Neurosurgeon's Appointment

[Katybug]

So I met the quite dapper Dr. Henderson yesterday. He was quite pleasant and very informative. He also had a student with him and did a great job incorporating educating her while conducting my exam and assessment. So, the long and the short of it is I need to have 3 cervical discs removed, replaced with donor bone plugs to create a fusion and then titanium plates will be attached to fuse C4-5, 5-6, 6-7. Although there are some problems at C3-4, he said he would rather not fuse that area unless it becomes absolutely necessary because that would seriously limit my range of motion. He encouraged me to get a second opinion before committing to surgery and even gave me a name of a Hopkins doc. He listened and answered all of my questions. He also did his dictation while I was there to clairify anything either one of us needed. I am going to get a second opinion because it can't hurt but I know I need the surgery. The only thing that scared me yesterday was how dismal my neeurologic exam has become. I have had a positive Romberg test for a while but now I can't walk heal to toe (which I have never had problems with before), and when he checked me for nystagmus and eye tracking I almost fell down because it made me so dizzy. So, here's my next Pandora's box.

[valiz]

I'm glad you had an informative Dr. visit. I wish you the best as you explore your best options.

liz

[Chaos]

Wow Katybug!!! That's a big step. Sounds like you are having some really significant neuro symptoms although I don't think of those particular symptoms as being related to cord compression at the levels you're describing so much. One other thing to consider is that when they fuse certain levels, the levels above and below will take even more stress so if you are already having problems at C3, you may find that area becomes even more problematic.

I've heard a lot of really good things about Dr. Henderson so glad you are seeing him. Also think it's good to be getting a second opinion when you are talking about something this major.

It's a lot to be processing right now and I'm sure your head is buzzing with all the thoughts running around.

Sending you lots of good thoughts and best wishes and gentle hugs.

[HopeSprings]

Hi Katie. Can I ask what MRI shows in terms of those discs and why he feels removal and fusion is needed? Also, what symptoms he hopes to improve with the surgery? I've always suspected my neck, but would hate to go through something major like that and not be better, or even more concerning.. potentially worse or add in new problems. It's good he suggests a second opinion.

[badhbt]

Did he think your neurological symptoms were from your neck problems, or from the dysautonomia?

[sue1234]

I'm curious about the same things Naomi and Badhbt are. I have some cervical stenosis around that area and always wondered what it contributed to my symptoms. I really need to see a doctor about my whole scoliosis, somewhat twisted torso. It has gotten worse with the years of sitting from POTS.

Definitely keep us updated on this whole journey.

[gjensen]

I like the way your Neurosurgeon sounds. It is refreshing to here.

[Katybug]

Ok....I'm gonna try to answer all of this but my brain is running on "slow" today. And, thanks for the support. So, I have most of the typical symptoms of cervico-medullary syndrome: bell's palsy on the rt side of my face coinciding with my migraines, migraines with pain at the base of the skull and jaw pain, hyper reflexes in my arms, nystagmus that worsens on flexion of my neck, balance issues, unable to walk in tandem, tremors in arms and hands, depth perception issues, hyperacusis, light sensitivity, olfactory sensitivity, and autonomic dysfunction. There is no way to know if the autonomic dysfunction is caused completely because of my spinal compression, so there is no way to know if or how much it will improve from this surgery, but, it's possible I will have some degree of improvement as the spinal nerves at C3-4 and C4-5 are involved in some autonomic function. Same goes for the migraines as there could be other causes of my migraines besides this, but, again we expect at least some improvement. The other neurologic symptoms we expect more improvement as they have seemed to progress at the same rate of deterioration we've seen in my diagnostics. He actually thinks C3-4 may improve as he will be repositioning the vertebrae supporting them into proper alignment and there will also be PT before and after surgery which should also help stabilize the area.

As for the mri report, it actually seemed to minimize what is really going on in my neck. I knew going to the appt that C4-5 would almost certainly require surgery based on the report but when we looked at the images together I was rather shocked and also thankful to a have a doctor who is thorough and looks at the imaging himself. Generally speaking, your cord looks like a straight tube running through your vertebrae. In my cspine it looks like a worm or a really curvy road because the herniated discs and the subluxed vertebrae are moving it this way and that. The images were up on the computer before the doc came in so I was sitting there looking at it and thinking "well, it doesn't take a rocket scientist to see how messed up that is." He has software that allows him to click on different points and take measurements and angles. Apparently anything over 11 degrees on the angles is considered pathological. The 3 we are fixing are all at 13 degrees. The one we are holding off on is just a smidge over 11. There was also a measurement he took that showed that my cord is being overstretched in flexion but I can't fully explain that because at that point in the process my mind was being overstretched. Lol! I was actually pretty surprised how "understated" the report seemed. I'm sure they see worse but it was pretty clear it in not a healthy state. The biggest concern is that C4-7 are so subluxed that I am at much higher risk of serious (paralysis or death) if I have any sort of traumatic event because of the already existing instability. Then other concern is that this kind of spinal compression is what he calls chronic trauma in his talks he gives on this. The spinal nerves are being chronically traumatized and the longer it stays in that state the less chance of correcting the nerve damage.

Ok...that's all I can think of for now so let me know what questions you have. I'll definitely gives updates as I finish each leg of this journey as I know several of us have suspected our necks being problematic through the years on here.

[blueskies]

Hi Katybug,

Three years ago I had a laminectomy done at L3-L4 level and that's nowhere as serious as the challenge you have been presented with. I do wish that I'd thought to ask, or that someone had told me, what I would experience after. Things like how I'd have to lie on my back with a tiny pillow which bought on a severe migraine that totally negated any pain from the back operation for the duration of the migraine. That a thoughtless (or harried overworked nurse) would forget to leave the 'help buzzer' near my hand so I was unable to call anyone for help, for a number of hours, while unable to move. That they'd give me self administered morphine for relief (press the button and the drug was delivered IV) -- I hate morphine, it gives me the 'horrors.' And which also meant that when I decided I couldn't tolerate the morphine anymore I was pain relief free until it had washed out of my system for long enough for me to be able to take an alternative pain relief med. Also that I would need to pee in a bed pan which I was unable to do, panicked, and agreed to a catheter which gave me my first UTI in my 56 years and which now recurs. If I'd know that a UTI would be a possible result of a catheter I would have waited longer to see if I could pee.

I requested my neurosurgeon consult with my pots doc before I had surgery and as a result I was supplied with these things that would blow up around my ankles (sorry for the bad description) and then deflate which kept my blood pumping better until I was able to get up on the fourth day to shower and pee after having the catheter out.

In hindsight I really needed to know what to expect straight after the op. Not just that I'd probably be able to walk pain free weeks later - which is all the neurosurgeon offered me about post op info when consulting with him before having the surgery. Many surgeries bring post operative pain and new and not very nice experiences but surgeons, I've found, often aren't real good at keeping the patient informed of this stuff. Some knowledge would have made me more prepared and feel less powerless when I was flat on my back and unable to do anything to help myself. Plus I could have made arrangements for someone to come in and feed me for the first 3 days. I was unable to see over the top of my bedtable, let alone reach the food that was left for me 3 times a day in order to eat. Day 4 was when I was well enough to sit up a bit and feed myself. I was a private patient in a private hospital in Australia -- a hospital that I'd been in before and always been okay in. This time around I was just helpless and the hospital protocol for this operation seemed severely lacking.

You may have had more surgery than me -- I'd had some previously -- and know to ask these sorts of things but just thought I'd offer up my experience that would have been a lot less stressful had I'd been fully informed. And it does sound like your surgeon is a heck of a lot more forthcoming.

blue

[Katybug]

Blue,

What was the ultimate outcome of your surgery?

[blueskies]

Hi Katy,

It was good, I'm happy to say.

I still have 'faint echoes' of the pain I was getting before and I might sometimes accidently turn a leg in an awkward position that will cause that faint echo of pain. I just go 'ouch' and get my leg into a more comfortable position and pain resolves.

My pain before op was in both legs and my bum (I could only shuffle, not walk, and I couldn't climb stairs at all eventually, I had to crawl up them). I could not twist at the waist without getting the searing pain which would make me scream (a short sharp scream, completely involuntary, when the pain caught me unawares). The pain I was getting was caused by the 'slipped' disc, and fragments of it, pressing on nerves. That's all pretty much gone except for that slight echo pain occasionally. Knock on wood.

I do however get pain at the site of the now healed wound of the surgery but I've had that same sort of bearable, intermittent, pain ever since the birth of my second child, 36 years ago. She was born, and so was my back pain. It was too coincidental to be anything else but her delivery. It is completely bearable but things like vaccuming or scrubbing the bath will bring it on. A lie down afterwards gets rid of it quickly. As it has done for 36 years. The new thing is that sometimes the site of the surgery will get sore when I sit a certain way or have not exercised for a while, but not anywhere near what I think of as painful levels.

blue

[Katybug]

Blue,

Glad the surgery worked. I reread your original post...finally realized your issue was lumbar spine. That's a much harder more painful area because of the weight load that area carries. I actually have/had a bulging disc L4-5 that would rub my sciatic nerve when it was inflamed. I did it when I was 19 and had occasional flare ups but it hasn't bothered me now since 2004. (I probably shouldn't have said that out loud! LOL!)

I try not to anticipate problems. I go into things with a positive outlook and roll with the punches. It keeps my anxiety down. The last surgery I had was an emergency removal of a lodged kidney stone and I was so relieved to get that anesthesia I forgot to be scared. Interestingly, I don't actually have pain in my neck except at the base of my skull when I have migraines. It just these progressive neurologic symptoms. I think that's strange but I'm not complaining.

[badhbt]

Katybug,

I had a C1-C2 fusion. I was pretty much in your situation, no neck pain, but obvious spinal stenosis. I was pretty much a walking time bomb as far as paralysis/death. I had put the surgery off for years because it is hard to run out and have surgery when you don't have any symptoms. Then the POTS hit...this is before I knew what it was. I had 4 opinions and 1/2 said my symptoms were from my neck the other half said no. Either way I am glad I had the surgery....and really I have POTS to thank...haha. As far as my symptoms go, they slowly got better and after a year and a half are way better. I also went gluten free so I am not sure which really helped the most. Anyway I don't regret the surgery...it was a bear to go through, but you don't want to mess with the spinal cord. I believe your surgery would go through the front of the neck and recovery might be easier then mine. I was in a neck brace 4 months post op, night and day. It got a little old. Please keep us informed. Let me know if you have any questions at all. I hope you find relief soon.

[Katybug]

Badhbt...I know C1-2 is supposed to be a much more difficult surgery/recovery. Doc actually told me if I had to have something go wrong, the place I have it is the best in the way of surgery and recovery. He said it's way easier. He also gave me a pamphlet he has made for this surgery and he actually discourages wearing the neck collar after week 1 except for car rides so that the neck muscles do not decondition. And yes he will be going through the front of my neck. 2-3 inch incision. I will be in hospital 1-2 days. Have to eat soft foods like mashed potatoes, applesauce, pudding for the first week due to swelling in the area so I don't choke. PT sounds like it starts right awayas well as pre-op to strengthen my neck going into surgery. Thanks for the encouragement. :-)

[bellgirl]

I've heard of this surgery and others who have had it, and wonder whether it is something I should consider, since I have kyphosis, and wonder whether some of my dysautonomia could be improved by this. Wishing you the best in the decision that only you can make, but I would definitely go to another doctor for a second opinion. I'm glad the surgeon you went to has a good reputation. Make sure you have someone that can be with you in the hospital and afterwards, because you will need the help. I hope all goes well. Prayers for the proper decision and for the surgeon to only do what is necessary, and for your healing, if you decide to go through with it!

[Katybug]

Thanks bellgirl! I know it's not an easy decision to make normally. But I am so disturbed by the deterioration in my neurologic exams that the surgery actually seems less scary than the existing problem. Both sets of my parents will be here for surgery. ...my dad said hewill fly in from FL for it. I'm lucky that I have a lot of support. My besties have also offered whatever support I need. I really am blessed and feel positive about this situation. I got the call this morning that my second opinion appt will be on Apr 1, things are moving along. My friend pointed out that maybe I shouldn't have made a doc's appt on Apr 1! Lol!

[HopeSprings]

Katie, would you mind sharing what was seen on MRI, how radiologist reported things versus what Dr. Henderson saw? Just curious how off the radiologist can be. I actually had the opposite where the neuro-surgeon said things weren't as bad as stated in the MRI reports. Mmm, my symptoms say otherwise. The Doctor I saw is not well versed in the things we're talking about though. Please let us know what the second opinion Doctor says. Is he knowledgeable about EDS? Glad to hear you have family support if you do have the surgery.

[Katybug]

Naomi...I will pull the report information and type it up late tonight when I'm on my computer and not my phone. I wish I could put the one image up but I don't have a clue how....it was really obvious even to the untrained eye. I don't know for sure if the second opinion doc knows about EDS but I would imagine he does as Dr. Henderson is very aware of it and he seems to hold the other doc in high regard. I watched a lecture Dr. H gave at an EDS conference where he stated that although the CDC reports that ~10% of chiari patients have EDS comorbidly, he finds that ~50% of his chiari patients also have EDS and that he believes if there were better education about how to diagnose EDS the CDC number would be closer to his. This makes me think he would refer to docs that have some understanding of EDS....but I could be wrong.

[badhbt]

You will do great. If you can survive all of those symptoms, the surgery will be just another hurdle to recovery. I am glad your surgery sounds like the recovery is better than the surgery I had. One thing dysautonomia makes you pretty strong!

Hang in there

[roxie]

Great to hear katy bug! I have an appointment with dr henderson in May. I'm so anxious for it. I'm glad you had a good experience & I'm praying mine is just as good. Good luck with your surgery.

[Katybug]

badhbt - Thanks for the encouragement.

bananas - Good luck to you as well. He's really one of the good guys.

Naomi -

Here's the report verbatim:

FIndings:

There is again noted to be mild discogenic disease spondylosis and diffuse posterior bulges from C2-3-C6-7. There is a tiny central HNP again identified at C3-4 which impresses on the ventral aspect of the thecal sac. There is interval increase in size of the central HNP at C4-5 inpressing on the ventral surface spinal cord. Previously described right paracentral HNP at C5-6 has resolved. There is no central canal or neural foramin stenosis. There is kyphotic angulation at C4-5 which worsens in flexion and resolves in extension. The cerebellar tonsils are at the foramen magnum.

Impressions:

1. Compared to prior examination performed November 2012 there has occurred interval increase in size of the central HNP at C4-5 which now impresses on the ventral surface of the spinal cord.

2. A tiny central HNP is again identified at C3-4.

3. The previously described HNP at C5-6 has resolved.

4. There is kyphotic angulation at C4-5 which worsens in flexion and there is 3 mm of anterolistesis at C4-5 in flexion.

What the doc and I discussed:

1. The discs at C3-4, C4-5, C5-6, C6-7 are all pressing on my cord. C3-4 is the least out of place. (Note the report said C5-6 has resolved...NOT at all correct. And, it only made the one disc at C4-5 sound at all important but C4-5, C5-6, C6-7 are all basically impinging on my cord by the same amount.)

2. All of the vertebrae from C4-C7 are subluxed (kyphotic angulation) at angles that measure above the 11 degree cutoff for acceptable vs. pathological position. The doctor measured them using software that allows him to measures images from the MRI for things like angles and distance from one structure to the next. He did this in front of me during the visit so I saw for myself what the measurements were. Mine were 13 degrees for the 3 areas he and I talked about fusing. 2 degrees doesn't sound like much but it really is quite a lot if you consider how small of an area we're talking about. (Note the report only spoke of this problem at C4-5 when it truly exists at 3 areas and actually there is minor change at C3-4 as well but again not enough that he wants to fuse that just now.)

3. He also measured the length of my spinal cord in different positions and found it is being stretched in flexion inappropriately. (This explains why I experience certain symptoms only when I have my head flexed down for reading, cutting vegetables, etc.. Note the report doesn't even approach this subject.)

I'm not saying the radiologist did anything wrong. I do think, now that I've viewed the images myself, that some of the issues were obvious that were either missed or minimized on the report. But, this is another pretty specialized field so I don't know how well trained a radiologist would be for something like this.

[corina]

Katy, I was pretty sure I wrote a reply to your post but can't find it anymore so I must have forgotten to "post". Sorry to hear about this major surgery, I hope things will go smoothly and that you recovering will help you feel on the up again! Keeping my fingers crossed for you!

[HopeSprings]

Thank you for posting that, Katie. That actually sounds a lot like my neck, but the guy I saw said these were common changes that often happen with age and I guess not a big deal. I'm not sure whether I believe that or not. This started in my 20's/30's. Please let us know what second opinion neuro says.

[HopeSprings]

Oh and I saw this video recently of Dr. Rowe and at one point he talks about the case of a young woman with POTS. It sounds like a cervical disc replacement solved her problems. Is this really possible? It's right around minute 46, 47.

https://www.youtube.com/watch?v=UCbWEKQHjdk

[bellgirl]

I find all this interesting, especially since I found out about my kyphosis by accident on a chest xray after coughing up frank blood in 2004. I've always had trouble with my neck, it is very long and only 11 and a half inches around, where the average neck size is 16 inches for a woman. I can't sleep on my stomach because of it. Turning my head to the left is harder for me, my neck is always popping, and standing up straight is just not an option. I have more problems with vertigo looking up or looking down, in fact, just yesterday I was getting my sheets out of the dryer looking down, and I fell to the right into the wall, and knocking over my gumball machine! Thank goodness my husband was right there to catch us both! Lol.

I'm glad you have a lot of support Katybug, because you will need it!! Don't be superstitious about your appointment date. Keep us updated on how it all goes!! I sure hope it helps your symptoms a bunch; you are young and will heal quickly. That MRI is very telling. I believe it could definitely be a factor with your symptoms. I'm not a radiologist, but being a nurse, and taking care of lots of children after scoliosis surgery, I know a little bit about it. I'm sure you'll do just fine. Through the front of the neck is the best way to go with the cervical spine, and I believe you will make the right decision!