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navywife
01-19-2013, 02:27 PM
HI there my name is Teresa and I have had scoliosis all my life. I was first diagnosed at age 12 with a 30 degree upper curve. I was told then I needed surgery with Harrington rods and lead pins. My father did not allow. I was never braced but I did back exercises all my life up till a couple years ago. I am now 46 years old and 2 years ago was rear ended and then my curve took off to now being 53 top and 43 bottom with a neck curve as well. That mind you was then second car accident. The first one caused me to go into surgery and have an ACDF with my C5/6 disk. Forward to now, I find out from a scoliosis surgeon, who looked at my new MRI, that I have two spinal cords. They start as one but then divide. He said they are complicating everything but he has seen it before that is why he recognized it where as no one prior did. I am scheduled for surgery on February 15th and scared to death. I am having numbness and loss of strength in my right leg , hip and groin. I am told this is the beginning of is what to come if I don't take care of it now. Surgery being the only thing left. I have tried PT, chiro, dry needling and yoga. Nothing has worked nothing has helped with pain either. It is just getting worse. I am looking at your stories and trying to find someone who may have a double cord. Is there anyone who has double cords? Is there anyone who knows my doctor from CT/NY, Dr. Taddanio? My height, well it use to be 5'8 and now I am 5'6 1/4. I do not know if I will gain height or not. I am not sure that being on the table 8-10 is good either. I have to also have my neck operated on too I found out. I am petrified.

I am the wife of a Sailor who is currently over seas and as is my son who is a Marine. My daughter is in the Peace Corp and no one can get home it seems for the surgery. My husband is trying to leave early being he is suppose to stay till the end of Feb.

Thank you for reading and I hope I hear from anyone soon even if you don't have a double cord like me.

Thanks

kennedy
01-19-2013, 03:32 PM
I haven't heard of that before. Good luck with your surgery

rohrer01
01-19-2013, 03:39 PM
Hi, Teresa.

I don't have your same problems, but wanted to welcome you to the forum. I have an odd curve type, but no double cord. My primary curve goes into my cervical spine as well. My surgeon asked me how I hold my head up! Well, the actual curve is from T1 - T6 or so. I've developed another curve so I have a double major instead of a single major curve. My neck hurts all of the time, though. I get Botox to help with the muscle spasms and pain from my curvy neck and upper back.

Do you have any family or friends that can help you after surgery? I'm guessing there'e no way you can put it off until hubby comes home. Well, it was nice "meeting" you.

Take care.

Susie*Bee
01-19-2013, 04:04 PM
Teresa-- welcome from me also. There have been others who had to recover on their own with no one at all and you (or we can help you) can do a search for how they dealt with getting prepared. TXMarineMom is one of them. She had an extensive list and did quite well. Anyway, it is do-able if you plan ahead, but it would be easier if you have someone to help you. I can't be of help about the double spinal cord. You are an interesting case. We are glad you have you on board here and wish you all the best.

mabeckoff
01-19-2013, 04:46 PM
I would like to welcome you as well

jrnyc
01-19-2013, 05:10 PM
hi Teresa
i see Dr Taddiano is listed in White Plains on the SRS list on this
website...
i personally have never heard of him...
i am a native New Yorker who moved to northeastern CT almost
6 years ago when i got married...i also was in CT for undergraduate
work at Southern, but went back to Manhattan after that...
i only know of the NYC guys...Boachie, Lonner, Neuwirth, Errico,
and a few names newer to me...like Cunningham and others at HSS...

just wondering if you got second opinions from any of the top NYC
surgeons...??
and also, is there a reason you went to a White Plains doctor...?

best wishes...
jess..

navywife
01-19-2013, 05:14 PM
Thank you!

navywife
01-19-2013, 05:17 PM
I went to the doctor in NY because I could not find one here in CT. He does have an office in Stamford and operates out of Stamford Hospital as well. It is 2 hours out but worth it. My neurosurgeon is from central CT and said he wants to operate on my neck and lower spine. I just thought its best to have everything done by one doc. I have not gone to others and feel comfortable with this doctor. Having my family gone is difficult. My husband is trying to come home early for the surgery but may not be able to. He said it has to be life or death. Anyhow, thank you so much for the warm welcomes and wishes!!

jrnyc
01-19-2013, 05:38 PM
hi Teresa
when i looked up (on internet) what you describe with your spinal
cord, it states what a rare condition it is....so i am not sure what responses you will get in terms of others in your same condition...
i was mainly asking about getting another opinion just to see if
another surgeon agrees with what Dr Taddonio says is needed...
(not to knock him)...some patients feel better knowing surgeons
agree on where fusion is needed, etc...
you are comfortable with him, and that is a big part of what is important...
i really hope the powers that be can see fit to allow your husband to
come home to be with you thru the surgery...

i am wondering, only as a back up, if there are any church people
who can offer any support to you....
a hospital social worker also would be a good person to talk to
in terms of help for you after your surgeon allows you out of rehab...
i am assuming you would be sent to rehab, as that is usually done for
anyone living alone for any reason...
i am trying to think of worst case scenario back up support...
but i hope your husband can come home for a large portion of your
recovery...

best wishes...
jess

navywife
01-19-2013, 05:44 PM
Hi Jess and thank you for the advice. I do have a therapist I use for the deployment as it has been over a year now that my husband has been gone. My insurance is amazing and so I will see how long I can stay at least till my hubby gets home. I know the internet does not off much about the condition and yes it is rare. It was told that only a trained eye would see it and this MRI is being looked at by another radiologist to generate a new report. I will send this new report to the original radiologist so that maybe in the future they can be on the lookout for such unique individuals as myself. I know a positive attitude is best and been there before when I fought my thyroid cancer several years back prior to my car accidents. This though for some reason seems to scare me to death.

Teresa

jrnyc
01-19-2013, 05:53 PM
Teresa, when it comes to being terrified of the surgery,
you have a great deal of company with that!
i am one of the people who has put off the surgery...since
2007 at least...
there is much written here on forum about how hard the
decision to go ahead with surgery is....even with people in
bad pain, even those with threat from scoli to heart and lung function...
it is a tough decision to make!

jess

LindaRacine
01-19-2013, 06:33 PM
Hi...

I think it might be a good idea to put off the surgery until your husband is home. It's not that far away, and the surgery is not urgent.

--Linda

Confusedmom
01-19-2013, 11:58 PM
Welcome Teresa!

I agree with whoever suggested you should get a second opinion. It doesn't mean you have to go to that doctor for the surgery. It's such a huge, life-changing surgery that you want to be absolutely sure you are doing the right thing. Since you are nearby, I would think you'd want to go to Dr. Boachie at the Hospital for Special Surgeries in New York, or someone else comparable. Also, I agree with Linda, our moderator, that it probably would be best to wait until family is home to take care of you.

It is a difficult decision, and all of us are terrified before-hand. This forum helps a lot with information and helping you get prepared. If you haven't already, you might want to get the book: Scoliosis Surgery, The Definitive Patient Reference, by David Wolpert. It is extremely helpful for understanding the surgery and what you will need to prepare.

Best wishes,
Evelyn

golfnut
01-20-2013, 08:54 AM
Welcome to the forum. If at all possible, I would wait until your husband can be home. I know there are many who have recovered on their own, and outside help can be hired when necessary, however, the support of a close family member sure helps through the rough times. I know you trust your surgeon, but a seond opinion is sometimes a good idea. Best of luck and keep in touch with us on the forum. You'll find a lot of answers to questions and support from others in similar situations.

navywife
01-20-2013, 09:33 AM
I appreciate all your advise. As far as waiting well I wake up every day with more new symptoms and more numbness and weakness and as of yesterday it is now into my groin which is quite disturbing. The doc is not sure if the damage with the cords being involved in the curve is causing permanent damage and I wont know until after the surgery. The thing is I fell a couple weeks back and since then I have more new symptoms and am feeling worse day by day. The doctor had me scheduled asap as this is something I should not wait to do. I heard the urgency in his voice and that this is serious enough to do it right away.

My husband is doing his best to be home for the surgery. I will know this week sometime if he able to do so.

Thanks again everyone!

Teresa

leahdragonfly
01-20-2013, 10:42 AM
Hi Teresa,

My heart goes out to you. This is a huge surgery to face alone. I know nothing about the workings of the military, but wonder if your surgeon wrote a letter to your husband's commanding officer explaining that it is urgent, if your husband would be allowed home. It seems so cruel to deny that.

Let us know how you are doing,

titaniumed
01-20-2013, 01:27 PM
Hi Teresa

I feel the same way as the others, wait till your husband gets back. A letter would be a great idea....

Please keep in touch....

Ed

jackieg412
01-20-2013, 04:06 PM
I agree with everyone. You will need as much support as you can get.Having your family with you is very important and hopefully it will work out that way.

navywife
01-22-2013, 07:52 PM
My doctor did write a letter explaining that if these surgeries are not performed as soon as I am medically cleared that not only will I get worse but that the neurological deficits I have will get worse and also the high level of pain will increase. I struggle with pain meds cause they make me ill even with anti nausea pills so I avoid them. I am just able to walk and get myself out the door every day. I struggle with the legs trying not to drag my feet or fall over. I have lost a great deal of coordination in my fingers. It may not sound like much but I am having a hard time with just buttoning my blouse and tying my sneakers. It is scary that this is happening. I have numbness in certain places that I surely don't want it to stay and I am having a hard time controlling bladder and bowel. It is embarrassing but I hope they can fix me up so this is not permanent. SO I cannot wait any longer than the earliest day he can do surgery on me. Thanks for the advice but again It is what it is and he is trying so hard to be here for that day.

jrnyc
01-22-2013, 08:40 PM
dear Teresa
i think it wisest to trust the surgeon's recommendation....
just my opinion....
go ahead and make the plans, reach out to see if there is any
emergency type support people who might help until your husband
can make it home...
the neurological implications sound urgent...
so whatever the doctor says to do...i understand the need to go
with his advice...
i hope there are some people who can help out temporarily...
and as i mentioned, i think the hospital social worker might
be alerted as to your situation as quickly as possible...

just a thought....you sound quiet and shy....
BUT....sometimes congress people or senators can be appealed to
for help, as can a local newspaper...i would not be surprised if many local
people might be happy to help the wife/mother of a serviceman/men....
most people are only too glad to help out in all kinds of ways,
once they know of a need...

you will be in so many thoughts and prayers, i think...
certainly in mine...
jess...& Sparky

JenniferG
01-22-2013, 10:01 PM
One important thing I learned. People want to help. They don't want to interfere. All they are waiting for is to be asked. Please ask around and see if you can sort out help with food, laundry etc. If you're in a Church, a team, a group, a committee, have friends, neighbours, relatives. It's hard to ask for help, but when you see how willing people are, you'll know it's ok. You would do the same. It sounds to me, if your surgeon thinks you need this surgery now, and from what you say, I can understand that, then it's time to go for it. Wishing you the very best.