Surgery scheduled April 8th

I finally found the right surgeon at Hershey Medical to fix my incisional hernia that I developed as a result of my fusion surgery back in May.  I’m going to have open surgery to fix it (not laparoscopic due to the location of my metal plates).  This surgery is going to be a walk in the park compared to the horrific symphyseal fusion surgery I survived.  It’s outpatient, I can drive and return to work after 1 week and I can’t lift anything over 20 lbs for 4 weeks.  Not bad!  I’ll struggle with Patrick who is 28 lbs, especially getting him in the car seat but we already started training him to get in himself.  So in theory this should be relatively easy to get thru.  Hopefully no more complications!

My SI Joint is still horrible, I continue to stretch and strengthen every day, I’m a good patient and sort of obsessed with getting it better on my own without yet another surgery.  I am, however, not getting any relief yet.  But my latest theory is that all this strengthening and PT home exercises I’m doing will hopefully carry me thru my upcoming downtime after the hernia surgery and the resting and no child lifting should ease up the pain and maybe, just maybe, I’ll have less pain when I’m back to no restrictions in May.

I remember one year ago when I was on bed rest for a few days because I couldn’t walk after having a cortisone shot in my pubic symphysis joint.  When I was walking, it was with a cane and a terrible limp and I could barely move to change a diaper.  I’ve come so far in 1 year, amazing results for the front of my pelvis.  I have quite a long journey ahead of me yet, but I am relieved to know the worst is behind me.  I just keep fighting one day at a time.  Now, if the back of my pelvis would cooperate…

 

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One HUGE positive!

I was so caught up yesterday in the misery of the doctor appointment I had that I hardly mentioned one HUGE thing.  My very positive news to report is that my pubic symphysis fusion surgery was definitely a success.  I have mentioned this before but I really want to stress how huge this is for me.  I am not disabled anymore!  Yes I have terrible SI Joint pain in my back but I’m not using a cane so that can’t be overlooked.  Thank you to my surgeon for successfully fusing me in the front!  He kept telling me I was a perfect candidate for this uncommon surgery and he wasn’t kidding

My surgeon originally wanted to fuse my pubic bone at the same time as fusing my SI Joint, recently I’ve been wondering if that is the course I should have taken a year ago.  But I have to keep reminding myself how horrible the recovery was from 1 fusion surgery it is hard to imagine having two fusions done at the same time.  Tackling one surgery at a time and hoping for the best outcome from each is my approach here.

Thank you for everyone’s support!

Another year bites the dust

I was really hoping 2016 would be a great year for getting back into activities and living life without pain but unfortunately this year is going to be extremely rough.  I went to my surgeon in Hershey this morning for a follow up on my back pain.  I’ve been doing physical therapy for 6 weeks without any results, I’m still in pain every day, even just sitting is very painful.  Some days are worse than others but when I have bad flare ups it really is hard to get thru the day with 2 active small children running around.

I am going to try another cortisone shot in my Sacroiliac Joint (SI Joint) guided by CT Scan, I had this procedure done 1 year ago but I requested giving it another try now that I’m fused in the front and my pain is more localized now to just my back (a year ago it was my front and back).  Maybe, just maybe this will work this time?!  Cross your fingers for me!

I follow up with my doctor 2 weeks after the shot and then we discuss the next step.  Here’s where it gets ugly and I mean UGLY!  If the shot doesn’t relieve my back/butt pain then I’ll have the option of either putting a screw in my SI Joint to stabilize it or fusing the SI Joint with metal plates and a bone graft OR I might have to have both done.  I can’t imagine going thru another fusion surgery, that was so horrible and having him discuss that with me this morning I was sort of in shock.

My doctor wanted me to know that I do have options out there that he thinks will relieve my pain.  I guess it’s just a matter of how much pain am I in and how much can I tolerate before I need to have surgery again.  I never have a day without back/butt pain and I’m only 34 and I wonder if I can live the rest of my life like this.  I’m a very active person and I really don’t think I can.  I’m glad that I can take care of my kids again and walk without a limp or cane but I’m still living in pain every single day.  After 3 years now, it is SO old!

So unfortunately he doesn’t have stats for me on successes or failures with post partum women having SI Joint fusion or a screw in the SI Joint along with pubic symphysis fusion.  It is so rare to have both done he said there is no medical research done yet.  AHHHHH

WHAT DO I DO?!

Oh and I forgot to mention that I most likely have an incisional hernia as as result of my pubic symphysis surgery.  I see a different doctor for that in 3 weeks and will probably need surgery to have that fixed.

Worst case scenario: Hernia surgery, screw in my back, then fusion surgery in my back.  2016 = Hell year

Some recent setbacks

I was doing really well but I have some recent setbacks that have halted my recovery.  I have 2 issues going on and one of them is really strange!  I’ll start there, I believe I might have a hernia (or maybe a tumor but that’s just me freaking out).  I have recently developed a large lump near my incision and it’s rather annoying and can be painful.  I saw the Dr. and he was quite perplexed with it, in fact he said he’s never seen this before.  Here we go again, another rare thing I have to deal with and search around for answers.  Anyway, he is referring me to an OBGYN he knows who might be able to deal with this in Hershey Medical Center which is at least still in the same hospital network so I don’t have to transfer charts and images.  He said if it’s a hernia I will most likely need surgery to fix it, but I don’t want to get too far ahead of myself until I meet with the next doctor.

On to issue #2…worsening SI joint pain in the back of my pelvis.  I have good days and bad days but lately it seems I have more bad than good and it can be quite painful when it flares us.  However, putting things into perspective, I’m not limping from the pain (yet) and I am able to care for the kids so I guess I’m still one leg up from where I was at before surgery when I was disabled.  So I discussed the back pain with my doctor and we have a plan now.  I’m going to try PT for 2 months and see if that helps.  I’m guessing it will since I’m so weak still from the 8 week surgery recovery so cross your fingers for me!  Now, if PT doesn’t seem to do the trick, then I can try a cortisone shot back there again (I had one there last winter when it really flared up to the point of barely being able to move).  And if that doesn’t work then we will be discussing yet another surgery to put a screw in my SI joint to stabilize the back of my pelvis.  I really had hoped to increase my activity level and my doctor thought I would be able to do more by now but you have to take what gets thrown at you and work with it.

So worst case scenario here is I’m looking at 2 more surgeries, I wonder if they will do a 2 for 1 deal… lol.  Gotta keep some humor in this or I’ll lose my mind.  Best case scenario NO MORE SURGERIES!  I am definitely hoping for best here but that lump has me worried.

Quote from my doctor the other day “I really don’t want this appointment to be all doom and gloom for you, I think things could be a lot worse but they could also be a lot cheerier too, so hang in there.”  That’s exactly what I’m doing doc!  One day at a time 🙂

Going Strong!

fam pic oct trip

I’m still going strong everyone!  I was able to travel back and forth to the Outer Banks North Carolina twice since August (9 hour car ride 1 way).  I decided to include this cute picture of my kids at the beach and me bending down with them.  This would have been excruciating before surgery and my pelvis would have cracked and shifted out of alignment. I’ve really come a long way!

I’ve been able to ride my bike a couple times and swim here and there.  I’m taking things very very slow right now.  I did manage to walk to the bust stop once and I plan to do that again today.  I have the nagging back/glute pain from my SI Joint still but I’m not dwelling on that right now.  Main thing is that I can function again in daily activities.

I have a bizarre lump that developed on one of my incisions so I’m getting that checked out in 2 weeks along with my last set of Xrays, yay!

I can’t believe it’s been just about 5 months since I had surgery.  I’m doing great and I continue to get stronger every day.  I have had a few women reach out to me who have been diagnosed with the same condition during pregnancy or post pregnancy and I encourage anyone who is reading this to please know there is hope out there and you should not have to be disabled for the rest of your life.  Keep searching for the right surgeon and message me with questions!

I’ll update again after my next doctor appointment 🙂

Surgery is a Success!!!

I can officially say that my surgery has been a success now! I have been walking around like nothing even happened, it is amazing.  No limp, no wincing in pain, no cane, no wheelchair and I feel great!  Pregnancy was so difficult on my pelvis and now that I had surgery to fix that, I’m starting to get my life back.  I had a doctor appointment recently with fresh X-rays and everything is as it should be (I’ve been a good patient and have not been over doing it, for the most part).  Dr. Reid walked in the room and I was sitting there talking to the RN and I was all smiles and he was so excited for me and couldn’t believe it.  I’m not gonna lie, I almost started to cry when I was telling him how happy I was that I can care for my children again and walk around without pain and hearing my pubic bone shift and crack at every move.  I have my life back and it’s only been 3 months! He said I look more like a visitor than a patient and he didn’t see why I should hold back on anything at the moment.  I’m at about 80% of my full recovery right now, so I’m still being cautious and not doing more than I have to.  I’ve been enjoying life and all the little things I couldn’t do before, cooking, swimming with my kids, paying on the floor with them, going up and down stairs like it’s nobody’s business.  If you saw me, you would not believe I am recovering from major pelvic surgery involving 2 metal plates and 10 screws and a bone graft.  The day I came home from the hospital and I was convulsing in pain and barely able to move, I told Madelyn that I was one tough cookie and she shouldn’t worry.  I still stand by that all the way!  I’m still recovering and looking forward to being able to do even more, small goals people!  I hope to swim more and get on my bike soon, I just have to find time 😉  I forgot what it’s like to exercise and coordinate that around the schedule of 2 kids.

On the negative side of things, I do have back pain, same pain I had when I was pregnant with Patrick 2 1/2 years ago.  It is my SI (Sacroiliac) joint.  Originally I was going to have a screw put into my back at the SI joint to stabilize the back of my pelvis but I decided against it last minute before surgery.  I thought fusing the front of my pelvis was risky enough and was worried about putting a screw in the back at the same time.  It is an even more uncommon surgery rarely performed at the same time as a pubic symphysis fusion .  Dr. Reid was ok with my decision, but mentioned that about 30% of the postpartum women he does the pubic bone fusion on have to return to get a screw put in the SI joint later.  This is for the women who have front and back pain (me!).  I wanted to take those chances though, so I’m rolling the dice here.  Supposedly it is an outpatient surgery with less recovery time, but hopefully I won’t have to do that! The idea is that fusing the front of the pelvis at the pubic bone should in theory stabilize your whole pelvis.  For some women it does not and there is still excess movement in the back, and unfortunately because it is so rare to have it in the pubic bone and SI joint at the same time, there is not enough info out there to determine whether you will be one of those unlucky people or not.

So the pain I have is not debilitating, it is not causing me to limp and I can function with daily activities. I’m thinking that once my muscles get stronger this back pain will subside.  I had some serious muscle atrophy after 2 months of not moving much.

On a good note, my hip pain has mostly gone away, yay!  I stretch every day and that seems to help.  I think sitting for too long really caused a problem for my psoas muscle, so I’m trying to to do that anymore.  But seriously with 2 small kids, how can you sit all day…

My takeaway: never take things for granted! Enjoy every moment with your family and physically being able to do things with them.

My upcoming challenges: Walking to the bus stop (.8 miles, sounds short but after pelvic surgery it’s like climbing Mt. Everest), Potty training Patrick (LOTS of bending and hunching over to chase after a toddler = painful), attempting a bike ride (Dr. wants me to try this but I’m very nervous cause I’m not supposed to fall).

All in all, I’m overjoyed with the outcome so far 🙂

Feeling great!

I’ve been walking for 2 weeks now and I feel great!  I can finally say that I think this major surgery was a success.  I’m not limping and I can pick up Patrick and do stairs with no trouble.  I am still soar all over, but it’s not a terrible pain and I can deal with it.  I have some hip pain still, but stretching really helps.  I can’t sit for too long and I can’t stand for too long, so I am trying to find a good balance.  I’m really just so thrilled to be back in action with the kids and driving again and basically starting to get my life back.  I’m all smiles over here 🙂 2 1/2 year battle with this horrible condition that started with my pregnancy and now I’m finally on the mend.  I may try swimming laps soon, being in my pool feels great to be non weight bearing.  I really want to take on the world but I’m holding back right now and still easing into things, basically just need to master walking still.  I can’t tell you how awesome it is to walk without a limp and not be in constant pain.  It really took a toll on me over all those years and I can see the light at the end of the tunnel now.  I don’t know how people live with constant pain, it is absolutely terrible and I have a whole new sympathy for anyone dealing with that.

I’m a fighter and I think I might win this war!