Does menopause make symptoms worse or does chiari make menopause worse?

[marti897]

Hi! I have been lurking for several days here in the community. I found the group via a google search for chiari malformation and medical marijuana. I enjoyed the thoughts and insights of your members on that and other threads and decided to join, having forgotten (imagine a Chiarian forgetting) I was a member of MedHelp already. So after banging around on my keyboard, my password is reestablished and I'm good to go. My question or problem is that I have had an increase in the misery of my symptoms.... which was what had me googling the M.M in the first place. Like alot of places in our country, we have had a ALOT of storms. As a result I have had 2 consecutive "good" days in about 6 weeks. Headache and balance problems we all live with, be these headaches are horrible. When I was diagnosed in 2003, laying flat provided relief or at least a decrease in pain. Now pain wakes me when I'm laying flat. I have also had two incidents in the past week while asleep of having difficulty breathing which wakes me from a nightmare of having a huge asthma attack, or drowning. When I jerk awake, I move my head/neck position and can breathe again. It's pretty scary when it happens. I noticed on the threads alot of discussion about hormones, early menopause, and other "lady things" I definately relate to.  Before I was diagnosed, I had "menstral migranes" and birth control pills made them worse, I finally figured out. Now I am experiencing a cessation of periods, with hot flashes that are outta control! My head is hurting so bad that I am having; problems in daily functioning, increase in speech difficulties, increase in swallowing difficulties, increase in limb pain (all of them), more difficulty in waking up and getting to the blessed wonderful coffee pot (coffee is the only way I can clear the brain fog and wake up), this weird breathing thing, problems with concentration and even typing this post. I'm dropping things quite a bit, and having this strange feeling occasionally that I'm going to have a seizure, although I have had only one in my life, and I'm not sure it was actually a seizure because I lost consciousness... okay, that sounds like it really could have been a seizure. I have a regularly scheduled appt  with my primary Dr. in a couple of weeks and plan to request an MRI just to take a peek. He always asks if I want one, but I've declined because I felt like it was pointless. I refused surgery back in 2003 when I was originally diagnosed. When I was well enough to sit up at the computer and research back then, I found that symptoms often reappear 3 to 5 years out, and my neurosurgeon himself said I had a 50% chance of pain relief after the decompression. Anyway, I declined.  So my questions for all of you that would like to give input are:
Has anyone experienced these things with menopause?
Does size matter? Men always say "no" but I'm asking about cerebellar tonsil herniation here
Has anyone refused the big gorry surgery and had a shunt placed, if so what was the outcome and presenting symptoms before the surgery?

If it matters, I am 48 years old, my chia pet (if ya have to live with it- name it) chiari is15mm as measured last time in 2004 I think. I have a concurrent diagnosis of raynauds, and undiagnosed- I believe fibromyalgia and ehlers-danlos... (or I have alot of body pain and am super limber). Incidently I am curious if anyone knows if they have a family history of MTHFR. We have alot of MTHFR in my family; my children, my sister, my sisters children..... and I've never been tested. But it seems to me if MTHFR reduces the bodys capacity to metabolize folic acid, and inadequate folic acid can result in neural tube defiects, and chiari 2 is spina biffida, ipsofacto... could it be MTHFR (2 copies) could lend itself to chiari malformation embryonically? Just a thought.
Thanks for taking the time to read my post and please respond if you have any thoughts.

[selmaS]

  U r welcome.
  I am so glad u will discuss this with ur dr...let us know what u find out : )

      "selma"

[lynnbrook177]

Thanks Selma

It's all greek to me, but I wrote it down for the visit to the NS. I think I'm still in denial that all these possible things could be wrong with me, but it's great to feel so educated about all this due to this forum.  I doubt that I would have mentioned the hotflashes to the NS at all, so much appreciated!!

Heather L

[selmaS]

  Were u tested for an auto immune thyroid issue?...many it seems with chiari have it...it is called Hashimoto's thyroiditis....something to look into...and btw, they have to test more than just TSH other wise u could have a "normal" reading....

They should test free T3 and free T4, TSH, and TPO antibodies....

   it could be playing a role in ur hot flashes too.....

    "selma"

[lynnbrook177]

Hi

I was feeling like I was the only one one here past my thirties.  I am 49 and was diagnosed about a month ago.  Chiari was missed on my first MRI a year ago, so I went on my merry way thinking I just had some muscle/nerve issues.  During that year, (I'll keep this short) I started getting hot flashes and at about the same time, I went for a follow-up MRI just because they said I should.  My symptoms were manageable and I was unaware that anything was seriously wrong.  I don't know if this is normal for menopause, but the hotflashes have stopped.  I wonder if the hotflashes were due to the tonsils decending to 18mm, since this was not noticed the first time. Who knows...don't even think the docs would be able to answer that one.

[selmaS]

Hi...well to get straight to the point- welcome back : )

Ummmm first u asked about size- the size of the herniation only matters to those close minded drs that use size to classify if u have chiari or not.
Chiari is  the malformation of the skull, this malformation causes the cerebellum part of the skull to be too small and forces the tonsils down and out onto the brain stem and spinal cord.
Regardless how far the tonsils herniate below the foreman magmum, what u need to know is do u have a CSF obstruction as a result of the tonsils....they can be long and thin and cause no issues, or short and wide and plug it all up tight.

U also want to know if u have ne related conditions such as a syrinx, tethered cord, Ehlers-Danlos, sleep apnea(which could be an issue for u)....ICP....and a few others.

I am confused by ur question about refusing surgery but having a shunt placed???


The raynauds could be a result of having EDS as is the fibro dx...I was told I had both, and found I do not,....

I do have a cousin with spina bifida and his brother had a little girl with it, but she did not survive.....so , I often wondered the same things u r asking......


The key here is  to have the right dr...one that is a true chiari specialist...one u r comfortable with...and that the benefits of surgery out weight the risks.

U mentioned sleep and breathing disturbances ...these r very important and could indicate ur chiari has begun to block more CSF than it may have been doing if it has been for some time...or u may have had a fall , bump or something that triggered symptoms to flare.

What ever the reason....having a breathing issue is one that needs immediate attention.

As for female issues...I went into premature ovarian failure...or early onset menopause.....my symptoms during  were not that bad, but I was young......late 30's.
I took  a all natural product Remifarin (sp?) as I could not take HRT it increased HA's and in reading the pamphlet it said not to take if u had olive skin,...which I do....I was never able to take birth control no matter how low the dose....and the drs told me about this product which worked great for me.

At the time I had no idea about chiari or the thyroid issue I had related to chiari...and I now know or believe that it was my chiari that caused my early menopause.....I was told to just accept it...and they would not do testing to see y.

I hope I got all ur questions...and as far as the size, yes ur herniation is large, but if it is skinny it may not be the issue, but time has gone by with no MRI's to see the changes and u can have changes in short time frames or not for long ones....there is no way to know for sure without the MRI to compare...and  new symptoms r a indication as well that something may have changed.

  "selma"