Medical news (long, sorry!)

I am so sorry this is long, but I wanted to include and cover everything in one post, so sorry right off the bat for the length.  If you have questions, feel free to ask away.

I went to my regular pain doctor in DE about a week ago.  I have been flaring horribly (flaring is when my pain levels spike and go out of control), and nothing- not meds, Lumbar Sympathetic Nerve Blocks, and not even my stim- are touching the's been an excruciating winter).  I had a LSNB done 3 days before Christmas, and while it gave me enough relief to get through Christmas, it didn't last long and I was back to where I was. 
Long story short, she told me that there is not much more she can do for me- I have had over 20 LSNB (which are not fun at all), and besides meds and the blocks, she can't do anything else.  She said that it sounds like, in her medical opinion, that because I react so violently to the cold that unfortunately my stim won't work during the winter.  She said it could work great during Spring/Summer/Fall, but the minute it gets cold, I flare so bad it just won't help. 
She also said that because the LSNBs do help some for a short period of time, she thinks I need a longer procedure that will bathe the nerve in the medication longer.  So she referred me to the pain doctor at Lankenau Hospital (who did my spinal cord stimulator surgery) for more treatment.

So I saw him last Thursday.  He agreed with her about the stim working for the three seasons, and me reacting so horribly to cold that it just won't work.  He offered three treatment options:  First, an intrathecal/PCA pump (  Second, a sympathectomy (  Finally, a Spinal/Epidural Infusion.

I told him that I wasn't at the point of a PCA pump yet, especially since I haven't had the stim even a year and it did work when it was warm (my mom is a home infusion nurse and one of 2 nurses in the entire state of DE that refills PCA pumps, so I know what they are all about).  I told him I was nowhere NEAR having a sympathectomy done, because quite frankly, the likelihood that it would end up putting me in more pain from cutting the nerve is too high for me- that is a last ditch, years down the road treatment.  So, that left us with the epidural infusion.

Basically, a spinal infusion is where they admit me for 4-5 days for treatment.  They put an epidural in, and start pumping the med (bupivicaine; the same med they use in the nerve blocks) into the epidural, which is placed over the sympathetic nerve (so it's similar to what you get when you give birth, just placed a bit differently).  They have to constantly monitor me with the medication, and more than likely I would have some PT at the same time that the block is going on.

The doctor wanted to try some conservative methods first, but did say that he thinks more than likely I will end up doing the infusion.  He adjusted my meds a bit, as well as ordered a reprogramming of the stim.  I go back for the reprogramming of the stim a week from Thursday, and if that doesn't do anything about two weeks after (3-4 weeks from now), he will admit me for the infusion.  He said if the infusion works, we will wait til next winter to see if the stim works, and then decide if I need one basically every winter.  If it doesn't work, we will still wait to see how well the stim works over the spring/summer/fall, and then decide if I need to go the PCA pump route.

It's really tough to be going through all of this.  It's affected every single aspect of my life.  Cold is my biggest trigger; I get violently ill from the pain (spending nights in the bathroom/by a trashcan ill), but I didn't think that the stim would end up not helping.  It's been a huge letdown.  DH has to do everything, and I feel so guilty about it.  They keep upping my meds, to no avail.  Driving is really difficult for me, which means I am stuck at home.  We are starting the process for SSD, but more than likely we will be denied- everyone with my disease is denied the first time around.  We are trying to start the house buying process, and I know that the pain will interfere with that.  I have put a ton of water weight back on (both doctors said it was water weight).  It's just one thing after another; there are days I just can't hold back the tears.  Add in my family who just doesn't get it ("You are always happy and smiling, how can you be in pain?" are comments I hear all the time), it's just really really tough right now.  I don't want to complain- please don't take it as that.  This is a vent at this point; I am just tired of the ish.

The other thing that is frustrating is I have to wait a whole nother year before I can see the top specialist, who is at Drexel (Dr. Robert Schwartzmann, the world's leading specialist in my disease).  But what really ticks me off is that I know others who had appointments after me who got bumped up to see him before me.  Umm, they told us when we booked the appointment a year and a half ago (yes, that's right, I booked in it 2009!) that patients are bumped in order if someone drops an appointment or dies (yes, she said dies).  So why are others being bumped before me?!  It's really frustrating.

Anyway, if I could just have thoughts and prayers right now, as well as for Brian, I would really, really be so thankful for them.  My sister told me that God will give you more than you can handle, but will never give you more than He can handle, so I am really trying to rely on my faith, but boy it's being tested right now. 

Thanks for reading all of this, girls.  It really means a ton.

For those who don't know, here is what I have:

What a Spinal Cord Stim is, which I had put in July 2010:

More info on a LSNB:

Re: Medical news (long, sorry!)

  • Options
    edited December 2011
    I'm sorry you're having so much trouble!  I still think you should move to warmer climates!  :)  Tell Brian I told you so.

    Aren't there other pain docs with great qulifications in warmer places?  I understand the risk of leaving this area with such great docs in abundance.
  • Options
    edited December 2011
    And I guess you can also count your blessings that the stim worked through the wedding and honeymoon.  Keep those happy memories with you through the winter.
  • Options
    Stacylynn702Stacylynn702 member
    First Comment
    edited December 2011
    Sorry you're in so much pain and not really getting the help you need.   I agree with MH though that you may be better off in a warmer climate.  Have you researched doctors anywhere else?  I know it's easy for me to say.  You're in my T&Ps.
  • Options
    edited December 2011
    Trust me, we have thought about moving.  The only problem with that is, with my case being worker's comp, they can order me to see their doctors at any point.  That means if I am living somewhere else, I have to come back here, and we can't afford traveling fees to come back here 3-4x/year. 

    We have been in talks with the lawyer to figure something out- trust me.

    I keep going through the pictures from the HM to try and keep my spirits up.  The only other thing that is keeping me happy is that my wedding pics CD should be here any day now (the company who prints the CD messed the first one up, and then the second one got delayed by all the snow storms when the planes were grounded). 
  • Options
    edited December 2011
    There is another doctor in FL that is known for his work for RSD; he is a collegue of Dr. Schwartzmann.  Other than that, I don't really know.  I have a couple RSD buddies who live in the south (GA and FL), and I have been talking to them about how they like their doctors.
  • Options
    FutureMrsTCTFutureMrsTCT member
    First Comment
    edited December 2011
    You and Brian are most certainly in my thoughts and prayers and will continue to be through the winter!

    I'm so sorry that the stim isn't working for you. I agree with using the wedding and hm memories to help you get through some of the more difficult moments. And try not to feel too guilty about letting your husband take care of you. He knew what he was getting into - and loves you for you. He also vowed for better or worse, in sickness and in health - and judging from what I know of you, I'm certain he's the kind of man who will do just that, and be grateful that he can take care of you.

    If you ever feel the need to chat, just fb message me, or if I'm on, I'd be more than happy to chat.

    Here's hoping for a warmer winter!
    *~~*The Future Mrs. Coulter-Thurley*~~*
    Siggy Challenge Pic with BM
    Image and video hosting by TinyPic Wedding Countdown Ticker
  • Options
    Musicheals71Musicheals71 member
    First Anniversary First Comment Combo Breaker
    edited December 2011
    So sorry you are suffering so much; no one deserves that!  T & P for you and DH.
  • Options
    edited December 2011
    Wow I didnt know about any of this. I must of missed other posts. I am so sorry to hear about this. I agree with Stacy and Hillary about moving but than I read your response. Can you get a new social case worker so you wouldnt have to move back up here? Or is that something that you must continue. I definitely would be scanning through my wedding photos and honeymoon pictures for high spirits! As for feeling guilty, remember your vows "Through Sickness and health.." You married a great guy, someone who is willing to stand by you and help whenever he can from what it sounds like. I can imagine it gets depressing but if you count down to spring its only 2 months away on Thursday and usually Dec/Jan are the coldest, so I will keep you in my T & Ps that the climate starts to warm up soon!
This discussion has been closed.
Choose Another Board
Search Boards