Found Some Answers To Some Of My Issues With Orthopedic Surgeon

[Maxine]

I could never figure out why radiologists were not catching the instability on MRIs, CTs, and X-Rays. One neurosurgeon reported cervical/cranial instability-(CCI) and pannus growth (aka tissue growth) on the odontoid bone (bony covering over c1-2, another one reported the pannus growth, and the orthopedic surgeon has reported both. When younger people have pannus growth it can be an indicator for instability, verses other folks may have it as a result of rheumatoid arthritis and end up with cranial settling. Cranial settling can also happen from CCI. Mine is a result of EDS. The car accident I had in 1977 probably didn't help since I had a direct hit on the top of my head to the windshield jamming my neck. At the time we had no idea if I had EDS, or what it was. I've had problems with my neck on and off since then.

Dr. Durrani is the orthopedic surgeon I saw today, and he is also the founder of CAST (Center for Advanced Spine Technologies). http://www.castworld.org/our_physicians.html#atig_durrani

He said the reason my MRI reports have not reflected "instability" is because there is no test that will show rotating instability-----when you turn your head from side to side. My head subluxates horizonally, MRIs, CTs, and x-ray will not pick this up. At some point they hope to have a test that can film this while the abnormal movement is happening. This kind of instability happens with some EDS patients. Fortunately there is something else that DOES show on my MRIs to suggest instability, and it's the pannus growth---(aka---tissue growth) on the odontoid bony covering on the c-2 vertebrae. This can come from abnormal movement in this area from friction of the odontoid bone, and this can brush the brain stem.

He said I need a fusion of c-1 and c-2. He didn't push the issue, and said to make a followup appointment in 6 months if I decide not to have surgery. He also said my sleep apnea is caused by the instability, and some of my other central nervous system problems. It's possible some of my ANS problems are related, but the blood pooling and OI is related to the poor vascular tone from the EDS----This can not be fixed.

He also said I have several herniated disks, and some desiccation on cervical, thoracic, and lumbar spine, but didn't seemed concerned about it because they were small herniations. However, the disk between t-8 and t-9 is completely desiccated---(gone), and this needs to be replaced, fused and rods put in. This can be done with a less invasive surgery with smaller incisions.

The c1 and c-2 fusion will be more invasive, and the muscles in the back of my neck will need to be cut, but the incision is around 2 1/2 inches. He doesn't feel I need a cervical/cranial fusion which would require a large incision, and rods to support the weight of my head. I'll still need rods, but ony in the c1-c2 area.

He also said the bulging vertebral artery on the right is making up for the missing one on the left, and this could be why it's bulging. He said the vertebral artery is being compressed on and off when I turn my head too far, or when I have slipping. This can cause me to feel sudden dizziness, and cause other problems, and also cause drop attacks.

I don't know what I'm going to do yet. I need to get the colonoscopy first due to the cancer in my family. I want to make sure everything is A-OK up there first. If it isn't, then what's the point of fixing anything else.

So my appointment turned out well as far as needing explanations to my pain and finding resolutions, but it still isn't great that my spine is a train wreck from the EDS. He got a big kick out of me saying my new shoes were holding my left foot together.

He said people with who have hypermobility with their EDS have too much range of motion with thier neck. He said there's no stopping us-------and one of the nurses said were like those old floppy teddy bears.

Maxine :0)

[mjan]

OUCH~!!!!!! So how bad is your pain?

I am so sorry for ALL you have been going through.

Take care and keep us posted ok?

Warmly, Jan

[Maxine]

Thanks so much Jan---

It's a lot to think about, and I don't need to rush into surgery. It's not an emergency, but the doctor is clearly concerned, and he gave me a prescription for another hard cervical collar to protect my neck while driving. However, I can't where it while I drive. I did drive when I wore my old hard cervical collar after my previous surgery, but I had to turn and twist my mid back a lot to see out the car windows, and that's probably how I ended up killing that disc on t-8-9.

The mid thoracic spine is another concern, and I have no idea when this needs to be fixed, as we didn't discuss that yet--------we just discussed that surgery will be needed because there is no disk there anymore.

Although I have other issues with my spine, these issues are the ones that need to addressed first.

I'm not liking the thought of another surgery, but I'm not sure what other options I have. I also don't like the fact that fixing one area of my spine can cause further instability in other areas of my spine.

UNFORTUNATELY, this will not fix my OI issues, EDS, or my low BP.

Maxine :0)

[janiedelite]

Oh, I'm sorry you have so much going on! Although, I can just picture the old floppy teddy bears the nurse described... Sounds like you have a great surgeon, at least! Not many orthopedic or neuro surgeons have much experience working on C1 and C2. And you're right that fusing one area just puts more strain on the surrounding joints. But it sounds like you don't have much choice! Poor thing! At least you can take your time to think about it. Again, sorry that you have so much on your plate.

[Mary P]

First I'd like to say that I'm sorry for all you're going through. You are indeed a really strong woman. I don't have that same strength at all.

Your post really intrigued and interested me. After reading it, I did a lot of research on cervical/cranial instability, pannus growth, odontoid bone, etc. I'm wondering if, besides the pain, what else you experience, i.e., visual disturbances, vertigo, nausea, weakness, etc? Does looking up or down or sideways cause any of, or perhaps even more, than the symptoms I've mentioned. Do you have pain all over your body?

It's just that I think that I may at least have some sort of CCI. Something crazy happened to me a few days ago. I woke up on my back....a no no for me. Instead of turning on my side, I turned my head sharply to the left to look at the time on a digital clock. My eyes seemed to bobble about and the numbers on the clock kept sliding from side to side I became nauseated, etc, etc.

It all began in 1982 when I fell and smashed the back of my head on ice and got a concussion. Ever since then I've had these problems off and on, but none as bad and as lasting as this recent one. I have never been able to lie on my back for very long without getting severe pain in the back of my head but nowhere else. As with everything else in my life, my doctor paid no attention except to say it was either age or depression.

I found one picture of the odontoid bone but can't figure out exactly where it is. When I first fell and got a concussion, an ENT doctor told me that spurs on the upper vertebrae might be brushing against the ?cord, but my doctor dismissed this, saying there was nothing in the x-ray to confirm this.

I was beginning to think that an MRI might point to the problem and it could be fixed, just like that. However, after I read your post, I realize that this wouldn't show anything anyhow. I'm wondering if a nerosurgeon might be of some help, at least point out what the problem is. What do you think?

You are really knowledgeable and I'd love to hear any thoughts you may have as regards my situation. Thank you kindly for this.

Mary P

[Maxine]

Well, first I'd like to think I'm knowledgable in this, but I really feel lost a lot of the time. I just have experience in dealing with many different doctors, and believe me, most of them have been dismissive. Neurosurgeons are the worst. It's very difficult to see the "instability", so therefore it must not exist. However, one does not get tissure growth on the odontoid bone unless there is abnormal movement somewhere, or at the very least degeneration of some kind. And if the doctor has any brains they would know that degeneration in this area isn't good, and instability will eventually be a factor anyway.

Basically if any doc is in their right mind they would know that you don't dismiss any issue in an area close to the brain stem.

I'm sick of seeing people trying to make thier case with doctors and then end up severely disabled---(paralized), or dead.

Unfortunately some of the NSGs I have seen don't put all the puzzle pieces together, and would rather make me feel like this mechanical instability is in my head---------(if that is possible to have something like that in your head). I know I have something wrong beneath my head.

My symptoms are fatigue, pain, vision problems, sharp pain in lower cranium, weakness and numbness in arms and legs, clumsy hands, balance issues, buzzing in spine, spine pain spreading to the front of my neck and abdomen, urine retention, speech problems, and memory problems ect. It's really hard to list what I feel on a daily basis...........My orthopedic surgeon also said my apnea is part of the CCI. It's hard to tell what is causing what symptom. I have other issues from the EDS and POTS. The more active I am, the worse my symptoms. When my brother was dying, and we were up and down from the hospital and his house my body got worn out to the point of collapse. I tried to keep moving, because if I stopped my body would just freeze, and it was vwery difficult to get moving again. This is extremely difficult when your struggling with the OI that comes from the POTS and EDS also.

I do think I would be less exhausted if I wasn't in pain most of the time, and possibly have less OI. I feel that I could work with it better if my OI was primarily from the low BP and blood pooling from the EDS. Pain tires a person out, plain and simple. The digestive issues also make me very sluggish, and the constant bloat from slow bowels is maddening.

I think the trick is that I try to keep as active as possible or I think I would be even worse. I'm fortunate that I was approved for disability, as working even part time isn't an option. I move so slowly because I have to do everything in parts to leave enough time to rest in between. This is hard coming from a previously hyper person that moves fast and is used to doing mutiple tasks----and this was when I used to work 9-10 hours a day.

I'm still a hyper person locked inside a trainwreck body.

Good luck, and I hope you can find someone who will take a serious look at your problems sooner then it happened for me.

Feel free to PM me for my e-mail address or PH# is you have more questions. I think my EDs doc helped a lot, and he referred me to a orthopedic surgeon who is familiar with the kind of spine instability I have, and who knows some EDS patients experience this. He is experienced with rotation instability, and as time goes on, hopefully some more nsurosurgeons and orthopeadic surgeons will become more familiar with the devastating effects EDS has on the spine, and other areas of the body.

Maxine :0)

[all4family]

Hi Maxine,

I'm glad you got an answer, but so sorry that it wasn't more helpful. It's good though that you have time to think about it. It sounds like you have a very good doctor though. I know it isn't a decision I would want to make. Do lots of investigating so you will be comfortable with whatever decision you make. Take care, and I hope you get feeling better real soon.

Suzy

[Mary P]

Hi Maxine,

Thanks kindly for your offer to contact you directly. Just now I'm not able to do much of anything. I'm always so exhausted.

I misread your initial post and when I responded I had it in my head that a neurosurgeon was best, but now know that you were helped best by the orth guy. I have 3 appointments ahead of me at the moment so will wait until I see my 4th N in June....a movement disorder N. I've been told directly from several of his patients that he's wonderful, and funny. I need a few laughs.

I have an MIGB scan coming up soon and can't wait to hear what those results will tell me. I'll be in touch after that.

I went to a sleep clinic this past Fri and there was horrible music playing all night long next door in a dental clinic....no one there of course. The technician told me that he has told his boss about it but nothing has been done. The dentist goes to our church so I intend to talk to him personally. I can't wear ear plugs.

At any rate I'm anxious to hear the results of this as well. I didn't get to sleep until 3:00 a.m. and was awakened at 6:00 so I could be gone by 6:30. There were 5 other clients there but not a snore or anything but the cra--y music.

Take the best care you can.

Mary P.

[Guest tearose]

Maxine,

I am sorry to hear you have so many spine issues. What did you do to that body of yours? I think you did a lot of sky diving in a previous life.

Actually, is it the EDS taking its toll on you?

Can you do anything to keep the EDS from progressing and causing more herniations?

I ache for you.

take care,

tearose

[Maxine]

Thank you all for your support and responces---

Tearose, it seems to be the opinion of most of my doctors that the EDS is causing the spine problems along with many other joint problems. I haven't posted on my other joint issues like the dislocating shoulder blades, sore knees, the tops of my feet, ankles, wrists ect. Those seem minimal compared to my spine. The EDS is progressive, and there is no cure. I don't know why I didn't have such prominant symptoms when I was younger. My EDS geneticist feels that after I reached age 40, my body just took a bad turn. I was born with the EDS, but my symptoms were more subtle, and I was in better physical condition until I crashed with POTs in Dec. 2000. I was a really active person before doing everything from dancing, frisbee, gymnastics, yoga, to walking several miles at a time. However, I was never really able to run.

Mary P. , two neurosurgeons were very helpful, but not practical for me to continue with. Dr. Heffez is actually the NSG to put me on the map to getting the help I need for my spine, and he did my first surgery. He's a very credible surgeon, and having him take my spine problems seriously helped considerably, as other physicians knew of him and respected his opinion. He seems to look outside the box, and has helped a lot of people. I'm not sure how much he knows about EDS, as he did my cervical spine surgery before my EDS was diagnosed.

Dr. Grubb is actually the doctor that saw my first MRI. I live in the same area, and had my MRI taken at the hospital he works in, so he saw it first. He felt it wasn't normal, and sent the MRI to one of the Neuro radiologists there to get their opinion. I got the call that I should see an NSG. He suggested John's Hopkins, but I went to a local NSG first. This was a mistake, as he was very dismissive, and said the disk on c-5 was barely touching the dura---( the covering on the spinal cord). I knew he was wrong, so I sent my films to Dr. Heffez. He worked at the Chicago Institute of Neurosurgery and Neuroresearch at the time. I heard about him through other people who have POTS. I wanted a NSG experienced with people who have POTS. I went to Chicago for a two day visit of testing, and an appointment. When he came in the room I was stunned with what he had to say.

First, bravo to Dr. Grubb being able to see something wasn't quite right on a poorly done MRI film. New MRIs were done in Chicago, and Dr. Heffez said that one disc was so herniated that I only had less the 5mm of the space needed for my spinal cord on c-4-5. c6-7 was also bad at around 6-7mm. He was stunned, and said I needed surgery to avoid injury to the spinal cord. The surgical report said there was a kidney bean shaped groove in my spine after the herniated disk was removed. I was in seriously bad shape, and the local surgeon was negligent not to see this, or order more films at the very least. I guess he thought I was in there to marvel at the "almighty surgeon" that he was, and possibly ask for some attention. This kind of attention is something I don't want. Dr. Heffez literally save me. I went on to The Chiari Institute (TCI) in NY, as Dr. Heffez felt I had a borderline chiari, but semed more concerned about a bulging vertebral artery on the right. He also said I have congenital cervical spine stenosis as well.

I had no idea yet that I was misssing one on the left---------which makes me understand why the right one is bulging. I didn't know I had fetal origin of the posterior cerebral arteries either. The geneticist from NIH found this on the MRA, along with the radiologist.

Seriously, Dr. Grubb and Dr. Heffez were the docs that started the whole process of me finding the answers. I don't have all the answers, but I don't think I would have found out much had I only seen local doctors. Dr. Bolognese from TCI suspected EDS, and this lead me to finding a geneticist to get the official diagnosis. I also saw a physical therapist MD before seeing the geneticist from Cincinnati Children's Hospital who aso suspected the EDS. The geneticist at the NIH EDs study (Dr. McDonnell) was great, and helped me get further validation. Dr. Bolognese diagnosed me first with the cervical/cranial instability, but felt the chiari was not a big concern. The instability, the stenosis, the bulging right vertebral artery pressing on the brain stem, and the EDS is a bad combination. That other herniated disks are painful, along with the desiccation on t-8. I think more of my other symptoms come from the instability, but the prominant pain is from the stenosis, the disk disease, and desiccation. I'm sick of pain-----AND, I can't tolerate pain medications. Tylenol, ice and massage is it for me.

I have seen a few other NSGs closer to home, and all were dismissive. I wouldn't exclude all NSGs, as you may find one that fits.

I truly have a lot to think about, and really afraid of surgery. This one be as easy as the first one, and the first one wasn't a picnic. I actually need two things fixed, but afraid it will just cause a domino effect to the rest of my spine.

Maxine :0)

[anna]

Hi Maxine,

Can I ask if you have ever had a MRI in one of the new 'sit up' MRI mechines?! We have such an MRI in London and I really wander if this might show up my daughters problems better than a normal type MRI, I would be willing to pay for this type of MRI if it was likely to show her problems up as we are really going mad with orthapidic Dr.'s telling us my daughter is making it all up and that it is imposible to have such symptoms without huge truma!!!

Anna

[Maxine]

Hi Anna,

I know some people have gotten one of those sitting MRIs done. It does show more because gravity changes things when you sit or stand. When I stand I almost feel a gravitational pull at times, as I'm sure many people with POTS feel. However, it's a little different meaning it feels like my joints are pulling apart too. Lately my feet have been giving me trouble.

A couple days ago my right knee started bothering me. Both kness usually do, but the pain is tolerable. I have two granddaughters, and one of them is just over a year old. I can not pick her up, but I sometimes pull her up with my leg while I'm sitting to pull her in my lap. Well, I think this might be a problem now----

I'm so sorry the orthopeadic surgeon is dismissing your daughter's complaints. This is actually pretty common with patients who have spine instability because it's very difficult to see on x-rays and MRI unless some obvious trauma has happened.

Rotation instabitlity is especially difficult, and most NSGs have thought I was misinformed, or trying to get attention. I have to admit, I would rather the docs think I'm nuts, then have this instability be real. This is a nightmare! People with this have a difficult time making a decision to have surgery. It fixes the instability, but sometimes they end up in more pain, or it causes more instability below the area. I'm realizing that EDS is a very serious disorder. It's not that I didn't take it seriously, but as I learned more about it, I found that EDS can cause some life threatning problems for some people. The woman that lives in my town was on TV with the extreme home makeover. She has EDS, and she has had serious strokes.

I wonder what a sitting MRI would show? It stll won't show rotation instability.

There's nothing worse then having your head subluxate sideways several times a day, and you go to a NSG with hope they will believe you and they don't. This also makes it more difficult for friends and family to believe you. This is part of that nightmare I told you about. It's an isolation that feels like no other.

Maxine :0)

[anna]

Hello again Maxine,

I am not sure what an upright MRI would show, but my daughter uses a traction coller with some sucess, so I thought she may be compresing some artery, the problems tend to happen when she is tiered or if she rides over a bump in the car etc. Also if she turns her head too far left it will cause problems.

I will be having a word with her paediatrician in April to see if I can get a referal to someone that has some idea of these problems!!!

Anna

[mkoven]

Hi Maxine,

I'm sorry to hear everything you are dealing with.

Sadly, this is suddenly very close to home. I saw Dr. Francomano yesterday, the geneticist who has worked with Dr. Mcdonnell. She also thinks I'm having brainstem issues from eds or a variant of eds. I recently had a cervical mri, which the neurologist here said showed bad discs--a lot of herniations, bulges, dessication, but nothing surgical. I went to see her because my tongue goes numb when I turn my head. She wasn't particularly concerned. I don't show chiari lying down.

Well, Dr. F saw pannus overgrowth (neuro didn't) and wants the mri redone upright, to see if I have any unpright chiari or tethered cord. So no answers yet. But Dr. F said tongue numbness means compression of a nerve coming off the brainstem.

It's hard to have a rare syndrome that most doctors don't know much about. It makes it hard to be listened to. I hope after we do the tests that all will conclude that my brainstem is not getting pressure on it-- I really do. I feel like a pandora's box has been opened. And I really don't want surgery of any kind. But I'm getting ahead of myself. I first have to get the scans. But I'd frankly prefer to pretend that nothing is happening. Like you, I have a bad spine, with bad discs top-to-bottom, and previous surgery at L5-S1. Sometimes surgery is necessary, but it's a bummer to think that it just fixes one local problem. the larger process (weak connective tissue) is still on the loose. And it's much more disturbing to me to think about instability at my neck/skull than lower back.

[Maxine]

mkoven,

I'm sorry your part of the club of unstable necks near the cranium. Dr. Bolognese was the first to see the pannus growth on the odontoid bone in July 2004. Now it has been validated by three other doctors.

"The odontoid process is a peg-like structure of bone that's part of the C2 vertebra. It sticks up inside the C1 vertebra, which is shaped like an open ring."

It's really hard to find information on CCI (cervical/cranail instability), and anything you do find is usually related to rheumatoid arthritis and cranial settling. Here's a few I found that mention EDS:

http://thejns.org/doi/full/10.3171/SPI-07/12/601?cookieSet=1

http://www.jaaos.org/cgi/content/abstract/14/4/233

http://www.thefreelibrary.com/MRI+video+di...e...-a070379128

http://laurieyeh.blogspot.com/2008/04/mont...oadcast-on.html

I have been working with a couple of my doctors on some issues I've been having with pressure headaches when I cough, strain, or bend.

Yesterday I strained---(sorry), and almost passed out, and had a headache since then. I had to pound on the sink to bring myself around---------it was pretty scary, and I'm so stunned I layed in bed depressed until 1:30 in the afternoon today.

No one understands this, and what it's like to live like your a floppy puppet.

Maxine :0)

[mkoven]

Are they having you do anything to slow down the settling--like a brace, or pt to work on any type of stabilization? Dr, Francomano talked about these, as well as traction. We won't know the full story till I get my upright mri next week.

[Maxine]

I need an upright MRI, but they don't have one here in NW Ohio. So far I don't have cranial settling, just the instability which isn't good either. It's pretty bad to have either of the two, and worse if you have both. A sitting MRI might show quite a bit more. I know it has for others. I was told I need to wear my hard cervical collar in the car, and only on really hard days for me. Otherwise the doc doesn't want me to have poor muscle tone in my neck from wearing the collar too long-----------then what would hold my head up? The joints and ligaments sure don't---- .

It's amazing how quickly I deteriorate after getting up in the morning. I have to lie down just after bathing----I get so worn out sometimes just from sitting.

Maxine :0)