I am praying for you and your family.
I am so sorry to hear about your pain, Heidi. I can relate to some extent, as I also have cysts throughout my spine. My pain, however, came on gradually over a number of months but then got much worse after I finished radiation for breast cancer last February. I consulted with Dr. Feigenbaum too, in fact I was going to be put onto the surgery list. While waiting to get my surgery date, I tried going on Gabapentin for nerve pain as my pain was just getting worse and I was having trouble walking/standing. By some miracle, this drug has worked very well for me - I know it doesn't for everyone. I told Dr. F's office to put me on hold for surgery for now. What have you tried for pain? Just so you know....you are not alone. I'm not sure how this website works, but feel free to send me a message if you wish. With Love, Heidi in Michigan, USA
Hi Heidi. So good to hear from you. I live in South Africa, so I'm quite far away from other Tarlov sufferers. I'm currently on Epleptin which is also helping me alot with pain, but it has other horrible side effects: headaches, mood swing, constipation, etc. Doctors here just not sure how to handle this disease. I will definitely find out about gababentine. Thx for the message and please do keep in contact. xxxxxx
This disease is absolutely horrific. I know what it feels like to have lost income also, as I'm responsible for 3 kids. Please try cymbalta for your nerve pain. It has helped me tremendously. You have to keep your spirits up. You have to. Your kids need you. I had 3 surgeries for it. The first 2 were unsuccessful and I nearly died. I ended up with a shunt in my brain and was bedridden for 2 years. Do not give up. I have learned that YOU have to be in charge of your own healthcare and you have to fight through to find a doctor that can help you. This is becoming more common now. I have an amazing surgeon named Dr. William Welch. If you could find a way to the US, he will help you. Google him. I'm praying for you and us all. If you're on Facebook, there's a lot of support groups and I've had a lot of help from there. Hugs, Shelly
Are you on Facebook? There are a few sites
for Tarlov sufferers so you don't feel all alone.
Nancy
hi Heidi
so very sorry you are suffering so.
i take Gabapentin (Neurontin) as well.
Its prescribed for nerve pain.
Not a narcotic. I'm 300 mg cap 3x day
and it does work YET a 4 yr span now of nerve compression is leaving my L leg nowy R leg weak Scarey Bladder bowel affected some
i'll be praying for you Cymbalta is VERY hard to get off of and side effects ugh
God bless you
Jean in Florida
Thank you so much to all of you for your inspirational messages.