available to do the procedure. Two seconds later my doctors associate comes in to apologize and say my doctor has been called in on the emergency. I COULD KILL that intern. Now I have to do the 8-10 hours don't move or talk for a procedure that wasn't even done. Plus when he is trying to get my blood back to normal clotting level, he gives me to much of the drug and then has to thin it out again. I almost went into shock at one point. The bruising is so bad this time I can barely walk because this idiot also didn't know how to correctly apply pressure to stop the bleeding. So that was fun.

Needless to say Thursday procedure went without a problem. Doctor was delighted with the results. He was able to get carotid open far wider than he expected, don't know how much, but he was hoping for 70%. Even gave me a before and after picture to show me the blood getting to the brain. That before picture is a pretty scary shot.

The woman in the emergency was doing well. She was a 40 year old that collapsed out of the clear blue. She has some rare condition that occurs in 1-500,000 people where her arteries just collapse. they were collapsing before the doctors eyes as they were wroking on her. Took 4 doctors several hours and multiple stents to make her stable.

They wound up keeping me an extra day trying to get my BP up high enough for release. They want you on the high side as it takes a couple of days for the carotid to recover. So they are IV feeding me something to up the BP and then the silly nurses come in and want to give my BP medicine. I question the wisdom of this and they check with doc on floor in coronary care unit. He says, OH that is for arhymthia (sp) and it is OK. I say ARE YOU SURE because it also lowers my BP. Oh he sure. Next day my BP still not where they want it. Turns out I should not have had in BP meds for 48 hours after procedure.

So it is now 6:PM and they decide since it is so late, I might as well spend another night in coronary care so they can monitor overnight. I agree. Well, 10:30PM, in bounces my adorable two nurses who announce that I am 'going to take a walk'. They are throwing me out of the room in coronary care and sending me to a regular room where I won't get monitored cause they need the bed in corinary care. Fun and games.

I am doing well, although very badly bruised. Still have difficulty walking and climbing stairs but I think I can thank the idiot intern for that. It will probably take me twice as long to heal this time. Last time I had no difficulty after a couple of days.

So thanks for all the good vibes and prayers. I survived another one.

Take care,
Eileen