If you had a choice....?

[DizzyGirls]

@bombsh3ll Yes, she did faint post op.  Oh boy, did she ever!  Scroll up to my post on this thread on August 23rd, I told the story.  The fusion was ok.  She's even been in a car accident since, without her brace!  That was soooo scary and really set her back.  I wish you all the best and hope that you can get your symptoms figured out.  It's really hard.  Not only does my daughter still deal with the after-effects of her surgery and vertigo, she's developed kidney stones!  If it's not one thing, it's another! 

[bombsh3ll]

8 hours ago, DizzyGirls said:

Not only does my daughter still deal with the after-effects of her surgery and vertigo, she's developed kidney stones!  If it's not one thing, it's another! 

My heart goes out to her dealing with all this at such a young age. I know kidney stones can be very painful (although I have never had one myself) & hope she manages to get over that quickly! I would have thought that would be one problem less likely to happen in someone with POTS given the volume of fluid we drink, so that is very unlucky!

So the fainting post op didn't hurt the fusion? That is a relief to know. 

Firstly I am going to thoroughly pursue intracranial hypotension/spinal fluid leak as the cause of my illness given my mode of onset & splitting orthostatic headaches, but if I am satisfactorily cleared/treated & still unwell then I think I will pursue the surgery given the success others have had with this. 

Thank you so much for sharing experiences, I find it so helpful to hear from/about others who are dealing with similar.

B xxx

[edriscoll]

I am weighing in here on spinal fusion surgery in general.  My cervical spine is not fused, however, I am fused from T1 to L5 with 2 6" screws holding my pelvic bones stable along with a spinal cage in the front of my spine and 4 rods in the back.  My surgery was originally done to treat scoliosis, with 2 additional surgeries to correct what was done the  first time.  

I woke up from fusion surgery with dysautonomia.  They believe that disruption to the thoracic spine and nervous system caused a type of dysautonomia similar to dysreflexia.  I also have an autoimmune component in addition to other health issues.  But what I really want to share with you are some of the things that I did not realize or think about before agreeing to have my spine fused.  This is not advice or an attempt to talk you out of or into the surgery.  These are just some things that I wish someone had told me before my decision.

1.  Not being able to turn or twist is a very big deal and limits your mobility and quality of life in ways that are difficult to imagine before you do it.  In my case, I didn't realize that I would need to take only small steps for the rest of my life.  It sounds funny and hard to imagine, but because of the pelvis being stationary, if I try to take a wide stride, I would end up going around in circles.  Like I said, sounds silly and maybe minor - but not being able to just ....walk...without thinking about it is very limiting, especially when you add all the factors created by dysautonomia that impact just getting up and walking.  That's just one example, but there are many.  Not being able to turn or twist freely makes things like showering and washing your hair now require assistance tools.  Getting dressed needs to be relearned.  My point is if you can possibly wear something in advance to give you a similar experience to the limitations you will have after fusion, please consider doing it.  Speak with your surgeon and ask for a way to duplicate the limitations so you can make a good decision. You want all the information you can have.

2.  It is very difficult, if not impossible, for surgeons to predict what effect or disruption the surgery can have on nerve endings and muscle.   In my case, I had the surgery in the hope of eliminating pain caused by the scoliosis.  What I was not told and did not investigate myself, was the negative effect that was possible after cutting through nerves connected to the spine along with the muscles and ligaments.  I did wake up with the original pain from scoliosis gone, but it was replaced with horrific nerve pain that continues to this day and  could not be predicted.  In your case, your goal is much different, but the point is the same - talk to your doctor (or preferably more than one) about what nerves or major muscles will be disrupted by the surgery and what, if any, effect it could have on your overall health.  The top spine surgeon in Boston's Orthopedic hospital who did my final spine surgery told me this "A surgeon's answer to problems is always surgical.  It's the patients job to weigh what you can gain or lose from the surgical response"  Wise words from the horse's mouth.

3.  When a part of your spine is fused, it no longer works the way it was meant to work.  That can cause additional stress and strain on the next group of vertebrae in line.  The additional stress over time can cause problems to those vertebrae.   Ask what impact fusion may have on the health of the rest of your spine over time.

4.  Fusions don't always take.  I did not know how common it is for fusions not to hold.  Granted, the more fusion done, the more likely a break or failure in parts of the fusion are likely.  But still, I had no idea.  Asking what steps will be taken to ensure you have a solid fusion (there are treatments and medications that can help), also asking what can be done if the fusion does not take as it was meant to (another surgery?).  Ask if they are planning to check your Vitamin D levels and your ability to absorb calcium.  If your levels are low, ask about being treated to raise your levels before the surgery.

5.  Ask a lot of questions about post-op care and recovery.  Take advantage of every rehab option given to you.  Recovery from spine surgery requires knowledgeable assistance.  It's not something you can just do by exercising at home.  Also ask about diet.  There are a lot of things regarding nutrition  (food and supplements) that can help your odds of a successful fusion.

I'm not trying to be scary but knowledge is a good thing, especially when it comes to surgery.  Thinking positively is a great thing,  but asking hard questions isn't negative, it's empowering.  I realize that having 2/3 of your spine fused carries impacts that aren't as likely when just a few vertebrae are fused, however, anything done to your spine requires a lot of investigation.  Clearly you are doing your homework just by asking these questions. 

I wish you the very best in making your decision and good luck in whatever you decide.

[bombsh3ll]

3 hours ago, edriscoll said:

I am weighing in here on spinal fusion surgery in general.

Thank you so much for your insightful post and sharing your experiences, I really value hearing from someone who has had a fusion surgery. That is a lot of useful info that I will def consider when questioning my surgeon.

3 hours ago, edriscoll said:

I woke up from fusion surgery with dysautonomia.

That's awful, I'm so sorry. Is there any way the intubation/handling of your neck could have caused craniocervical instability? I have heard of others getting it after surgery (and recovering after craniocervical fusion). Alternatively is there any possibility the surgery could have caused a spinal CSF leak? That is my number 1 differential diagnosis just now. 

That is an excellent suggestion about trying something temporarily that would simulate the movement restriction post surgery. I did actually buy a hard cervical collar but sent it right back when it didn't help my symptoms (my particular issue requires upwards traction rather than just immobility of the vertebrae), but maybe I will get another just to see what living with a fused neck would be like. 

I also have the option of trying a halo brace, which is more invasive & costs a lot of money just for a couple of days, which is supposed to mimic the benefits of surgery by pulling your skull back up into place, but this does have some risks like further loosening the ligaments if you decide against surgery, and also is not always a good like for like trial as to whether the surgery will benefit a person. 

Was anything specific identified as to why your first fusion failed?

Many thanks again for the helpful info!

B xxx

[edriscoll]

 

On 9/4/2019 at 12:05 PM, bombsh3ll said:

That's awful, I'm so sorry. Is there any way the intubation/handling of your neck could have caused craniocervical instability? I have heard of others getting it after surgery (and recovering after craniocervical fusion). Alternatively is there any possibility the surgery could have caused a spinal CSF leak? That is my number 1 differential diagnosis just now. 

Was anything specific identified as to why your first fusion failed?

Sorry for the delay in my response, I was out of town last week.  I'm glad that my post gave you some things to think about and discuss with your surgeon.  

To answer your questions, the best guess my surgeon could give is that the dysautonomia was caused from a combination of trauma to the spine itself (specifically the thoracic spine) and the general trauma of the surgery itself.  The surgery was 13 hours long and it required posterior and anterior fusions, blood transfusions and I was intubated for 3 days in ICU following the surgery.   My neurologist, who treats me for dysautonomia, has said that that that surgery caused a disruption to all of the major systems in the body.  And given my age at the time, it is no wonder that all of my systems did not return to "normal" 

The specific reason for the first fusion failing is that the surgeon did not use pelvic bone for the fusion.  Instead he took a "short cut" and used rib bone for the fusion.  To reach the spine to insert the rods and cages, they deflate the lungs.  To deflate the lungs, they removed a rib on the left side of my body.  To save time, the surgeon used that rib for the fusion instead of making an additional cut to retrieve pelvic bone.  The problem with that is that rib bone is very porous - so it doesn't offer the best chance of fusion.  Also, fusion surgeries now use bio-medical materials to promote fusion and help the bone grafts take.  None of this was used for me.  Bottom line, I didn't have a good outcome for the 1st fusion because I wasn't given the best start unfortunately.   

I learned from that experience not to be intimidated into not asking the questions I need to ask.  Since then, if I feel intimidated into silence, I get a new doctor.  

I wish you the very best in making your decision.  Please feel free to contact me again if I can help in any way. 

All the best,
Ellen 

 

[Pistol]

@edriscoll - thank you for sharing your unfortunate story. I am sorry! But because of people like you, who share and educate, we can advocate for ourselves. Bless you! 

[bombsh3ll]

On 9/16/2019 at 10:17 PM, edriscoll said:

I learned from that experience

And thank you so much for taking the time to share it.!

The surgeon I would be using typically harvests rib for the grafts but I would definitely ask about pelvic.  They also use cadaveric donor bone and chronOs synthetic bone mineral protein either instead of, or as well as, bone grafts harvested from the patient so it seems to be tailored to individual needs. 

Having been unable to do weight bearing exercise for 5 years & being low BMI & largely housebound so not exposed to sunlight my own bones may be a little osteopenic, so I would need to consider the best option for the graft. I really appreciate your insight!

B xxx

[edriscoll]

2 hours ago, bombsh3ll said:

The surgeon I would be using typically harvests rib for the grafts but I would definitely ask about pelvic.  They also use cadaveric donor bone and chronOs synthetic bone mineral protein either instead of, or as well as, bone grafts harvested from the patient so it seems to be tailored to individual needs. 

During the 2nd surgery that was done to correct the failed fusion and problems with the 1st surgery, they used chronOs synthetic bone protein with success.  For similar reasons as the ones you state, they felt it was a much better option than trying to harvest my bone.  It is an individual recommendation and it is great to have options.  I wish that all surgeons discussed the options with patients prior to making decisions.  You are clearly educating yourself and that will give you the best outcome possible.  Best of luck.

[bombsh3ll]

@edriscoll It is good to hear you had success with the bone mineral protein because I would definitely choose to supplement that too in addition to either my own bone and/or cadaveric. I know there are different types & some of the earlier ones were removed from the market, but some people have had problems with it overgrowing. ChronOs is reabsorbable though so I don't think it has those issues. 

Just thinking though about your sudden dysautonomia onset post-op, sorry if this is something you've already crossed off, I know how much all of us with chronic illness despise the unsolicited "have you considered...?" but what is top of my own differential diagnosis list right now is a spinal fluid leak (as I have mild EDS & my illness began immediately following a forceful valsalva, before which I hadn't even a whiff of orthostatic intolerance or splitting upright headaches). 

Surgery on the spine is a known risk factor for a dural tear causing a CSF leak, & they don't all heal up spontaneously without treatment, some people can be incapacitated for years, so I was just wondering if this might be relevant to you. Dr Ian Carroll from Stanford has some good videos on youtube if you are interested - he is an anaesthetist familiar with spinal fluid leaks & initially became interested in our population after reading a "medical mystery" case where a young woman with features of a connective tissue disorder & previous spinal surgery for scoliosis, was completely well then became immediately incapacitated with OI & upright headaches after a minor car accident. He felt it was a clear case of CSF leak & was disturbed when the authors called it by a different name (POTS) & deemed it untreatable. 

I am currently waiting to see a specialist in this field and hoping to access blood patching & fully rule this out before moving on to fusion surgery. Scans don't always pick it up especially where it has gone untreated for a long time, & often various different imaging types are needed. 

Again though sorry if you have previously explored this, just wanted to share it in case it may be another avenue for you.

B xxx 

 

[edriscoll]

@bombsh3ll Thanks so much for the info and suggestion.  I have been evaluated for a CSF and it was negative.  But I completely understand the thought - I was told that scoliosis itself can cause the condition and the surgery certainly can.  I'm not the least bit annoyed by your message.  It is always worth making a suggestion to someone in case they haven't examined that particular scenario.  I was not aware of the Youtube video or Dr. Carroll.  The video is excellent.  I think I will post a link on Facebook for our followers.  I think it is worthwhile for people diagnosed with POTS and other forms of dysautonomia to be aware of other disorders that cause very similar symptoms.  I was recently diagnosed with Arterial Pulmonary Hypertension.  Over the years since my dysautonomia diagnosis, one of the many mysteries for my doctors was why one of my constant complaints was difficulty breathing.  I kept reporting that I was fine when sitting or laying down but as soon as I stood up and moved around, I felt that I couldn't take in enough air.  Of course, because I was already diagnosed with dysautonomia, and all of my other symptoms (HR, BP etc.) were consistent with dysautonomia, my breathlessness was attributed to the exercise intolerance common with the disorder.  They did follow-up and do a few pulmonary tests, but didn't find anything remarkable enough to explain my symptoms.  I don't blame any of my doctors for making that call, it all made sense.  It was only when my pulmonary issues began deteriorating did we start to investigate other causes, because, of course, exercise intolerance is not progressive.  It is sort of ironic that one of the big tip-offs was when I reported to my neurologist that I couldn't sleep laying flat anymore because I felt like I was suffocating.  Given that most people with dysautonomia feel better when laying down, this was the red light to look further and consider my heart and lungs.  My point is that it is so important for all of us as patients to pay close attention and keep reporting our symptoms because it is too easy to make assumptions that everything we feel is related to one disorder or illness.  Unfortunately, it is not uncommon for dysautonomia patients to have several illnesses, so the potential for missing something is certainly there.  Thank you so much for the info and for the mention of the video.  It is very interesting.  Thank you also for your thoughtfulness.  Please keep us all posted on your decision and well-being.  Take care.

[bombsh3ll]

@edriscoll Thanks, I am glad you have ruled out a CSF leak. I just wanted to put it out there as although I have never come across another patient like me with a POTS diagnosis whose illness was brought on by a forceful valsalva (although since learning of CSF leaks I have encountered many with diagnosed leaks whose illness started this way), a lot of the things that have been reportedly associated with abrupt "POTS" onset such as car accidents, minor trauma, whiplash, concussion, spinal surgeries etc are also recognized to cause CSF leaks. 

Even more prominent are reports of postpartum "POTS" onset, when in fact the bearing down or inadvertent dural puncture during an epidural could plausibly have caused a CSF leak. 

Perhaps the largest pool of people whose underlying cause could be a CSF leak are those with "post infectious" onset - rather than deconditioning or antibodies it may be that a bout of violent coughing or vomiting during the illness in susceptible individuals could have torn the dura. 

I am so glad that you finally managed to get your Arterial Pulmonary Hypertension diagnosed & treated but sorry it took so long. I think advocating for yourself is so important & it is really worrying how some diagnostic labels, some well intentioned, others bogus can then act as a barrier to having underlying or concurrent treatable conditions investigated. 

B xxx