Just putting up a new post for future reference, and my interest being I'm having it done in a few days, but I haven't seen many posts about it. With my limited knowldege, a carotid artery occlusion test, similar to an angiogram, tests strength, performance, potential failure of the carotid artery for a number of reasons, one being before a resection of the failed one or another reason like cancer involvement. The carotid resection has several different types too. My reason to have it done is so more radiation can be given being my carotid is past it's toxicity level, will be more compromised from radiation othwise, and then if resected, more radiation can be delivered safely.
So Paul, have they already tested to see if you will be ok if this one is blocked ? I am presuming that they want you to function on 1 carotid while the other is getting the treatment. Is that correct?
Tammy
Yes. They did the occlusion test on me, and everything is ok with living with one carotid. I believe the left one will permanently be stented, probably more likely removed to a cerain point. The other reason is I can't see them attaching it again, after radiation, being radiation continues to work for some time after, and some cancer may be present on the artery. There are several types carotid resections, some temportary, some with flaps, new tubing. I guess I'll find out soon enough.
Glad to hear that the new plan will proceed apace. Will be thinking of you Thursday.
Maria
PaulB, your courage is amazing. Wishing you all the very best!
My surgery is on for Thursday. It wasn't my imagination, my medications or wishfull thinking I was mixed up. It's going to be a neck dissection, removal of the carotid artery, remaining cancer if found, don't know about a flap since there is one there or would need another, another artery made from vessel or plastics after the Intraoperative radiation.
Paul,
Just curious. Was there any mention of replacing that portion of artery with a graft? My Dad has been on dialysis for a few years now and one vein got pretty well destroyed. After several various things they replaced a section of vein with some sort of artificial material that restores the area to take the dialysis connection.
With all the technology these days, it seems well within reason to be able to replace a section of artery as well. If it was an option, it would be interesting to hear why it was not selected.
don
I read about it, but I don't know. All that was mentioned was removal of the carotid for radiation, and microscopic cancer involvement. Most of my conversation was in post op, and was then transferred to another hospital. These doctors are the best in nyc, so whatever can be done, will be, and going with their suggestion. The carotid occlusion test showed I was low risk, which cuts the risks significantly, and as mentioned, I don't know if prior radiation, the radiation during this surgery has an effect on that or anything else or plan for additional radiation with the carotid removal in the future. Unfortionally, there are not many studies, trials done with this
Thanks Don
You got this Paul. Sending you many, many positive thoughts and vibes.
Tammy
Best of luck with this Paul. Sending positive thoughts.
Wishing you the best Paul. Hope it went all according to plan!
Checking for an update from Paul. Hoping everything went as expected.
I saw Paul has posted on Facebook that he made it through the surgery and is in recovery with pain! Prayers answered. Amazing.
Paul seems to be doing amazingly well. He said the surgery was successful. They took the Carotid artery and the vagus nerve out and he was able to have the intraoperative rads.
Sure do hope they have got on top of his pain. Paul deserves a break.
Get well quickly Paul. Be nice to yourself , rest and recover. Stay where you are and be looked after for a while.
Still sending positive vibes,
Tammy
I'm finally back home from my surgery stay from last Thursday. I couldn't log on OCF from my cellphone, but some seen my posts on FB. I'll make an update later on since I'm too knocked out from doing nothing to think.
Glad to see that you are home. Hope your not feeling too bad Paul.
What a warrior you are!
Shawn U.
Relieved to read that you are home and procedure was completed as planned.
Hoping recovery goes smoothly for you,
Lottie
Wishing you all the very best with a speedy recovery, Paul. be well!
Another wish for a speedy recovery!
Good to see your update!! Wishing you a speedy recovery..
Kathy
Yeah you're home - feel well... And that's an order!
I had my surgery on Thursday around 1pm. Anesthesiologist had to go through the nose again because of the limited mouth opening from trismus. My ENT said in post-op, you know there is 5% chance of stroke, I guess to get my approval, and didn't mention 5% chance of death too lol. I saw it was 25%, in another study, so was feeling confident at that point lol. Was in post-op around 5pm. My ENT said surgery went well, then corrected himself, and said very well. I had more pain than my usual dissections, and still took the morphine when I could, but didn't get to my room until 2:45am, so that didn't help. I was put in Step Down, Head and Neck, type ICU. I don't think I slept much that night, and anyway, by the time I was settled it was late.
I woke up to pain in the head, neck, shoulder, which I was given morphine. I had all the doctor's studies come see me that day, and had a visitor most of the day. The speech and language Therapist had to see me for swallowing issues. At some point they took me off morphine, and was given Percocet, which eventually makes me sick vomitting, and did so for the next day or so.
I didn't have a headache like I did on Saturday, which I say could have been caffeine withdrawal, but still did in the neck and shoulder ateaI had a slight fever, and when my ENT visited I was in the chair wrapped in blankets shivering, so he ordered blood cultures, chest x-ray, and antibiotics. This was the first time I saw him since post-op, and said how is the miracle man doing. He was happy with his findings, and told him my eye (my blinded eye) wasn't dropping like it was. He said that may be Horners syndrome due to the vagus, sympathetic nerves being taken out, and if that's all, were doing good. He said everything was so twisted up around the carotid from the radiation, fibrosis, he couldn't differentition the difference in
Turns out I had beginning of pneumonia, so was given a few IV's of strong antibiotics for a few days. I did have an incident with my vision later in the evening where I couldn't make out anything. I couldn't even operate the phone with disappearing, and moving display, and told the nurse, who I really couldn't see clearly, and everything else was a blur. This happened at every object I looked at. That went away in 15 minutes, and no one could say what from, and hopefully doesn't come back.
I was discharged on Tuesday, came in at 191lbs a few weeks ago, but went down to 175, they weighed me. Feeling weak and tired still, but feel better than yesterday, and so this will go on for a while, and taking oral antibiotics, tramadol for pain. I guess the two surgeries, and occlusion procedure in a week got to me.
Next steps will be all the follow-up visits starting next week.
You remind me of an armor clad Energizer bunny, banging the drum while on tour on the battlefield, only to return a bit scuffed and tired. you are the man!
I can picture that Don lol.
Little steps Paul and 1 day at a time. I think you are doing incredibly well. Be kind to yourself, let yourself rest and recover.
Here's to your good health.
Tammy.
My voice is still low, coughing, left eye closing (Horner's Syndrome) probably from the vagus nerve cut, which involve these. Time will tell if these will come back, and what information I get moving forward.
Hey there, Miracle Man....time will tell on the side effects, but your spirit is already shining through!
Take it slow and easy, let people do for you. So glad to hear your docs' happy assessment of the early outcome.
(((HUGS)))
Glad you made it thru another tough surgery. Now I think we need a new abbreviation CARBOT.
Thanks. it's for Temporary Carotid balloon occlusion test, but it's TBO. They may have a few others.
Hopefully your eye will come back once the nerve has a chance to heal! So glad you got through it all and are now home and can rest!
I saw my ENT today, who says how is the miracle man doing lol? My stitches were taken out, and reviewed with him a few items lingering since surgery, coughing, my eye closed more (Horners syndrome), lowered raspy voice, and being out of breath. As previously said, he had to take out the vagus nerve with the carotid artery. He is sending me to the laryncologist to revisit getting the collagen injection to the voice box strengthening it to correct the voice and coughing. Other than that, he is happy with the surgery, and go back in four weeks. We both agreed, being its not new, I could have deconditioned myself, and lost 25lbs since the summer. On Monday I see the radiation oncologist.
Well, that's sounds pretty positive Paul.
As Charm used to say, the " tincture of time" helps with all these side effects. Hope you can get the collagen and that it does indeed help. In the mean time get eating. Try Christine's smoothie recipe for a huge caloric hit and join Ed at the gym to condition yourself.
Tammy
Thanks Tammy,
That's two areas I don't need much help with, although I like discussing, and get along with most who do in exchange for ideas. I can and do cook just about everything, and probably have 500 cookbooks, almost every gadget, although I slacked off, and simplified my cooking since having cancer, but I used to make like 15 dishes for holidays, barbecues. I got my incentive working in some of the world's best hotels, doing executive protection for 25 years, and met many great chefs, just about every celebrity too, ate plenty, although cooking wasn't my occupation, I got along with the chef's, and that's a tough group to work with lol. I think last year for NYE I made 14 seafood dishes, but I pace myself now, and not too much multitasking. I don't know yet what I'm doing this year. I've been a gym rat since I was 15, most my work later on depended on it one way or another, and would gain, lose, at will when I wanted, depending on my activities, goals, going from 130-275lbs at 5'10", they say I'm 5'9" now lol. my lowest, highest weight, sometimes losing 20-30lbs a week, a 100lbs in a year a few times. My average weight was 245 for many years before cancer, lost over 110lbs from it, but slowly gained about 50 back in three years. I went up to 200lbs this summer from exercising. I can gain quick since muscle, and fat lol, has memory, and my doctor said not to gain anymore weight due to the harship on my kidneys, so when everything started to hit me...kidney failure from kidney stone, btw caused by chemo, teeth from radiation, recurrence, surgery, I went with the flow knowingly, and just lost the weight, but I think 175 is good for me now. I've been there, done every fad, diet, supplement out there since 1977, and believe most are a waste for various reasons, and don't take much, vit D, folic acid, unless my doctor tells me, and just do my own thing now...I live to eat lol. I wish to drink too, but lost my taste for that.
Just talking makes me want to exercise, and go cook something lol. Maybe this weekend I'll hit the gym, make linguine with white clam sauce tonight, maybe baked clams.
You. Rock. Paul.
I'll come out there, you cook and you can be my personal trainer too. My muscles can't remember what they are supposed to do. I guess my muscles have succumbed to CRS disorder.
If the collagen helps strengthen swallowing muscles please let us know. Always looking for a boost even if I spent the last 3-5 years trying to stop collagen production of all things.
Get up to pursing the lips and trying to blow out through your mouth with bursts of air. It strengthens the coughing and breathing muscles. After more recovery of course. Working on all that will help the body adjust to vagus nerve deficiency.
Rock on you beast!
Ed
You rock Ed. Sure, we can go to the gym, but I move at my snail pace now, baby weights too lol, but as long as I get there, hopefully, is what matters. I have about 6 free passes. I took my walker yesterday, but didnt use it, only my cane. I didn't want my surgeon to see me dragging myself, wounded, after all the hard work he did, strange but true. I made meatball muffins, in a cupcake tin instead this morning, already in the oven. Thanks for the lip advise. The speech pathologist was going over taking a deep breath, holding it, turning my head looking to the side downward to do a forceful swallow when eating, which may have assistance?
I made a post before about the collagen injections, but will update on my consultation. Last time he thought I din't need it, but thinks changed recently.
Thanks.
I had my follow-up with my radiation oncologist yesterday, who is no ordinary doctor. He is also a professor, ENT, and a Hematologost too, specializing in head and neck cancer, and is the chairman of the Cancer Treatment Centers for about 5 hospitals, so when I see him, that's the final say.
I thought it was going to be routine, post-op visit, and was told by his fellow in the hospital no further radiation was planned, which is sometimes given after IORT, and did so last year.
My doctor had his fellow working with him again, actually several, and went over the usual history, surgery, exam, but asked if my ENT went over the pathology. He did, but I didn't pick up a copy yet, and went over much that was known to me, but added, we are trying to see if more radiation can be given safely, so I figured things changed in two weeks. My oncologist eventually comes in with everything updated, and starts to go over surgery, the findings and what he wants to do...my first surgery they saw cancer was wrapped around the carotid artery, so pretty much everything was scrapped after deciding to come back and remove the
Carotid arterty, to remove the cancer, and so I can have more radiation during surgery, which was done after pssding the balloon occlusion test, agiogram. Anyway, my doctor said being I'm young, fairly healthy, good shape...I know whete he is going lol, he wants to give it everything he can, and do more radiation and chemo, but this time he wants to send me to do Proton Therapy in New Jersey, which will be inconvienant for a few weeks, and once a week do chemo at the hospital, which will be a visit to New Jersey and Manhattan. He believes there is a 75% chance the cancer will return, and I said it's probably 100% with me, and agreed, and would die from it. More radiation is not without risk either with my prior radiation. and it's good the carotid was removed, but there is still risk of the stumps leaking, 20%, which would be instant death, so he basically said, which odds do you like, 75% or 20%. Of course I chose the 20% risk, and agreed I was doing the right thing, and said he was not giving up on me yet.
The problem is getying to New Jersey is very inconvienant being I don't drive, and get around with nyc para-transit, aka Access-a-Ride. Basically I have everything set up at home for my convienance..food deliveries, prescriptions, laundry, a cleaning women, and only need to travel outside to go to the doctors by access-a-ride, which does not go to New Jersey, and never figured going there being everything I need is in NYC, except Proton Therapy. There are only 10 places in the U.S. that has Proton Therapy, none ate in NYC, not even MSKCC.
Surgical Pathology for 10/16/13:
A. Left pericarotid mass rule out carcinoma, excision: Moderately differentiated SCC in Fibroadipose tissue.
B. Supplemental Deep margin excision: Involved by carcinoma
C. Left pericarotid mass #2, excision: Squamous cell carcinoma in scar tissue with suture granuloma.
Surgical Pathology for 6/24/13:
Catotid: Segment of Artery showing squamous cell carcinoma in perivascular soft tissue. Perineural invasion present.
Note: The superior and inferior cross-sections are involved.
Paul, can you check with the American Cancer Society and ask about arranging a volunteer driver? Its not unusual for me to see patients going a couple hours away for their appointments and ask for a driver. Its worth a shot and this could be a way to get you where you need to go. You would be surprised at all the people (usually former caregivers or cancer patients) that do the ACS volunteer driving program. It take a couple weeks to get onto the list so try not to delay if you are going to go that route.
Yes. I'm going to call them, but for some reason, I see a problem going to another state. NYC, area, is very different than the rest of the states as far as neighborly love lol, plus the gas these days, inconvienance, plus $15 bridge fare everyday, although I would pay it. I'll let you know. Maybe I'm wrong, maybe someone else from my area is going that way, but I lived in this town all my life, and seem it all to have doubts. Thanks.
Paul, I live in eastern PA and do the ACS volunteer driving when I have time. Ive seen patients in my area asking for rides to NY, Philly and Harrisburg or Hershey. These places are all about 1.5 hours away and some even are on toll rolls. Give it a try and you never know, there are good people out there and someone may volunteer to drive you.
I found an Angel, who volunteered! Forget what I said about NYC lol. I wish I could drive, that would be my thing to drive someone to treatment. Thank you for your assistance, Christine.
So pleased your faith in Humanity has been restored Paul.
Now , time to get on with the planning and scheduling of this treatment.
Pioneering the way forward again Paul.
Tammy
I have a consultation at ProCure on Novembet 25th, will have a CT scan done, hopefully no contrast. They said I can start as early as the 1st or 2nd week of December, but depends if more tests are needed, I guess chemo plan too.
ProCure in New Jersey is the only Proton Therapy Treatment Center in the metro area, only 11 are in the U.S. Apparently it's a joint ventureship with a number of top hospitals in NYC..Continuum Health Care Centers, Mt. Sinai, NYU, New York Presbyterian, and MSKCC. I was wondering how my hospital has a doctor working there.
I guess I'll make another post under Proton Therapy to continue the discussion. I looked into many treatments, but I never bothered with Proton therapy, figuring I would never have it done due to location limitations.
I like the sounds of this Paul. I asked a bit about the Proton Therapy center at MGH during my treatment. They said since they have only one machine they are very selective in who gets in. Mostly children and special cases. They did say the big benefits are precision targeting and dramatically reduced side effects. Hopin that's the case for you.
So glad you found someone who has volunteered to help you with driving to NJ. I just knew there had to be someone out there who would be kind enough to lend a hand. Good job!!!
Yes, there are kind people out there. Thanks.
Go to jersey Paul... It's a must hugs dude
Thanks Cheyrl. I'll be a Jersey boy now! Actually, where I live, we associated ourselves more with NJ, than NYC, years ago.
Tammy, I tried, but I had to throw in the towel lol. I'm losing too much weight, getting dehydrated too, with the vagus nerve removed, and teeth issues. I cough a lot, and have no appetite, get filled quick or rather my jaw tires out. Anyway, I'm supplementing my diet now with canned glucerna, water, via the feeding tube, and glad I never had it removed. I don't want to go into my upcoming treatment being already deficient. I see more soups on the horizon
Still no hunger, fullness, thirst, still coughing, hoarse voice, but pretty much on schedule with eating, less though, and supplementing water, protein though the tube. Who knew the vagus nerve controlled so much, except Uptown? My right eye is still good from my visit, testing with the Opthomologist O.o although left eyelid is more closed, but blind there anyway, so is a lost cause.
The vagus nerve is a master sadly. Though nerves don't regenerate fully they do improve if some have been left. They just take a VERY LONG TIME TO DO IT. Hugs...
You know I'm just itching to ask questions Paul but I'm waiting for you to learn more about he vagus first.
Ask away Ed. I still have to see my local oncologist, heart and kidney doctors, as regular follow-up, so I'll be asking them too about the carotid artery, vagus nerve, sympathetic nerve. Today I'm going to get what records I can from the offices, without going to Medical Records, which is another location, see the social worker, and then go to a SPOHNC meeting. It's a long day.
At least your not lolling about the house eating whoopie pies...
hugs and good luck today.
I have no problem staying home. Just took a shower, and that's a chore, have a shower seat too, now going to rest 20 minutes to catch my breath, get dressed. I have 0 energy, strength.
Are those new changes Paul? Getting real tired from seemingly easy tasks that I had done for years was the early onset of some of my issues. Using the hedge trimmer would almost bring me to my knees gasping for breath, sweating and the heart beat pounding in my ears.
Thanks.
I felt good getting out of the house, seeing the sights, people, and ate some clam chowder in Au Bon Pain, a commercial eatery in the hospital, and then saw the social worker. He said getting transportation to NJ, interstate, will be difficult. Obtained some of my records, and then onto the SPOHNC meeting. The facilitator, a SLP, is going to have a swallow study done on me.
Onto getting home. My pick up with access-a-ride was at 5PM. It did not arrive until 6:15PM, and got home after 7PM. I don't know how I'm going to do it during Treatment.
Ed, this isn't really new. I've been like this for 4 years after my chemo in 2009. In fact, I was worse, got a little better, , but depending on any co-conditions like anemia, kidneys, diabetes, neuropathy, dehydration effecting me, and then after each radiation, surgery, chemo, I'm back to where I started. I only go out to see the doctors basically, and use my walker to sit on to cook, which I havent done in a while, have a shower chair, and have everything delivered, food, laundry, prescriptions, and a cleaning woman once a month to conserve energy. I did have a good run going to the gym in the spring a few days a week, which required special supplementation from my doctor, but after the kidney failure in May, recurrence in August, I haven't been there since, and I used to go to the gym sometime 5, 6 days a week since I was 15, depending on my routine, and running, swimming, biking, etc.
Crazy how the vagus nerve regulates or transmits information for about everything you mention. Almost makes me wonder if it was damaged previously or had cancerous cells growing some all the time and impeding signals. I really believe many long term issues are vagus nerve related except peripheral neuropathies. Almost all of those are related to the brachial plexus nerve bundle. It gets bound up from scar tissue, edema and fibrosis and signals are interrupted to arms/legs.
Rest up, eat regular calories and have a great weekend as you prepare to lay out your plan next week.
Ed
Thanks Ed. I didn't consider damage or involvement already being done, and is a possibility, good point. I had radiation 4x, two with IORT during surgery, 5 neck dissections, even a tumor itself, which was at level III at the carotid several times, so it's possible, even just by touching them, from what I understand, to cause symptoms, complications. When I had my radical neck dissection in 2011 the neck muscle, nerve, vein were removed, and cancer was scraped off the carotid artery, and alloderm was placed on it for protection. In a subsequent neck dissection, it had to be peeled off, and with IORT, they manually move, clamp nerve, structures out of the way, and place the radiation applicator directly on the tumor bed.
The hospital called me this morning to schedule a swallow study, so it was good I went to the SPOHNC meeting yesterday.
I was looking into some of my medications I'm taking, which can cause weakness (asthenia), muscle wasting too, not including the chemo drugs I've taken previously, Taxotere, Cisplatin, 5-FU, Erbitux, which are probably even worse offenders.