Newbie,,,short notice need answers

[PepsiDoodles]

yes same Panchal, no he is does not have the most amount of years, but is highly recommended in this area, as well is the only Dr that treats patients with my disease Chairi Malformation (hereditary) along with Syringomyelia from c6 to T1,,he does the most difficult cases no one will touch in Northern CA....I have been to 6 others,,as well.

My spinal stinosis is due to a car accident back in the early 80's, as well as other spine issues.

I did call my other neurosurgeon in Oregon who used to be one of the head in research for this to consult with him on it, Dr Neuwelt, now ones of the heads at OHSU, as good as they come, as well my dr agreed to with him as well.

Dr Neuwelt called me this afternoon and agreed with him on the procedure as well the necessity and said I would be in the best of care with Dr Panchal, which meant allot coming from Dr Neuwelt for me, and was a no charge consult, he has treated me for many years and is well aware of the conditions am dealing with.

So yes, I do feel he is qualified enough for this,,but am questioning myself weather or not to let myself just go paralyzed and pass from it, as it will shut down my nervous system also. And try to enjoy what little time I have left.

Or go through with it and pray for the best outcome, that will for sure be a much lesser quality of life and will include some partial paralysis in the arms that is a given, as well the feeding tube most likely..

Just do not know what to do I have no question about his skills, have a few apts he is setting up as well a psych apt as is necessary for this type of surgery should I decide to go through with it all...

Besides myself what to do

[theBadCormorant]

As long as you're alive there is hope so don't give up - you are due a bit of good luck so may be the op will turn out much better than you think.

In any case I am sure surgeons give worst case scenarios to cover themselves, they wouldn't do it if they thought they would leave you worse off.

never give up.

[PepsiDoodles]

He and Neuwelt both said will loose partial arms use of both arms and will more than likely be on feeding tube forever, that they both said same on and I love to eat and cook and I am a great cook to,,,just so sad right now, sorry having a huge pity party

[Maria]

I'd be thinking all the same things as you are and having the huge pity party too. All the same wishing you the best with any decision you arrive at and I personally think all too often spine and other surgeons don't go into worse case scenario unless truly there is very strong possibility of something happening and they truly want the patient to know while the option of not doing surgery will likely render severe consequences the option of having the surgery is not without potentially severe consequences as well.

It boils down to does the benefit outweigh the risks. Clearly it appears your previous doctor and one treating you now must think so or at least that it's worth the risk as long as you're clear on "potential" risks.

You do not have any easy decision to make though I understand your considerations and what you're thinking. Meanwhile just do what you need to re prepping for surgery. Ultimately you have the last say on following through.

[PepsiDoodles]

Thank you Maria, yes, been a hard thing to sort out for sure was wondering if anyone else has had something this invasive done all at one time, and what the outcome was?

[Maria]

I worked as an RN/NP and I always advised people not to have let's say two bunionectomies at the same time or cervical surgery and lumbar surgery at the same time if whatever was ordered was elective surgery. When it's of an emergency nature then I feel it's the surgeon's call however I also feel that a number of 2nd opinions would be requisite (time permitting) if it were me having said surgeries...

Now .. because it isn't me and because I do not have the conditions you do nor am I in any way knowledgeable enough to even comment on your situation as to whether you should or whether you shouldn't with exception to whatever I've already commented I'd at least recommend visiting some other well traveled spine websites and also recommend that if you've not spoken directly to mmglobal perhaps you should as Mark may just be able to be enough of a sounding board to maybe help you out a bit more than any other of us could that are responding.

There is one spine website I'd like to refer you to but for the life of me cannot remember it since I no longer frequent it and haven't for a few years. There is the Massachusetts General Neurological forums that I think "were" incredibly instrumental in helping so many of us especially about 15 years back like when Mark (mmglobal) was making his decision to get lumbar ADRs done.

Please start a separate topic post and reach out to see if someone here that is better updated than myself can inform you or reach out to Mark (mmglobal) and also try the search function.

Are you alone in this decision? I am pretty much on my own and I know that everything is that much harder when we are so please .. keep trying to get your answers~ there are so many people out there that have been thru all kinds of stuff spine wise. You need them.. their input, their support.

Godspeed~ Maria

[PepsiDoodles]

Thank you so much Maria! Yes I will tey to email Mark mmglobal, as well look into the other forums,,, Yes am by myself, have a friend who will fly in before the surgery and stay to help once out of hospital should all go ok if I do it...still on the fence..but just talked to surgeons nurse, and she explained that it does all need to be done at the same time and the why's she also answered as well, very nice lady....she also said he is legally bound to tell me of the things that can happen, but was encouraging and said a very large percent of his patients whom have had similar and more at one time have got 100% recovery, not in every case, but that he is very good at what he does and pray for the best outcome and that the surgeon himself is a very spiritual man, and that is why he takes the cases no one else will as he feels it is his duty to try to help whom he can, so that was good to hear if anything, but yes am still looking for answers will be researching all weekend, next week filling up fast with dr apts thank you for taking the time to help me,,you are so appreciated as being alone in this is horrific at best and the thoughts are overwhelming to say the least I am sure you can identify with. xxoo