So I am post op four weeks today! I can say that I am feeling better and better, and few bad days, but for the most part I am starting to feel pretty good again...still have to take pain killers and muscle relaxers for my neck, which is where most of the left over pain is...so I am finally feeling happy about my recovery. I had an MRI a week ago to see if the syrinx in my back had gone down...and it has not...so the decompression has not work in helping with my syrinx. (It goes from c4-c7). When I went to get stitches removed, the doc said that if the syrinx had not gone down he wanted to get me into the operating room to get a shunt in as soon as possible. (Well I have had a hard time communicating with his office about surgery date and if that is still what he thinks...been a mess) I guess its easier to get it done sooner so he does not have to go through scar tissue later to put it in. SO this is the issue. I have a year left to get my bachelors...I am finally feeling like I can contribute to my family again. I am feeling better.... I know that the only think that can happen with the syrinx is that it can get worse. I just don't know if I am mentally prepared for them to ripping me open again and making me feel like crap again! I know that recovery will harder if I wait to get it in later, but I honestly don't know if I can go back to stage one again and go through recovery all over again! So should I wait finish school...take care of my family for a year and deal with it again next summer? (Summer is the only time I can get things like this done)....Or do I suck it up get it done, and skip a semster of school! Sometimes I REALLY hate this disorder!!!!!
Wondering if 4 weeks is not enough time to see if syrinx is resolving? Good luck to you in making this tough decision.
If my NS said that the syrinx isn't going to get any worse...I think I would wait a year finish my degree and deal with it next year, but I am pretty sure that isn't going to be the answer.... :( I got a call today from his office and said that he took the day off, but that they will let me know on Monday....too bad that was like the 5th call I have gotten like that this week. I am so sorry about your leak! That has been one of my fears and I am happy that I haven't had to go through it. Wish things would just be simple, and recovery was simple, wouldn't this be great if we could be outpatient?? Well wish me luck that I finally get some kind of progress on Monday!
Becki Bowling said:
I can't imagine what you are going through. I am 3 weeks post op & have a CSF leak. I am terrified it will not repair itself & that he will have to go back in. I even had a nightmare about it last night. Like you I am starting to feel a little more normal & don't want to be thrown back again. I had the same dilemna with even scheduling my decompression surgery. I have one quarter left to finish my bachelors but like you summer is really the only time I can take time like this off. I had to make the decision to put school on hold & take care of myself. It is such a hard decision to make. I agree 100% I hate this disorder too.
I am not sure, but the syrinx had filled completely back up after he had drained it during the surgery..and then there was absolutely no change at all...I think he expected it to do something at least. ....So I just have to make a decision soon (IF MY DOCTOR WOULD CALL ME) because school starts up next month...so I need to decide soon!
Joalexa said:
Wondering if 4 weeks is not enough time to see if syrinx is resolving? Good luck to you in making this tough decision.
I am not sure...what he would do with me, he had said something at my first visit with him, that he would not have it drain into my heart or stomach...but that he would shunt it so that it would go back into spinal...so it would be part of the csf flow???? does that sound familar to you at all?
Susan J said:
I have a VP shunt, but not for a syrinx. I developed a CSF leak and obstructive hydrocephelus. Did he talk about a VP shunt or LP shunt? The VP shunt didn't help in my situation for complicated reasons, but the surgery itself wasn't bad. I was in the ICU for one night and released home the next day. I was back to work part time in about 2 1/2 weeks. I had lifting restrictions and such, but on a whole it was so much easier than the decompression.
Praying that all works out.
Susan
I don't understand why at 4wks postop they expect the syrinx to disappear? Mine took 8mo after surgery before it was no longer detected on MRI. You're not even close to healing at 4wks. I would wait and get 2nd opinion.
I don’t know if he expected it to go away completely but maybe do something??? I dunno, just don’t want it to get worse.
My daughter has an extensive syrinx and the NS isn't checking on it until 9 months post surgery. I think some of the people on this site have earlier MRI's, most often 3 months, 6 months and then 9 months post op. From what I'm told, it takes a while for the body to adjust to the new CSF flow, and the syrinx can resolve over periods of many months to years. The NS told us that in the majority of cases, the syrinx gets smaller and may not go completely away (which is ok). In those cases that the syrinx doesn't respond to the decompression, they may do a shunt. It sounds as though your NS drained your syrinx during your decompression surgery and it came right back? Did you have the dura opened? 3 weeks post op to check on a syrinx sounds a bit strange.
I did have the dura opened. Yes, he did drain it and it filled right back up. He did an MRI about a week after surgery to check on it, and that’s when he told me it had filled back up. When I had originally gone in for the decompression they had a shunt as a possibility to do at the same time because of how right the area was…does that make sense? So he decided against it when he did the decompression…so maybe he knows,how my body would have reacted based on my MRI s and what they found when they did the decompression…I,just don’t know.
I meant tight
The only symptom my daughter had prior to her surgery was right arm and neck pain, and some tingling. An MRI showed the CM1 and syrinx. So she was symptomatic from the syrinx and of course that needed to be addressed before there is more damage to the spinal cord. The NS told us the treatment for the syrinx was the decompression surgery. Are you having symptoms? This is such a tough decision for you! By the way, you have a lovely family! Take care, JoAnne
Our Dr said he want to do MRI after 3 months post op but would wait up to a year to see if syrinx has gone done before they would do a shunt. Maybe second opinion?
Hmmm well with my son his did go down just a tiny bit though in three weeks. But his doctor said that normally they do not see any shrinkage for three months so he was very please. I didn't even see the change honestly it was that little, yet he was thrilled. So I would maybe ask some other neurosurgeons in your area to see what they think. My son had surgery March 13 and goes for his MRI July 27th this is the point I feel if it isn't still shrinking his doctor will most likely say either a shunt or detethering of the spine.