Anyone else have Chiari and Factor 5 Leiden gene mutation? or clotting?

General
1

Wondering if any other Chiarians also have the gene mutation Factor 5 Leiden...

also wondering if anyone has encountered issues with drugs prescribed for Chiari which led to blood clot or known increased risk for clots.

I have both and am always fearful of starting new meds. I always ask prior to being prescribed but some drs look at me like I'm crazy when I ask if there is any risk of clot or aphasia/dysphasia.

Any experiences would be helpful as Chiari symptoms can seem stroke-like at times and I can't tell the difference between TIA and Chiari symptoms. Just want to keep the risk as low as possible.

2

Pebbles,

I have both CM and Factor 5. I am on an 81 mg aspirin daily as my Factor 5 is not very bad but I do have to watch what meds I take and make sure it will not affect either the CM or Factor 5. They tried me on a stronger regime but it made the symptoms of the CM worse (i.e. dizzy, vertigo and balance). Now I'm looking at having to have the surgery for the CM but not sure how that will effect the Factor 5 after.

3

Roxanne-
I do know it is recommended to be on shots if thinners for 5 days prior to surgery. But with limited mobility after I’m not sure if it is usual to continue thinners temporarily.

4

Razzle-
Factor 5 Leiden is a gene mutation. It can be passed to children. Even grandparents can have children who test negative and their children can be positive.
It is a condition which affects how quickly your body breaks down blood clots. Reactive Protein C tests are typically done but only a genetic test can truely confirm or deny presence.
Blood clots in Factor 5 patients usually are superficial (in the limbs). However my father had a massive clot in his aorta. There usually are not preemptive warning signs. Once a clot has formed there may be redness, fevered and painful area where the clot has formed.
Not all affected by Factor 5 have clots. The likelihood typically depends upon whether one gene or both genes are affected (homozygous or heterozygous).
Recommendations for me where to limit vitamin K intake (leafy greens primarily). Vitamin K is a natural blood thickener. Up vitamin E intake. Vitanim E is a natural blood thinner. no smoking, stop often to move on long car/plane rides, limit being sedentary in general.
Because I was 27 when diagnosed it was not recommended to take asprin as my stomache would likely ulcer before I was old enough for the aspirin to truly be needed.
Its not a condition which typically affects daily life but it is very important to know when choosing medications.

5

Factor V Leiden

Here is a link to information...

6


I know I have read somewhere about Ehlers Danlos and clotting problems. I will try and find it :)
Beeba said:

I don't know if I have what you are talking about but I have anticardiolipin antibody - pretty high. Caused multiple miscarriages so I had to do heparin twice a day to carry full term. I now take baby aspirin once a day to keep blood thinner. After surgery it has helped with the new different headache - like burning type. I still have headaches but better since taking the baby aspirin. People with ehlers dahnlos this is very common.
7

Easy bruising and bleeding are not only characteristic

manifestations of clotting and platelet disorders, they are also

prominent features in some heritable collagen disorders, such

as the Ehlers–Danlos syndromes (EDS). The EDS comprise a

heterogeneous group of connective tissue diseases sharing

clinical manifestations in skin, ligaments and joints, blood

vessels and internal organs. Most EDS subtypes are caused by

mutations in genes encoding the fibrillar collagens type I, III

and V, or in genes coding for enzymes involved in the posttranslational

modification of these collagens. Easy bruising is,

to a variable degree, present in all subtypes of EDS, and is

because of fragility of the capillaries and the perivascular

connective tissues. Vascular fragility affecting medium-sized

and large arteries and veins is typically observed in the

vascular subtype of EDS, caused by a molecular defect in

collagen type III, an important constituent of blood vessel

walls and hollow organs.

I found an article about clotting and EDS do you have Ehlers Danlos ?

8

My mom has factor 5. I have a chiari and have been tested for factor 5 but I don’t have it. My neurosurgeon said they are not related.

9

I have antiphospholipid syndrome (APS). I also have SLE (lupus). I have a history of pulmonary emboli. I am terrified of the decompression because I have to stop my blood thinners.

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Beebah- One of the biggest issues Factor 5 causes in women is the inability to carry to term. I’ll have to research this as I was a gymnist as a kid and am still very limber for the most part, I also have the stretchy skin and gave had numerous bad sprains… I’m not sure if its the same issue as yours.

Liz- I have not been diagnosed with EDS.
Patti- were you gene tested or tested for the Reactive Protein C level? The gene test is the only conclusive test. Even if you are negative you can still be a carrier and pass this on to your children. Good FYI.
Weebelviii- I was told for hysterectomy I would have to be on thinners for 5 days prior to surgery.

11

http://en.m.wikipedia.org/wiki/Factor_V_Leiden
Some technical info and interesting information on Factor 5…

12

I just checked in on an EDS site and this seems to be the opposite problem as far as clotting is concerned. Factor 5 slows the breakdown of clots (which we all have very small ones every day).

13

Hi there I have both but the clotting factor was diagnosed already 11 years ago and my chiari only this year. I am 37 and already had 8 DVT’s, one pulmonary embolism and have a IVC Filter in place from 2009. I am on warfarrin and with surguries need to inject clexane. That is what is currently availible in south africa. My PI are never stable I have to do my levels at least weekly to determin my warfarin dose.
Riana

14

So I am assuming you have both genes? How much of your symptoms do you think are Chiari? Which ones? Do you have children? If so are they affected by either of these conditions? I have not been diagnosed with a clot so there is no need for thinners. What medications for Chiari have you not be able to use due to the clotting?

15

Hi,

I have F5L, diagnosed in 1998, when my midwife freaked that I was pregnant again after having a DVT 7 weeks after having my oldest. (FTR, 4 midwives, 4 OBs-the midwife who handled my well woman check 3 months prior told me no risks when I said we wanted to try for number 2.) My Chiari wasn't diagnosed until 4 years ago.

Haven't taken any drugs for Chiari yet, but that may be changing soon. I had a spinal fusion of C5-C6 last year, which has led to a spread of RSD in both hands AND last week, a nasty episode of Objective vertigo.

Related to the F5V, I've had 6 clots resulting in 3 vein strippings/3 treated with heparin injections. During my second pregnancy, I was on 30,000 units of heparin each day. I've had two venous stasis ulcers that took a year to resolve and in a holding pattern with just aspirin therapy. If I get another clot, I go on daily 5,000 units heparin (coumadin really throws off my PT times)

I know what is probably caused by the Chiari and what may have been related to it in the past, but I'm still not clear on what issues I have today are definitively ACM-related. I had 5 wrist surgeries, the spinal fusion and have finally identified the difference between allergy, migraine and Chiari headaches. The ACM headaches never responded to Imitrex injections, but they do respond to hydrocodone, so there's at least some relief.

All of my doctors are aware of my F5L and prescribe medications according to it. With just the F5L diagnosis, I was able to have all surgeries outpatient. Since ACM, though-I am kept at least overnight for observation (except for my vascular surgeon, that is). At least my kids are older and it's not a major problem if I'm kept in overnight.

My biggest concern is that I was diagnosed with benign positional vertigo in 2002, after 3 months of what my then 6 year old called 'spinnys'. I had an ENT and a Neurologist, they ordered an MRI, but didn't visualize the lower portion of the brain that would have given them the neon sign that I have ACM. Anyway, in seeking treatment for my chronic neck and shoulder pain that had gotten really bad in 2009, my neurologist was visibly concerned about the vertigo until I'd told him it had been 7 years since an episode, that I have occasional mild spins when getting into bed, or if I tip my head too high to look at something.

Then the MRI came back, along with the ACM diagnosis. He told me the vertigo was a known issue with ACM, as well as several of my other issues. I was fine until last week-had the Objective vertigo episode, noted the symptoms leading up to it and had those on Wednesday, with no actual episode. (thankfully, because I work/attend school a distance from home!)

I guess it boils down to each of us having different manifestations. I also annoy new doctors and my pharmacist when I am given something new. It's all you really can do

16

I was strictly advised against Imitrex due to the clot risk… most migraine meds have an increased rusk for clotting. I was prescribed midrib and butal.
Are you familiar with POTS? I know if can lead to vertigo and it is very common in Chiari patients.

17

Sorry not midrib… midrin

18

I have Ehlers Danlos, Chiari (post-op) and Factor 5 Leiden.

I kinda forget about the last one. I'm on blood thinners for it.

I have never had a blood clot... I discovered the Factor 5 Leiden (& several other blood abnormalities) when Dr. Fraser Henderson ordered specialized blood work after my surgery. Something clued him in and he was suspicious. I don't know what it was, but he was right.

19

How many of you who have responded to this have other family members with these conditions?

20

Mominmaryland, if you don’t mind my asking… what were the other abnormalities?