Sacral cyts or tarlov cysts or meningoceles

Today I was diagnosed with sacral cyts. Tarlov or meningoceles cysts. I have several back problems,too. They are bulging discs. I was wondering if anyone else has this problem with the addition of CMT? From reading,this is classified as a rare disorder mainly found in women. I have several of these at the base of the spine. They are filled with spinal fluid and nerve root endings. They cause severe back pain,urinary problems and fecal incontinence and constipation . My orthopedic surgeon will not operate on me as it is a risk. He is sending me to a neurological surgeon to see what if anything can be done. I have some of these symptoms along with abdominal pain and muscle cramping. I will let you know what the neuro surgeon decides. I guess having CMT wasn’t enough. Now I have this to add to my difficulties. The epidural block I had was of no value and caused two falls from my legs just giving way. It was as if I had no legs to stand on. Scary. I am use to falling from clumsiness,or a misstep,but not from this experience.please feel free to comment. I need feedback from anyone who has gone through this. Thank you. Karen

Karen,

I've not gone through this but I do understand the added stress to already having difficulties of CMT. I too have many secondary issues to cope with and learn about so I am very sorry to hear you've had more added to cope with! I wish I had some good input and knowledge of this but the only thing I know is to ask lots of questions and seek more than one opinion on any issue; and above all ,listen to your body feedback. As you are aware, CMT doesn't always response favorably to other treatments that might otherwise be considered minor. Good luck and hope you find answers to help relieve the pain and the stress to your situation!

~~CM

Thank you for your reply! I will be getting a second opinion from the neurosurgeon. It is just so tiring. I feel as if I am carrying around a weight from the waist down do to all the deficits. I still dance. Twenty five minutes,5-6 days a week. I also use hand weights. I feel I do the best I can.does it hurt? Yes,sometimes,but I hurt just sitting. Once again thank you for your reply! Karen

Karen;

I know what you mean. . .does it hurt? Yes, I too hurt sitting, and sometimes hurt standing more! But, doing what you can helps take the focus off pain, and more fullness to life! Putting more life in my years is far more important than years to my life! Quality not quantity! I love spending time with my family and use the phone to keep others encouraged and that helps me feel better b/c we all need to feel significant to others!

I have lots more limitations than I di when i was younger and before my symptoms went from mild to more severe. But, I also can put it in prospective when i visit with others who have for more difficulties than I, and yet they stay in a positive frame of mind! Oxytosin (one of our members here) posted a discussion sharing about his neighbor and it does encourage and inspire us to share more so we realize life isn't about what you can't do, but more about what you CAN BE to others.

Blessings and Hope for a good year to come!

~~~CM

Thank you for your encouragement.

Karen, there aren't too many doctors who are experienced with treating Tarlov cysts, but this one is: http://frankfeigenbaum.com/

Maybe you can get an opinion from him?

I went and read the info. and then I realized that I am being sent to their other office in Overland Park,KS. So,I guess I will be going to a doctor that knows about these cysts. I will let you know when they set up my appt. thank you for the information. Karen

Good, I'm so glad you are seeing someone knowledgeable. I hope your appointment is soon, Karen.

I do,too. I just want to know what he thinks. Once again I hate having another hereditary problem as I fear for my children and their children also. Roll of the dice I guess! Thank you for all of your support. It helps a lot. Karen



dancermom said:

Good, I'm so glad you are seeing someone knowledgeable. I hope your appointment is soon, Karen.

Karen,

Tarlov cysts are present in my lumbar spine as well. They are a result of SEVERE trauma.

There are very few neurologists who are willing or versed to do anything. Two are in the Baltimore/DC area. You can find them by googling the tarlov cyst foundation.

My latest MRIs show that there is no nerve involvement with mine yet, so they will not see me yet.

Let me know if I can help you further with this my heart goes out to you.

Hi Karen,

I'm off the iphone, and on the computer now, and will give you that link.

http://www.tarlovcystfoundation.org/home0.aspx

Here is the list of the highly specialized neurosurgeons who treat these. I think there are 7 in the entire world.

http://www.tarlovcystfoundation.org/find_a_doctor0.aspx

As I recall, you are now in KS? You are most fortunate that there is one there.

Kansas office:
Feigenbaum Neurosurgery P.A.
Saint Luke's South Hospital
Multi-Specialty Clinic
12330 Metcalf Ave, Suite 500B
Overland Park, KS 66213
Office Phone: To be added
Office Fax: To be added
General Hospital # 913-■■■■■■■■
Link to Hospital website for Directions -https://www.saintlukeshealthsystem.org/location/saint-lukes-south-hospital


SK said:

Hi Karen,

I'm off the iphone, and on the computer now, and will give you that link.

http://www.tarlovcystfoundation.org/home0.aspx

Here is the list of the highly specialized neurosurgeons who treat these. I think there are 7 in the entire world.

http://www.tarlovcystfoundation.org/find_a_doctor0.aspx

As I recall, you are now in KS? You are most fortunate that there is one there.

Kansas office:
Feigenbaum Neurosurgery P.A.
Saint Luke's South Hospital
Multi-Specialty Clinic
12330 Metcalf Ave, Suite 500B
Overland Park, KS 66213
Office Phone: To be added
Office Fax: To be added
General Hospital # 913-■■■■■■■■

Yes,I have spoken with his office. I was referred to him by a Dr. Clough. After all of this doctor to doctor stuff,Dr.feigenbaum does not take Medicaid. I guess the Kansas medical board does not recognize Tarlov Cysts as a problem. I understand that some are asymptomatic,but some cause real problems. So I am Stuck for now. Dr. Clough said he would operate on my worst disc,but not the cysts. I guess I should be use to this by now. I have had eight years of sciatica. I was hoping that this doctor could give me some hope of pain relief and possibly walking normally. Thank you for your concern! I guess just having CMT wasn’t enough! Lol

Absolutely unbelievable!

https://www.medpluspro.com/ethyl-chlorider-3-5-oz-spray.html?gclid=CLn8_ofZ2sMCFWRp7AodSXIAXA

This is probably the best kept secret for pain that there is. No pills to swallow, no invasive procedures, you just need someone to spray you. It;s to be applied like you would spray paint, not too much in one spot.

It's a script of course, but I'd insist on getting one to try it. It doesn't always take ALL of the pain away, but makes it more tolerable! I have such trouble riding in the car, and my Rheumatologist had his nurse spray me with this after a visit to him, I was more than elated to know it was available as a prescription. I don't ride in the car without it!

Hope this helps, Karen.