My appt. with Neurosurgeon

I haven't posted much about this (maybe once only?) - because frankly it really scared me.

Soon after testing positive for lyme, the Neurologist called me with results of the MRI of my thoracic spine, because it showed a 'syrinx' from T4-T12. I had previously seen the Neurologist and had asked him for it.

My GP had already discussed these results with me...and I had researched...and it looked pretty grim. A syrinx is a fluid filled cyst in your spinal cord. Usually caused by Chiari malformation (cerebral tonsils herniating down - causing redirecting of CSF into the cord)...but also can be caused by a tumor, or trauma (eg. car accident - resulting in damage/scarring of an area of the spine). Lastly, they can be 'idiopathic' meaning - no known cause. They usually grow over time, and cause symptoms...such as pain, weakness, paralysis, etc. My GP, said not to worry, it could be an 'incidental' finding.

The Neurologist told me it was something like 4.6 mm in diameter. If they find a cause, they correct it (surgery) and often the syrinx goes away. If there is no cause, they don't do surgery unless it is worsening and you're facing paralysis. It's risky, and it usually doesn't improve your symptoms, just stops the progression.

So, I started researching, trying to find something...to hang on to...to make me feel better. I found that sometimes idiopathic ones never grow and are asymptomatic. But, with my symptoms...how would I know if it's lyme..or the syrinx?
I also found out that sometimes Transverse myelitis - which is inflammation of the spine...is sometimes misdiagnosed as a syrinx...they can look the same on an mri.
So, I told myself, maybe the lyme has caused inflammation in my spinal cord...and it looks like a syrinx...or maybe I do have transverse myelitis...which may not be so bad...I read 30% of people diagnosed recover fully.
I requested a followup MRI which the Neurologist ordered - and 7 or 8 months later, I had it and there was no change. Yay...a small victory!
A few months later, I got a call from a Neurosurgeon's office - giving me an appt. to see the surgeon. Well, I momentarily panicked because surgery is a last resort...if they feel it is growing and they have to do something.
I had my appointment on Friday - this Neurosurgeon is highly rated, highly regarded - even in the Chiari arena. He was a calm, courteous, nice Dr. He put my mind at ease immediately. He said he didn't believe my symptoms were caused by the syrinx. I held back my tears. - I have been living with the fear of this thing for almost a year now.
He told me it was a small one...and showed me the mri...and it only measures 1.2 mm at the largest spot. He did strength and reflex testing on my upper and lower body...and said he was confident the syrinx wasn't causing any symptoms.

i told him my symptom background and mentioned I tested positive for lyme disease. He was accepting of the diagnosis...and believed chronic lyme disease exists...and said he thought that my body had inflammation and resulting symptoms. He did not say that he thought I had lyme disease, but he did not try to argue that I didn't. That's good enough for me.

He said we will follow up yearly with mri's to check the syrinx.

I feel so much better.

That's good news Girlie, you must feel so relieved! That's a long time waiting for an answer...

M

How very strange. I bet in 10 yrs, when much more is discovered about lyme & co… the world id going to be shocked by how much damage it does.

Good news though.

p

Girlie,

I have not yet been diagnosed with Lyme, but my 15 yr old son has had many of the symptoms I've had at least when he was little.

I was diagnosed with Fibromyalgia. i remember when Chiari malformation first came up. It became very instant news because some doctor said he could fix everyone. it became the miracle cure of the week. I knew one person who had the surgery and I recall her as being very delicate after that. I don't know how long ago it was because the support group has disbanded.

My son comes into this because he fell off the growth chart and his pediatrician had some tests done that showed he had low growth hormone. More detailed tests showed that he did indeed have very low growth hormone. The first test ordered by the Pediatric Endocrinologist was an MRI. When we met to talk, he mentioned that there was an interesting finding but not anything to worry about. He mentioned that my son had a mild Chiari Malformation and was surprised when I knew what it was. i explained and he asked if I had ever had an MRI done myself. He was curious if I also had a Chiari Malformation. Not because it was a problem, but because he was curious if it seemed to have some basis in Genetics.

He was not ever concerned about it. In the years (5 or 6) since, it has never come up and been checked again. Even though my son has gone from below zero on the growth chart to the size of an average 16 yr old boy (at 15 1/2) using growth hormone injections, it has not been a concern. He grew at an accelerated rate because that was the only way to catch up.

The internet has been a godsend to so many of us because it has allowed us to learn about our conditions and connect with each other. The flip side is that there is so much information we sometimes take it a bit to far.

We all need to remember this forum works not just an information exchange but also as a support group. What is hard for one person to bear is much easier when spread out among many. It is a shame that you spent so much carry this weight on your own. I'm sure there are many who would have been happy yo help you with this. I know I would have been happy to share my experience especially given all that you have given to this group.

At the same time, thank you for sharing because if this is something you were dealing with I'm sure there are others out there going through the same thing.

Thank you,
Kim

Thanks all for the replies.

Kim - you are right about "Dr. Google" on the internet - it is a double-edged sword.
On the one hand it has provided me with some good information, but on the other hand, it has also scared me. I have shed a lot of tears over this darned syrinx diagnosis.
Since I found out about the syrinx, when my back would hurt around the thoracic area, I would get worried and start thinking about the syrinx possible growing...and pushing on the spinal cord. It was always in the back of my mind.
I'm hoping I can get it out of my head now...and feel confident that it's 'just' lyme. haha - just lyme - as if lyme isn't bad enough.
Your story is interesting. I have red about Chiari and it seems that the surgery doesn't always make things better...I believe it involves removal of part of the base of the skull and sometimes the top cervical vertebrae to provide more room for the cerebral tonsils. This allows the CSF to flow more freely around the spinal cord and stops the fluid from entering into the spinal cord.
In my case it didn't look like my tonsils were herniated, so it is classed as idiopathic.

I didn't share because I was trying to ignore it...you know ....pretend it wasn't there. (That wasn't working very well!!!)

Happyjo - Here in Canada we are behind the U.S. in terms of lyme disease diagnosis, treatment, etc. But, I am so surprised at the support I have had. My own GP has accepted the diagnosis, believes it, and as she said "I've tested you for just about everything...and couldn't find anything else wrong with you". She is also supporting my LLND - by giving me a standing order for lab work to be done monthly.
Then, I happen to get one of the best Neurosurgeon's in my province...and he doesn't even reject the diagnosis. Wow...I am so lucky.
Even most of my friends and family members are supportive of it.
I really am blessed in so many ways!

Great news, Girlie!

I'm glad that's behind you and that you didn't need surgery.

thanks GH - I'm not sure what is responsible for this 'idiopathic' syrinx...but I'm thinking it could be from lyme disease.

There wouldn't be any information about it, though, because lyme disease goes undiagnosed and untreated. So, there most likely wouldn't be any research done on lyme disease and syrinx.

I think I will push for minocycline - next appointment to go with the Rifampin for bart...since minocycline gets into the CNS better than doxy (I think that's correct)...