I may be in denial...but...

Still trying to deal with the MRI showing a "syrinx" in my thoracic spine. I have done a lot of research to try to put my mind at ease.
The neurologist has ordered MRI's for my brain, cervical and thoracic spine. Unfortunately, it will be a few months before it happens.

They won't operate unless the symptoms get unmanageable, because of the risks of spinal cord surgery - unless they see something that is causing the syrinx. The most common cause is Chiari malformation - which I don't think I have because I don't get headaches...and I believe you are born with it...and I would have most likely had symptoms by now. Other causes - tumors that obstruct CSF flow, traumatic injury to the spine, or scarring of the spine.
I did read the inflammation can create swelling that could cause a syrinx to form. Also bacterial causes.

I am hoping that the lyme bacteria has something to do with it. I need something to hang on to. I do have a lot of inflammation and have had since the start of my symptoms. The problem is that once the cause is identified and taken care of, sometimes the syrinx persists. They can go in and drain it and put in a shunt, but that doesn't always alleviate the symptoms...and can sometimes bring new ones on. But, if they don't drain it, it can continue to grow and press on the spinal cord, and cause paralysis.

Sometimes the syrinx don't grow, and you remain asymptomatic.
I don't know if I have symptoms...because of the Lyme symptoms I can't differentiate.

So, maybe I'm in denial, but I am tellling myself that it is lyme related (unless the new mri's find a tumor) and that it will cease growing. I have to have some hope...or I may as well just crawl into bed and stay there.

My chiropractor said there are a lot of people walking around with them and don't know it because they've had no reason to get an mri of their spine. He has three patients with them. Two have no symptoms, one developed symptoms and it was emergency surgery, she is paralyzed from the waist down from nerve damage.

Sorry for the long post....had to get it off my chest.

My husband and I have had our cries...and now it's time to fight it. My hubby (bless his soul) says he believes I will beat it...and we will sell our house if needed and travel to the best surgical centre in the U.S. to have it taken care of. I'm lucky to have him.

Thanks Margaret.

Well, if there's a tumor that is causing the redirection of some CSF into the spinal cord, then removing the tumor would correct it.
If they can't find the cause...and the syrinx (fluid cyst) continues to grow, and puts pressure on the spinal cord (from the inside), then they can do surgery to place a shunt in to drain it. In that case, you wait until you get some symptoms and then have the operation. But if you wait too long, you could be paralyzed. You don't want to just get the shunt in - as you may never need it - some syrinx never grow...they just stay the same.

Re: Buhner. I started taking it in Mid May. In beg of July started the doxy. I herxed for 12 days. really bad back pain, and pain when trying to sleep. Traveler suggested that antibiotics, plus the Buhner's herbs may be too much. So I stopped Buhner, and went to half dose doxy. After three days, I went back to full dose doxy, and I haven't herxed since. So, now I've added zithro to the doxy.
I have stopped the doxy now for 5 days or so - as we are going to a very hot, sunny place for a mini vacation, and I have been extremely sun sensitive with the doxy.

I don't really feel well enough for the vacation...especially with the new medical condition, but I'm putting on my brave face. My 21 year old son and his girlfriend are coming with us...it's a long road trip, three nights in a hotel on a lake, and I think I'll regret it if I cancel out and send them on their way without hubby and I. I missed the entire summer last year...and I just want to have a bit of normalcy in my life. I feel like time is marching on...and my life is/has been on hold. I hurt bad, but I'll hurt bad at home, too...so what the heck.

I hope your vacation will be peaceful and relaxing. Will you have any kind of boat to go out on the lake? That would be peaceful for you if there's no motor involved. It's just nice to get away from the norm for a while.

Yes sounds very scary! My sister who also has Lyme has suffered from strange very painful cysts. She does not have them anymore now that she has addressed her Lyme. I am really hoping that it will be like that for you too. Enjoy your time with your family! It is so precious!

Hi Girlie,
I'm so sorry you are dealing with this. If it makes you feel any better I have a brain tumor. The brain tumor isn't even from my brain, it's from tissue somewhere else in my body and it traveled up to my brain and started growing in my brain. Makes no sense at all. It's something I may have to deal with later on. I could think of all the worst cases but I try to put it out of my mind. I know that is so hard to do. I wouldn't rush into anything though and get multiple opinions.

I would treat the lyme first and see if anything resolves on its own. Sometimes when you bring the body back to balance, other things start to heal on their own.

Not new, found it in Feb, but they said it wasn't the cause of my issues. But I know it's there. I also have thyroid nodules, also not a cause of my issues. The more you look the more you find. No one will be perfect anymore, technology has come too far to not find anything. So put it out of your mind if you can.

Lots of wonky issues for me, my throat has not cleared but the pain level has reduced a little so I can somewhat function. I'm working on clearing a big time mold issue from my house now.

Hi Girlie.Whats the status of your syrinx?I have one in my cervical and I am believing the Lyme caused this and is contributing to some of my symptoms such as neck pain and heavy head feelin.I just read A story on the web about a 14 year old who had chari and had surgery.They thought everything was taken care of and come to find out the syrinx had grown back after some time.His mom started researching and he was diagnosed with Babesia.So Lyme can cause these.

Post Edited (Familymatters) : 4/18/2020 7:37:14 PM (GMT-6)

Familymatters said...
Hi Girlie.Whats the status of your syrinx?I have one in my cervical and I am believing the Lyme caused this and is contributing to some of my symptoms such as neck pain and heavy head feelin.I just read A story on the web about a 14 year old who had chari and had surgery.They thought everything was taken care of and come to find out the syrinx had grown back after some time.His mom started researching and he was diagnosed with Babesia.So Lyme can cause these.

I went to a neurosurgeon soon after disgnosis (can’t remember the date) who has experience with Chiari and syrinx’s. He told me that he was certain it was not causing my symptoms. It is a very thin syrinx - 1 mm wide starting at T4 to T11 ( or 12?) Can’t remember.

I also did some research and found you can have a “persistent central canal” You are born with it and it’s supposed to close as you get older but for some people it doesn’t - and it presents like a thin syrinx. They are asymptomatic.

So I had several repeat mri’s over the past 5 years with no change and prob won’t have another one.

My first appt with Dr J - he also said he was convinced the syrinx was nothing to worry about and didn’t think it caused symptoms.

I don’t think about it anymore unless I’m reminded of it - or I go through all my imaging I’ve had done (brain mris, cervical mris, ct scan of adrenals, barium swallow X-ray of throat, etc etc

Girlie said...

I did read the inflammation can create swelling that could cause a syrinx to form. Also bacterial causes.

I'd put money on it that's the cause Girlie.

When I first dealt with treating lyme for the first three years, it was horrendous. I couldn't sit up straight in a chair due to so much inflammation in my spine, had super severe sciantica, back was in shambles and also headaches that would come and go if I lifted anything heavy.

By the 4th or 5th year mark, antibiotics were helping, the spinal inflammation was slowly going away, but the sciatica never really went away fully until I started treating with dapsone and some of the persister cell drugs Dr. H and Dr. J use. I know you've used your share of aggressive antibiotics with the Dr. J Clinic... But maybe you could try Disulfiram... half life is incredible and the penetration and potency is tremendous, a drug that would be worth to try to help target a bacterial infection deep within the spine.

I think bartonella is also a huge cause of affecting the spine.

"Vertebral Osteomyelitis Due to Bartonella henselae in Adults"
https://academic.oup.com/cid/article/35/12/e141/356641

I think bart and borrelia affect the spine tremendously, did for me, was one of my worse symptoms. But hey, not everyone goes through spinal problems.

What they call Lyme again, the great imitator right?

I thought I had 4 or 5 bulging discs in my back because of my severe sciatica, but when had an mri of my back, nothing.

I suspect though, the inflammation of my spine could of been pressing against my sciatic nerve. Or the infection itself was infecting my sciatic nerve in my hamstrings, not sure.

Considering lyme these days consist of at least three major pathogens: borrelia, babesia and bartonella.... What this disease can cause, is probably 100s of different disorders and symptoms, it's absolutely insane!

And as you peel through the layers of onion, we seem to get new ones every so often, then they go away. Makes me wonder if the biofilms are the layers of the onion, then when we reach a new bug, it comes out of hiding and flares up.

For the first 8-9 years, I really didn't have any PANS symptoms, until my bartonella just flared up out of nowhere. Maybe I had a little bit here and there over the years without noticing it, but when one of those persister cell drugs finally flared up bartonella, it became out for good.

It's a weird disease!

Girlie said...

dcd2103 said...
I'm so confused, Girlie, because when you asked me about SFN I said your symptoms didnt sound like SFN...it sounded more like a disc or spinal problem.

You told me that you had no problems with the spine? Turns out you had this syrinx? Wouldnt this potentially, even probably, explain your left arm and upper back nerve issues? Whats the status with the syrinx, what ended up happening there?

Lol - read my post above. After the mri - I saw a neurosurgeon and have had a few more repeat mris - no change in size.
Dr J saw my mri ‘s when I gave him all my paperwork since having lyme - he also said he didn’t think it was causing my symptoms.
He has seen syrinx in some of his patients and has seen them go away with treatment.

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Yah, I'm just sayin, the pain you describe is exactly what youd expect with a spinal problem. Its non-symmetric, weakness, pins and needles, numbness. It radiates across your upper back and down your left arm. That radiating pain is often a dead giveaway for structural problem. You've been treating lyme aggressively for 6y and its still there, so clearly just assuming its lyme and treating the infection hasnt solved the issue. In addition, pain due to inflammation isnt constant in the same spot for 6y. It's often sporadic, transitory and migrating.

I'm no spinal surgeon, but after watching my dad suffer his entire life w/ back problems, I realize that they're often wrong when it comes to diagnosing pain.

Literally if you just google Syrinx symptoms the first that that comes up is: a progressive weakness and pain in the back, shoulders, arms, or legs.

The only thing that makes me think its not related is you said you thought it might be T4-T11. Typically arm problems will involve the cervical spine and T1-T2. So maybe its not. Can you check and find out for certain if its def T4-T11?

I know you've looked into it and had repeat MRIs, so you've considered the possibility. I'm not trying to upset you or tell you you're wrong, just playing devil's advocate and bringing a different viewpoint. I'm probably wrong, especially if it is indeed T4-T11, but figured I'd argue the other side. Challenging our assumptions, especially when when we've hit a standstill, is often helpful...good luck!