Hello - I am a newbie!

I am really suffering at the moment and am trying to connect the dots with my symptoms, so thought I would ask if anyone is experiencing or has experienced similar symptoms with Tarlov cysts...

I have spent about 7 months trying to work out what is wrong with me, but in short it appears I have five tarlov cysts in my lumbar spine all between 2 and 5 cms. I suspect I have more in my thoracic and cervical spine. Fun fun.

Symptoms in rough order from Jan this year to present:
First symptom was abdominal bloating and distention
Weird twinge in vulva region
Then reflux commenced
Neck pain
Pain between shoulder blades
Digestive system slowed
Weight started to creep up, would not fall with diet
Acne!?
Transit time slowed
Strong pain in lower left pelvic region
Moved to full blown chronic constipation
All my nails broke! (I am trying to make light of a very hideous year! Although, they genuinely did break and have not grown back!)
Headaches
Blurred vision
Ache in upper abdomen
Face started to puff up
Urination felt poor
Weight got worse, no change in diet
Twinge in vulva turned to pain in vulva
Wet the bed - WTF?
Legs and feet became all tingly and numb
Legs started to ache - now continual
Knees feel like they are dead weights
Feel constantly hot in temperature

SO, are there any red herrings in here? Has anyone else experienced dramatic weight gain and if so, is this water retention? I have put on 7 kgs and it is worrying me. I look in the mirror and do not recognise myself. I have an appointment on Friday with a neurosurgeon. I hope it is positive....

Appreciate your thoughts and experiences....

Lemon

A quick update -

The first neurosurgeon didn't want to know and basically told me to get lost. Luckily his saving grace was that he offered for me to see one of his colleagues. A week later, the second neurosurgeon, who was much more thorough, actually agreed that my cysts were the cause of my symptoms. I could not stop smiling!

The happiness was short lived because the following day I felt my urine output slowed down completely. It is really low. And weight gain is considerable.

Not one health care provider seems to be in a hurry to do ANYTHING. Neurosurgeon is sending me for a urodynamics test and an electrical stimulating test on my legs... but these are weeks away. Meanwhile, I can barely function as a human being.

What am I meant to do in the meantime?

I really can't function at work. Worried I need to have time off / resign / might get given the sack.

Right now, there is no clear end in sight....

Neurosurgeon has not given a plan of action for once the next tests are done and he won't be operating because he is in his 70s.

I have sent off MRIs to Dr F. Does anyone know how long it takes for them to get back to you? It has been a couple of weeks now.

I can only advise you to be patient......In my experience many of your symptoms could be related to TC's, but only a trained professional can make that determination. Dr. Feigenbaum has a busy schedule, so you should expect it to take six to eight weeks to hear back from him. I would suggest that when three weeks have passed after you sent your films, that you contact his office and confirm that they have received them.
In the meantime, do whatever you can to reduce stress in your life, and seek out support. Life will get better!

Hi - I know it's been a long time since your post, but did you ever hear back? Ever get satisfactory treatment?

I have only just had Tarlov Cysts idenified in my cervical spine (C7/T1 T1/T2 T2/T3 and T5/T6 - they were only looking at my cervical and thoracic area in MRI)

I also have some other things going on (reverse lowest cervical spine curve, osteophyte complex at C6/7 irritating C6 nerve, requiring an injection.

plus some other stuff....

That's how I found your post and got to hoping you were able to get some relief after a horrible year!

Katherine in Australia x

I'm on the first rung of the Tarlov cyst (TC) ladder and thought that my first recent encounter with the neuroradiologist was very lacking too. My MRI shows multiple cysts all along the spinal area and I have weak legs, pain in thighs and buttocks, lower back pain, occasional dizziness, partial erection when urinating reducing the flow, occasional loose bowels, pain in shoulders and neck and pressure behind my left eye and a feeling a marble is lodged there.

He too basically told me to get lost and prescribed the catch all more exercise and stronger pain killers. So I'm stuck: where do I go from here?

Ian in Caanada.

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Hello, I'm a newbie - have multiple Tarlov cysts, diagnosed by NeuroSurg thru MRI. Have spinal stenosis - had three fusion plates in cervical spine - have similar symptoms. Dr. said "inoperable" and addressed another area of pinched nerve in cervical area that could be operated on if pain gets worse. Not my cup of tea - had enough surgeries. My symptoms had been recited to primary care Doc and Heart spec. because I have some issues with heart - got no where. One MRI and visit to the right Doc and now I know. But I don't know now what to expect! So we are both kind of stuck but if we both push hard we will find our way out of this. I had to laugh at all the "talking points" of diets of plant foods, exercise, massage, mind over matter, etc. Its kind of insulting but they mean well. I like to have a Plan B and am trying to come up with one.

I too am a newbie. Its frustrating to be told there's nothing that can be done. My route is to go to my PCP and start there with the recommendations that Dr. F recommends. A full spine MRI including the sacrum with the radiologist noting every TC size and location. Im sure its going to require contrast which in itself is toxic. Then Ill get a referral to Dr. F. Im not in terrible pain but my issues are more bowel and pelvic related.