For the ladies - period & chiari

Symptoms and Treatments
1

Hi everyone! Haven't been on here in quite awhile. I'm now 1 year and 2 months post op from my decompression and 10 months post op from my last CSF leak repair (if you remember or you're new - I had 3 repairs after my duraplasty/laminectomy). I'm doing great!

This post is for the ladies...see, when I was suffering from my chiari symptoms I rarely got a period, ever! I'm on the pill and my OB said it was normal when you're on the pill for so long to stop getting a period. I always thought it had something to do with my chiari...but it wasn't until after my last surgery that I started getting a period every month again - sometimes even long and heavy compared to the past! I'm wondering if possibly the chiari had an effect on my period or if it was just that I was sick a lot and the stress from that simply caused me to never get a period. It was about 2 years that I was sick with chiari symptoms and also didn't get a period (when I did it was super light).

It seems like a big coincidence that now I get one and I didn't pre-surgery. Anyone else have this experience? I also posted a long time ago about weight and chiari and my weight ballooned after I started having symptoms and was wondering if my weight had something to do with my period (my OB said no!) ...I've only lost about 10-15lbs since my last surgery.

Just curious to what others have experienced!

2

Hi Doodle.

It's so great to hear from you even if it's about the dreaded CM post op period dilemna.

I am 45 years old but my hormones are totally normal and am not pre menopausal.

I just went to my Gynecologist because my whole life my period never caused me any problems.No cramping or heavy bleeding just lasted few days each month unless I was pregnant, like clock work. Until I had my CM surgeries. The Gynecologist has ran different tests and can't find any physical reasons for my Menorrhagia (Heavy , Prolonged Periods). It is common in people with Ehlers Danlos Syndrome or EDS, which is also a concomitant condition to CM. Currently I am trying a birth control pill to see if that will help the excessive bleeding, but is affecting my headaches. The next step is uterine ablation then hysterectomy if the ablation doesn't work. Please know you are not alone. Join the Woman to Woman Group. It's incredible and we talk about anything and every issue a woman goes through with Chiari.

http://forums.dinet.org/index.php?/topic/18524-eds-and-heavyprolong...

http://www.ctds.info/menorrhagia.html#overview

http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduct...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

Have you had your Vitamin K Levels tested? Low vitamin K levels make Menorrhagia worse.

http://www.ctds.info/menorrhagia.html

Menorrhagia:

http://www.cnn.com/HEALTH/library/menorrhagia/DS00394.html

There are many reasons you can develop secondary amenorrhea (lack of menstral cycle for more than 3 months).

See : https://www.clinicalkey.com/topics/obstetrics-gynecology/amenorrhea...

The only thing remotely I could find that would cause your period to stop that is related to CM would be if you were taking anticonvulsants or antidepressants or stress. Many Chiari women also have a thyroid malfunction even though it is an autoimmune disorder it has been linked to CM. It's called a concomitant condition in relationship to CM. Even though they are two individual illnesses there is an unusually high number of people with both illnesses.

This is also a great link that discusses the CM, Hashimoto, Fibro connection: This was written by a Christian and he does pray for the readers but the medical information is solid and a great article regardless of your religious preferences:

http://vitamvas.tripod.com/brain.html

I really hope some of this information helped, but please know you aren't alone.

There are many Members that have discussed the same issue. The Discussion Search has been out over a month but we do have past Discussion about this & Ning is working to get the Search fixed, but i do know we have discussed it on the Woman to Woman Group.

Tracy

3

Mine's gotten worse lately (I had surgery in March)... I don't know if it is going off the pill, or what... but definitely notable... PMS seems worse, too. Might just be strangely awful timing, though, since I wonder a lot if I am peri-menopausal (38)

4

Im kinda new and like to hear peoples stories. Im a skinny male who never had trouble losing weight. Or gaining muscle. Now after surgery i gain and lose 20lb in a month. Im not active as i should be, my muscle tone still shows. And back. And my pants dont fit. That is a new frustration. I have symptoms all the time. Not sure what sugery i had. I dont know how to find all that info. Super forgetful.

5

I hadnt had a period for 3plus yr im 30… had decompression 5.28.2013 and july 2013 had normal no pain/craps period…out of the blue period lasting4days…now no period again since then…idk what to make of it…

6

I don’t know my periods have always been irregular my whole life and heavy. Since my Chiari symptoms appeared (I am newly diagnosed - June this year 2013) have had awful pain and migraines, weakness for 2 years and the blurred vision, balance issues, numbness in face, arms, hands, legs etc since April 2013. Since my symptoms have progressively gotten worse my periods have too. They have gotten longer and more frequent. I have gained weight as well:(. Must be due to the Chiari. I am awaiting my appointment with a neurosurgeon.

7

My periods have always been irregular and nasty painful, but since decompression I have been experiencing another Chiari gift …adult acne. Awesome.

8

Last year I had periods that were extremely heavy and just didn’t stop, so bad that it landed me in the hospital because I had lost over 4 pints of blood. My OB could find absolutely no cause for it but now that I know I have Chiari I can’t help but think that they might be related. Everything is pretty much back to normal in that area now, although I do skip some months still .

9

Jcdemar… I jave the adult acne post surgery too :frowning: it sucks!

I have always been irregular all my life and had no period pains. I am only 7weeks post op… but the 2 periods I have had since have been heavy and first ever period “cramps” ugh…

10

I too have been experiencing problems. Before my decompression surgery this year--I gained quite a bit of weight...but did not have my period when scheduled (according to birth control pills); the week before my surgery I finally started my period (1 week early)...and it lasted for 2 weeks...so I had to deal with that when I had my surgery--not a fun experience. The VAMC had given me some steroid shots (to try to minimize the inflammation before my surgery date) that wound up causing a bacterial infection in my stomach and throat...I found out after my surgery that my VA doctors made a mistake. I wound up not being able to keep any food down for two weeks and lost 18 pounds those two weeks. When I was able to eat--it was only tomato soup. I wound up with another bacterial infection, acid reflux disease, and didn't have a period until this month (my surgery was June 4th). My OB doctor has been contemplating doing a hysterectomy due to the fact that he put me on birth control last year to control my periods/ with blood clots--and it seems that I am still having some of these problems. We have decided to see if waiting a little longer will allow a little time for my birth control/ periods to work together after my surgery and my body to get back to normal before we take a step like that at this time; but if it isn't straightened out by the end of this year the outcome may be inevitable.

11

Well first off congrats on doing so well at this point with all the CSF leaks, you're amazing! That alone is a lot to overcome.

I have been on the pill for a long time myself and I am about 14 months post op and unfortunately there was no change for me period wise. However symptomatically everything heightens around "that time of the month" and thanks to the Chiari my Dr. told me that once you mess with the brain/spinal cord pretty much anything is possible so it very well could be related. I noticed immediately following the surgery my periods were heavier but my body also went through trauma so who knows what the cause was.

I would also recommend checking your thyroid and maybe think about looking into different options for the pill or maybe an IUD. Apparently (and I just learned this myself) once you've been on the pill for a long time (years and years) you are supposed to either change your pill or switch your method entirely as your body will get used to the hormones, which I suppose makes sense but I think defeats the purpose.

Best of luck to you.

12

I am only 28 years old and about 1.5 post op I have lost my period. The doc told me it was because I ended up gaining weight.

13

Hi I have
been decompressed with a laminectomy in 2016 the neurosurgeon asked me if my periods where normal as I was and still am having issues I constantly feel sick to my stomach not sometimes not to the point it makes me want to hurl but I feel very off especially in the mornings.Anyways the doc asked me "have you noticed any changes in your monthlies’’ I replied “nope seems pretty normal to me.But then I pondered ''what is normal”.I feel that my monthlies have been super intense since my op im like a demon and I become extremely obsessive and depressive and I can feel the low estrogen levels my skin itches and I sleep and litrally cannot function even if I tried to.Now this interferes with my day a lot actually its more like a whole 3 weeks every month the week before,during and after.I don’t think that is normal I am not on any pill or birth control I just don’t know what to do about it.And was wondering if anyone else has a similar experience.Especially after an op.Like before my op periods where a minor inconvenience which felt unfair but did not phase me.Now days I hate it and am less tolerant.Oh and im only 24