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Janymac- stroke damage

janymac
Posts: 31
Joined: Feb 2010

Having recently seen the follow up thread on 2011 roll call and finding no one has noticed that I am there - not sure if I count though as I am from UK, but find myself 10 years on from NPC with ever more problems when I am meant to be being discharged am being kept on the books.

These last two years have brought very painful neuralgia to my face- trigeminal and now also glossopharngeal. Also have had a stroke it seems 2 years a go when my handwriting and co-oridnation deteriorated and had my second this January, where they found evidence also of the first one on scan. Am on 4 different meds for very high blood pressure as well. My consultant has referred me to a vascular surgeon to do an operation on my neck to try and reduce the damage which is apprently really quite common after head and neck. Am saying this not to frighten people as I have thought twice about writing it- but to urge people to keep an eye out for these types of things as they do happen, although most definately not to everyone.also found out this week I am anaemic again. I have turned into this person taking 10 tablets a day that are completel keeping my body regulated and running and it is not as if they are easy to swallow at all.

See Hondo talks of crying a lot. I exactly know what you mean. I keep crying at the moment and am more frightened than I was at the time of NPC diagnosis. Really do not know what to do with myself.Even my consultant says I do not seem like myself as I usually take it all on the chin. My GP is getting outside of his comfort area in answering my questions as my problems and questions for expanation get more and more complex. Have nobody to talk to and my husband has progressive MS and feels he does not need mine. As I walked out of hospital following stoke this year, he does not realise the impact it has had on my thought processes and got told off for not understanding a simple instruction and was just told by him that I had a degree for goodness sake.No number of degrees prepare you for this.

You have no idea how much I crave to be able to walk down the street casually eating something or without clutching a water bottle.Even yawning is mighty painful and as for eating anything bulky- that is definately out. Normal life seems so long ago and I now feel frightened that I have yet another stroke, which I have been told is a very distinct possibility, before I have my arteries operated on.I just feel so alone.Please do forgive my slightly maudlin apporach- it is 5.15 am here and I have not slept all night thinking of it depite being really tired last night.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Janymac,
Very sorry to hear about the strokes and neuralgia. Sorry you've got surgery on the horizon, but glad it's an option.

You know that this place is somewhere you can go when you feel you have no one to talk to. We may not know exactly what you're talking about, but there are many things that someone here will have experienced as well. Just a year out, I already have some "provider gaps" - areas of interest or concern - I don't know sometimes which of my docs I should go to, and find myself irritated if the doc I choose doesn't seem to know what I'm talking about, or has no concern for what I'm concerned about.

Hope you can get some rest right away - sleeplessness adds so much to stress levels. Hoping docs and you can come up with a game plan to get your arteries operating on, and blood pressure in check. Do well, and keep us updated, please. Wow - and hubby with MS must add a lot to your stress level.

rozaroo
Posts: 667
Joined: Apr 2010

My sister suffer's from trigeminal neuralga to the brain. The pain is horrible when she has an attack. I am sorry you have to suffer through this plus having a stroke etc. Not having a supportive partner is not easy. Plus all of the added health issues makes life so difficult. I wish you well & remember we are here for support whenever needed.
God Bless
Roz

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

You sound so much like me it is hard to believe, I am only 8 years from my first treatment for NPC and 6 ½ years from my second treatment. We need to talk somehow, I am not sure where you live I hope it is in the US. I will PM you my contact info.

Take care my friend
Hondo

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

The UK is on planet Earth...makes you one of us for sure....

Very sorry for your ordeal, but you are definitely included in the club....

Give me some specifics on location, and I'll make sure to add you (already did, but just in UK) on our map linked to Google. I actually believe that we have someone in the UK actually (Tricia02 is from Surrey);

Where in the World Are You

Best,
John

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

janymac, I too had arterial problems, I had two mini strokes, fortunately there was no damage. The carotid arteries are the culprit, they can harden up and not move the blood as well, or in my case simply be blocked. I underwent carotid artery surgery (endarterectomy) and all is fine now, my left side artery is 100% open. I am British, where in the UK are you from, I am from Barking Essex, I live in the US though, have done for the last 37 years

janymac
Posts: 31
Joined: Feb 2010

hi all- thanks for all your messages. Denis- that is what happened to me lthough they were full strokes andhave cased some damage but not to my arms or legs but more to the way i can figure things out or co ordinate my hand. I think they want to do an endarterctomy on me too, but will wait to see if the surgeon has second ideas once he sees me although he has seen my scan as I have lots of debris flinging off my carotids into my brain. I am from North Nottinghamshire, England- very near Robin Hoods Oak tree. Hondo- please do pm me- I am coming over to the US in Oct/Nov to see my brother. I agree- when I read your story I often think we have a lot of similarities.Not sure where you live though.

Well managed to do a days work on about 2 and half hours sleep. Looking forward to bed tonight.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Yeah, the platelets form small clots, they break off and travel to the small veins in the brain. I take a full strength aspirin a day plus plavix (clopidogrel). I also had heart surgery in 2008 for a blocked widowmaker artery, all is clear now and working well. The cancer treatment did not seem to make anything worse in my cardio system. Take care and have faith in your docs, they usually know best.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Get used to the lack of sleep...I haven't had more than four hours sleep in nearly 2 1/2 years...

Between dry mouth during sleep, sips of water, and then pee wake-ups... But it's better than the alternative.

Best,
John

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

This is REALLY frustrating.  My hubby had his radiation in 2010 (summer) and has been slowly feeling better and better.  Then last Friday he had a "spell" where he felt like his left eye was out of focus, had a bad headache.  I told him to go to doc. but he wouldn't.  He did call Monday because he was still feeling the one-sided headache and just "fuzzy."  They couldn't get him in until next week, and he would not go to ER.  He had his regular 3-month check-in with ENT surgeon.  She was FURIOUS at , him for not going directly to ER, told us about the stroke risks, etc.  She called our family doc and set up an appt for 8:00 a.m. tomorrow (the regular day off for the doc.)  This all is scary, don't know what to think.  Now I read these threads, and it sure sounds like he might have blockage, had a small stroke.  Does this sound like the case to you folks? 

I quit reading this site about 8 months ago because my life is so hectic and I'm SUCH a control freak, worrier.  I decided it wasn't good to focus so much on what might happen but should enjoy each day.  Now I feel like an IDIOT for not following.darnit

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I have never really heard of any stroke risk, and of the four years that I have been on here. I can't really remember any other thread concerning stroke...

So with that being said, I don't feel that it's something very common, or more threads and posts would have been made..

So did your husband actually have a stroke, or you are just responding to what the ENT stated.

I could be wrong, as I'm in no way a medical professional..., but I really haven't heard anything that I can think of associated other than this thread.

Even this thread is two years old with no replies since...

Best ~ John

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

No, don't know that he did have a stroke, but I've been reading all the older threads, and there are LOTS of areas where they talk about blockages of the carotid arteries, blow-outs (don't even go down that path) etc.  It is SCARY

Shoot, like I said, I tend to be a worrier, and the ENT really made me angry, because she didn't even do ANYTHING today, just got furious mad, said "I'm not dealing with this," and acted like he was an idiot for not going to ER before, etc.  I thought his comments were valid, that it seemed to be only left side of face, above the neck disection/tumor areas, and he thought it at first felt like the numbness he felt when he initially had his surgery.  So I guess we'll start down a new path tomorrow and see where it takes us.  I will stay online again, just because I'm angry at myself for not seeing more of these posts before.  I do have to say, I was glad to see lots of the same smiling faces I saw before, and THAT is POSITIVE!

Thanks for your response!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

The symptoms definitely would lead you to at least be concerned of stroke...has he been checked by any other MD's or just waiting for the scheduled appointment?

There have been a few instances of blow outs, and actually know of at least two that ended tragically..., and a few close calls, one just recently.  That is definitely scary stuff..., but I'm pretty sure all of those might have also been associated with dissections in conjunction with other treatment.

Definitely something to become knowledgeable on in your case.

Best,

John

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

the stroke risk is real.  My CT scans since my second rads have showed stenosis of the right internal carotid artery.  I have not wanted to investigate nor treat it until a little more time went by from my cancer, but last week God had different plans for me.  I had an occular stroke.  That's where the clot goes to the retina as opposed to the  brain.  So I've lost some of the vision in my right eye.  I ended up with a balloon angioplasty and a stent on that artery, and will be on plavix for awhile.  It could have been a big deal.  I count myself as being pretty lucky. 

 

best

 

Pat

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Hi !!  So good to see you posting again.  Sorry your husband had this issue.  If I read it correctly, your not sure it is a stroke yet? Correct?

As for your ENT, shame.  They tell us to "report" any and all new symptoms, then when we report some of them get that "deer in the headlight look" as if what we are saying has nothing to do with "c" or our treatments.  I've just learned to let it slide off my back and stick to my guns of pushing through making my statement and asking my questions.  I mean, we are not the trained professionals and we are just trying to do the best we can with what we know :)

Whispered a prayer that it turns out to not be a stroke.  If so, very minor and no longterm damage.

As for being angry with yourself, now that's you beating yourself up for the very weakness you say you have, to controlling.  What you and your husband have been through is SOOOO not controllable.  Judging from your posts in the past you are a great caregiver and even now it shows through ....your doing fine ....keep doing what you do.

Best,

Tim

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

for all the comments.  He Will have a brain MIR on Wednesday.  I Will let You know what we find out.  The Neuro thinks it was a small stroke, not TIA

jtl's picture
jtl
Posts: 421
Joined: Sep 2011

There is indeed a risk of a stroke after having rads to the neck.  I have been having ultrasounds every 6 months.  So far the stenosis has not changed much but this is not something to mess with and the test is cheap, easy and non-evasive.  I am going to have my CT/PET in about a week.  Geez, it has been about a year and a half now post treatment.  Time sure does fly.  John

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Oh, I remember you well, as you are the one who advised me that my Dentist wouldn't have a clue on the cause of damage to my teeth, or what to do about it. And, you were correct on the first count. He has rebuilt the bottom of my top two front teeth, and I've gotten a couple Crowns. Also remember that you and I had similar chemo delivery, unlike most everybody else.

Good to hear from you, but sorry to hear of your strokes and difficulties. I'm 2-years, now, post-treatment, and seem to be doing okay. Have neck crampings, daily, but the treatment areas have stabilized and are entirely acceptable. Of note, however, is that of recent I seem to be having some lower-body problems with swelling of my feet, and wonder if that has to do with blood circulation. Still, considering where I was 2-years ago, I can't complain.

Again, good to hear from you. Take care-

kcass

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I do feel for you. I am also a NPC survivor, but my problems are mild compared to yours. I received my treatment in 1998, so it has been 13 years. My bottle of water is always with me. My dry mouth has gotten worse so my eating includes more Ensure. Luckily, I can get it from the Veterans Administration.

Concerning the 2011 Roll Call update. I do not visit this forum as often, but it is a volunteer type program. Unless you enroll, your name is not included. I do hope you will join us.

I will bump it up. Surprisingly, many have not checked back in. Here are the instructions that were posted:

The enrollment date is not when you first had the cancer, but when you joined our roll call group. When you check in, provide a brief summary so others can read on your case and status. The date of enrollment and date checked in need not be provided. I can extract the information from the date of your posting.

If enrolling for the first time, please provide information on where you are from, type of cancer and date diagnosed (if known), your treatment and status. If you prefer to only list your state or country, that will be fine. The date the information was posted for the first time will be the enrollment date.

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