Badges (2)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (92)

6 days ago · Possible S3 nerve damage in Spine Health

I would highly suggest to all of your doctors and PT's to check for Tarlov cysts also called perineural cysts. Most doctors refuse to acknowledge them because they are normally just an incidental finding and are rarely symptomatic. Come to find out there are lots of people that have symptomatic cysts. I would be willing to bet that a large number of "chronic pain" patients are undiagnosed with these cysts. Also, request copies of all your MRI reports to see if they were ever mentioned. If you have an MRI coming up soon be sure to tell the MRI tech. that you want all incidental findings included in the report as some radiologists don't even document these cysts. I spent 16 years with issues after falling in my kitchen and then in 2018 the symptoms started snowballing. I am currently pretty much bedridden. My insurance co. is denying my surgery so I'm in the middle of arguing that out. I live in WI but recently went to see Dr. Feigenbaum in Dallas, TX. There are only a handful of doctors in the U.S. that specialize in these cysts. You are welcome to read my other posts. I think you will find that the symptoms you are having sound all too familiar. Also, check out the Tarlov Cyst Foundation. There you will find the best initial overview. Good luck to you & take care!

Fri, Oct 4 8:00pm · TARLOV CYST in Chronic Pain

@joken
I have multiple Tarlov cysts as stated a few posts ago, and because they were ignored by doctors for so many years I have a multitude of other symptoms. I have bladder issues, bowel issues, peripheral neuropathy, low pressure headache, currently being tested for arachnoiditis, legs going numb, , nerve pain spreading, etc. I have finally found a team of doctors that support me. One of them believes that the nerve damage that is being caused in the lower region is starting to effect the rest of my nervous system and/or that it's overloaded causing issues in other areas. I now have nerve pain, tingling, cold feeling, burning hot patches, going down my arms too. My right arm is ending up with what looks like scratches or even stretch marks that last between 1 week and a couple months before going away. 2 of my doctors looked at it and agree that it's petechiae and they found other tiny spots all over my arm. They are in the process of running a bunch of blood work. I'm just listing all this stuff because I would like to stress to anyone that has Tarlov cysts to push your doctors and continue to pursue one that is willing to learn about them and get you to the right doctor to treat them. If your doctor is not responding to your questions or ignoring the cysts, that means it's time for you to move on. I was shrugged off and called a chronic pain patient for many years and at times looked at like I was just looking for the opioids. It's a shame that they treat people that actually need the pain relief but it's more common than you think. I learned how the medical world works the hard way and now have a bunch of permanent nerve damage on top of what seems like a million other new symptoms. I am currently waiting decision on my second appeal with insurance. They are denying my surgery saying that it's exploratory and that there is not enough medical evidence. Actually, the surgery is not exploratory and there IS a LOT of medical evidence available. I made the trip to Dallas, TX to see Dr. Feigenbaum. I was in tears to just have them validate all of the symptoms I've been experiencing. Remember that YOU are your own best advocate. Don't take no for an answer and be involved in every aspect of your healthcare even if it has nothing to do with the cysts. Reach out to various individuals and organizations until you find help. Ask all the questions you want and demand an answers. Research the crap out of Tarlov cysts and the symptoms it causes. The more knowledgeable you are the better. It's a long hard road but you will find the help you need. Most importantly, don't give up. I wish you and anyone else with this condition the best!

Fri, Sep 27 3:55pm · I am desperate to find a dr who treats arachnoiditis. in Spine Health

She is currently treating me for Tarlov cysts (perineural cysts) and I'm in the process of being diagnosed with arachnoiditis. She specializes in various connective tissue disorders and many other conditions. As I said before, she has people from all over the U.S. to see her so that alone must mean something. Please go to her website that I included in the last message and check it out. It does a better job of explaining everything better than I can. If you call they would be happy to answer your questions. I can tell you that she takes wonderful care of her patients and thinks out of the box unlike so many other doctors. I'm sure you have had to jump from doctor to doctor because nobody wants to acknowledge arachnoiditis. She is the doctor that gets stuff done. She gets right on the phone with the radiologists, other doctors if needed, etc. There is no wasting your time going to a ton of appointments that do nothing for you and spending thousands of dollars for nothing. Trust me, I've done it for many years. I'm having the best pain relief I've had in 16 years. She switched me from the fentanyl patches to Oxytocin and Ketamine troches. They work together and dissolve under your tongue. I was afraid to get rid of the fentanyl patches because that had always been my best pain relief. I can say the new medication combo provides more pain relief and is an alternative to the opioids.

Thu, Sep 26 4:17pm · I am desperate to find a dr who treats arachnoiditis. in Spine Health

I don't know where Lake County is but here is my doctor's contact info. She has people fly in from all over the U.S.

Linda Bluestein, MD
WI Integrative Pain Specialists
4203 Schofield Avenue, Suite 2
Weston, WI 54476
Phone: (715) 600-1722

https://www.wisconsinintegrativepainspecialists.org/

Tue, Aug 6 3:31pm · Pain in the butt - Can't sit down in Chronic Pain

@ecalderman

Your situation sounds very much like mine. You probably don't have the same thing but it would be worth asking your doctor about. I can't sit on my right butt cheek and it's quickly spreading into my left side. It comes up from the bottom of both butt cheeks. I was told that it's part of the pudendal (sp?) nerve. Is that what you're experiencing? Have you ever had a pudendal nerve block? My diagnosis is Tarlov cysts (perinerual cysts). They come out of the spinal cord and are innervated so they cannot be removed. There is a surgery available for them though. They drain the CSF out of them and fill them with another substance. There are only a few doctors in the U.S. that specialize in these.

Tarlov cysts are considered an incidental finding on MRIs, CTs, etc. The radiologist may or may not even document them. It has taken me 16 years to find a doctor that questioned what was seen on my MRI. The cysts were present back in 2003 after my accident. I've found that most doctors won't even acknowledge them and say they don't cause any issues. When they grow bigger they DO cause issues. Most times they are in the sacral area and push on the nerves at the end of the spinal cord and cause cauda equina syndrome.Do you have any of the cauda equina symptoms? It would be a really good idea to request all of your images on discs and the reports that go with them. From now on when you go in for any kind of imaging ask for a disk and that a copy of the report be mailed to you. They will give you a disc before you leave. Read through all of your reports and ask about the things you aren't familiar with. Also, I've found that talking to the tech. that asks you all the questions before your scan helps. Tell them you want all incidental findings documented because they haven't been able to pinpoint exactly what is causing your issue. That's what I had to do anyway.

I hope you find out what the problem is. I absolutely understand the agony that comes with not being able to sit! Best of luck to you:)

Thu, Jul 18 4:16pm · Living with Neuropathy - Welcome to the group in Neuropathy

@feeties
So happy for you that you found something that helps with the pain! May I ask what brand of CBD you're taking. Does it contain THC? I'm from Wisconsin and THC is still illegal. There are so many different brands I've looked at online. I just get confused and frustrated and give up. I don't know which brands are the best.

Fri, Jun 14 8:33pm · Living with Neuropathy - Welcome to the group in Neuropathy

@cocodab

You are not alone! There are many helpful people on here so you're in the right place! Sometimes it just feels good to chat with someone that is going through the same things you are. Here is my advice to you.

Your team of doctors will probably need to include a PCP that supports your issues and strives to find treatment for you, a pain management doctor, a neurologist, and a physical therapist. Integrative/holistic providers will do a world of wonders for you as well. You may also want to consider a mental health provider if your symptoms are causing depression or anxiety. Find a good physical therapist that is up to date on new procedures, and continues to take classes to learn more. The right one will help with the neuropathy & muscle pain. Also, maybe it's just time to look for a new doctor. Research them online and read their reviews. In my area I've found that the good ones are booked out a couple months but probably worth the wait. I'm currently looking for a neurologist. Ask all questions you have and don't settle for a doctor that ignores your concerns! You are your own best advocate! The more research you do, the more questions you ask, the more answers you'll get. Hang in there & take care!

Fri, Jun 14 8:11pm · Living with Neuropathy - Welcome to the group in Neuropathy

@mictim

I absolutely agree with your view on natural vs synthetic and supporting big pharma. There are several shows on Netflix that everyone in the world really need watch. These include What The Health, Forks Over Knives, Cowspiracy, and a couple others (can't think of the titles right now but will look for them if anyone is interested) that shows how the healthcare system and big pharma work together all for the sake of the American dollar (not so much for helping patients). If everyone was more educated in these areas lives would change and disease and death tolls would plummet just to name a couple of the many changes we would see.

I am fairly new to the integrative/holistic approach as I found an integrative pain specialist that has her own personal experience with the Tarlov cysts that I have. I'm learning and slowly switching over as we find things that are helping me.