Need help--my NS is AWOL

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Need help--my NS is AWOL

Postby June » Fri Nov 04, 2011 10:46 pm

Four years ago I was told that I had only SM--no tethered cord. I have been seeing a pain management doc and taking loads of narcotics to keep going. Then last Spring, my NS said that tethered cord surgery might help me. With the passage of time, new things have been discovered, etc. etc., so in July I had the surgery. Before surgery my pain was horrible, even with all the narcotics. I had begun to have really bad leg pain and difficulty walking.

When I woke up from surgery, my legs did not hurt--I was so happy! And the back pain was reduced maybe 40% to 50%. Surgery definitely was worth the effort. I focused on recovery and then began some gentle exercise and pool therapy--on my own.

Early October the pain began to return, and to cut this story short, it is back with a vengeance, along with some new symptoms. Two weeks ago I saw my NS for the FIRST time since the surgery--three months. I tried to tell him about my new symptoms and how ill I am feeling, but he has developed a new interest in the Paleo diet--anyone heard of it?--and wanted to tell me all about it. Says he has lost 20 pounds and become a real believer in eating the way our ancestors ate. He is lecturing on it now. I never got a chance to finish telling him how I was feeling. At one point he got up to--he said--get me some printed info on the diet, and he never came back. An office assistant came and told me that he had run out of copies but that she would send me some. I was exhausted and just went home.

I am getting sicker every day. Besides pain, nausea is my main problem, along with a "whooshing" sound/feel in my head, like a waterfall--not constant. Sometimes I get a sound/feeling like I'm standing under big electric wires/transformers. I have extreme fatigue, shortness of breath, some dizziness, my neck clicks, and the pain in my left arm/neck/shoulder is sometimes really bad. I think I need to see a doctor, but who. Seems like mine has deserted me.

I've been thinking about the doctors at UCLA med center--I think some of you have had good results with people there. Anyone have an opinion about Dr. Batzdorf, etc? Also, if anyone can offer ideas about this list of symptoms and what they might mean, I would be grateful. I am heartsick about my NS. I've always liked him so much, but he seems to have dropped me now that the surgery is done.

I appreciate any help you can offer.

June
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Re: Need help--my NS is AWOL

Postby razzle » Sat Nov 05, 2011 4:05 am

I thought you were seeing Oro .

If you look at a post early Dr. Batzord is talked about . also put his name in the search box . r

viewtopic.php?f=3&t=13823
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Need help--my NS is AWOL

Postby syrinx48 » Sat Nov 05, 2011 1:50 pm

Hi June,

I am sorry to read about your problems. I also thought you were à patient of Dr Oro. You hear à lot of good things about Dr Batzdorf, but there are also negative ones. It is just à matter if you feel good about à doctor. Mind you, hè is old, but à authotity on CM/SM. Its up to you to decide. Read the experiences of others as Roz told you.
Btw, how is your husband doing, can you cope? Haven't you overdone it after the OP? Perhaps you should take some more rest, sometimes swimming isn't the right thing to do, unles you swim in warm water and on your back with the help of someone.

Thinking of you, gentle hugs,
Annemarie
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Re: Need help--my NS is AWOL

Postby June » Sat Nov 05, 2011 3:29 pm

Annemarie,

Thank you for your reply. Yes, Dr. Oro is my NS, and I really like him. Maybe we just did not connect that day in his office--I just don't know. I was really surprised by his behavior, but it certainly seemed like he was telling me that there is nothing more he can do for me. He did not even mention follow-up appointments. I am bewildered, and I confess that my pain and nausea aren't helping me to have a clear head to deal with this.

You are so sweet to remember about Alan. His deep brain stimulation surgery has helped a lot, but of course he still has Parkinson's and emphysema which must be dealt with every day. He is doing pretty well, considering, and we are actually hoping to take a vacation after Christmas--something we haven't been able to do for a long time. However, if I don't get to feeling better, I don't think I'll be able to make it.

Re: swimming, I don't. I go to a therapy pool near my home and do simple stretching and strengthening exercises in the warm water--feels soooooo good.


Roz--I PM'ed you.

Thanks again to both of you for responding.

June
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Re: Need help--my NS is AWOL

Postby reedy » Sun Nov 06, 2011 8:48 am

Hi June, so sorry that Dr Oro seems to have let you down. Did you have anyone with you for your appointment? I try never to see a doctor without my partner along, as it is very hard to pick up all the important things in the conversation. My partner takes notes and listens carefully, only pitching in if he thinks I haven't be quite accurate in how I answer or to get clarification from the doctor or to keep things on track. I went to see Dr Oro and found him very willing to discuss things from top to bottom. He also recognised limits and made no promises on what surgery might do for me. It sounds a bit odd that he'd go on about the Paleo diet, since he's a NS. I have heard people say that the Paleo diet helps with energy levels* etc, so perhaps he was just offering a kind of stop-gap, interim thing for you to try, if surgery hasn't done what you want it to. It sounds like your conversation got way off track and then he (and you) didn't bring it back to where it should have been. I can see why you'd be disappointed in him.

Try Batzdorf. He leans more towards surgical solutions but he is a well -respected recognised expert in the field. You might also want to consult Iskandar in Madison, or the person JSWack sees in Chicago.

*That said, I'm off to have a cup of coffee and some chocolate! I've become quite indulgent in the things I really like, since its looking like you need to enjoy what you can out of life...and for me, stimulants do work (at the moment).
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Re: Need help--my NS is AWOL

Postby June » Sun Nov 06, 2011 4:33 pm

Reedy - Thanks for your response. My husband was with me for the appointment; we have both become well-acquainted with Dr. Oro over the years, and he was as surprised as I was about the appointment. We both agreed that Dr. Oro heard me say that fatigue had become much more of a problem since the surgery, and apparently made the mental connection with this Paleo diet he's discovered, and just stopped listening to the rest of what I said. So I think you are right--he thought the diet might help with the fatigue---but what about everything else?

My experience with Dr. Oro has been the same as yours--he has always been willing to take the time to explain things carefully until I could understand, and I have appreciated that so much. He is a wonderful doctor, and he has helped me a lot. I guess that makes this experience all the more bewildering. I just don't know what to think--or do.

So I'm trying to decide if looking for a second opinion would be worthwhile. If Batzdorf is semi-retired, he may not be the right person. Do you know anything about the doctors who work with him? I'll check into Iskander and try to figure out the other one you mentioned.

Thanks again,
June
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Re: Need help--my NS is AWOL

Postby wendi » Tue Nov 08, 2011 3:05 pm

Hi There June. Long time no talkie. I hate what you are going thru and this is not the first time I am hearing not so nice things about our Dr Oro. He does not seem to be the cm/sm champion he once was. He seems fixated on curing us with diet. Oh if it was that easy, I believe many here would have rushed right out and filled our shopping carts with all the right stuff to eat. I am not saying that eating right is not important, it really is and probably especially for us. There are many foods that help pain and fatigue and joint pain etc and these things are good to know, but it seems to me, if you wanted to visit with a dietician, you would have went to one and not your NS! Crap on a cracker! I am p'o'd for you. I would maybe call his office back and see if you can come back in. I don't like the thought of you traveling all the way to CA to see another curmudegeon who may not help you.

Hang in there sweetie pie!

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Need help--my NS is AWOL

Postby reedy » Tue Nov 08, 2011 3:53 pm

Batzdorf might be able to look at your scans and give you an opinion remotely. He is no longer doing surgery but he is advising his top team. Give his office a call or an email and see if you can arrange that.
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Re: Need help--my NS is AWOL

Postby *Hope* » Wed Nov 09, 2011 6:23 pm

Yeah, things have changed a lot in the last few years. I'm sorry you're hurting again. =(


I sent you a PM.
CM1
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Re: Need help--my NS is AWOL

Postby passmass » Sat Nov 12, 2011 11:25 pm

I had Tethered Cord Surgery at TCI and I would recommend it to anyone. It took about a year for alot of my symptoms to go away, but when I looked back on my list I was amazed at the number of smptoms that had gone away. I had a fusion at C5-6 before that. Now after TCS in 07 and fusion in 04 now I need to have C4-5 and C6-7 fused. Was told this would be needed when C5-6 was fused.
I also have Thorasic disc moving and L disc on ciatic nerve root.
My NS has moved and I had to wait 2 1/2 months for appt with new NS. Nov 22nd
Can't wait Pain is constant and continous.

But If Tethered cord surgery is needed I highly recommend it. I had an excellent experience.
Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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Re: Need help--my NS is AWOL

Postby June » Sun Nov 13, 2011 12:37 am

Thanks for your response, Passmass. I had tethered cord surgery last July 13, and it did help. The pain in my legs is gone--well, most of the time--and back pain was reduced 40% to 50%, in the beginning. Lately, the pain has been getting worse again, but still not as bad as before. These new symptoms, such as nausea and "swooshing" in my head are disturbing, though.

I'm glad to see that you have an appointment with a new doctor and hope you can get some relief from your pain.

Good luck,
June
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Re: Need help--my NS is AWOL

Postby jswack » Sun Dec 18, 2011 1:51 pm

Hi,
Sorry, I just noticed this message and saw my name. The doctor I see in Chicago is Dr. Frim at the U. of Chicago. He is amazing. I've often seen Dr. Iskandar here in Madison as well (also an excellent doctor--some years I don't have insurance that covers Dr. Frim). Either would be a good choice. If you are interested in Madison let me know.
Jeanne in Madison, in the sad state of WI
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Re: Need help--my NS is AWOL

Postby pseudotumor » Mon Dec 19, 2011 10:03 pm

As soon as I read about a doc on here going on and on about the paleo diet I KNEW it was Oro! :roll: I tried it for a couple months and just ended up with GI problems in addition to everything since I get the majority of my fiber from grains. I wish I had something helpful to add, but good luck.
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