Arachnoid cyst/arachnoiditis
Posted , 5 users are following.
Hi, I want to know if there's anyone out there that's has the same symptoms.
I had a l4/5 fussion with 2 titanium plates and 4 screws and artificial bone 14 years ago, from the onset of surgery I suffered chronic thoracic back pain right in the middle of my shoulder blades, after 7 years of pain I finally had a scan which showed a mass so the surgeon said to find out exactly what it is he would need to take 2 inches of bone from my spine & cut through deltoid muscle just to explore, obviously I declined and had a follow up scan a year later, still in a lot of pain I asked for a second opinion and he was happy to do that.
So then I get a letter that I don't think was intended for me and it read "I would like you to take a look at this lady as I think she has a thoracic arachnoid cyst with compression of the spinal cord"
Now he told me it was more than likely a spinal adhesion and arachnoid cyst was never mentioned until I received this letter, then I never heard anything for months so I rang and was told they where having a meeting about me now and would hear in the next 2 weeks, but then I got a letter saying he would not see me. I was taken back by this but then realised the surgeon he referred me to was the surgeon who done my fussion 8-9 years earlier🤔.
Anyway it's now 14 years and I suffer with chronic muscle spasms surrounding the area where the cyst is, I have arm weakness and my left leg is numb with horrible sensations of all kinds running up and down it, I struggle to walk because of lumbar pain but also this has now travelled to my neck causing spasms and limited movement, this has been slowly progressing over the past 14 years and I'm just fed up now, I was diagnose 3 years ago with thoracic arachnoid cyst at t3/4/5 with compression of spinal cord t2/3/4/5/6
I want to know could this be arachnoiditis?
0 likes, 6 replies
jessica_78456 Carolineq8
Posted
melm1972 jessica_78456
Posted
Carolineq8 melm1972
Posted
Iv had lumbar amd sacrialic bilateral joint injections x10 every 4 months now for about 5 years, iv been on all the opioids, went through withdrawal twice, the only time I had pain relief was on fentalyn but I started to overdose( my body couldn't tolerate it) I take diazapam for muscle spasm but use them very sparenly and gabapentin for nerve pain and Celebrex which helps with back stiffness in the morning, I struggle with walking because of lower back pain and the nerve damage and weakness in my leg which has been constant for 4 years I'm not sure if it's down to the injections or the pressure on my spine due to the cyst.
Iv also just had MRI with rheumy as the suspected AS but all came back clear which takes me back to wandering if it's arachnoiditis but surely it would have shown up on an MRI as I have them annually to keep an eye on the cysts growth.
Oh and Iv been to London to see someone but he barely looked at me and didn't have my scans when I got there, he said i was born with the cyst and the pains I have are not related, it seems everyone has something different to say. I know my own body and I never suffered any of this before my opp, I was disgusted at the time money and effort we put into going to see this surgeon.
I have my medical files and think I will find someone to read them, thank you
Carolineq8 melm1972
Posted
For 7 years I was told the pain in my thoracic spine was down to my lumbar being fussed and it having to carry more weight, so being young and nieve I put up with it, I was also told that it would take time but I would get better, after 7 years and almost going crazy with the pain I asked for an MRI, this showed up a mass that without investigative surgery they couldn't say what it was, I refused so they monitored me yearly to keep an eye on it changing, itwasnt until I asked for a second opinion that I was referred back to the doc that done my fussion, in the letter thoracic arachnoid cyst was mentioned but no one had said anything prior to this letter which I also got a copy of but don't think i was supposed to, but he refused to see me, Iv seen 3 more surgeons since then and they all say something different, I had to ask one neuro how big the cyst was twice but totally ignored me then when I asked again he said "why do you need to know, it's not important" Iv currently suffering with a muscle spasms right next to the cyst area that feels like it's under my shoulder blade with nerve pain going up through my head, side of face and down my arm for over 3 months solid, I actually think I'm going to end up crazy from it, thank you 😊
hippiechick1122 Carolineq8
Posted
Hi Caroline: I had an auto accident 15 years ago. And 02 I had three cervical disc fused titanium plates screws the whole bit. And 08 I had L45/S1 Done same thing. My cervical surgery was wonderful and A great success. Not so on the lumbar. Since 08 I have had by far the worst back pain than I ever did before. I also have pain in my thoracic area I think it's T23? Not sure. It's in the shoulder blades in the bra strap area. Feels like you're back is broken sometimes. I too have been diagnosed with an arachnoid cyst, however mine is near my brain stem in my head. I need to get a new MRI done on it to see if it's grown or it could have been there for years I don't know. Is it possible the pain in your third Resik has come from the fusion of your lumbar? I know sometimes the disc above and below the ones you have surgery on will give you problems. I feel like you need to get another opinion and maybe contact AMA about the doctors you spoke about. They do all stick together. He very seldom will hear one badmouth or even egg knowledge another's less than perfect work. I'm considering the spinal Institute has anyone ever heard good or bad about it? I feel like you do and that no one ever correctly diagnosis our problems before they start cutting on us. Some test will show certain things other test show other things it seems as though you get one test done and they say oh well we can't find anything wrong. Perhaps they're not performing the right test. I will keep you in my prayers.
Carolineq8 hippiechick1122
Posted
Hi and thank you for taking the time to reply, so sorry your suffering to it's just awful, I'm having g an awful flare at the moment and I'm really struggling with daily life in general, it's so mentally and physically exhausting and im trying not to break down all the time in front of my family, I do feel like I'm ready to break.
I hope you get some answeres to your pain soon, take care 😊