Tarlov's Cysts

[Celeste]

I should have a surgical date set within a week or two but this guy has a waiting list worthy of Hibner

This is different--you're going to someone who does an extremely complicated surgery that to my knowledge you really can't get done anywhere else in the US. Add on top of it that he is recognized as the best...and what you've got is worth waiting for.

[Karyn]

Hoooooraaaaay, HM! I'm so happy for you! Finally! It sounds as though you're going to the best of the best and have high hopes for you.
Are you still going to try the botox?
Love,
Karyn

[HerMajesty]

Hi Karyn!
Long time no talk to Karyn, miss you and hope you are doing well!
I think I will still do the botox as long as the approval goes smoothly under the new insurance and doesn't turn into another battle. Even if the piriformis spasticity IS due to the tarlov cysts, the botox will temporarily paralyze the muscle and maybe give my poor lil nerves bit of a break. They have not been so happy lately, and I have a long wait ahead of me.
I probably won't get an appointment date as soon as I thought...Dr. Feigenbaum's Assistant emailed me to say that after his dictation about the phone conference is finished, the chart first goes to her, she starts the insurance pre-authorization, and THEN it goes to his nurse who will call me for scheduling. So all my fall / winter / holiday plans are still on hold, but hey small price to pay.

[nyt]

HerMajesty, glad to hear things are moving forward with your Tarlov cyst surgery. I'm sure you will be glad when this is done and over! All the best to you!

[Karyn]

Hi HM!
I've missed you, too! I hope you've enjoyed your vacation!
I get where you're coming from with the botox injections. Anything new on that front? I'm so excited for you about your upcoming surgery. I hope they call you back with a date soon.
Do you know if you'll have to make more than one trip out there?
I'm doing very well! I really have to get on the ball with posting an update.
Please let us know when you hear something from Dr. F's office!

[HerMajesty]

nyt, thanks, all the best to you too! I saw your other post and sorry you are having a rough time. It's been rough for me too lately and I don't like to complain either. Trying to keep that positive, proactive attitude while deteriorating physically kind of sucks sometimes. I think you and I will both win that battle though!
Karyn, it seems I will only have to make 1 trip out there barring major complications, though I will have to stay at least a week or two before I can fly home post-op. The latest reply I got from Dr. F's assistant, said they are scheduling surgeries for October now but I might not hear from them for another month to schedule (and I'm not sure what a month means to her, since she told me I would get a phone consult in 2 months and it took 6 months). So I guess I might wind up having this done in November or December (??). Getting the botox is moving slowly, long lame story, I think life will be status quo for the next month or two. At least I hope status quo, I picked up some lovely new symptoms in March and am hoping to not add any more! I'll post if I get a surgery date or a botox procedure but don't hold your breath
I am so happy you are doing better ! Yes, post an update and then someday soon I hope to see you post a success story!

[Violet M]

Hey HM, I love your tenacity. And I love your ability to make us laugh even when you aren't feeling so great. Keep hanging in there, girl.

[srinmav]

I dont remember when was the last time I posted here. Some updates..

I have been completely disabled and bedridden for 3 years now and looked after by my aging parents.
No treatment was on until 6months ago when some of my relatives took the initiative. Current diagnosis include

A large arachnoid cyst at S1-S4.
Severa pseudomeningocele between C4-T2
Possible myopathy (yet to be biopsied)
Severe osteoporosis.

Went thru quite a bit of horror - including fractures when i fell off bed, bedsores, intractable pain etc. My weight dropped frok about 145lb in 2015 to only 84lb by may 2019 but now it is upto 105lb now.

Was unable to do pretty much anything by myself until 2mo ago but now slowly getting better. Was able to stand with a walker a week ago. I am scheduled for biopsy (muscle, nerve, skin etc as needed) detailed review and possible surgery of the cyst and/or meningocele 2 months later. Till then pain meds and physio to try and walk again after nearly 4 years. Keep fighting folks dont give up anytime.

[stephanies]

Hi Srinmav,

It seems like you have several issues at your spine that could be causing your PN symptoms. I hope you are able to make progress walking again while you figure out your surgical plan, if any. Please keep us posted on your progress.

Stephanies

[srinmav]

I will post on a separate thread. I have several questions and need some directions so that i can guide my relatives thru a difficult diagnosis and treatment process.