I pray everyone is as well as can be..I believe I have reached a dead end for now as far as my styloid compression is concerned. I had a telehealth appointment with Dr.P in January and he looked at my scans and didn’t see much of an issue. My original IR who ordered scans talked with a colleague at another facility in Massachusetts, at the Lahey Clinic who felt that my symptoms could be contributed to CSF hypotension. I had a full spine, MRI without contrast ( I refused the contrast) and the imaging revealed I have many nerve root cysts on every level of my spine on either side. I couldn’t believe my eyes , when I saw the imaging after the MRI and met with the IR who was very helpful. He believes they could be a source of CSF leak even though I don’t have bad headaches and recommended I have a CT Myelogram on my spine. I would have this done twice, one on each side. I’m very apprehensive about this but I believe I should investigate further and have had suspicious about a leak for a couple years now.I have been having a lot of thoracic pain/ pinching feelings in my back and feeling unwell at times. It seems every time I get new imaging, there is something more going on with my spine. I also had a consultation with a spine Dr, through my insurance company ,who gives you free consultations. He recommended a disc replacement at c5/6 and thought the IR at Lahey was very thorough and on the right path.I had an appointment at the Mayo Clinic in AZ for today but they called me on Friday and said they made a mistake and the provider wasn’t with them anymore and wanted to reschedule it for Feb 29, but I have my CT Myelograms that week. We have a highschool and middle school kids at home and need to plan to have someone here, that’s why I planned to go on their February vacation week. I will call them back and talk with my spouse if I still want to pursue, Mayo. Right now my focus is on my spine , loaded with Tarvlov cysts. I’m having a lot of symptoms. I go to a pain management practice and luckily can access opioids. This is all just so overwhelming. I’m praying they see something on the CT Myelograms. It’s an invasive procedure and has its own set of risks. I’m a bit scared. I have them on February 26, and March 1st. This IR trained at Johns Hopkins, I believe .He understands that these cysts can leak. I have been trying to do my research on all of this. The imaging also revealed I have an impinged nerve in my lower lumbar/ sacral area. I was wondering why I was getting odd cold water sensation in that left foot. My spine is a mess. Love to you all 
I’m so sorry that you have so much going on with your spine; it sounds complicated and does seem as if this is more of a priority than your styloids…I’ll pray that the myelograms go well and show the issues clearly. Sending you a hug 
I’m sure you are exhausted and discouraged. I’m so very sorry. I do not know about these cysts and will have a look. I have had a spinal fusion at C6/C7 and for me it was a much easier surgery than the styloidectomy as an FYI if you should need the fusion. For many a fusion can be a God send. Good that you have access to pain relief and will hope with you that more permanent relief/solutions can be found.
The spine Dr said a disc replacement would be a better option versus a fusion because of my age and the just replacing the disc gives you better ROM and quicker recovery.
Oh yes, for sure! Wasn’t available when I did mine ))
@Sunflower50 - I’ve had you on my mind for awhile & am so glad you updated us. I’m also very sorry to hear about your new information but it must be a relief to know there is something significant going on in your spine that is causing at least some of the symptoms you have. I will also pray that the myelograms will show more good information & that you will be safe & have no problems from them. 
Thank you…it’s tough having to go through so many tests and this procedure does require your dura to be punctured, so I’m a bit nervous. I have to have this done twice, a few days apart. They want to see if the contrast is leaking through these nerve root cysts, which would indicate a CSF leak, since the
cysts are filled with CSF fluid. I’m not sure what they would do if a leak is found…Obviously, they can’t remove the cysts since your spinal nerves are present but they perform a procedure to stop the leaking or a blood patch, IDK. Having them done on the 26th and March 1st. Keep me in your prayers.
I put your myelogram dates on my calendar so I can pray for you especially on those days. 
Just checking in on you. How did everything go on the 26th and the 1st? Hope you’re home resting and have some more answers.
Heather
Hi Heather…My CT myelogram on Feb 26th was cancelled due to a staffing issue but did have my first one on March 1st…I will have the second one on March 22…the IR didn’t see anything obvious but said he would be looking at the images through his more sensitive computer imaging programs. No contrast detected in the renal system. The drug they give you made me very loopy and dizzy. I’m still recovering but no headache just feel a bit off. I was going to update but our family is dealing with a tragic situation. After the procedure, we came home and found that my stepson committed suicide in his bedroom, I’m relieved my daughter didn’t find him, for she was home sick from school. We are in shock. I have no words.Please pray for my husband and my family. Thank you.
Oh no Sunflower, I am so sorry for your family’s loss, beyond heartbreaking…praying for you and your family
@Sunflower50 - I’m also at a loss for words. I am so sorry for the choice your stepson made & agree that it’s by the grace of God that your daughter didn’t find him. I cannot imagine the depths of your grief & how agonizing the pain & shock is for all of you.
How tragic this is & compounded by your recent health discoveries. I’m glad the IR is investigating your myelogram on a more sensitive computer and will be praying he will see anything that isn’t as it should be. I’ve added the new date for the second one onto my calendar so I can pray for you that day, too.
I will be lifting you & your family up in prayer as you deal with the aftermath of your stepson’s death.
What an unspeakable tragedy you all have suffered. I’m so very sorry. From my limited experience and understanding, the pain one is in when choosing this path is hard to understand and those left behind suffer so.
Holding you and your family in the light, as the Quakers say.
@Sunflower50 - I too suffer from Tarlov cyst as well as Eagle Syndrome and have thought so many times how is it that I have two rare conditions! These cyst are extremely painful but for my case still is no match to what Eagle syndrome did and has done to me. I’m so very sorry for all your going through and it’s clear how strong you are by reading your post. I’m sure you are aware but wanted to be sure you knew that there is also a wonderful Facebook group for Tarlov cyst.
@Sunflower50 I’ve been reading your story. I don’t have much to offer as far as the medical issues except to let you know you’re being heard and hoping for the very best outcomes. I’m so sorry about your stepson, I pray for your husband, you and your family to be mightily strengthened during this unfathomable time you’ve endured. 
I’m back and still dealing with many symptoms, especially extreme fatigue. I had my second Myelogram on March 22. After the IR reviewed all my imaging he offered me an empiric embolization of a complex Cyst he saw on my right side. He didn’t guarantee that it would help my symptoms. Made the appointment for the procedure and pre procedure blood work. He then called me, and said he reviewed both my Myelograms ran it through computer imaging and had colleagues look at them too. He said they didn’t see anything that would warrant a procedure. I was a bit disappointed but just done pursuing this issue right now. After continuing to hear others stories and symptoms my gut still comes back to ES. When I had my CTA/ CTV I have mild compression bilaterally by the styloids and it said C1 mass…what is that exactly? No one explained that to me. Is the C1 and issue? Pressing into a vein? I’m thinking a styloid removal and C1 shave, IDK. I’m really thinking this is my problem all along, even though these cysts make my back ache and I’m miserable. I called Dr Constantino and I’m sending them my discs for a telehealth second opinion. I have many symptoms. I feel I can be upright more but I’m so fatigued, usually with so many other symptoms. Those Myelograms wiped me out but I’m actually feeling a bit better head wise, like feeling I can be upright more but bedridden for the most part. My husband has to do most of the shopping and cooking, cleaning besides working a full time job, luckily at home. I just want to get to the bottom of my symptoms and feel better. I had a surgical recommendation for a disc replacement at c5/6 . It’s hard to know where my symptoms are coming from because I have multiple health issues but my gut is coming back to my IJV / C1 compression? My telehealth is May 6 with Constantino. It’s been a tough month for our family after my stepsons suicide but we are staying strong as a family, as well as can be. Wishing you all love and good health. I missed you all. I’m struggling and have been very depressed over my health but trying to give it to God. I basically was in a mental hole this past month or so. I found a telehealth neurology practice I’m paying out of pocket for to see if they can help sort out my issues. The healthcare system here Maine, sucks and haven’t had luck with neurologists here. I feel so overwhelmed between my Tarlov Cysts disease, my neck issues. I’m going to send my full spine MRI to a Tarlov specialist too. I have so many issues 
need prayers please.
@Sunflower50 I’m so sorry you’re going through this. Please know that I’m praying for you to have the strength, knowledge and guidance needed to persevere and overcome your challenges, obstacles and Pain. Pain is NOT normal. So don’t give up and don’t give in! Keep searching, talking, pushing for answers. Tell them what you think, don’t be afraid because it’s Your Life and Your Health Matters!!! As does your family, they need you to be strong for them! Please continue to tell your story as it does help!! You, myself and others! It’s been over 20 years for me. I get down and depressed at times but I pick myself up and keep going saying to myself I won’t let them win this battle!! It’s been too long to just throw in the towel. I have a husband and 2 little furry babies that need me and most of all I want to live to be old with no pain!! 
I also pray deeply for you to find the doctor that knows the cause and how to cure it, soon.
I’m sorry that you couldn’t get the cyst sorted, and that you’re still feeling so rough, what an awful time for you & your family…
It does sound from your report as if there’s compression of the IJV between the styloids and the C1 processes, so getting an appt with Dr Costantino is a good move, he can do a C1 shave if that’s needed as well… and good that you’ve been able to send your scan to another neurologist & a Tarlov specialist, will pray that all these doctors can help you
Hi @Sunflower50 - Thank you for your update. I’m also sorry that the situation w/ the possible cyst was confusing but I’m glad that your surgeon had a second look at your scans & got other opinions so he didn’t do an unnecessary surgery.
Regarding the C-1 mass - that’s the transverse process of C-1 i.e. the thicker area at each end of the C-1 vertebra. It is the part of C-1 that can cause compression of the IJV. It often works together w/ the styloid process to cause compression but not always.
I’m really glad to hear your stepson’s suicide has helped your family draw together & support each other through that terrible ordeal. That along with your constant pain would definitely be sources of depression.
I’m glad your appt w/ Dr. Costantino is coming up fairly soon. I also agree that he is a good choice for your ES consult, & I hope he’s able & willing to help you.
God is compassionate and loves you. He won’t ever abandon you. I will be praying for you, too!