Fusion or no? Advice please.

[annapurna]

Originally Posted by Maddie

Annapurna, this is exactly where I am. I am scared silly to wait much longer, but at the same time I don't want to rush out and do the 'quick fix' that will come back to bite me later.

I'm worried that it is time to rush out now. Either you'll rush out now and choose the path you want or you'll be rushed to hospital after you lose continence/bowel function/swallowing/etc. and have whatever is available chosen for you. I'd pull out the stops to get your second opinion and decide upon a date. If you don't have an opinion by that date, you'll choose the best option available to you at that point. Use your local doc to agree upon a drop dead date if you can so it's realistic but put a deadline before you so you're less likely to end up with a emergency room doctor making your choices.

[Maddie]

Hi Lynda,

Yes, could you please find that information for me? I just found a Dr. Rampersaud in Toronto, and spoke to his assistant this morning. He does ADR, but that's all I could find out from her, not if he does multi-level. etc. She did say that he uses the Maverick, which is great, but that the province does not pay for the discs themselves, just for the 'labour'. Each disc costs about $4000, she said, and many patients couldn't afford them.

I asked my GP to fax a referral to him asap.

The Ontario Ministry of Health originally told me that no one in Ontario does ADR, but I found out from the Access to Information, the Privacy commission, that over 130 ADR surgeries have been done here, many of them multi-level. So that office is of no help to me. Most of the specialists' offices hang up on me if I ask about ADR, saying it is not appropriate and I am wasting their time. Today's was an exception, and I am hoping to see him within three months.

None of the specialists I have spoken to here know of any ADR specialists in Ottawa. London, Ontario has two, but the one I spoke to said that he only does lumbar, and very few of them, and if I had any arthritis in my facets, that I would not be a candidate. Doesn't almost everyone who has DDD and is needing new discs have arthritis?????

The other fellow only does cervical discs, and again, has over a year's wait list.

Yes, I have balance problems ;-) I have fallen down at least a dozen times this year, just walking on an uneven lawn. I fell and broke my ankle just walking across the garage a year ago...klutzy is my middle name!

I have had very bad cases of vertigo this past summer, lasting for a week or so. I underwent numerous tests with an ENT specialist, but with no results. It comes and goes, and makes me very nauseous.

Did your doctor associate yours with your cervical discs? Thanks for the suggestions. I will start another thread, although my very first one the other day was asking for information from Canadians, and I have not received any responses to that one.

[Maddie]

Annapurna, just how quickly can things deteriorate, before it is an emergency? I ask this knowing you are not a doctor, but wondering if you have had specific experience with this.

I just called to see when I could get a follow-up appointment with the neurologist who ordered tonight's MRI, and was told it would be at least three months. Three months before I find out what is on this second MRI, and what changes might have occurred over the past year. This is the doctor that told me things are getting rather urgent. And yes, I am on the cancellation list.

What I want is ADR done by a German hospital. Everything I have heard about them has been stellar. Unfortunately, I don't have $65,000 laying around. What I am doing now is trying to find an alternative option in case I lose my appeal with the government insurance next month.

[annapurna]

Can you request a copy of the second MRI and try sending it to one of the German clinics or a Canadian/US doctor that's willing to review the MRI for a fee?

I have no idea of how fast things could deteriorate and I hope that I'm overreacting. I've heard before that cauda equina syndrome, when the end of the spinal bundle is compressed down in the L-spine and you begin losing bowel function and continence, is considered an emergency situation, so I'm worried that you're near or on the edge already and a minor inflamatory flare-up or a just a little more compression might land you in serious trouble.

[berry]

Maddie

I've tried to phone Canada but there's no reply so I've sent an email. I'll get back to you when I get any info. I am so sorry you are having to go through all this and will have to wait so long for the results of the latest MRI, it seem absurd when you sound an urgent case. Over a years wait for cervical ADR too! Sounds like our NHS a few years ago; it has improved now and waits are down to 18 weeks from referral. (Just for your info a double cervical disc replacement would cost around £18,000 privately here in England.)

I empathize with you about the vertigo and nausea, for me that was one of the worst symptoms. Like you I was sent to ENT and audiological physicians for vestibular studies. My case was complicated by the fact that in 2006, whilst being considered for cervical fusion, (before my surgeon performed cervical disc replacments) I was diagnosed with the brain tumour (successfully surgically resected). It wasn't clear what was causing the vertigo, the vestibular studies were normal although there was some nystagmus. By the time I'd recovered from the brain surgery my surgeon had begun cervical TDR. I'm sure the vertigo was due to the c. spine as I've had no problems since the cervical surgery. My legs too feel better as a result of the op and I no longer bump into walls.

If its any help I was first offered cervical fusion in Nov 05, the surgery was delayed because of the brain tumour and by the time I had recovered I finally had the cervical op done in Feb 2008. I did worsen symptom wise over that time scale so I can understand to some extent what you are going through and how scary it feels.

Will be in touch

Lynda

[Maddie]

annapurna, I was concerned about the cauda equina syndrome too, but the doctor doesn't seem to be worried about it so far. I can't tell about bowel problems, because of the constipation problems from 300mg or so of morphine I'm taking daily. (Sorry for too much information). I suspect I would have problems there too if not for the meds.

Somehow I don't take the doctors' word as gospel most times, as each has a different opinion. So yes, just because one has said not to worry about it, my mind is not at rest.

That is a great idea, sending the new MRI off to compare with the first one. At least I'll have some idea as to how fast things are progressing.

The vertigo seems to have stopped for now. I don't have any idea what caused it. I have developed a number of serious allergies in the past few months though, including wheat, rice, and other things not related to gluten. Two weeks after eliminating wheat from my diet, I was sitting on some bales of wheat straw (we have a small farm), and I went into an anaphalactic shock, and was in hospital for six hours on IVs and drugs. I'm allergic to most medications, including narcotics as well. Short acting morphine is all I can take for pain.

ADR and/or fusion surgeries here in Canada take four to seven hours for one disc. The surgeries for multi-level in Germany are under two hours, according to patients I have met. I want to avoid complications from extended hours under general anesthetic if at all possible. One more reason to have it done overseas.

Lynda, thanks for calling on my behalf. I would really appreciate the information as soon as you get it. I"m glad the surgery took away the vertigo for you.

[berry]

Hi there Maddie,

Still not heard anything back from my relatives but I understand the surgeon below performs cervical TDR. (I have read research papers of his.) I know London is further way from you than Toronto though. Was he the surgeon you spoke to already? Perhaps if you contacted him he could recommend someone in your area although it sounds like there may not be one near to you?

Neil Duggal, M.D., Division of Neurosurgery, Department of Clinical Neurological Sciences, London Health Sciences Centre, 339 Windermere Road, London, Ontario, Canada N6A 5A5

Lynda

[Maddie]

Thanks Lynda,

Yes, I have talked to Dr. Duggal's office. He does have a good reputation. Very nice staff, but they basically (very bluntly really) said I would be much better off going to Germany. It would take at least a year to get in to see him, and he only does cervical, but at least does multi-level. The surgery would take four to seven hours, and he does not have other specialists in on them as the German hospitals do, like vascular surgeons, in case anything goes wrong. I have great sensitivities to general anesthetic, and a surgery that long would put me at risk.

He has also done less than one hundred surgeries in over seven years, and only half a dozen multi-level. I would like to have someone with more experience, if possible. I know, I am running out of time....and may not have the luxury of being that choosy.

Do you or anyone else know how long the 'average' one or two level surgery takes in their area?

Could you give me some links to his research papers that you have read? This might help me a great deal in my appeal.

You are going to a great deal of work for me, and I sincerely appreciate it.

[annapurna]

From personal experience and my wife's experience, if you go to Germany, try Pro-spine. I can't say anything one way or the other about Stenum, maybe Terry could chime in on their experience, but the Alpha Klinik's anesthesia is a little harsh. Between my wife and I, we've had close to a dozen experiences with their anesthesia and every one tends to be a little harsh compared with surgeries done elsewhere. Also, whatever you do, get your weight in kilos correct. As you're in Canada, you're not likely to have the problem with pounds that those of us in the US had but if you get your weight wrong the anesthesia is horrible (personal experience there).

Laura's one operation with Pro-spine didn't have any of the problems with anesthesia that she normally expects and their anesthesiologist is quite a bit better than most we've seen.

[berry]

Hi there Maddie

My cervical double disc replacement took less than 2 hours, the lumbar double took longer, but less than four hrs. My surgeon has an excellent reputation and has done over 300 disc replacements including two and three level surgeries.

I will try my best with the research papers, I 'm afraid I didn't keep the
links, I have some printed out copies I could send you. Pm me your address and email address and I'll see if I can find something that may help you.

Good luck with all this. I know nothing about the Canadian Healthcare system, would they contribute to the costs of surgery abroad if its not available in Canada or is less expensive abroad?

Lynda