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baroreceptor failure #183918
08-02-2014 06:53 AM
08-02-2014 06:53 AM
Joined: Aug 2014
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Debz Offline OP
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Debz  Offline OP
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Joined: Aug 2014
Posts: 6
Hi everyone, i haven't been here for a while, i am almost 8 years post treatment and so far 8 years cancer free, i am seeing lots of new problems related to treatment and figured this is the best place to come in a world i find has little to no knowledge of my struggles.

It started 11th November 2011, while i was sitting down talking to my daughters teacher....i got very hot, flushing sensation pressure in my head and very dizzy...bp was 245/140 and it has bounced between 68/40 to 245/145 since.

For the last 3 years i have been having these blood pressure issues, it came on one day and has not changed i have been in hospital twice, urgent care so much so they know me by first name i have had soooo many tests i cant even write them all down, eventually i think i have discovered the issue....Baroreflex Failure due to neck radiation....getting an official diagnosis is near impossible.

anyone else experienced this? did you get a diagnosis if so is yours under control yet? any help would be greatly appreciated as i recently had a TIA in my left eye due to prolonged high BP .

Thanks Debz





Dx SCC stage 4,on 10/9/2007
9/24/2007 started 7 weeks radiation 3 rounds of cisplatin given at week 1 week 4 week 7
Pet scans show cancer free
no saliva
no taste
11/11/11 started having BP issues, no diagnosis yet suspect Baroreflex Failure
2/10/2014 12 teeth removed HBO x60 healed well except for 2 sides
April 2014 started to get saliva back
8/30/2014 DX osteoradionecrosis of the jaw waiting on surgery
Re: baroreceptor failure [Re: Debz] #183923
08-02-2014 08:37 AM
08-02-2014 08:37 AM
Joined: Jul 2012
Posts: 3,165
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,165
NYC
I have fluctuating blood pressure the past few years, last month normal, more recently high, 193/130, and in that range. I have to see a doctor, as advised by HBOT, so I did some blood work, and going to my PCP on Monday. It was having othostatic hypotension a few months ago when my pressure would drop 20-30 points upon standing. I thought it was high BP, which it was, but tested myself with a home BP wrist cuff to see it suddenly drop. No place ever tested me for that. Before chemo in December, my oncologist wanted me to get cardiac clearance, which I did, but was supposed to have a follow-up with a chemically induced stress test, which I never did. I also seen a neurologist this week for my shoulder condition, possible brachial Plexopathy, and the doctor said it may be more than just that, and have to do an EMG, and EEG test.

Anyway, I don't know where I'll find time for all this testing. I do think it's related to all my radiation, and neck surgeries, who knows what else like my carotid artery, vagus nerve, CKD, and others, but currently have no definite answers. I just hope to get BP medication to continue HBOT, have oral surgery by the end of the month. I'm already at risk for ishemic events with my carotid artery removed, blind in one eye from optic ishemic neuropathy and Neovascular glaucoma, related to chemo Tx, and don't need any other complications.

I hope you find answers, and get the high BP under control ASAP!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: baroreceptor failure [Re: Debz] #183924
08-02-2014 08:48 AM
08-02-2014 08:48 AM
Joined: Jun 2007
Posts: 10,270
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,270
PA
Unfortunately this is fairly common. Blood pressure swings from too high to low can be pretty scary. I think its called baro-reflex disfunction. Its not something doctors can regulate easily. I wish I had an idea of something that could help you with this. Brian may have more info.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: baroreceptor failure [Re: Debz] #183926
08-02-2014 09:29 AM
08-02-2014 09:29 AM
Joined: Aug 2014
Posts: 6
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Debz Offline OP
Member
Debz  Offline OP
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Joined: Aug 2014
Posts: 6
Thank you for your responses sometimes its just nice to know your not the only one.

I did get very hopeful when i learned about the Rheos System, but if you've had neck radiation you don't qualify for the study, fingers crossed someone will be able to help.


Dx SCC stage 4,on 10/9/2007
9/24/2007 started 7 weeks radiation 3 rounds of cisplatin given at week 1 week 4 week 7
Pet scans show cancer free
no saliva
no taste
11/11/11 started having BP issues, no diagnosis yet suspect Baroreflex Failure
2/10/2014 12 teeth removed HBO x60 healed well except for 2 sides
April 2014 started to get saliva back
8/30/2014 DX osteoradionecrosis of the jaw waiting on surgery
Re: baroreceptor failure [Re: Debz] #183928
08-02-2014 10:32 AM
08-02-2014 10:32 AM
Joined: Jul 2012
Posts: 3,165
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,165
NYC
Being in NY, have you been to some of the top cardiac centers in the country like NY Presbyterian, Mt. Sinai, NYU, Lenox Hill...that are here? Also, I see in your timeline you're waiting on surgery? I would be surprised if they would do surgery if the BP is so high. That's what I'm afraid of, so may have to see the cardiologist sooner also, and may need their clearance anyway.

Even before any type of treatment, intervention, like Rheos System, a proper diagnosis would be a start.

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: baroreceptor failure [Re: Debz] #183931
08-02-2014 02:32 PM
08-02-2014 02:32 PM
Joined: Aug 2014
Posts: 6
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Debz Offline OP
Member
Debz  Offline OP
Member
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Joined: Aug 2014
Posts: 6
Hi Paul, thanks for responding,
Yes i have been to most of those, i have seen so many specialists i have had a full cardiac work up i am on my final cardiac test right now i have been wearing a cardiac monitor for two weeks its sent direct every day to my dr...i have done stress tests been tested for pheochromocytoma 3 times mri's mra's all negative so far, i have no permanent damage from the BP but i know after my TIA that i'm just playing for time, i currently see a specialist in NYC hes a published hypertension specialist hes currently not sure what to do, i have to wear a BP cuff for 24 hours again just to prove that when im not stressed out my bp is too low...i'm running around 80/50 for the last two days...very hard to function.

Yeah the problem i have right now is the dead bone in my mouth is at a stage they hope can be shaved down if we leave it too long i will end up loosing my jaw....it's early days for me i have to hope a plan can be drawn up some how they can help me

crazy old life


Dx SCC stage 4,on 10/9/2007
9/24/2007 started 7 weeks radiation 3 rounds of cisplatin given at week 1 week 4 week 7
Pet scans show cancer free
no saliva
no taste
11/11/11 started having BP issues, no diagnosis yet suspect Baroreflex Failure
2/10/2014 12 teeth removed HBO x60 healed well except for 2 sides
April 2014 started to get saliva back
8/30/2014 DX osteoradionecrosis of the jaw waiting on surgery
Re: baroreceptor failure [Re: Debz] #183932
08-02-2014 02:46 PM
08-02-2014 02:46 PM
Joined: Jul 2012
Posts: 3,165
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,165
NYC
Debz, well I'm glad for all that, follow-up that is, and I need to follow in your footsteps! Mine might also be kidney disease related, as nephrologist once said was the reason for the high BP a while back, but been so involved cancer wise, and now with the HBOT for the ORN prevention, teeth extractions soon, time is difficult to find, so I prioritize most of the time.

Thanks for sharing, and your knowledge is beneficial to others, including myself.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: baroreceptor failure [Re: Debz] #183952
08-03-2014 04:41 AM
08-03-2014 04:41 AM
Joined: Dec 2003
Posts: 2,606
Atlanta
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Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
U

Joined: Dec 2003
Posts: 2,606
Atlanta
Debz, I've been going through that since around 2009 and even including almost all functions of the autonomic nervous system going completely haywire. Blood pressure and heart rate have been the most difficult to manage on an ongoing basis. Mine can go from 220/160 to almost nothing instantly. My heart rate started spiking with the blood pressure increases up to 160 bpms. It also has affected about every hormone loop.

After years of tying to stay on top of it, I don't think it is going to just repair itself and there really isn't a pill to fix it. In order to strengthen blood veins and the cardiovascular system, in general, I'm biking in the gym. Because body temps, heart rate and about everything in the body can be affected, it's a real hit and miss approach and even once the label is attached, there isn't a lot of successful treatment options.

It's important to understand what triggers the "episodes' and how to see them in advance and developing strategies that help before it's an ER event, as they have no clue and could make things much worse. I've chosen a different approach to all this and hopefully a successful one.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!

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