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Barb's Nerve Pain

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Barb View Drop Down

I Donated to CPS 2017

Joined: Jun/01/2017
Location: Florida
Posts: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote Barb Quote  Post ReplyReply Direct Link To This Post Topic: Barb's Nerve Pain
    Posted: Jun/01/2017 at 7:49pm
Thank you, it's so nice to find other people who I can talk to about pain. It's not my favorite subject but something that I cannot ignore?? I have had 3 major operations on what is called a Tarlov Cyst. They are cysts that are located on your spine & when some spinal fluid leaks into the cyst it is extremely painful. Neurosurgeons do not like to operate on them because it's like trying to drain the cyst & than trying to sew wet paper back up.. I had mine operated back in around 2003. At that time only 2 dr's in the US would risk operating on them, now maybe3 dr's will. They can paralyze you. After the 3rd try & a lot of nerve damage done It was finally successful but I cannot stand any more than 15 minutes & my pain in my sacrum goes from a pain level of 5 to a 9 & stays there until I wake up the next day. Not fun as you all know.
I also have nerve pain in my right leg because of the way the nerve pain travels from my sacrum. The complete r. Leg is numb in the morning until I take aLyrica pill & it helps. I can only sit on my left side as I still have extreme nerve damage on the right side. It's sure fun to fly in an airplane! Joke!!! I still try & stay optimistic & hope I find out some helpful info here to make my life better. My husband just passed away 2 years ago & it gets pretty lonely now. I have 2 friends to go to dinner with when I feel good but it's hard for them to understand what chronic pain feels like. Sorry for the long post. It's hard to try & explain all this in a few words. Thanks for your patients!!!

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Stevie View Drop Down
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I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 27314
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/05/2017 at 4:30pm
Hi Barb and welcome here---

I'm so sorry that you've had such pain---and from the members here over the years with this condition I can't remember a good outcome from rare surgeries on these cysts. Many people do have them without pain--the fortunate ones.

You mentioned Lyrica. What dose are you on? If it's not effective for you have you tried switching to Gabapentin? Also, I believe that Florida has approved Medical Marijuana and while it can take long periods of time for dispensaries to open, keep this in mind. You'll find a lot of information about ways to use it on the site---and ways to use it without smoking or psychoactive effects if that's something you prefer. Many people have found relief from nerve pain with MMJ

Again, welcome here as we all understand the frustrations involved living with ongoing pain. And please accept my condolences on the loss of your husband.

Please donate to help continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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bigcat View Drop Down
Senior Member
Senior Member

Joined: Jun/27/2008
Location: Seattle, WA
Posts: 2470
Post Options Post Options   Thanks (0) Thanks(0)   Quote bigcat Quote  Post ReplyReply Direct Link To This Post Posted: Jun/10/2017 at 3:34pm
I use Gabapentin for me nerve pain, it has worked wonders for my nerve pain....
Moderate disc protrusion at L-5 S-1 midly indenting the vertral surface of the thecal sac andcontacting both S1 nerves , meds Vicadin 10mg    neurotin 1200mg ..robaxin 7.5mg ,nortriplyne 100mg ....
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Quaver View Drop Down
CPS Support
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I Donated to CPS 2013-2017

Joined: Nov/23/2010
Location: West London UK
Posts: 3367
Post Options Post Options   Thanks (0) Thanks(0)   Quote Quaver Quote  Post ReplyReply Direct Link To This Post Posted: Jun/11/2017 at 12:55pm
I am so sorry! You poor thing! I use Lyrica too, but I only take it in the morning. Do you have trouble sleeping? I take Amitriptyline at night. It's another pain reliever for nerve pain and I also find that it helps me to sleep. I am very sorry that your husband has passed away. You say you have two friends with whom to go out for dinner, so do you live alone?

Severe chronic pain in lower back. Lumbar Spinal Stenosis, Scoliosis, DDD. Hypermobility in ankles caused most problems. Bilateral trochanteric bursitis Osteoarthritis in spine, wrists and hands. Golfer's Elbow. L4-L5 L5-S1 spinal fusion plus cage support and titanium spacers April 2008. Nov 2010, accident in shower caused compression fracture of L2. Missed by A&E. Functional lumbar spine stenosis from herniated disc at L3/L4 July 2015 XLIF discectomy plus XL-TDR very successful! Miraculous improvement in mobility! Hashimoto's syndrome, Depression, High Blood pressure, Fibromyalgia, Raynaud's Syndrome.
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sara1 View Drop Down
Senior Member
Senior Member

Joined: May/19/2010
Location: GTA
Posts: 5059
Post Options Post Options   Thanks (0) Thanks(0)   Quote sara1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun/13/2017 at 4:08pm
Hi Barb and Welcome. I only take 25 of Lyrica a day due to swelling side effects. I have left leg sciatica pain and am relieved every time I get RFA(nerve burn)radio frequency ablation to my L3-S1&S2. It kills the nerves but the nerves grow back and unfortunately have to go through the ablation every one or two years but it's really helped the numbness and constant tingling in the leg. 
Not sure if RFA would help but a Hospital Pain Center would be able to help.

Are you hooked up with a Anesthetist in a Pain Center? Take care. Sara
DDD of lumbar spine with sciatica to left leg and foot. all lumbar discs now herniated one central herniation with exiting nerve contact.Facet joint Hypertrophy RFA for pain relief
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