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Chiari dozens of questions about symptoms


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Old 03-17-2009, 11:44 AM   #1
dawn1214
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Chiari dozens of questions about symptoms

Hello everyone,

I am new to this board I am searching for answers to questions about Chiaris.

I have a Chiari it is about 5 to 6 1/2 mm. I have had 4 different measurements but these 2 are the closest. lol

1st I would like to thank cindy for her information on a specialist. I am considering getting in touch with TCI although it is quite a distance away.

I am having a range of weird symptoms and would like some input from everyone if they are Chiari related. I should also mention that I have a thyroid problem (hypo) on synthroid for 18 years and I have a cavernoma in my spinal cord which is why I am confused on symptoms because some of them could be caused by the cavernoma. I am seeing a neurologist and have gotten second opinions by 2 neurosurgeons, one of which is Dr. Spetzler in AZ. I sent my info to him. They were willing to do the chiari surgery if I wanted but not the cavernoma as that is too risky. They highly suggested waiting a year to see what both would do as they can not say if Chiari is causing them for sure.

My symptoms:
blurry vision right eye mostly,

head pressure in the back of my head very rarely a migraine just a couple of times a month but really bad pressure feeling (hard to explain)

Neck tightness (just terrible) all the time lots of trigger point problems, have been going for weekly massages but just not helping

numbness and burning tongue. very strange feeling.

muscle spasms all over different places not painful just annoying

Fullness in right ear, sounds like there is water in there all the time.

Ears ringiing

Just recently nasal problems, lots of post nasal drip, swollen passages

Off balance a bit, feels like I am in lala land

Right shoulder blade pain( just terrible too), have had this for 4 years spent a ton of money on anything and everything I could to get the pain to go away. This is how my chiari and cavernoma was found with testing for this.

Now my right leg is giving me problems, pain, pins and needles etc. comes and goes.

I am also experiancing shortness of breath can't seem to take a deep breath this has been going on a while now and sometimes i think it is in my head but could be causing some of my dizziness.

My neurological tests have come back fine. I have had all sorts of testing, Mri's Q flow study came back good so csf flow is ok. Are these typical symptoms of Chiari? also can everyone pipe in and tell me what meds they are on for pain and to help with symptoms. I would really appreciate any feedback. I am in the Buffalo Ny area so if anyone knows of a good neuro guy near here I would love to find someone close by to do followups with.

thank you for your time and sorry for the lengthy post

Dawn

 
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Old 03-17-2009, 09:09 PM   #2
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Re: Chiari dozens of questions about symptoms

Hi Dawn, My problem was first caused by a car accident in which I ended up with severe whiplash. I went first to a chiro, then a neuro, then physical therapy. Even though I was slowly getting better at first, I had a whole range of terrible symptoms where I thought I was losing it mentally. I felt out of it half the time, forgot words, felt like I was floating, had numbness on one side of my face, the symptoms were numerous. PT was the only thing that helped me and I continued to get better after going for about a year? I can't remember the length of time but I was in bad shape. I have never been to massage therapy, I believe it is not as aggressive as PT? PT was 3 times a week and my problem was deep within the muscles so I needed intense muscle massage, it didn't feel great but helped me immensely. Then, months later, I started having horrible dizzy spells out of the blue. They would almost knock me over. I also had light headedness. It didn't occur to me that I had the same problem because i was no longer in pain. This was when I went to my regular doc and he thought I had a virus. Prescribed me meds and well you know the story from there. 6 months later I was no better and recognized my symptoms on my own and went back to PT. I found out if a person doesn't get it completely treated, similar to an illness, it hangs around and can come back, that's what mine did. I was almost done with PT and got tired of going so I just decided I was done because I felt good. I wasn't done though and ended up paying for it! Anyway, I do know that if you do have a what they call a " soft tissue problem " which can be knots in muscles that are very deep, these put pressure on the blood vessels affecting the blood flow and oxygen going to the brain, which naturally can cause light headedness, numbness, tingling, pain, dizziness etc. And in order to fix this " if this is the problem " you must find out first if this is the cause. A neuro can check, and a good physical therapist can find these trigger points also, mine did. The treatment for this is aggressive and mine was painfull because my muscles were so bad, but the guy I helped before on here actually had no pain or symptoms except for the dizziness and light headedness, so he was naturally hesitant to think this could be his problem. I wish you luck and hope this helps you a bit. I know what it is like to live with all of these symptoms. I will be on here almost daily now and keep an eye on how you are doing. And I am going to read up on chiari before i can try to help you with those questions.

 
Old 03-18-2009, 03:43 PM   #3
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Re: Chiari dozens of questions about symptoms

hello Dawn

well I don't post that much on here lately,but I have a 6mm Chiari.

I had almost 30 sx and it was a living nightmare.The neuros decided to treat my low-normal B12 with B12 therapy(I have a history of B12 deficiency...the "hidden" kind and was dx with an MMA test.

After 2 years of B12 therapy my sx are mostly gone....so it wasn't the Chiari causing the sx.

Be careful about going into decompression surgery....it could ruin your health more than help you.If you don't have a Syrinx then I'd hold off on the surgery.........that is my opinion,but everyone's Chiari is not the same.As I said before...all my sx were alleviatyed with B12 therapy.

You said you have a burning tongue...so did you get your B12 level checked?The B12 level test is not enough alone by itself...an MMA test will show a "hidden" B12 deficiency.

Scout

 
Old 03-18-2009, 06:31 PM   #4
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Re: Chiari dozens of questions about symptoms

Wow scout thank you for that. Actually one of the neuro guys I saw suggested getting that checked as well as a few other things. I think I was checked for b12 last year or the year before. Is this something that can come on all of the sudden? Should I be checked again? I definitly do not want decompression surgery. I have heard good and bad but a lot of the bad scares me. I am hypothyroid and am at pre menopause age and am wondering if some of my symptoms are related to these things. Jumping into surgery is not me. I am very concerned about the cavernoma as this is a recent finding so I am sure my anxiety level is up a bit too. I am planning on rolling along with the chiari and waiting it out. Did you have surgery? if so how did it turn out for you? Can you tell me what symptoms you had from the b12? was is muscular? Any info you can give me would be great. Thank you so much again for responding to my question...Dawn

 
Old 03-18-2009, 08:13 PM   #5
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by dawn1214 View Post
Wow scout thank you for that. Actually one of the neuro guys I saw suggested getting that checked as well as a few other things. I think I was checked for b12 last year or the year before. Is this something that can come on all of the sudden? Should I be checked again? I definitly do not want decompression surgery. I have heard good and bad but a lot of the bad scares me. I am hypothyroid and am at pre menopause age and am wondering if some of my symptoms are related to these things. Jumping into surgery is not me. I am very concerned about the cavernoma as this is a recent finding so I am sure my anxiety level is up a bit too. I am planning on rolling along with the chiari and waiting it out. Did you have surgery? if so how did it turn out for you? Can you tell me what symptoms you had from the b12? was is muscular? Any info you can give me would be great. Thank you so much again for responding to my question...Dawn
hi again~

First of all I definitely think that perimenopause has a Huge Role in a lot of your sx...I say that,because Many women are going through similar health problems and I don't think it's a coincidence.All my sx started when I entered perimenopause too.

No I didn't have the decompression surgery....that is just not an option for me.Like I said before almost All my sx are gone.I am in menopause now(almost 2 years)and I really do believe the changes in fluctuating hormones was the reason behind my health problems.

B12 is a tricky issue.....most drs. will not treat you with B12 shots if you are in low-normal range...most labs say normal B12 is 200-1100...so if you're under 400 you may get some sx and under 300 you are more than likely to get a mass of sx.Mine was 278 when I was first dx...my hematologist did an MMA(methylmalonic acid)test and uit was extremely elivated(normal was 90-200...mine was 415)which showed an "occult"(hidden) B12 deficiency.

It is a real shame that most drs. are not well educated in B12 matters.You can read more about B12 in my posts to sosweet and CK on this board.....or my posts to my friend RainbowsEnd on past posts here and on past posts on the anemia board.

I will be back on tomorrow and discuss sx of low B12...I'm just really tired tonight.Scout

 
Old 03-19-2009, 08:08 AM   #6
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Re: Chiari dozens of questions about symptoms

yes please comment further on all that I am very interested. When you get some time and feel like it. I am going to check out a physical therapist today for the tightness in my neck. Next week I have an appt with my neuro and am going to request the testing for b12 so any additional info you can give me would be great. That way I can go in without sounding so dumb. lol

 
Old 03-20-2009, 09:44 AM   #7
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Re: Chiari dozens of questions about symptoms

hey dawn,glad you found the brain borads. i am just wondering and you may have already mentioned this previously in that pm,but just EXACTLY where is your cav located in your cord,at what level and if you have that MRI, what does that rad report state about the exact location in reference to inside the cord location? it does matter as far as symptoms.

one huge symptom i had that we now know was strictly cav related that i had was this hidious prying anD pressure sensation right underNEATH my right shoulder blade. it was this constant "gnawing,prying/torqueing" sensation that just never ever went away, no matter what i took or tried since it was from just that cav even existing in my cord. it DID go away finally after the cav was removed at 90%. believe me, when your cord is being affected directly by just about anything it can create some very off the wall types of "perceptionary" pain and bizzarre sensations. if you have that exacting location of the cav(for example, mine was left lateral in my cord), where it is sitting inside your cord, it would really help me to help you better defining your symptoms.

by the way,whether you are actually aware of this or not, that doc you sent your stuff to is one of the very tops in dealing with cavs and AVMs too, the veinous fed cavs arterial counterpart. you ARE in some very great hands with him. that should be a huge relief for you,really. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-21-2009, 06:32 AM   #8
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Re: Chiari dozens of questions about symptoms

Dawn,

Many, if not all, of your symptoms are experienced by some people who have had undiagnosed Lyme for years. Lyme is considered one of the Great Imitators because it mimics so many conditions....not only do I think you'd find a lot of company on the Lyme boards, I think you may find people whose symptoms have responded to treatment.

The fact that you're in upstate New York, puts you at risk for this condition as Lyme is reaching/has reached epidemic numbers in your area of the country.

Bethsheba

Last edited by bethsheba; 03-21-2009 at 06:33 AM.

 
Old 03-21-2009, 07:11 AM   #9
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Re: Chiari dozens of questions about symptoms

I have been tested for Lyme and it was negative,, Thanks for the input though,

Dawn

 
Old 03-21-2009, 07:16 AM   #10
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Re: Chiari dozens of questions about symptoms

Marcia,

My cavernoma is located at t2. it is 2 mm. All the report said is basically that. The first 2 reports only mentioned a hemosiderin ring. The last report said a probable cavernoma. I am not sure why the 1st 2 reports didn't say anything about the cavernoma.

I have had the itchy burning pain in my shoulder blade for 4 years (right side). I have been through every test available to figure out the pain. I have had carpel tunnel and ulnar nerve surgery to try to fix it and of coarse none of it worked. I have had injections, therapy, massage, acupuncture, chiropractics, the list goes on. Please tell me who and why they removed yours? Did you have a problem or did you find someone who understood that it was a problem. How soon after surgery did your pain go away? Where was yours? Ahhh so many questions for you. Can you tell me your whole story about it. I am very interested... Dawn

 
Old 03-21-2009, 08:03 AM   #11
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by dawn1214 View Post
I have been tested for Lyme and it was negative..
Dawn, tests for Lyme are unreliable and diagnosis by Lyme Literate Medical Doctors is based on symptoms (although test results are taken into consideration)...that is to say it is a clinical diagnosis. You might be interested in reading some of the posts on the Lyme boards. Many, many, many Lymies posted negative multiple times for years but they did respond to treatment.

Did your doctor use the Elisa? Or did s/he send to Igenex? Some say the Elisa is worthless for testing for Lyme and think it should be banned. Although, no test is perfect, Lyme specialists rely on Igenex testing for Lyme. Again, some Lymies still test negative and there are lots of reasons this occurs, none of which I have time to explain here.

Good luck!

Bethsheba

 
Old 03-22-2009, 06:07 AM   #12
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by bethsheba View Post
Dawn, tests for Lyme are unreliable and diagnosis by Lyme Literate Medical Doctors is based on symptoms (although test results are taken into consideration)...that is to say it is a clinical diagnosis. You might be interested in reading some of the posts on the Lyme boards. Many, many, many Lymies posted negative multiple times for years but they did respond to treatment.

Did your doctor use the Elisa? Or did s/he send to Igenex? Some say the Elisa is worthless for testing for Lyme and think it should be banned. Although, no test is perfect, Lyme specialists rely on Igenex testing for Lyme. Again, some Lymies still test negative and there are lots of reasons this occurs, none of which I have time to explain here.

Good luck!

Bethsheba

 
Old 03-22-2009, 06:10 AM   #13
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Re: Chiari dozens of questions about symptoms

Ok wow I guess there must be more to this than I understand. i really don't know what he used. I just assumed it was a regular blood draw along with the rest of my testing. Was there a special test that should have been done?

What kinds of problems does Lyme cause? I will definitly check out the lyme boards. Thank you..

 
Old 03-22-2009, 10:47 AM   #14
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Re: Chiari dozens of questions about symptoms

Quote:
Originally Posted by dawn1214 View Post
Ok wow I guess there must be more to this than I understand....
Dawn there is more to this than all of us understand. Although Lyme has been around for well over 100 years (researchers "autopsied" museum mice and found evidence there), it is a relatively "new" disease to us and there is alot we don't know...and even more we can't accurately test for (again, this is not the place to go into detail but a little research may tell you alot in terms of why tests are not accurate).

From what I understand there is only 1 lab (maybe 2?) in North America, that has tests that are designed for Lyme and its coinfections, and that is Igenex...and those tests (which include the Western Blot, for one) although much better than other tests, can result in false positives and in false negatives!! Because we don't have reliable testing, International Lyme Experts (and yes, this is an international problem) agree that although testing may support a diagnosis of Lyme, treatment should be based on symptoms even if testing is negative! Again, you can find this information if you look as it is available for doctors or anyone else to see.

What kinds of problems does Lyme cause? Well, because it is a bug and because there may be other bugs that "go along for the ride" (co-infections), it can circulate thorughout the body and can cause problems in the brain, the bladder, the urinary tract, the reproductive system, the thyroid, the bones, the muscles, the cartilage, the senses (hearing, smell, taste, vision), the nervous system, and I'm sure I haven't covered them all. Lyme mimcs many things...if you read the Lyme boards you'll find that Lymies have been mis-diagnosed with everthing from anemia, low blood pressure, allergies, skin problems (rashes, acne), dementia/alzheimers, Hashimoto's thyroid, Celiac Disese, fibromyalgia, multiple sclerosis, bipolar disorder, ADD, etc. I think it is safe to say everyone has a different combo of symptoms, and the length of time that someone has "lived" unndiagnosed with the disease may be one factor as to what and how many symptoms someone has.

Something to think about...some Lyme experts believe that more than 1/2 of all chronic illness is actually damage caused by lyme or its coinfections.

Dawn, I live in an area where this condition is an epidemic and has been for several decades...but it wasn't until I began reading these boards over 2 years ago before I began to see how widespread, how underreported, and how undiagnosed this disease is. And I am appalled at the ignorance of the medical community given the epidemic numbers in our country (and other countries) and the devastating damage the disease can cause.

I'm not a doctor so I can't diagnose you but again, I will say that given your symptoms you may benefit by researching this possibility yourself. I have found that people who rely soley on their doctors knowledge and advice pay a very high price for that trust....and I say that from personal experience.

Take care, Dawn, and good luck and good health to you! I would hope you would keep in touch!

Bethsheba

Last edited by bethsheba; 03-22-2009 at 10:49 AM.

 
Old 03-23-2009, 01:15 PM   #15
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Re: Chiari dozens of questions about symptoms

Just wanted to chime in.

This is coming from someone who has suffered from chronic lyme (been on IV meds. and treated by a well noted LLD in NJ ) AND chiari malformation. I recently had surgery at TCI 6 weeks ago.

Many times I am not sure which thing causes which symptoms but what I CAN tell you is that lyme does not cause your celebellar tonsils to herniate. That is a structural issue - not one created by those nasty ticks. As you already know the herniation can cause a restriction in CSF flow. I did not note, have you had a CINE flow MRI to check your CSF flow? That can cause many of the symptoms.....

Just keep in mind that, yes, you may have both but the actual herniation has NOTHING to do wth lyme - NOTHING. That info. comes from both a leading expert in Lyme as well as a world-renown chiari specialist at TCI.

Would not hurt to see a LLD, but by all means don't make the mistake of assuming everything is coming from lyme - I did that for too long and it causeed me alot of problems. Best of luck...

 
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