ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on February 07, 2011, 06:03:42 pm
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Am just home from Georgetown Hospital where I had my second meeting with Dr. Maureen Moriarity. She is a nurse practitioner in the Neurology Dept. and my angel on my shoulder. Since she met me on Thursday she spoke with 3 neurologists about me and they decided not to give me a nerve block today and advised me to take out the mesh with Dr. Niparko and cancel my surgery for now with Dr. Ducic and reschedule it for a decompression after we take out the mesh. I was going to do that anyway and she said she spoke with Dr. Ducic this morning and he agrees. I am going to fly up to Boston tomorrow morning to babysit my granddaughter while my daughter presents a paper at the Radisson Hotel where there's a genetics meeting. I'll be back here Thursday afternoon and then go to see my two surgeons: Niparko and Tamargo on Friday noon and try to get this surgery scheduled as soon as possible. Dr. N. said it's an easy out patient surgery but Dr. Moriarity didn't think so because the nerves are entrapped (C2 and occipital) and he has to be careful getting the adhesions out. without damaging the nerves. It is very delicate and I'd rather stay one to two days inpatient and she agrees. Once Dr. N sees the MRI report, he might agree with her.
She gave me another new prescription today of EMLA cream to rub on my neck and in my hair. It's basically Lidocaine cream.
I can't tell you how nice Dr. Moriarity is. She said she really wants to help me and I do believe her. Just don't want two more surgeries on the list to clean this mess up. She said Asian people tend to have more adhesions and I'm half Asian. I also have Ehlers Danlos Syndrome and they tend to scar also.
Hugs to you all!
Mei Mei
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Mei Mei ~
Our thoughts and prayers are with with you as you approach what I hope will be the end of a long and arduous journey.
Jim
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Mei Mei, you have had such a hard time of it, I will say prayers for you this week that you find some relief. I have been SO blessed not to have this problem with my AN. I did have stubborn headaches in my younger years, so I do know how frustrating this can be.
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Thank you for your kind words and prayers. It is encouraging like the wind behind your back. Dr. Moriarity in the neurology dept. said that Asians tend to have adhesions and I am half Asian. I also have Ehlers Danlos Syndrome and googled that and they tend to have adhesions as well. I am seeing a geneticist on March 28 to find out more about Ehlers Danlos and how to manage it. It says the skin and veins are soft like velvet and tend to tear easilty so I don't want that to happen. You're usually not diagnosed till after you die. There was that man from the State Dept a month or so ago who died of a ruptured heart artery. I bet he had Ehlers Danlos. They did surgery at GW to repair it and they couldn't. They said you look youthful and don't look your age. I keep getting carded whenever I get wine or beer and I'm 62. It's nice but it can be a serious health problem. I'd rather have to use face cream than have this Syndrome.
Thank you for noticing.
Hugs to you all!
Mei Mei
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I posted this on Nerve entrapment thread also:
I went to see Drs. Tamargo and Niparko today.Dr. Tamargo said the radiologist was incorrect and there is no entrapment of any nerves. He does not think that removal of the mesh will help. He said very few patients report feeling better after removal of the mesh. He said he had no problem with cutting of the three nerves. He wants me to come back for my two year visit in Jan 2012. Dr. Niparko also said that the radiologist was wrong and that there is no entrapment. He said that radiologists are motivated by finances and they need to report more problems. He said it's complicated and didn't elaborate further.He used a technical term which I forget right now but means that I have pins and needles on my scalp and have tenderness on my head. He said the right side of my neck is bulging and he disagrees with Dr. Tamargo saying that removal of the mesh is known to be successful in relieving pain. He said he would consider it during the summer and wants me to practice yoga like a guru, which I am already doing. He said he would call me in Mid March and wants a copy of the report from Dr. Francomano on her assessment of my Ehlers Danlos Syndrome. Maureen Moriarity said she will talk with Dr. Ducic next week on choices I now have in keeping me comfortable (Blocks or Botox). I fear the end of my headaches is not near. I keep having them every night and every day. I am now using Indomethecin to stop them. In the middle of the night I take Tylenol PM with the Indomethecin.
I fear the end is not near for my headaches. The light at the end of the tunnel is dimming.
Mei Mei
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Wow, Mei Mei, I am so sorry to read this. There is so much disagreement amongst these doctors about how to care for you, it is just amazing. You have so much pain and they want you to keep waiting? I understand the principle of "First, do no harm," but this carrying things a bit far in my non-doctor's opinion.
-Tod
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YEs, Tod. I'm just coming off another brain wreck and it was scary. It started around 2 a.m. and I took Two Indomethecin and two Tylenol PM and after a while went downstairs and got out the icepack for my neck and firght side of my face. After that didn't work I popped two Alleve Gel caps and two more Tyleno PM even though I was warned about Serotonin Syndrome. Maybe it's time to pre pay my funeral home at Gawler's. It's scary and I don't know who will take care of my father if something happens to me. I was going to practice Yoga this Morning but don;t know how to start . Will give it my bestt rry. My stomache is hurting just under my ribcage now. Maybe it's from all the meds. I'm really worried.
Mei Mei
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Mei Mei,
Wow, what a confusing scary painful ride you are on. My heart & prayers go out to you this week as you fly to Boston. I'd be worried too :o
BUT you've come this far, the road is still sketchy, but continue to have faith that there WILL be relief.
I know you don't want to have more surgery, but if you feel good about the surgeon that finally may have a solution, then go for it.
You know the rule about no more than 4000mg of tylenol a day? That's the general rule of thumb anyway. And just keep your tummy protected! Tum...tum tum tum......TUMS!(remember the commercial?)
Maureen
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I didn't know the rule about the limits to Tylenol. I don't know much about that but need to find out. I just had a terrible time last night and the headache wouldn't go away. I'm getting another one now. Tonight is my first night with the CPAP so here goes. Am actually looking forward to it.
Hope I don't have to pop too many pills tonight. My doctor told me to get Prilosec.
Hugs to you all,
Mei Mei
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I forgot to mention that my doctor is in favor of taking out the mesh right away. There's no reason to wait exceptt to see how much the Yoga will help.
Mei Mei
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prilosec is good. Will help protect the tummy. Make sure to take the motrin/ibuprofen/naprosyn type pills with milk or food ;)
Hang in there....
Maureen
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Mei Mei
I'm so sorry to hear this turn of events, it was looking so positive.
The end may still be near, you have found a dr willing to collaborate with all the other drs and find relief for you and that is a encouraging step.
Hopefully this week will bring you better news
Jennifer
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I'm so frustrated for you. :(
I wish that Dr T would just be willing to try *something*. Can't he see you're already in pain now, that you can't wait until Jan 2012??
At least it seems you have a good 'case manager' in Dr Moriarty.
Since I'm local, let me know if there's anything I can do to help!
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Thanks, Nicole. I don't blame you for not going back. I went to a neurosurgeon's office in Bethesda and he said to go back to my Hopkins doctors. Only Dr. Ammerman would see me and I like him very much. I just wanted the opinion of my original surgeons. I like Dr. Niparko's conservative apporach but waiting till Summer was his suggestion and trying Yoga everyday like a "Guru" I think things are beyond Yoga at this point.
Will keep in touch. Got to get some of your soaps.
Mei Mei
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I just got a call from Dr. Niparko and he said he doesn't want me to do neck surgery or any more surgery, but to take a holistic approach and if I were his sister, this is what he would tell me to do.
He wants me to take a holistic approach, practice yoga, body strengthening and muscle releasing. He promises the headaches will be gone by the summer.
I'm frustrated because he didn't mention that the muscles were entrapped and I think it is a mechanical problem and all the strengthening is not going to make it better for me.
I'm not a doctor, but this is my gut belief.
The myofacial release PT is away for three weeks so I have to call to make an appt. He schedules his own appts.
Mei Mei :(
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Am in the ER NOW, Headaches were so bad yesterday until this morning. THE GAVE ME I V ddilaudid and a Valium and a CT S=CAN . discussing the possibility of staying and taking out the mesh tomorrow. WELL SEE.
mm
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Mei Mei: So sorry this is still happening to you. Will put out good thoughts the pain will soon be a thing of the past.
(I can't log onto fb so I don't know what's happening there - I somehow got myself locked out yesterday).
Always good thoughts, Nancy
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???
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I just got home a half an hour ago and saw so many typo's on my posting. That dilaudid with a Valium works wonders!
They said to contact the specialists tomorrow because it's not an emergency surgery but they handled things quite nicely in the ER. No one's given me a muscle relaxant in this entire year of recuperation. You can tell how much I needed it because it worked so fast and I'm feelin' sooooo good.
Hope I can get into surgery this week!
Mei Mei
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Mei Mei,
Yep, sometimes you just need those drugs. What a combo, but so glad you found some relief, if temporary. Hoping you can get your medical care this week and safely too ;)
Hang in there,
Maureen
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Thanks, everybody. The dilaudid in the pill form didn't work at all and I had a killer headache that lasted from 8 pm to 10 a.m. It was frustrating and I just can't go to the hospital to get an i.v. of dilaudid every time I get a headache. Something has to be done. One sugeron said to do both the cutting and the removal of the mesh at the same time. The other said to cut the nerves first because it is simpler and the removal of the mesh is a complicated surgery. Lots of decisions to make. ^-^
Mei Mei
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Mei Mei,
My prayers and thoughts are with you! I feel so bad for you that you are having to go through this and suffering so much. I wish you a pain free night.
Best wishes
Wendy
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Thank you, Wendy for your kind wishes. I went to a follow up appointment for my sleep study and the doctor was so concerned about the meds that I'm on that she called my nurse practitioner while I was in the office and called my primary care. She insisted I take a taxi home and get a neighbor to pick up my car. Will have to get an I.D. card for handicapped car service for my medical appointments which are many every week. Being loopy is a traffic hazard and I wouldn't want to be a cause of an accident. Will stop driving as of today until we get this figured out.
Mei Mei
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I saw three neurosurgeons and they all said that the Titanium Mesh has big holes in it and the brain and dura and scar tissue have grown together...that removing it is too precarious now. I don't want to end up with brain damage. The plastic surgeon also said this. The only one that doesn't agree is my ENT doctor.
Mei Mei
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MeiMeiits just so complicated when the Drs can not agree w/ eachother.Call me soon...HUGS
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I know ... that is why I cancelled the first date on Feb. 16.
I've done so much homework on this and am ready.
Mei Mei
PS I think I have your two numbers switched and keep calling your home # instead of your cell. It's good that we both have sprint.
;D