See "Who’s chirping about Multiple Chemical Sensitivity?" for the story posted on The Canary Report.
Thanks for mentioning my blog today, Susie. My experience with nitrous oxide was enough to keep me from ever having it again!
See previous blog post below for specific details about my experience with nitrous oxide. I am still feeling lethargic today and I had the nitrous oxide three days ago! This is not supposed to happen but that is how my body has reacted to it...
Related link:
Friday, December 26, 2008 No More Abscess. Tooth Extraction Itself Went Well. Going To Go Rest Now. (UPDATED: My Nitrous Nightmares)...
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
11 comments:
My dear Jeanne, it sure sounds funny to congratulate you for being featured for such a not fun physical experience, but... thanks for sharing what you went through so at least others can learn about this.
Jannie
This is the comment I left there:
"Wow, scary. I've always reacted poorly to things such as anesthesia and I'm always told 'redheads react worse than others'....but now I'm wondering if it's really chemical sensitivity?"
Jannie,
It's funny. I almost always have the "rare" reactions, the "unusual" events, the "atypical" adverse effects to various medications and such.
While I understand that these same medications can be helpful and safe for some people, I do think it's important to talk about the adverse reactions that some people have.
Healthcare professionals, in my experience, often seem to operate as if the "rare" reactions don't matter. (I'm not suggesting my oral surgeon did this. My reaction happened after I left his office and he doesn't even know about it).
The thing that gets me is that there are enough people out there who have these "rare" reactions that it's written up in pharmocology papers and such. I think no matter how "rare" a reaction might be that patients have a right to know the risks.
The trick is that (in my experience), when I have unusual reactions to things my healthcare professionals almost always say they have never seen xyz happen to any other patient.
I totally get the fact that reactions that are rare enough to have never crossed a particular doctor's radar over X number of years is just not something they are informed about because they have never needed to be.
If they weren't taught something in medical school and they have never encountered it, obviously they can't caution patients about it.
The thing is that in the pre-Internet years, I was left thinking I was, literally, the only person these unusual things happened to.
Now that so much is documented on the Internet, a simple Google can turn up cases of other similar patients.
That's one reason I blogged about this incident. It's interesting how many hits I've had in the last couple of days for people searching terms regarding adverse effects of nitrous oxide. Sometimes I think events are more common than healthcare professionals believe.
I can't tell you how frustrated I have become over the years with being told repeatedly that I am the only patient who has had xyz reaction.
Even if I were the only patient in the world to have a certain reaction, it should still be taken seriously.
What I have found over the years is that often the patients with "rare" reactions have their symptoms dismissed.
I found it interesting that The Canary Report post today has already had another MCS patient post a comment about her own adverse reaction to nitrous oxide.
Leslie's comment on The Canary Report was particularly alarming:
http://www.thecanaryreport.org/2008/12/29/whos-chirping-about-multiple-chemical-sensitivity-2/
Also, my sister knew I was having a tooth out but didn't know nitrous oxide was being used. I know she has had all sorts of unusual incidents at dentists' offices over the years (not all tied to nitrous oxide).
Anyway, when she heard what had happened to me afterwards she said, "I'm sorry. I didn't know you were having that". As it turns out, my sister had a terrible reaction to nitrous oxide in her 20s where she was vomiting for days after having it.
I remembered it clearly once she told me when it had happened because I was the one who drove her that day to the oral surgeon... and I was the one who kept pulling the car over for her to vomit on the way home.
Clearly there are some people who have atypical reactions. It's too bad that they are seldom taken seriously.
Hopefully by telling my story when these events occur, I can help the next person who is Googling to see if they are the "only one".
Jeanne
Alicia,
It's interesting that you bring up the "redhead factor" because I remember reading something about redheaded endo patients... It wasn't about MCS.
Don't quote me here... I believe (going way back in my memory bank here) that I had read something from the Endometriosis Association about redheaded endo patients being at greater risk for melanoma?? (As in.. at greater risk than redheaded non-endo patients)...
(Endo patients in general have higher risk for melanoma than non-endo patients but I believe redheaded endo patients had more risk yet, from what I recall). I'm sorry I can't direct you to a source.
I'm going strictly on memory here. I think I read it in an EA newsletter years ago. I remember thinking at the time that it seemed like some sort of genetic "clue".
As far as MCS, I don't know what type of reactions you've had. I do know many endo patients from our local support group have MCS.
Also, Susie Collins quoted me an interesting stat the other day.
She & I had exchanged emails about the nitrous oxide incident and I asked her about the incidence of MCS because I've been getting lots of MCS traffic on FEEDjit.
Susie emailed me back that the The National Institutes of Health says about 30% of the population in the US is sensitive to everyday toxic chemicals in the environment to some degree.
That figure blew my mind but it explains all of the hits my blog has been getting on chemical sensitivity posts!
That is a lot of people!
Jeanne
Alicia,
Now you've got me curious so I'm Googling. I just found an interesting article connecting endo to some types of cancer.
I've only read a small portion of this but it mentions the increased risk of certain types of cancer for endometriosis patients.
The article from 'Epidemiology • Volume 16, Number 4, July 2005' is called:
"Causes of Infertility
as Predictors of Subsequent Cancer Risk"
http://dceg.cancer.gov/Files/brinton165002005.pdf
Jeanne
Alicia,
I just read more of the article linked above...
Here is a quote from the previously mentioned article in 'Epidemiology':
{{See link at http://dceg.cancer.gov/Files/brinton165002005.pdf}}
"High risks of melanoma were noted both in a
survey of 4000 women conducted by the Endometriosis
Association (17) and in a follow-up study of 3,940 college
alumnae (28); in the latter investigation, the relationship was
restricted to subjects with red hair. Our finding may reflect
that endometriosis is more common among women with red
hair, (29) a phenotype recognized as predisposing to melanoma.
(30). However, an earlier study of nonredheads observed
a connection between endometriosis and dysplastic nevi,(31) a
recognized precursor of melanoma. In contrast, a large casecontrol
study failed to document an association with endometriosis,
although this finding was presumably based on few
women with such histories.(32) It is therefore unclear whether
endometriosis is a true risk factor for melanoma or merely a
reflection of correlated risk factors".
(Please see link above for footnote information)...
Jeanne
Alicia,
Just found this link:
http://cat.inist.fr/?aModele=afficheN&cpsidt=3696087
"A prospective study on the association between red hair color and endometriosis in infertile patients"
Jeanne
Okay, I'm gonna check out those links will probably answer some questions, but...what exactly is melanoma?
Well, I've always been the person who takes drowsy type meds and ends up hyped up for 10 hours. But the worst was anesthesia after my lap. I stopped breathing several times and was totally loopy for days. It made me wonder how other ppl have laps and then are 'normal' in a day or two while I was still completely loopy and 'out of it' for at least a week. I was outside of myself, it was so scary which is why I am dreading when I'll need my next lap (which the dr is trying to put off until AFTER we have our babies....)
Once again, THANK YOU for all you do to bring awareness to misunderstood issues in the medical field!
Alicia,
Sorry for the delayed response. Foe the first time in 7 months, I lost a comment to my blog in the inbox.
I just found it in my dashboard as "unmoderated" and was like, "holy cow, how did I miss that??" My email inbox is out of control!
Anyway, melanoma is a form of skin cancer. Women with endo have a higher risk for it than non-endo people. Someone fair like you with red hair... more so.
If you look at that link I posted above, you can see research on this stuff.
My intention isn't to alarm you but to make you aware of how extra-important it is for you to do the whole sunscreen, sunglasses, hat, etc. routine.
Yeah. Sudafed makes me high as a kite. I hear you on that! I often have opposite effects of what's "supposed" to happen.
Many women have challenging recoveries post-lap... not just you. Docs typically make it sound like a piece of cake.
For most endo patients I have met, it is far from it!
That's not to say your reaction is "typical". However, I always take much longer to recover than the docs say.
(I've had 6 laparoscopies and 1 laparotomy/major surgery... which included bowel resection and carcinoid tumor removal/appendectomy).
The anesthesia keeps getting better each surgery for me. The last surgery they used something newer to the US that has been used in Europe for a long time.
It was great! I had a LONG chat with the anesthesiologist before surgery. He was amazing.
I have had "out of body" experiences -- very scary.
In fact, I'm still not "right" from that 12/26 nitrous oxide. I don't care what anyone says. It's still not 100% out of my system!
I have had meds show up on blood tests WEEKS after they should have been gone (has happened many times over the years)! It always baffles the docs but they can't argue with the blood tests...
That nitrous did bad things to me.
I always marvel that some lap patients actually do feel semi-normal a couple of days after surgery.
I truly think they are the exception after all I have read, heard, etc. over the years.
With the local endo group, I cannot tell you how many women have called me crying about how sick they are post-op, how there is NO WAY they can return to work, and how they don't know what to do!
Getting the timeframe (note back to work) re-written for returning to work (written by these docs that don't take account for differences in healing from one patient to another or who don't even count complications post-op for squat!) pressure women to return to work too soon and they call me in tears.
I always tell them to call their doctor, tell the truth about their symptoms, and insist that they either fit the person in (either an early post-op appt or an extra post-post op)... or - sheesh - that they simply take the patient's word for it and mail the note for work -- to prevent patient from being in the car when she should be in bed!
Cannot count how many have called me sobbing about this "rush-back-to-work" issue!! It is terrible!!
If/when you have another lap, I would suggest you make sure to tell them DETAILS about what happened previously.
If you have your operative report great. If not, I would request it.
You have a legal right to access your own medical records.
Cost for copies varies by state but I think it's 75 cents a page for you.
Having operative reports is helpful for many reasons. It probably won't reveal what anesthesia was used but hopefully hospital will be able to track that down using your records. Best to have your own records than rely on hospital to store them indefinitely...
You just sign a release...
Important to communicate with anesthesiologist about any previous issues.
I have had REALLY good luck with recent lap anesthesiologists really listening and paying attention to past experiences.
There may well be a superior anesthetic they can use in the future for you!
It might be worth investigating to try to determine WHAT gave you such a bad reaction before your records get too old to find easily.
Hospitals ship records out to other states (companies that store the records) and it's a big rigamarole to get records the longer they are past the surgery.
I once had to pay $176.20 to get records from an out-of-state company (paying up front) for one inpatient hospitalization. Many pages had one line (like fax cover sheets) but they charged for every single page. I was furious.
For an operative report, though, it's usually 1-2 pages.
It can't hurt to try to get the name of the anesthetic used. You may not get the name but you can try.
Even pinpointing WHEN you had the lap may clue the anesthesiologist in on what was likely used.
The man I had last time was able to pinpoint what I almost certainly had by quizzing me about when I had previous surgeries and what side efects I had.
Anesthesia back in the early 1990s was TERRIBLE compared to now.
The first lap I had was very, very scary in the recovery room. Not fun!
THANK YOU for the hard work you do to support, educate, and comfort so many people.
Your blog is full of helpful info and emotional accounts of your struggles that SO MANY can relate to and get comfort/validation from!
THANK YOU!
Jeanne
Jeanne, I totally missed this discussion until now! D'oh. Thanks for the shout out on the shout out (!). Here's the link to the report from the National Institutes of Health on scents and chemical sensitivity http://www.ehponline.org/docs/1998/106-12/focus-abs.html . It's ten years old, but still rings true.
Susie,
Thanks for the comment here! :)
I appreciate the link you sent. I just took a very quick peek and I hadn't seen that one!
You always find such good information!! :)
Jeanne
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