Arachnoid Cyst

[echo]

I have an arachnoid cyst at t4=t10 - looking for surgery advice - anything would be helpful since I don't know anyone who has had this disorder. What can I expect for recovery from a multiple level laminectomy (4)?

[diane]

Hi Echo,

I had surgery 6 years ago for an arachnoid cyst with an associated syrinx at T2-5. I had one full and 2 partial laminectomies. The cyst was removed, along with a lot of arachnoid adhesions.

My short term recovery went well - I only spent 2 nights in the hospital (not the 3-5 I had been expecting) and I was able to stop taking pain meds (other than ibuprofen) within about a week. I felt pretty good in about 3 weeks, although it probably took 3 months to feel well.

My major symptom, difficulty walking) improved substantially and I was able to do things again that I hadn't been able to do for many years, such as take long walks on the beach (with a cane, of course). I was also able to travel to Europe and walk around the cities there.

Unfortunately, due to the fact that my spinal cord was damaged from being compressed for so long, my symptoms began to return and now, 6 years later, I find myself almost (but not quite) in the condition I was in prior to my surgery.

I didn't have surgery until I was 56 years old as I was originally diagnosed with probable MS and kept having MRI's of my brain, which didn't show anything. By the time I was correctly diagnosed it was too late to have a great result. It was however, better than everyone expected - I was told the surgery would just stop me from getting worse.

I'm glad I had the surgery as it gave a few pretty good years which I really appreciated. My surgery was done at the University of Virginia Medical Center by Dr. Mark Shaffrey, the head of Neurosurgery. I was very happy with my experience there. Charlottesville's not that far from DC - I actually live in the DC area myself.

Good luck Echo! Don't hesitate to ask me any more questions that might occur to you - we thoracic arachnoid cyst people are pretty rare!

Diane

[Crissy]

HI Diane, Thank you for the quick response, I was so excited when I viewed this page again to see that you responded, now I don't feel so alone! I just found Dr. Shaffrey's name on some case studies I was researching and plan to get in touch with his office tomorrow so I am thrilled to hear that you had a favorable experience with him and the spine team. I have a surgeon (Dr. Caputy) at GW and neurologist that is consulting me who I really like but am not a big fan of the hospital itself. I also had a consult at Johns Hopkins but wasn't very happy with the surgeon there (can't remember his name) because he seemed a little pessimistic and uncaring.
Do you have a neurologist here in NOVA? I have had a terrible time finding one - I went to 4 others before I found Dr. Pottolichio at GW who was willing to help me find out why my leg wouldn't work, he also contemplated the MS diagnosis before finding the cyst on the Tspine MRI.
I am 48 years old and have been declining the last 2.5 years so I hope to stop the progression before there is too much permanent damage.
I would love to talk to you by phone if you are up to it - if so, let me know. Echo (Crissy)

[diane]

Hi Crissy,

You can leave me a personal message in the message section with your phone number and the best time for me to call. Alternatively you can give me your email and we can correspond that way.
I don't have a neurologist at this point - I don't really need one as I'm not in any pain and there's not really much that can be done in terms of managing my condition.

Now that you've been correctly diagnosed, there's really nothing a neurologist can do for you either. You have a physical condition that can only be corrected by surgery. If you have pain issues that aren't resolved by the surgery you will need a pain management specialist. I fortunately never had a real issue with pain - just some head aches, muscle spasms and funny sensations - nothing that bad.

I would certainly recommend getting a few opinions from a few different neurosurgeons. You're probably not going to feel that a top neurosurgeon's office is a warm, caring place - they are generally overwhelmed by the volume of patients requesting consultations. However, with your condition it's extremely important to go to a top neurosurgeon, at a top teaching hospital such as Johns Hopkins or UVA. You can't get too hung up on whether it feels impersonal.

Although my initial consultation at UVA wasn't very pleasant, once Dr. Shaffrey decide to take me on as a patient I found him to be a lovable bear of a man with a very generous spirit. I felt very safe in his hands.

Diane

[Guest]

Hi Diane. Sorry to hear that you have returned to your pre-op state. I was wondering if any imaging has been done to see if something has changed in your spine to cause your decline in function? Are your doctors concerned about this change? Is it likely to progress? Just trying to obtain insight into what we have to face. I know someone who did really well initially for several years after surgery but then declined. it was cord tethering that caused her issues.

[diane]

Hi Guest,
I wouldn't be surprised if I have some cord tethering as a result of scar tissue from the surgery, but in addition, I had long term cord compression prior to the surgery. I had some symptoms from the time I was in my early twenties, and major symptoms for 12 years before I was finally correctly diagnosed and had surgery. I also had a syrinx due to the cSf flow being blocked. My surgeon wasn't expecting me to do as well as I did initially.

I haven't had an MRI in a few years so I'm not entirely sure what's going on. I don't know if I would want to go through another surgery at this point so it's pretty academic.

Did your friend have surgery to correct the tethering?

Diane

Also-

Hi Crissy-

I just wanted to make sure you call the right Dr. Shaffrey at UVA.

There are 2 of them (they are actually brothers). You want to call Mark Shaffrey.

Diane

[Guest]

Hi Diane. She waited a couple of years before seeing her neurosurgeon. Unfortunately, her symptoms kept getting worse/obvious. When she finally went to see her doctor, and had surgery to correct the tethering, she did not have a great result. As we know, our preop state correlates to our postoperative recovery. I don't know if she waited too long or if the outcome would have been different if she addressed her issues sooner. I think its worth finding out whats going on even if you decide to do nothing. You can always get multiple opinions. i wish you the best!

[diane]

Thanks,Guest!
It's too bad the surgery didn't work out for your friend - I think that's generally the case with surgery for tethering that develops as a result of prior surgery. You also run the risk of developing arachnoiditis, which is a painful, progressive condition. That's one of the reasons I haven't pursued it. Although I would like to be able to walk better, at least I'm not in any pain.
I may however get an MRI anyway as it's been a few years since my last one.

[echo]

Hi Diane, a few questions - did the surgeon try to take out ALL of the cyst or just the section that was compressing your spinal cord? One NIH study shows that surgery is just as successful removing only the part near the stem that is causing compression and closing the stem as opposed to the entire cyst. Have you heard anything about this approach?
and
Did he find the stem (hole in the dura)? and if so, how did he seal it?
and
Did you have a mylegram cat scan before surgery? and if so, did you have it with Dr. Shaffrey or previous to seeing him?

the more I learn the more questions I have...
Thanks, Crissy

[diane]

Hi Crissy,Yes, I had the entire cyst removed. My cyst was intradural so the dura had to be opened in order to get to it. It was also stuck to the cord so it had to be peeled off. I also had arachnoid adhesions which were interfering with the flow of CSF (spinal fluid)so they needed to be removed. The cord was quite compressed from T2-T5, and a syrinx had formed as a result.
The "stem" approach you're describing I believe would only be used for an extradural cyst (I could be wrong, but I think only an extradural cyst would have a stem). Is your cyst intradural or extradural?
I did have a CT mylegram, ordered by Dr. Shaffrey, The dura was glued back together (standard procedure).
Learn as much as you can - after a while you'll be fluent in "neuro-speak"! - Diane