Syrinx/syringohydromyelia?

[kelbelrn16]

Hi, I am new here and just looking for some help. About 2 years ago, I developed horrible occipital headaches and had an MRI done. It showed some nerve compression and degenerative changes in my spine, along with tiny syringohydromyelia. The neurologist I see said this was a congenital birth defect and shouldn't cause me any problems. Well, 2 years later I am still suffering from headaches, to the point that it is affecting me at my job and my personal life. I requested another MRI, which still shows degenrative changes in spine along with "stable dilatation of the central canal versus small syrinx/syringohydromyelia in the mid cervical cord".

Can anyone explain to me what this is and if my symptoms could be caused from this? My neurologist still states that this shouldn't cause me any problems but when I research syringomyelia, I can relate to some of the symptoms....my new symptoms are still occipital headaches that last for days at a time, pain in my left neck/shoulder/back region, fatigue, weakness in left arm. I have tried physical therapy and accupunture and this helps a little bit but the symptoms reappear when I stop therapy.  Any suggestions would be greatly appreciated. Maybe I need 2nd opinion or another test??
Kelly

[selmaS]

  Here is the link....keep in mind this is to help you get started to research Drs as this is not a referral nor endorsement of those listed.....hopefully you will find one close to you.

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

[Skippy777]

I live in Ontario Canada, hopefully that list has something in Canada ha

Fingers crossed :)

[selmaS]

  Sorry, I do not tweet...no idea how...lol....

What area are you in...we do have lists of Drs for you to use to research Drs.....the list was compiled by members here of Drs they have been to, treated by and liked.....

Let me know, and I will post the link....and be advised..there may not be Drs in your area and you may have to travel....I did and it is well worth it.

[Skippy777]

Thank you again,

I'm in the gathering understanding phase, I'm tweeting experiences using #syringohydromyelia

I humbly and honestly appreciate your help.

I'm in the referral process now, so I'm asking for a Chiari specialist

[selmaS]

  Didn't your Drs tell you the origin of your syrinx? T stand for thoracic and since you had mentioned thoracic ....

I ask if it was an injury....did you have one to that area?

Get copies of all testing and reports this may help you figure out what exactly is going on....as with Chiari , Syringomyelia is not something most Drs are well informed or experienced with.

Do try to find a true Chiari specialist as they will have the experience needed to help you.

[Skippy777]

Thank you very much, Great amount of insight.

It's not Chiari, interesting you mention thoracic I did not know it was based on an injury.

I learn something new every day.

Thank you for your knowledge,

If you have any other tips I'm all ears.

Thanks

[selmaS]

  Hi and welcome to the Chiari forum.

When reading about Chiari and Syringomyelia on line they lead you to believe they are rare conditions and they are not.....more have Chiari then have MS! It is well informed and experienced Drs on Chiari that is rare !

May I ask, do you also have Chiari or is your syrinx due to an injury to your thoracic area?

I would suggest trying to see a Chiari specialist as they also treat Syringomyelia.....

We do have a list of foods that are anti inflammatory foods and can be helpful......TOP 10 ANTI-INFLAMMATORY FOODS
1. Wild Alaskan Salmon: Salmon contains anti-inflammatory omega-3s (wild is better than farmed) and has been known to help numerous ailments. Try and incorporate oily fish into your diet twice weekly. If you don't like fish, try a high quality fish supplement.
2. Kelp: High in fiber, this brown algae extract helps control liver and lung cancer, douses inflammation, and is anti-tumor and anti-oxidative. Kombu, wakame and arame are good sources.  
3. Extra Virgin Olive Oil: The secret to longevity in Mediterranean culture, this oil provides a healthy dose of fats that fights inflammation, can help lower risks of asthma and arthritis, as well as protect the heart and blood vessels.
4. Cruciferous Vegetables: Broccoli, brussel sprouts, kale and cauliflower are all loaded with antioxidants. Naturally detoxifying, they can help rid the body of possible harmful compounds.
  
5. Blueberries: Blueberries not only reduce inflammation, but they can protect the brain from aging and prevent diseases, such as cancer and dementia. Aim for organic berries, as pesticides are hard to wash away due to their size.
6. Turmeric: This powerful Asian spice contains a natural anti-inflammatory compound, curcumin, which is often found in curry blends. It is said to have the same effect as over-the counter pain relievers (but without their side effects).
7. Ginger: Ginger contains a host of health benefits. Among them, it helps reduce inflammation and control blood sugar. Ginger tea is a great addition to any diet.
8. Garlic: Though a little more inconsistent (in terms of research), garlic can help reduce inflammation, regulate glucose and help your body fight infection.
9. Green Tea: Like produce, this tea contains anti-inflammatory flavonoids that may even help reduce the risks of certain cancers.
10. Sweet Potato: A great source of complex carbs, fiber, beta-carotene, manganese and vitamin B6 and C, these potatoes actually help heal inflammation in the body. (source http://www.chicagonow.com/clean-convenient-cuisine/2010/09/best-and-worst-top-10-most-inflammatory-and-anti-inflammatory-foods/)

[Skippy777]

I was recently diagnosed with #syringohydromyelia, there seems to be allot of confusion about it. And more limited Dr's knowledge on the topic. It was by MRI mine extends from T4 in the Thoracic to T10.

I've had huge amounts of pain in my back top to bottom, difficulty walking, neck, headaches, shooting pain out of the feet and loss of sensation in arms and hands and incontience.

Trying to get a Neuro is a challenge,

Are there any foods or nutrients I should focus on in the mean time?

Thanks Skippy

[hevnw8s]

I want to comment since you and I have the exact same symptoms. However, I have Chiari and a small syrinx on my mid thoracic spine. I also have degenerative changes in my lumbar spine with a stable 3mm syrinx. My symptoms mimic yours and my doctor told me my syrinx is too small to cause any problems. I comment only because our symptoms are the same and we seem to have very similar changes in our spine.

The headaches, neck pain and pain behind both shoulder blades ("Cape Effect") are debilitating at times.

I am going for a third Neurosurgeon opinion tomorrow. I have a feeling I will hear the same thing....but I will let you know.

:)

[selmaS]

   Not being a Dr I can ot say nething for sure,but me as a patient I would say nething is possible unfortunately...

And if u find this is what is the cause of ur symptoms, that does not mean there is a simple way to help it either....

Do keep us posted on ur Dr search and what u find out along ur journey.

[kelbelrn16]

The MRI is showing a syringohydromyelia...I have not been diagnosed with Chiari. I have never been diagnosed with, or treated for any spinal cord injuries.

My question would be, is it possible that at age 34, the symptoms I am experienceing could possibly be related to this? I am currently being treated with medication for migraine prophylaxis. My dr just seems to be brushing this finding off and I'm not certain of this. I will look into finding drs in my area who may specialize in this.

[selmaS]

  Hi and welcome to the Chiari forum.

U mentioned 2 different but very similar conditions syringomyelia and syringohdromyelia....do u have a DX of one or both?

Do u also have a DX of Chiari, or has it been ruled out?

My suggesting would be to find a Dr that is a Chiari specialist as they treat all related conditions and both of the above mentioned conditions are related to Chiari.

The problem is there is not much they can do as most times the syrinx is too small for a shunt or stent .....so those that also have Chiari, the decompression surgery is done to help restore normal CSF flow with hopes the syrinx will shrink.

Knowing the cause of ur syrinx is one u need to look into as well...yes many times this is a congenital condition...while it can be caused by an injury as well....

Congenital conditions can cause one to not recognize symptoms as we consider how we feel to be "normal" since we have always felt that way.

Drs are not all up on how these conditions may affect us as it is not well covered in Medical school....only Drs that have chosen to focus on this condition and do their own research have the info and experience in dealing with all the related issues and know how it can and does affect us.

Take a look at the list of Drs we have compiled by the members of the Drs that they have been to, treated by and liked...the list is not a referral nor an endorsement, but a means as a starting place to research Drs and find the right one for u,.---http://www.medhelp.org/health_pages/list?cid=186