Post surgery update and PT question

[GEMOM]

Hi everyone,
I've read a lot on this site (thank you all) but haven't posted much so I wanted to tell my story.  I was diagnosed in October, met with the first NS in November, got a second opinion the week of Thanksgiving and had the decompression surgery on 12/18/13.  I will be honest, I was miserable until the 26th, I was one of the unlucky 35% who have massive nausea and flu like symptoms.  But on the 26th after a nap, I ate and felt like a new person (and I got to check off lose 10 lbs from my New Year's resolution list right away).  I guess my CSF had finally regulated or whatever.  Everything went really well after that, but one thing I haven't seen discussed much on these message boards is physical therapy.  My doc prescribed it to get my range of motion back in my neck.  It worked and I have full range of motion, but an hour after my last visit (I refused to go back), I noticed a squishy lump on the back of my head, called and saw my NS and sure enough, I've got CSF pooling in my patch.  I'm convinced it was caused by my PT - anyone else have this issue?  We're monitoring it and my next CT scan and NS visit is May 15th.  My NS has done 250+ chiari surgeries and never had to go in and fix a leak so I'm really hopeful it will resolve itself and I'm not his first one.  I do want to tell anyone waiting for the surgery that I don't regret it a bit.  I'm 100% symptom free, no headaches, got my hearing back, was able to reduce my eyeglasses perscription, can swallow and don't snore anymore!  I also had full body tremors before the surgery and pins and needles all of the time both of which haven't happened since the surgery.  As far as activities, I'm back almost 100%.  I just got back from a 10 day trip to Europe to celebrate my recovery and my birthday and walked all over there and was fine.  My workplace is having a get fit challenge right now and gave us all pedometers to measure our steps everyday.  In Europe I was averaging 13000 per day and hit 20000 one day and felt fine the whole time I was there.  So I know a lot of people have a lot of post operative problems, but for me after the vomiting stopped it's been relatively easy, so please hold out hope that it will be for you too.  I think having the right doctor and taking it really easy at first are key.  Mine NS is not specifically a chiari specialist, but does have a lot of experience.  I decided to stay local (Richmond VA) versus go to a specialist center because I wanted to be close for the follow up and you are really entering a long term relationship with your doc.  I passed on a more famous one at UVA because he spent about 15 minutes with me during my appointment whereas the first NS I met with spent almost an hour with me showing me my pictures and explaining in detail what was going on and why I needed the surgery sooner rather than later.  My symptoms had escalated rapidly in the last six months and I was getting new ones every 2 weeks or so.  Keep your fingers crossed that I don't have to get my leak fixed and that it resolved itself.  It doesn't really bother me other than the lump (if it's full) or squishy spot (if it's drained) feels weird and I have dizziness at times, mostly when I get up first thing in the morning or if I've been lying down for a while.  I also have a cool new party trick that if I tap on the lump my leg jumps like a Doc's reflext test.  Anyone else had that?  Thanks to all for sharing your knowledge and stories.

[GEMOM]

Hi ryssamac - Good luck with the NS meeting.  Let us know how it went.  I think waiting until you are ready makes a lot of sense.  My NS told me I could wait as long as I needed,  but for me personally, the anxiety over the surgery was tough and I just wanted to get it done and behind me.  I had actually bee prscribed Xanax because I couldn't sleep at night thinking about the surgery.  One thing to keep in mind, my NS told me that although I could do it whenever I wanted, the condition was worsening for me over time and that the healthier and more mobile I was before the surgery, the easier the recovery would be.  I was in great shape last summer and then had already started slowing down in the fall (I couldn't figure out why until I was diagnosed) but I was still in pretty good shape and exercising a couple of times a week, so I'm sure that being in decent physical condition helped me a lot.  I was off the pain meds in 2 weeks and on Tylenol so that I could drive and get around on my own.  Go in with a great attitude and you're going to be just fine.  Just be patient and don't push too hard post surgery.  

[ryssamac]

The "hiker in his 20's" comment cracked me up!!!  You just made my day.  And how true.  


I appreciate your post op comments.  I'm meeting with NS's now discussing surgery.  Was diagnosed last May and was told I would know when the symptoms outweighed my fear and concern of surgery.  A lot of people bashed on the Dr for saying that but I felt that him putting it into my hands like that helped me a lot.  And he was right.  The thought of surgery after just going through the shock of the diagnosis had me so upset.  Taking this time and realizing my symptoms are getting worse has helped me mentally prepare.  Kinda like it's actually my choice of times even though it's really not.  The symptoms pretty much dictate everything in my life.
But reading your post eased my mind a LOT!  

[GEMOM]

Thanks for the comment Frankie.  Funny we have a cabin in the mountains close to the Shenandoah National Park and are avid hikers.  About 7 weeks after my surgery we went for the first time post surgery and asked the Ranger at the gate for an easy hike.  He recommended a part of the AT to a shelter with a view.  Maybe by easy he thought we meant short?  We ended up going pretty much straight up too - but I did it and felt good about it until the next morning when I sat on the couch for 3 hours straight with a heating pad LOL.  Lesson learned, find a Ranger who isn't in his 20s and obviously fit to find your "easy" hikes.  

[frankie_rush]

I am glad you are doing good.  I had PT after surgery but that was to learn to do everything.  I was all fused in my neck.  I did something similar to Europe.  I wwnt on a trail walk when still doing therapy and it turned out to be a three mile straight up the side of the mountain.  I had to use my walking cane to grab trees to pull my self up at times but it showed me I could do it.  My PT therapist was the best you could ask for Patricia Neal in Knoxville, TN.  So keep us updated on how your doing, ok.

[selmaS]

  So u never had an issue with healing, that still does not mean u do not have EDS< I only mentioned a few symptoms and not everyone has the same type or the same symptoms, it is something we ALL should have ruled out...

When my DD suggested I had it , I said the same thing, there is no way I do not fit this or that  of the symptoms....but I do have it....so get tested.

[GEMOM]

I was not tested for ehlers-danlos, but doubt I have it because I healed really quickly with no real complications and I don't have any symptoms.  My patch is from the membrane surrounding a pig heart.  

[selmaS]

  Hi...I am glad u r getting so much from the site and u r posting.

As for the PT I do have a chart posted of neck exercises we should do post op to keep the muscles form getting tight and to help prevent scar tissue.

How soon post op did u go for PT and was the PT tech up on Chiari?

I was told to go for PT, but didn't and at one of my post op visits I was told it was good I did not go...

We have had threads on the topic, but we r so diff post op it may work for some and not others...but we ALL have to do the neck exercises and move or we will heal in a position that we hold ourself...so to get ROM we have to move. I did the exercises at home my self and have more ROM then I did b4 surgery....but I did have a PT show me while I was still in the hospital.

Were u tested for ehlers-danlos? And what type patch did u have? It can be either of these b4 it could be the PT...so do look at the possibilities...