Radiation Side Effects from Angiograms?

Symptoms and Treatments Post Surgical Recovery
1

Thank you for the greetings and warm welcome to this informational and encouraging forum. I sincerely appreciate the Brain Aneurysm Support Community.

On September 9, 2015, my posterior communicating aneurysm was clipped. On October 5, 2015, I had a subsequent emergency surgery for complications. For the most part both surgeries were successful. Both my neurosurgeon and neurologist are exceptional. However, this is a slow process and is extremely challenging! Although I am still experiencing a few mobility issues, short term memory loss, insomnia and fatigue, I thank God I am alive.

After 5 months, I am having serious issues with the shaved surgical incision area. Initially, only the incision site was shaved and did attempt to grow in October. (below)

15-12240841_167069183648042_432332309734432051_o.jpg1211×1020 112 KB

However, I now have hair loss on the entire left front quadrant, in short, one fourth of my head is bald! In addition, my scalp is inflamed, burning, itching and has welcomed scar tissue. In January , my neurosurgeon and neuro-radiologist has concluded that the irritation and hair loss results from the radiation used during 3D and CT angiography. Admittedly, I have had 20 plus angiograms, understand produces quite a bit of fluoroscopic beaming, but I never expected adverse side effects. Even as a 10 year Breast Cancer Survivor, I never lost any hair or experienced any severe after effects. And as I was informed it may take a year or so for my hair to grow after the last CT (which will not be anytime soon). Furthermore, I am allergic to the contrast and require a hospital stay per test.

I am an advocate of semi bald is beautiful ( my son joined me in solidarity by shaving his head completely) but there appears to be little relief for the scalp. I do not care about the hair, but nothing prescribed or suggested has helped with the other symptoms. I have used several recommended shampoos, Vitamin E Oil, Raw Shea Butter, Cortisone Cream, Burn Gel with Lidocaine, and graduated to Miaderm- L.

Has anyone had a negative reaction to radiation and received any relief? Please share. I appreciate any comments with similar or identical circumstances.

2

to the First Lady...a short welcome...and, thank you for all you have provided...

I have attempted to type more twice...and, twice I have been blocked off...so I will connect with you later.. Just numerous thanks at this point.. much to share...

This is the only site I have ever been blocked off ...and it has happened here before...thus, I will leave it at this time..

3

Jiminey Crickets GNJ1stlady! I’m allergic to the contrast and I do get an itchy scalp for awhile after any procedure with the contrast in it, as well as a rash on my upper back and throat. I end up adding Benedryl to my list of allergy meds for several days as well as keeping hydrated. I use a coconut shampoo and warm, not hot water. The heat seems to aggravate the rash. I also have to change shampoos every couple days. I used to have a bar of soap that was for camping that worked well, I want to say J R Liggets or something. It’s a one soap does all product. The best was something Burts Bees made for farmers it had tea tree oil and peppermint among a bunch of other stuff but when the big corporation bought him out they quit making it. I also use a lot of stuff with peppermint. I have Pure which is a glycerin soap and cetephyl which I have all the time.

I stay away from things based in alcohol as it seems to make the rash worse and it burns. Yes I’m like a kid, won’t stop scratching the itchies.

Oh and I’ve even made a batch of chamomile tea with rose hips and rinsed myself with it. I’ve even used Gold Bond on my head. It helped for awhile.

As you can see, I don’t have a specific this absolutely works and they still sell it fix. It seems for me it’s a lot about what time of year I get the contrast injected and what other allergens are around. Have you done any research on the Internet? If you find anything, I’d be interested. My next try may be something for poison ivy lol

Good luck!

4

Hello again...

I began asking q's on radiation in late 2011/early 2012; when new management took over this site, that forum was deleted...Thus, I cherish what you have come forward with from your MDs...Excellent...

Member Sherri Long has a subject: Radiation Exposure... where it may be grand if you can reopen that as we have many new members...

My procedure was the marketed minimally invasive coiling...mine was also a small 6mm PCOM.

As for your healing/skin irritations - post-d/c off to a dermatologist - same facility - and, I went off it - and on to things like organic lip gloss on the psoriasis-type areas on my hands.

The other part of "old memory" was that my first dermatologist pre-teen just gave me Vitamin B shots; since young adult, I take the B pills daily and have that in my blood tests.

As for my scalp - flaking/itching is forever - have used Milk of Magnesia on my skin, carefully in volume. Then, I had my first Shingles and the regular diagnosis/prescription - also used my MoM on it; and I was completely healed in barely a month surprising both my PCP and acupuncturist in my results. PCP told me he did not think I'd have recurrence or need the vaccine. However, I did several years later, and back thru the same process. Since then, I have become aware of apparent changes in my skin and put the MoM on it and have not had any true break out.

Recently, I somehow remembered my mother using vinegar in water to moisten cloths to put over any sunburn when I was young. Recently, I began sampling vinegar on my flaky/itchy scalp and thus far, working well for me. In time, I will feel comfortable telling my results.

As for my hair loss, it was tremendous - clogging my drain. Family fixed that and a friend took me shopping for another strainer to put over the drain; however, it still clogs if I am not careful in retrieval before super heavy build up.

Then, the hubby of a long-term friend jogged my memory on vinegar. He puts it in his glass of water first thing in the morning. - again in early evening. Another long-term friend then told me that her mother/aunts always drank vinegar water in the mornings - and her daughter learned of it when she stayed overnight w/gramma...and, she still does it...

The two organic shampoos I use are Earth Science and E&O - vary them intermittently - not specific times. I am a co-op member (have been for decades b4 an aneurysm rupture and they are very helpful when I ask questions about products. and have all the organic foods.

Since the procedure(s) while hospitalized, I also have had tremendous GI issues...and. which other members have, too.

As for you...delighted you are an advocate for your beauty...I definitely support it..

You may want to view Kennedy Kirsch's site and view her YouTube on her open surgery.

Please keep us updated...

5

Ah Ms Pat - I completely forgot about vinegar, I may have to try that rinse! Thanks!

6

Moltroub...can't hurt - might help...there is the Bragg organic vinegar...can be found in big supermakrets...a/w/a co-op....

Besides vinegar/water cloths on a sunburn...mom used to make the basic salad dressings...w/vinegar and oil...and some varied herbs and/or spices...

7

Thanks to ALL of you for responding. I will post a more detailed update when I can get to a computer. My vision is too bad to try it from the cell. There is no telling what I may type! (LOL)

I had neuro appointments last week which has resulted in an upcoming neuro-pulmonology admit. Will have date tomorrow. Details and replies to your post soon.

Have an awesome evening!

8

First Lady...thank you for all you have brought forward...

I have gone thru so much on the vision...to reading/comprehension loss and more...also have had close connection to others w/cardio / pulm issues..

Ican so remember the "expressions" I received on a number of my questions to neuro-whatever..

One thing .,.feel so blessed in this connection...the variance in open surgery/clips...and, the highly marketed minimally invasive procedures... which so brings forth the fact of the general "minimal / same area" of the bulk of aneurysms...I had such fantasies...I always imagined the med scientists and neuro specialists would have addressed a number of these issues long back... Time can/may tell???

Truly, it does appear/suggest your doctors do care about your status...

Again thank you and so await your results...

9

I have found candy canes great for my GI issues,

Peppermint is soothing and I find boxes after the holiday very cheap to last through out the year.

Yes will also try the vinegar solution, always good on sunburn, maybe help these Plavix, bruises and sores. Thanks for the discussion.....

10

always dark chocolate - 80% or more...

starbirder said:

I have found candy canes great for my GI issues,

Peppermint is soothing and I find boxes after the holiday very cheap to last through out the year.

Yes will also try the vinegar solution, always good on sunburn, maybe help these Plavix, bruises and sores. Thanks for the discussion.....

11

Try a plastic surgeon for incisions.

12

Dear Frist Lady......I have thought of you on/off... I thank Vicki for beginning connection w/you...

I hope you will, or have someone who will, update for you... I am so sensitive re: your comments on your vision...(as a main issue of mine) ...Prayers each step has been good for you...

13

Thank you. I pray you are feeling better. I shared this forum with my neurologist yesterday as an excellent resource for support and information. You all have been awesome!






patioplans said:

Dear Frist Lady…I have thought of you on/off… I thank Vicki for beginning connection w/you…

I hope you will, or have someone who will, update for you… I am so sensitive re: your comments on your vision…(as a main issue of mine) …Prayers each step has been good for you…

14

Thank you for sharing. A plastic surgeon would have never crossed my mind.



Vicki said:
Try a plastic surgeon for incisions.
15

I am very fortunate to have a team of medical professionals who genuinely care. Information for those who survive aneurysms is still limited from physicians. I do feel as if more effort to educate patients and caregivers is essential. Hopefully, Breast Cancer Awareness Month is an excellent start!



patioplans said:

First Lady...thank you for all you have brought forward...

I have gone thru so much on the vision...to reading/comprehension loss and more...also have had close connection to others w/cardio / pulm issues..

Ican so remember the "expressions" I received on a number of my questions to neuro-whatever..

One thing .,.feel so blessed in this connection...the variance in open surgery/clips...and, the highly marketed minimally invasive procedures... which so brings forth the fact of the general "minimal / same area" of the bulk of aneurysms...I had such fantasies...I always imagined the med scientists and neuro specialists would have addressed a number of these issues long back... Time can/may tell???

Truly, it does appear/suggest your doctors do care about your status...

Again thank you and so await your results...

16

Thanks for sharing. Candy canes and chocolate are good friends.



starbirder said:

I have found candy canes great for my GI issues,

Peppermint is soothing and I find boxes after the holiday very cheap to last through out the year.

Yes will also try the vinegar solution, always good on sunburn, maybe help these Plavix, bruises and sores. Thanks for the discussion.....

17

Wow, our journey’s surely qualify as a made for tv movie!
Thank you for sharing your story. Miaderm L Radiation Creme with Lidocaine, CVS Burn Gel and Gabapentin was the combination that soothed the scalp. It took several months to get relief, but finally I do not think I will snatch my scalp off. I do have a little hair growth and it grows very, very slowly. Kennedy Kirsch’s video is awesome. She is so young, but appears to have progressed tremendously. Thank you for sharing this reference. I hope others listen to her story as well.

http://brainaneurysmclipping.simplesite.com/418222856

How are you feeling?



patioplans said:

Hello again...

I began asking q's on radiation in late 2011/early 2012; when new management took over this site, that forum was deleted...Thus, I cherish what you have come forward with from your MDs...Excellent...

Member Sherri Long has a subject: Radiation Exposure... where it may be grand if you can reopen that as we have many new members...

My procedure was the marketed minimally invasive coiling...mine was also a small 6mm PCOM.

As for your healing/skin irritations - post-d/c off to a dermatologist - same facility - and, I went off it - and on to things like organic lip gloss on the psoriasis-type areas on my hands.

The other part of "old memory" was that my first dermatologist pre-teen just gave me Vitamin B shots; since young adult, I take the B pills daily and have that in my blood tests.

As for my scalp - flaking/itching is forever - have used Milk of Magnesia on my skin, carefully in volume. Then, I had my first Shingles and the regular diagnosis/prescription - also used my MoM on it; and I was completely healed in barely a month surprising both my PCP and acupuncturist in my results. PCP told me he did not think I'd have recurrence or need the vaccine. However, I did several years later, and back thru the same process. Since then, I have become aware of apparent changes in my skin and put the MoM on it and have not had any true break out.

Recently, I somehow remembered my mother using vinegar in water to moisten cloths to put over any sunburn when I was young. Recently, I began sampling vinegar on my flaky/itchy scalp and thus far, working well for me. In time, I will feel comfortable telling my results.

As for my hair loss, it was tremendous - clogging my drain. Family fixed that and a friend took me shopping for another strainer to put over the drain; however, it still clogs if I am not careful in retrieval before super heavy build up.

Then, the hubby of a long-term friend jogged my memory on vinegar. He puts it in his glass of water first thing in the morning. - again in early evening. Another long-term friend then told me that her mother/aunts always drank vinegar water in the mornings - and her daughter learned of it when she stayed overnight w/gramma...and, she still does it...

The two organic shampoos I use are Earth Science and E&O - vary them intermittently - not specific times. I am a co-op member (have been for decades b4 an aneurysm rupture and they are very helpful when I ask questions about products. and have all the organic foods.

Since the procedure(s) while hospitalized, I also have had tremendous GI issues...and. which other members have, too.

As for you...delighted you are an advocate for your beauty...I definitely support it..

You may want to view Kennedy Kirsch's site and view her YouTube on her open surgery.

Please keep us updated...

18

Hello. How are you?

Thank you for sharing. I guess I would say we still have a lot to learn and share in the community of aneurysm survivors. Brain Aneurysm Awareness Month is a start.

It has been a year since my first surgery and the most important advice is prepare to have patience with the process. It has taken 12 months for me to feel somewhat human. To sum it up, Gabapentin, Miaderm L, CVS Burn gel soothed the scalp. We tried everything that I could take to help me sleep, but finally I was referred to a pulmonologist. So I now have a C-PAP machine for sleep apnea, which by the way comes with head gear. Of course, I have had issues because rubber around my head is zero help. Nonetheless, since I am not adjusting well to C-PAP, we are weighing options. I declined surgery and can not say I will change my mind. LOL But that’s a whole other discussion. However, I just received a prescription for Aricept and pray it helps with the memory.

Last angiogram, August 5, reaction not good. Blood Pressure increased, so until it was stabilized and the contrast out of my system, a cocktail of BP meds and Benadryl drip was the prescription.

For the most part, I feel better. I still do not have permission to drive and will need to pass a neuro-driving test at rehab center. I did not know such a test existed. I have headphones to drown out excess noise and sounds. But my first venture to the movie theater (last week) was hilarious and disastrous. I stuffed my ears with baby wipes to muffle the sound. Dolby Stereo surround sound is not a good friend, but I made it through the movie providing laughter for my family. I image wipes out my ears looked space alien ridiculous!

But I think I can live with a few mobility issues, some short term memory and sensitivity to sound and lights. At least my scalp is better and I finally earned my wings. We will schedule a flight to anywhere soon!

I guess I still have hope for the journey and prayers for each of us on the forum.



Moltroub said:
Jiminey Crickets GNJ1stlady! I'm allergic to the contrast and I do get an itchy scalp for awhile after any procedure with the contrast in it, as well as a rash on my upper back and throat. I end up adding Benedryl to my list of allergy meds for several days as well as keeping hydrated. I use a coconut shampoo and warm, not hot water. The heat seems to aggravate the rash. I also have to change shampoos every couple days. I used to have a bar of soap that was for camping that worked well, I want to say J R Liggets or something. It's a one soap does all product. The best was something Burts Bees made for farmers it had tea tree oil and peppermint among a bunch of other stuff but when the big corporation bought him out they quit making it. I also use a lot of stuff with peppermint. I have Pure which is a glycerin soap and cetephyl which I have all the time.

I stay away from things based in alcohol as it seems to make the rash worse and it burns. Yes I'm like a kid, won't stop scratching the itchies.

Oh and I've even made a batch of chamomile tea with rose hips and rinsed myself with it. I've even used Gold Bond on my head. It helped for awhile.

As you can see, I don't have a specific this absolutely works and they still sell it fix. It seems for me it's a lot about what time of year I get the contrast injected and what other allergens are around. Have you done any research on the Internet? If you find anything, I'd be interested. My next try may be something for poison ivy lol

Good luck!
19

Once more...thank you...prayers for your success - in sharing w/your neurologist...

I passed my 13th anniversary mid-2016...but, since June 2014...I have had extreme worsening of my right eye (aka visual cortex) and inner ear (auditory cortex) close behind the visual cortex...If you have not had your hearing tested...you may want to address that w/your neuro-docs... I have not yet found specific data on how our auditory damage in the inner ear can/may relate to site/aphasias/other?

I get so mentally 'moved' by hearing/reading/seeing 'cognitive impairment'... more later

Sometimes I have attempted humor in addressing my accumulated squalor...have been side-tracked by some of that...beginning my 'pre-estate' sales...this past year w/initial+ I was updating appraisals & tracking sources of sales - auction/consignment, etc...and began w/delivery of some antiques yesterday...

It has taken me over a year from beginning appraisals to beginning decision steps...this is the first...

I plan to post another excellent site on the "limbic system'....

Again, thank you so much for your update...hope you continue with your results and your updates to us... Pat

GNJ1stLady said:

Thank you. I pray you are feeling better. I shared this forum with my neurologist yesterday as an excellent resource for support and information. You all have been awesome!



patioplans said:

Dear Frist Lady......I have thought of you on/off... I thank Vicki for beginning connection w/you...

I hope you will, or have someone who will, update for you... I am so sensitive re: your comments on your vision...(as a main issue of mine) ...Prayers each step has been good for you...