After meeting with the neurosurgeon July 9th, and being told the mass found on my MRI was likely a cancerous tumor but not to worry until he met with the radiologist and they had a better look at my scans. I finally heard from the neurosurgeon last week and he said... after his meeting with the radiologist they are both 99% sure there is no tumor and it is a cyst. His recommendation is to perform a Micro Vascular Decompression surgery to relieve the pressed nerve. He has a 80-85% success rate, which means pain and med free. Unable to tell if the cyst or an artery is pressing on the nerve at this time, the only way to find out is to open up a small area of the brain behind my left ear and go in and have a look. While there if the cyst is not the problem he will remove it if possible and biopsy it to make sure it is not cancer. I see him in his office October 6th and at that time we will have a surgery date scheduled, he is thinking before Christmas (fingers crossed). My meds are increasing hoping to help with the pain and I am on morphine to control the pain from the sudden attacks. So.... the sooner the better, ready to get off the meds. Currently I am taking 2400mg a day of tegretol and morphine as needed and still in lots of pain. Will keep everyone updated when I have a surgery date.
Thank you to everyone for all the support and kind words through all of this. This is the greatest site.
I am very happy that you have recieved a diagnosis and treatment plan. Hang in and keep me posted on your sx outcome. I will be seeing a neurosurgeon in nov and I am also hoping for dx and treatment plan…regards maureen
Shelly, Sorry to hear about your cyst and hoping everything worked for you.
I have a cyst back there as well and have known of mine since 2006. My neurologist has treated me with neurontin when pain flairs and has stated if it becomes too great he has advised gamma knife BEFORE surgery. He believes surgery is the last resort. I did get a second opinion from Northwestern Memorial and they did recommend surgery if my pain escalates. BTW, it would be an extraction of the cyst and not a MVD. Good luck and GOD Bless.
Hi Jerry, I am sorry to hear what you have been going through. Since my last visit with the neurosurgeon and another MRI it shows that MVD is not an option for me as the wrapped blood vessel around the nerve and the cyst lay to far apart. So he has recommended that I have Radio Frequency and have the lower nerve killed. The risks of having surgery to remove the cyst and also the blood vessel just have to many risks that I am not willing to take at this time. We are going to do Radio Frequency first and then surgery is always an option but I want to keep it as my last option. I am having this procedure Jan. 4th 2011. All fingers crossed this the answer. The last month as been pure hell as far as pain wise. Ontop of my daily meds I have been having pain shots at the hospital of 40mg of Morphine which pretty much does me in for the day. I am having them about every 4 days ontop of pain control meds daily at home. I will be glad when this is over.
Wishing you all the best
Jerry Parker said:
Shelly, Sorry to hear about your cyst and hoping everything worked for you.
I have a cyst back there as well and have known of mine since 2006. My neurologist has treated me with neurontin when pain flairs and has stated if it becomes too great he has advised gamma knife BEFORE surgery. He believes surgery is the last resort. I did get a second opinion from Northwestern Memorial and they did recommend surgery if my pain escalates. BTW, it would be an extraction of the cyst and not a MVD. Good luck and GOD Bless.
It sounds like you have been through allot. You will be up for surgery soon, and I pray for a positive outcome. Since this is such a huge decision, I would recommend a second opinion even again, even if it delays your surgery. These are not small decisions.
If you have made up your mind on this, I wish you all the best, as your pain sounds so unrelenting. I understand the unrelenting part really personally, and I land in the ER often for shots as well. I am so sorry that you are suffering. I SO wish that this condition wouldn't torture people so much - NO ONE desreves to suffer like this.
I just wanted to express my happiness that you have found some "answers" to your problem. Any answers are progress. Because as Lily said above, "no one deserves to suffer like this". It's true. As for me, I await the results of my MRI to be explained to me on 1/4/11. I don't know what I will feel if they do not find the cause. Hopelessness? Relief? Or if they find a more ominous reason for my mostly unrelenting pain, will there be fear, or finally relief, just to know what is causing this life changing problem.
I hope that the answers that you are looking for await you, and that in the meantime, that your meds are keeping you as comfortable as possible.
Both of my MRI's came back normal; however, a severe compression was found during my MVD surgery. I have now been shock free for 6 weeks since waking up from my surgery. The MRI is used mainly to rule out MS, tumors, etc. A large percentage of people have MRI's that come out normal, but a compression is found during MVD surgery. So don't become discouraged if the MRI is normal...mine was normal, but I still had a compression!
Well the latest update is… I am having Radio Frequency surgery done Jan. 4 2011 as the cyst is to far from where the blood vessel that is wrapped around me nevre is. Which means if they fix the blood vessel it will be for nothing as the cyst is also pressing on the TN. So for me the only option I have is to have fadio frequency done
You will be in my prayers on the 4th - you will be alright - I pray that all goes well and that your pain is releived. I am sorry to hear of the double-bind that you have between the artery and the cyst.
Thank you so much Lily.... I will keep everyone updated as soon as possible. Your prayers are greatly appreciated.
Hugs
Shelley
Lily said:
Dear Shelley,
You will be in my prayers on the 4th - you will be alright - I pray that all goes well and that your pain is releived. I am sorry to hear of the double-bind that you have between the artery and the cyst.
This forum has been more informative for me than any doctor or literature I have read has ever been. I really did need to know that MRI is not the final word as a diagnostic. I was previously under the impression that the MRI would tell them whether I was even a candidate for MVD. Since I am bilateral and atypical, I do not know that they will refer me for MVD. I would go through with it in a heartbeat! Shelley, I will remember to pray for you as well on the 4th, as it is also the day I find out my test results.
Stef… thank you so much, I will also be thinking about you and wishing you well with your results. Take someone with you to help get all the information. It is very helpful to have that extra ear. Also a second opinion is always a good choice also. We are all here for you anytime. I will keep you posted as soon as I am able after surgery
Stef said:
Thanks, Judy.
This forum has been more informative for me than any doctor or literature I have read has ever been. I really did need to know that MRI is not the final word as a diagnostic. I was previously under the impression that the MRI would tell them whether I was even a candidate for MVD. Since I am bilateral and atypical, I do not know that they will refer me for MVD. I would go through with it in a heartbeat! Shelley, I will remember to pray for you as well on the 4th, as it is also the day I find out my test results.