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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 30. This is the beginning of the thread.
Posted by kerria on October 12, 2005, at 17:23:25
Hi Everyone,
After almost two years (in December) of being in severe constant pain and going to so many drs i finally went to a dr who knows what's wrong with me! After all this time and all the trouble with drs, the surgery and all the tests that didn't show the reason for pain.
Yesterday i went to a pelvic pain specialist- he is known as one of the best in the world, he was able to give me a diagnosis- i have pudendal neuropathy. It happens when the pudendal nerve gets compressed from an injury.
The dr explained about it and the treatment options. i cried to think that i could get better. Finally i can know what's causing this terrible pain. Also it means so much to have a dx now, the pain management dr can't say i don't have a dx and no one can accuse me anymore of having somatic pain.i'm so glad that i went back to this dr. i first went to him a few months after the pain started and the gyn surgery didn't help. He asked the name of my psychiatrist and a part came and was totally out of control, became so angry we just left. It was so hard to hear that there was another dr that was saying the pain was psychological.
It was so ackward going back to him a year later and apologizing. i'm so glad that he saw us again.
He asked why i was so different than before- so much in control now and i gave the credit to my T because i just saw him before and he helped me get to the appt by asking a strong part to go(i have parts and most couldn't handle going to the dr).Anyways, it all worked out so well and i know why i have this pain and what i can try to get better. Such a relief to be able to tell the pain management dr what i have,...
The dr even had to send me back to the same pain management dr that i had before- because they do the nerve blocks.
Or i can have surgery- there are only a few drs that do it, there is physical therapy to treat it also and a special pillow to make that will help, it's so painful to sit.
i have a legit reason for taking pain meds now, i knew i had before but now the drs know.
i'm so so relieved.
Thank you Ed and everyone that helped me when i came in bad shape because of the pain.
love,
kerria
Posted by JenStar on October 13, 2005, at 0:23:54
In reply to FINALLY i have a diagnosis for my pain, posted by kerria on October 12, 2005, at 17:23:25
hi Kerria,
I'm SO glad that you got a dx! I ALWAYS believed that your pain was real, and I was angry on your behalf at the doctors who blew you off just b/c they didn't know what was going on. I HATE when people say stuff is "in your head" and you know it isn't!I'm so, so glad that you got this vindication and that you at last know what is going on. I hope that the treatment options will work for you and get rid of the pain forever. And I hope that awful pain doctor treats you better now, too.
I'm so glad you got this information! :)
JenStar
Posted by ClearSkies on October 13, 2005, at 6:10:35
In reply to FINALLY i have a diagnosis for my pain, posted by kerria on October 12, 2005, at 17:23:25
I'm glad you have a diagnosis and some choices for treatment, that is great news.
ClearSkies
Posted by kerria on October 13, 2005, at 7:17:52
In reply to yah! great news! :) » kerria, posted by JenStar on October 13, 2005, at 0:23:54
Thanks so much, JenStar, for being my friend in all of this.
i feel like sending a letter to all the drs that misdiagnosed me - especially those who accused me of drug seeking in my medical records and trying to have the medical records changed, their comments taken out.
It also feels so unfair that i have to pay so much money to them for all the abuse. i still owe the Mayo Clinic more than $1,500 just in copays and they damaged my reputation with their comments about me. Every dr now that i have has to read them when i need records. i was so desperate to find the reason for my pain that i searched everywhere for an answer. i went to drs at Hopkins, too. There were probably over 50-60 drs that i went and described the pain to.
i was sent to have many pelvic MRIs and had surgery and everything. i wish that i had been able to have myself together the first time i saw this pelvic pain dr. It would have saved a lot of money and time, pain and frustration.Thanks for being there.
Take care,
kerria
Posted by kerria on October 13, 2005, at 7:40:04
In reply to So good to have an explanation! » kerria, posted by ClearSkies on October 13, 2005, at 6:10:35
It's such a relief to be working on solutions now, understanding what's wrong. It was so hard to not know. i knew there was something physically, organically wrong and it was so weird that so many drs didn't find it. This was one of the most difficult struggles i ever had, just trying to keep it together with the stress of seeing so many drs who kept saying that there was nothing physically wrong that they could find.
Maybe i will try to write a letter and give copies to all the drs who insinuated that it was in my head. It was so hard for me, especially because of where the pain was and my p.a. and s.a. history.
what a relief!Should i send a letter to all the physicians i saw during the past year and a half?
kerria
Posted by kerria on October 13, 2005, at 7:44:03
In reply to So good to have an explanation! » kerria, posted by ClearSkies on October 13, 2005, at 6:10:35
> I'm glad you have a diagnosis and some choices for treatment, that is great news.
> ClearSkiesYes! it's so good to know that there are things that i can do to actually get better. Getting this dx helped my physical and mental health so much.
Thank you, ClearSkies, for being there.
Take care,
kerria
Posted by JenStar on October 13, 2005, at 12:27:20
In reply to Re: yah! great news! :) » JenStar, posted by kerria on October 13, 2005, at 7:17:52
hi Kerria,
I think writing letters to the doctors is a good idea, if you have the energy to do it! At least maybe to the most important ones, perhaps? That way, if they are able to be open-minded, they could at least ammend your file and show that you have a dx for the pain, and that they were wrong to call you a drug seeker or other unkind things.In any case, I'm so happy for you. It must feel GREAT to know that the doctors know that you're right, and that there IS a solution.
Take care, and I hope you're feeling better!
JenStar
Posted by gardenergirl on October 14, 2005, at 0:18:54
In reply to FINALLY i have a diagnosis for my pain, posted by kerria on October 12, 2005, at 17:23:25
Kerria,
You must be so relieved. I'm so glad you were persistent with this and that this doctor was able to find out what's wrong.Yeah!!!!
Here's hoping relief is on its way.
gg
Posted by kerria on October 14, 2005, at 12:15:23
In reply to Re: FINALLY i have a diagnosis for my pain » kerria, posted by gardenergirl on October 14, 2005, at 0:18:54
Thank you so much, Gardenergirl.
It's so good to know what's wrong.
Now i have another choice- to deal with going back to the pain medicine specialist that did the first nerve injection (i wrote about earlier here) and all the history that i have with him.
He was refusing to treat me and wouldn't wait for me to get a diagnosis- i was scrambling everywhere- even took a trip to another state to the Mayo Clinic and couldn't get a dignosis for my pain.:( the fact that this dr was so mean- he was making me withdraw from medicine when i couldn't withdraw because i was in too much pain- now the new dr sent me back to him to do the pudendal nerve block that i need. There are so many feelings against this dr and for this dr because he helped for a while- but things became ugly- he kept threatening me, saying that 'you don't have a diagnosis' and 'you'll never get a diagnosis' and things like that - that are really bothering me.. and he was so abrupt when he did surgery- he didn't let the nurses give the sedation that i really need to get through the injections- he's not very understanding of my psych condition. i don't know what to do.
i keep having fbs of me crying on the phone and him saying that i should 'Go to a rehab center' not believing the pain i was in that made withdrawing impossible. He made things so so impossibly difficult for me so many times. when another dr offered to treat me i took it and didn't even tell him that i was leaving. i didn't owe him anything i felt- he said he didn't want to treat me and was weaning me off pain medicine.
He acted so horribly towards me. i sort of understand- i had a psych dx that has somatic symptoms- but not all of me understands. Once he said 'i don't want to pay for botched therapy'. He was worried about losing his license because i didn't have a dx and he was treating me with pain meds. It was a bad situation for him also but especially for me.i don't know if i can have the nerve block by him now but the new dr sent me to his office. It will be ackward going back there. i explained to the new Dr about it and he said that he referred just to that group- didn't use any others.
there are parts inside that don't let me call.
Probably i should make an appt with someone else in his group?
Please write if you can, Gardenergirl.
Thank you so much,
kerria
Posted by gardenergirl on October 14, 2005, at 12:25:58
In reply to Gardenergirl, what should i do? » gardenergirl, posted by kerria on October 14, 2005, at 12:15:23
I can understand how your past experience with that doctor would make you not want to see him again.
I think making an appointment with someone else in the group is a very good idea. Hopefully you will get someone who is more sensitive, and things will go better.
And now that you have a diagnosis and a specific plan for treatment, perhaps the pain doc (if you went to the same one) might act differently?
Good luck and keep us posted on what you decide and how it goes.
Now, take a deep breath, and when you're ready, make that call.
((((kerria))))
gg
Posted by kerria on October 14, 2005, at 20:17:14
In reply to Re: Gardenergirl, what should i do? » kerria, posted by gardenergirl on October 14, 2005, at 12:25:58
Gardenergrl, thanks for writing. i'm having a nervous breakdown about everything. It's bothering me too much - all the things that i went through- surgery, all the tests all the drs , what they said about me and the pain- how i was threatened and then actually had that pain dr start to take me off medicine to make me live in terrible pain. It's so triggering. i'm losing it .
i'm still in so much pain and i need to get treatment but i'm too much a mess. It's so triggering what they did to me- i went through hell for the past two years with the way so many drs treated me. Even my own T and psych Dr were thinking it was somatic pain. i hate having a psych diagnosis. It makes me worthless before people. i can't ever find anyone who will respect me. i hate my life . It 's so horrible being me.
Posted by JenStar on October 14, 2005, at 22:53:48
In reply to Re: Gardenergirl, what should i do? » gardenergirl, posted by kerria on October 14, 2005, at 20:17:14
hi Kerria,
I think you're doing GREAT so far! I'm so happy for you that you have a dx, and that you stuck with it even though the doctors were rude and unkind, and although people did not often believe you. It takes a LOT of strength to do that, and I really admire that in you. You didn't give up DESPITE having a very difficult mental illness that only compounded the issues as far as doctors and diagnosis were concerned.I think you should be very proud of yourself for making it this far!
As for next steps, I don't know what advice to offer. I hope you have the courage and strength to work with that doctor -- even though it will be difficult -- to get the procedures you need.
Is there someone who could go with you, like an advocate, to help talk with the doctor and explain that you DO have a dx and real pain, and he needs to accept that and work with that? Maybe your hubby, or a friend or neighbor?
I hope things go well.
take care,
JenStar
Posted by kerria on October 15, 2005, at 11:09:32
In reply to Re: Gardenergirl, what should i do? » kerria, posted by JenStar on October 14, 2005, at 22:53:48
Thank you, JenStar.
Right now i'm struggling with feeling that it was not a mistake but intentional somehow- that the drs wanted me to be in pain. i know that it doesn't make sense but that's how i feel.
The pain is very bad and i can't stand it as well. i don't have a capacity anymore. Some of the things said i keep hearing- and i'm not even trying to think about it. i can't wait for the pain to be gone but this is just the beginning of treatment and i have to be in charge of getting it.
There is no capacity anymore.
Everyone around me is so negative against me, they can't understand- T hasn't called me back. i've been waiting three hours and i almost never call him.
To make things worse today is a very painful anniversary.
too much pain and no one here on my side helping .
i'm so tired of being alone in everything. i hate being my own advocate and having the criticism of everyone around me. i can't do it anymore.
Posted by ed_uk on October 15, 2005, at 16:31:00
In reply to Re: Gardenergirl, what should i do? » JenStar, posted by kerria on October 15, 2005, at 11:09:32
Hi K,
It's great that you've got a diagnosis, I can feel your relief :-)
I hope you can get a nerve block done by a different doctor to the one you saw before. Is there any surgery which could treat your condition?
Many medications have been used to treat neuropathic pain including.......
Amitriptyline
Gabapentin
Pregabalin
Nortriptyline
Desipramine
Duloxetine
Amantadine
Clonidine
Carbamazepine
Bupropion
Baclofen
Ketamine
Lidocaine
Levomepromazine
Tramadol
Methadone
Oxycodone
Divalproex
Oxcarbazepine
Topiramate
Phenytoin
Lamotrigine~ed x
Posted by kerria on October 15, 2005, at 20:48:06
In reply to Re: Gardenergirl, what should i do? » kerria, posted by ed_uk on October 15, 2005, at 16:31:00
Hi Ed,
Yes, the dr said that there is surgery but there aren't many drs around the world that do it. i'm going to find out about it because i think i have a severe case and it would be the best treatment. The dr seemed to advocate it also.
i'm having a special MRI done.It was so strange that he referred me to the same group of drs for the nerve block- the pain management dr i saw before- who gave me such a hard time about not having a dx. i thought i was hallucinating/ having a fb when he gave me the familiar form with the letterhead of that office- it was like a nightmare- especially because i was so upset with that dr after finding the correct diagnosis a few minutes before.
i told the new dr how strained relationship i have with the dr there. There are other drs in the pain management group. It feels so yuccy, i'm so angry and upset and thankful and relieved. Mostly it hurts though. Treatment is just beginning and it feels like it should be over.
Yes, in the beginning of the pain in Dec.2003- the family dr tried me on neurontin and elival and others. It just didn't work for the sharp pain and the elival gave me a migraine. i'm going to try Lyrica when the pharmacy gets it in. The oxycontin doesn't work totally either but works the best of anything i've taken. Maybe the combination or one of the other ones on your list. i have lidocaine but it doesn't make a big difference. the pain is deep also.
Mostly it will be the nerve block i think that will help. i wish i was more together or that i wouldn't have to be there when it happens.
or go to that God-forsaken office.. .anyways
Thank you,kerria x
Posted by ed_uk on October 16, 2005, at 15:41:44
In reply to Re: Gardenergirl, what should i do? » ed_uk, posted by kerria on October 15, 2005, at 20:48:06
Hi K,
>Yes, the dr said that there is surgery but there aren't many drs around the world that do it. i'm going to find out about it because i think i have a severe case and it would be the best treatment.
I think that's a good idea. Definitely something to look into.
~Ed x
Posted by kerria on October 17, 2005, at 16:31:09
In reply to Re: Gardenergirl, what should i do? » kerria, posted by ed_uk on October 16, 2005, at 15:41:44
Hi Ed,
i don't know what is the best thing to do. i wish the whole thing were over. i don't have a capacity, so many people that have had the surgery are still in pain afterwards, according to the people i talked with in support forums.
The dr wasn't able to directly refer me to a surgeon who does it. i need way more help to travel to another state again, now to have surgery.The pain is really bad, i wish i was doing better, i wish my T wasn't so busy- that he could help me deal with this more. He will be too busy for another month before he can see me twice a week. It's already been two months like this and i'm all apart with no capacity. i haven't even talked to T at all since i found the correct diagnosis last Tuesday. i told him in an email and he didn't even answer.
i'm having too many psych problems, too much is wrong inside. We can't think of the surgery or the pain in a rational way. It's so upsetting. It's also so upsetting because so many drs didn't believe me for so long, and i don't even know all why else.
Thanks for writing and helping,
kerria
Posted by ed_uk on October 19, 2005, at 14:22:38
In reply to Re: » ed_uk, posted by kerria on October 17, 2005, at 16:31:09
Hi K,
Before resorting to surgery, would you like to try combining some meds for neuropathic pain with your OxyContin?
~Ed
Posted by kerria on October 20, 2005, at 6:44:17
In reply to Neuropathic pain meds » kerria, posted by ed_uk on October 19, 2005, at 14:22:38
Hi Ed,
Yes-that would be good although i think i'll probably have bad side effects. i wasn't able to take so many already- that the dr tried me on before starting the oxycontin.
The high dose of oxycontin is making me sick also but takes pain away- the others made me sick but didn't take pain away-
The pharmacy is supposed to call me back when they get the Lyrica in. i think that's what it is, it's the new neurontin. Neurotin gave me a migraine. i hope they don't make me buy the entire 100 tabs.
According to most of the info on PNE it's important to get the nerve blocks first anyways. The pain management office didn't call me back- they might think that i'm too difficult a patient.
The dr that referred me back to get the nerve block is one of their most respected referring drs i think so that's good.i feel so abandoned by my T and everyone in this. Now that i have a dxx- the thing that everyone was complaining about- no one will help me.
T is too busy and psychDr hasn't called back since dx. i think he was dissappointed that it wasn't psychological pain- he probably was the #1 advocate of that.Which medicines works the best for nerve pain?
Thank you so much,
kerria
Posted by ed_uk on October 20, 2005, at 15:49:50
In reply to Re: Neuropathic pain meds » ed_uk, posted by kerria on October 20, 2005, at 6:44:17
Hi K,
>The high dose of oxycontin is making me sick
Sick as in nausea and vomiting? It is making you constipated?
~Ed x
Posted by kerria on October 22, 2005, at 0:24:42
In reply to Re: Neuropathic pain meds » kerria, posted by ed_uk on October 20, 2005, at 15:49:50
Help, Ed,
Please- i've been so sick with a migraine two days now - and the side effct of oxycontin that's so scary for me is uncontrollable movements - like swallowong really hard when i don't want to - it's like seizures. It never happened before last month and was more mild when the next dose was due but now, especially if i'm vomiting with a migraine it's like seizures.
No one in my family understands how scary it is.
i'm so afraid what's going to happen. No one will understand in er. What can i do? i have to take it because i'm in too much pain.
i'll talk to dr and will schedule the nerve blocks but i'm so afraid about uncontrolable movements won't stop.
It's worse when six or seven hours after i take it.
Could it be 'withdrawl syndrome?'
It's so scary. i wish i could talk to dr now that could help me. Still in so much pain so i can't stop taking it.Thanks so much for any advice, info on what to do,
kerria
Posted by lunesta on October 22, 2005, at 21:43:04
In reply to Re: Neuropathic pain meds » ed_uk, posted by kerria on October 20, 2005, at 6:44:17
the supplement, a thiamine deravative (vitamin b1) that is fat soluable works great for many neuropathies :
benfothiamine
this is real and works but not many people know.
Posted by lunesta on October 22, 2005, at 21:47:58
In reply to Re: Neuropathic pain meds, posted by lunesta on October 22, 2005, at 21:43:04
spelling is Benfotiamine
sorry bout that
Posted by ed_uk on October 24, 2005, at 15:21:52
In reply to Re: side effects » ed_uk, posted by kerria on October 22, 2005, at 0:24:42
Hi K,
How are you today?
>Could it be 'withdrawl syndrome?'
Perhaps. Do you take the OxyContin every 8 hours or every 12 hours?
~ed
Posted by kerria on October 25, 2005, at 1:57:30
In reply to Re: side effects, posted by ed_uk on October 24, 2005, at 15:21:52
Hi Ed,
i take it every seven hours and at night i try to go longer. It's better now- it gets that way when i'm sick with a migraine or upset. When i start crying it happens alot.
The drs office will be calling to schedule a bilateral nerve block tomorrow. i'm so afraid but hope that it works this time.
Do you think that it's the high doses and the time i've been taking it? It's been about a year on this dose, 60mg three times a day.
Thanks so much,
k. xo
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