Skip to content
My WebMD Sign In, Sign Up
Includes Expert Content
Question for Doctors or Someone With Experience
avatar
An_244907 posted:
I'm looking for some general answers to specific questions regarding the surgery and best-case recovery time after removal of a spinal arachnoid cyst. My new neurosurgeon hasn't been very forthcoming with answers and my last Dr said I was possibly looking at 6 mths of rehab, etc., so I left the hospital without the surgery! My new Dr said it's a pain in the butt bcuz "it's on the inside of the spine" - whatever that means. It's from T9 to L3. I'm going to have to make a decision soon -- the headaches are debilitating. I'm having incontinence issues. Seizures are escalating. There's a constant feeling of electricity in my mouth which makes me clench and grind - btwn this "electricity" & the seizures, I've busted 5 teeth recently & don't have dental insurance! There's an enhanced version of that electrical feeling in my left leg, making it very painful. If the symptoms weren't progressing, I wouldn't even consider the surgery, but they are. I simply need a best-case guideline as to the recovery time I'm facing as I'm a single mother with no care resources for my 8yo son. I appreciate input from ANYONE that knows anything about this surgery and the recovery time invested!
Reply
 
avatar
bj1208 responded:
hi and welcome to the support group -


I don't have experience with this but do have a website for you to review since yours is around the spinal cord -


http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm
~~and~~
http://www.ccjm.org/content/75/4/311.long


this should get you going on reviewing what is involved in the surgery etc.,


I'm sorry but am having problems researching the recovery time frame you wanted - and as you realize everyone is different and healing times can vary because of this.


since your present surgeon could not answer your questions I would suggest that you seek other opinions from both Orthopedic Spine Specialist and Neurosurgeon Spine Specialist - remember, we employ doctors and have the right to seek 2nd and/or 3rd opinions.


I do have to admit that my surgery was performed by a Neurosurgeon Spine Specialist and his bedside manners were horrible - I went in with about 50 questions (Anterior Lumbar Fusion L5-S1) and he just sat there. I tapped my notebook waiting for answers and if the answer was not good enough I made him elaborate on why. Believe me I left there with a better understanding of the surgery and was glad that I had him do the surgery as he did come highly recommended - My surgery was a success as he did remove my disc, put a plate, 4 screws and a cage in. I fused and healed but with all surgeries there are no guarantees especially when it comes to pain and/or nerve damage in leg(s) and/or arm(s). and that's where my main problems are - I have chronic low back pain and nerve damage in both legs that could not be corrected or lessened -


After reading these websites (you can google: spinal arachnoid cyst) and other sites too as there are too many to list here - you should start writing down questions. One good question would be HOW are they going to remove the cyst, or are they just going to drain it - there are so many questions to learn from these sites.


Depending on how it's going to be dealt with will depend on how long your recovery will be. If it's going to be removed, and as you have such a large area, I would surmise that recovery time could be a year or longer - or if you are a fast healer it could be less time - but the rehab could take that long.


You could take your questions back to your surgeon and demand that these be answered before you consider having surgery.


Also, I would line up some care for when you are home recovering - I understand you are a single mother of a young son and there should be some places to help - your insurance may provide a home health care, or if you have a church you belong to you can post a bulletin - there are always people there to help in need of times like this.


also, since you busted your teeth having a seizure, I would check with your medical insurance and see if this could be covered under the medical - you never know - and speak with a supervisor (not someone that answers the phone).


I hope and pray you can get the answers you need and the treatments. please keep us posted - take care - Joy
 
avatar
Rafael Levin, MD, MSc responded:
Sounds like your Arachnoid cyst is fairly extensive, symptomatic, and progressive. Based on the symptoms you have been described, I am assuming the cyst is exerting appreciable pressure on your thoracic spinal cord which is why two neurosurgeons have recommended you should undergo the surgery. As for your specific question, although the information at my disposal is rather limited, given the 6 level span of the cyst (crossing the thoraco lumbar junction) I would give myself at least 12 weeks to recover. More than anything else, it sounds like you need to have a thorough pre-operative consultation with your surgeon to review your planned procedure, risks, post operative recovery, etc, so you have the most realistic expectations. I wish you all the best.
 
avatar
desertrabbit responded:
Hello

Sorry you are currently going through this situation. I had this for about 13 years and nobody could tell what this was. I had always had pain below the rib area as if I had run a marathon. I had this checked out with x-ray, sonagrams. Finally one day at work the pain was unbearable and I felt like throwing up. I went to the hospital where while waiting for the doctor I started getting spasms super bad below the rib area, I had these two times before (kinda of like a fish out of water thrashing) I was admitted and stayed for 5 days undergoing a battery of tests. Finally a neurologist came in and asked to walk for him--I did, and he told me "Do you know you are limping". I told him I didn't know this, this explains why sometimes I would trip for no reason. He told me they found a cyst in my spinal cord and needed to keep checking on this. The cyst was causing spinal cord compression and hurt like the devil. This explains all the symptoms like painful headaches, vision, painful joints, troubling walking, TMJ, back pain and a growing numbess from the knees down. I was relieved to have finally know what this was. He came in and said I would need surgery or I would continue with the paralysis. The surgery was to remove the cyst wall on the spine. He told me there could be complications--I did have some, during surgery they could not stop the bleeding but eventually did and afterwards I had a shunt put in for about 12 hours. I went home in 3 days--this is painful. I didn't know it at the time but I started bleeding internally again and couldn't stand up--I called my doctor and as explained to him my symptoms he urged me to meet him at the hospital for surgery. They removed a hematoma (blood clot) that was compressing my spinal cord. Later I started having "clonic" seizures not brain ones but body movements and prescribed meds for these they have not returned again. I still get very bad spasms in my back and take medication for this too. I was on so---many pain meds but have since cut down to one only. I will not lie this is very painful. I had to go back to ER countless times for pain IV's once this started I could not control the pain with meds I had at home. I eventually started going to swim therapy just to walk in the water, and this helped alot. I am now into Tai Chi which helps my back and balance. Please make sure your doctor explains everything about surgery because every surgery has complications, I just happened to be one of these cases. Ask him about rehab, how many surgeries has he done like this, he will tell you about the complications, ask about these, how he expects you will be doing in six months. Do alot of research you have to be your own advocate. The complication I had with the hematoma was that I now am attached from my spinal cord and muscles to the outside dura caused by my body healing this way, which is a spinal cord cord injury. I wish you relief and hope. This is about my personal surgery, everyone is different, please-- consult extensively with your specialist. Keep in touch and take care.

Betty


Helpful Tips

Steps For Getting Back Pain Diagnosed And Treated
Many people come to this WebMD Back Pain Community looking for help in getting a diagnosis of a cause and relief from their back pain. Most ... More
Was this Helpful?
217 of 334 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Spine Center