Surgical wound from my detethering (lysis of filum) surgery. Most people's wounds will be larger; my neurosurgeon specializes in doing this operation with a very small incision. Photo taken in December about one week post-op.
The harder question is how did the surgery help my symptoms, and will it halt the progression of syringomyelia.
The short answer is that it is too early to say. Week three of my recovery, I was feeling wonderful. I had such a reduction in pain that I was giddy. I was able to tolerate sitting in a recliner, which I couldn't before surgery (it would make my arms or legs go numb and cause pain). Kicking back in the chair felt really good (I usually stand up all day in front of a computer). Unfortunately, after sitting for an hour or two one day, I started getting leg symptoms again. Since then, I've gone back to feeling more like I did before surgery. My leg pain comes back occasionally (woke me up last night at 3am). My feet and calves feel numb much of the day. My thoracic spine and neck are a little tight. I have nerve pain in my arms sometimes.
It is expected that one's symptoms will ebb and flow after surgery. It just takes some time.
Mentally, it is really tough to be teased with the prospect of less pain and weakness, only to have it return again. I'm just trying to be positive and patient. Time will tell.
In the meanwhile I've been taking it easy and making a point to walk 2-3 miles a day. Walking felt really good last week, but this week it hurts some. So it goes.
6 comments:
Hey thanks for the update. It's really weird. If you felt that good for a while, it's obvious the surgery did something. I guess it'll be some time before you can really assess it. Sucks having to wait not knowing. It will be very interesting to see the state of your syrinx in a few months that's for sure. I hope the best for you and I hope you've found the elusive answer. I have a T7-T9 syrinx with mild symptoms right now. Just got a packet from TCI so I guess I'll fill that out and see if they can figure out what caused mine.
AJ,
Nice insision! (I'm jealous!) I was suprised when I checked your blog today and found out you had your surgery. I thought you were having it done at a later date.
Like you said 3 weeks is too early to say just how much the surgery will help your symptoms. I also went from having less pain in my legs and also less headaches. I think I told you this, I was told by someone else I trust about these issues, that the relief I felt was from the draining of the CSF before and during surgery(meaning without the fluid we have less pressure on the syrinx and spinal cord, I am not sure if this is correct, but it did make sense to me). I don't know if you read this on my blog or not, but my MRI imaging 3 months after TC surgery showed a decrease in size of my syrinx, and I have had lower body improvements.
I hope your recovery is going well, I will be keeping you in my thoughts.
Take care and congrats on going through with the surgery. I know what a tough desision it is to make whether or not to go under the knife.
How's it going now? Still about the same?
My symptoms continue to ebb and flow. Lately I've been feeling somewhat better. I did a couple of hikes in Forest Park this weekend and it went ok. I have my first follow-up appt. with my neurosurgeon on Thursday. It will be interesting to hear what she thinks.
AJ-
Ive read your story with interest. My TC surgery is set for July 29. I'm 42 and have had tether symptoms the past 5 years from scar tissue related to repair of spina bifida at birth. I sent my Dr at Hopkins your picture above to see what can be done about minimizing the wound size, although it may not be possible. Glad to hear you have had some improvement. My experience with TC symptoms over the past 5 years was that I saw very slow and gradual improvement, nerves do grow back some but glacially slow and not linear, more like a rocky up and down with a long term gradual uptrend noticeable on a year scale. In my case I then dropped off a cliff after lifting something too heavy and now can't walk and bad pain, the surgery has some hope of correction.
Stephen
My son had detethering at 4 and subsequently went into retention which previously he had no symptoms. he is now 14 and the pain is has not lessened at all. He now uses a wheelchair for outside use. But yet we are told there us no nerve damage it's all psychological. So angry with it all
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