Swelling @ incision site

[auntij2746]

Hello everyone and happy new year! I have been keeping up but not posting,...I had surgery on 9/24 and again on 11/7 (csf leak repair). This 2nd time around everything seemed to be going well except for extreme neck tightness. At the 6 week checkup my NS gave ok for pt which I am scheduled to start on 1/8. Then, last Thursday I noticed swelling at the lower end end of the incision site, felt like the top of a ping pong ball. sometimes it's firm and other times squishy. II spoke with ns assistant after sending him pics and I will call back tomorrow to see if I can see ns on Thursday. could this be a leak? I has anyone had experience with this? I have been very careful, even more so after the 2nd surgery as I was so paranoid about another leak, but now I fear just normal Christmas activity could cause this?? I am a bit discouraged but hoping maybe someone here could share their experiences with this. I thanks so much :-),june

[selmaS]

  U can sleep on ur side, being in a recliner keeps u from rolling....but u can do it,...get a body pillow and sit on it....recline the seat back as far as u can stand to....but not that u r flat....I also had pillows under my feet and knees....it was very fluffy....and I enjoyed it...lol...

[auntij2746]

We ruled out eds with a rheumatologist before I had the first surgery. I still have a lot of trouble when I lean back on my head. It feels like I am leaning on a cage in my head. Any suggestions of how I can sleep in a recliner if I can't lean back? Tx june

[selmaS]

  Have u ruled out EDS yet?

If it pools when u r laying and seems to absorb when u r upright, then u may want to try and sleep in an inclined position....a recliner or something along those lines....I stayed in a recliner post op for a few weeks, not that I had an issue just felt better to me, plus I did not trust my DH's flailing during the night to avoid my head....lol...

Keep hydrated and as upright as possible ,....that is what I get from what u r saying.

[auntij2746]

I had a spinal tap on Monday (1/7) and got a call from the NS office today. The pressure was 240 and they reduced it to 90 during the st. He said pressure was high but not so high to intervene. The fluid collected showed no infections or other abnormalities. the swelling seems worse in the am. he said that was a good sign which could mean it is being absorbed during the day, while it will "pool" while I am recumbent. We are keeping an eye on it for any signs it is worsening, like a larger mass, or any external drainage and he wants to see me again in 2 weeks, if nothing changes. The if it gets worse, the he is considering a shunt in the lower spine.  is that bad? Have you heard of pseudos absorbing better if you are upright? I thought lying down was better but now I'm confused :-( TX so much! June

[selmaS]

  I think it all depends on what amount he draws and y he wants to do it...sometimes they draw only a small amount to test to make sure there is no infection.....the fact u do not have bad symptoms from this leak, not sure what his thoughts r......

[auntij2746]

Thanks Selma. Resting is tough because I want to do things to take my mind off of it but I will stay put today. A friend visiting from Haiti is coming over and we will watch movies. I I forgot to ask ns if the spinal tap will take the swelling down right away-do you know? I thanks again :-)

[selmaS]

  Glad u saw ur Dr and a plan is in place....take it easy the next few  days...rest and keep hydrated.

Do not do nething.....rest, rest and then rest some more : )

[auntij2746]

I saw my NS today and he ordered a spinal tap to measure the cranial pressure, which is scheduled for next Monday. He confirmed it is a leak but did say it may resolve itself. He said it is a good sign that it is supple and that I am not having headaches. I have experienced some infrequent twinges of pain,.,as always I feel better after seeing him and knowing he is trying his best to find a resolution. I don't think I did anything to cause this but I do always have that fear because I never seem to know if I am overdoing. :-(

[selmaS]

Sometimes a blood patch is done, rest and plenty of fluids help......

[auntij2746]

Thanks Selma & viva. I have an appointment w/ns tomorrow and am apprehensive about what he will say. I so do not want to be in the hospital again so soon. How is a leak usually taken care of other than surgery?

[Viva001]

Take care!  I hope it is nothing.  
I noticed that even sitting too long (like during "Lincoln"), or sewing, has consequences.
Too bad there is no one size fits all rule book.

[selmaS]

  Hi I am so glad to get an update on u.....and sorry that u may have yet another leak....it is a possibility and zygy2 is well experienced with CSF leaks...and one to talk to....

Until u see ur Dr, keep hydrated and rest....praying it seals on it's own.

  ((hugs)) and Happy New Year !!