agonizing decsion.......
Posted: Sun Sep 14, 2003 7:20 am
Hi, I am the odd one here with the huge nerve cell tumor(schwannoma) compressing my brachial plexus under my right collarbone. Dr.Nath agreed to look at my case and now he says that he can remove the tumor.(they are trying to fit me in sept 19th or 23rd...eeek!!)
The prob is that I may end up worse after surg. with a permanent BP stretch. As of now, the tiny tissue sample from the tumor shows it to be a begnin schwannoma, and while it is VERY large, and I do have alot of pain, I do have fairly good function still of my shoulder, arm, and hand compared to most I see on here. I have about 50% of the shoulder muscle atrophying and that has caused my shoulderblade to sink inward, making sleeping difficult, can't be on my back or sides. However, I have not yet had any PT, so I don't know if that sit can get any better w/ time.
Part of me wonders if I should not risk being worse off, and possibly losing use of RT arm, hand or shoulder(am righthanded). The way Dr. Nath explained, after the tumor is removed, I will have relief from the compression, which will be good, but I am not sure how much of the pain and probs are due to that, or from the injury and trauma of the biopsy stupid other doc did 2 months ago.(that is when pain and probs increased 100%)
The problem he said, is that when he removes the huge tumor, the nerves(s) will be left loose, and very stretched, so I am assuming I will then have to deal with all the symptoms pain and probs of that type of injury and trauma to BP. Which I am NOT looking forward to.(plus then I will be not able to sleep on tummy for quite a while til healed, and I haven't figured how to sleep standing....how do you u all do it??? I am not able to have any even slight pressure on shoulderblade) He says he thinks there is 80-90% chance it will return to pretty normal and after 6 months we should know. If not, there is a 2nd surgery he would do, with maybe a 70% chance of sucess.
That seems very scary to me. I have already had my life alterd so drastically(not for the better) and been on this medical merry-go-round for almost 3 months now, and I feel like my life has already been put on hold for so long, and also those close who depend on me GREATLY(my kids(youngest 18), my 2yr old grandson that I babysit full time, my mother who has some health issues, husband with some health issues, plus I live on a horse farm run by my daughter).
I want, need, to be "me" again, or at least find out what the new "me" is going to be so I can get past this and deal with how I will live my new life. I HATE the thought of lots of surg and recovery periods...esp w/ the pain, sleep probs, drug issues and side effects, and fighting to be normal and stay upbeat.
However....Docs tell me that this tumor is quite rare and unusual and very suspecious b/c of it's huge size and location. They say that often these supposed schwannomas like mine turn out to be hodgkins after all(which is what they thought in the begining....or lymphoma), so they really really need to get the whole tumor out and section and biopsy it. Even worse is that even begnin schwannomas can on rare occassion turn malignant, and when they do, it is very poor prognosis...(hodgkins is at least mostly curable if found and treated) Usually the begnin ones grow very very slowly...and mine seems to be fast and agressive.
We also are not sure if it is growing bigger right now, as it seems to be, or if that is scar tissue etc. Radiation and chemo will does not help if it is just begnin schwannoma. And of course, the longer I wait, the more it MAY be damaging the BP and chance for recovery.
AUGH!!! Do I risk ending up worse, (he thinks if worse case happened, I would have some bicep etc, but no shoulder..but the shoulder is what bothers me the most now, hate for that to be worse!!!)...however the odds are high for good recovery and being better off than now, and finding out what tumor is?
Or do I leave alone, and have pretty high function level and fairly manageable pain and sleep, but risk cancer growing(altho at present it says begnin), and never getting any better, and possible being worse anyway if tumor grows bigger?
Help!!
The prob is that I may end up worse after surg. with a permanent BP stretch. As of now, the tiny tissue sample from the tumor shows it to be a begnin schwannoma, and while it is VERY large, and I do have alot of pain, I do have fairly good function still of my shoulder, arm, and hand compared to most I see on here. I have about 50% of the shoulder muscle atrophying and that has caused my shoulderblade to sink inward, making sleeping difficult, can't be on my back or sides. However, I have not yet had any PT, so I don't know if that sit can get any better w/ time.
Part of me wonders if I should not risk being worse off, and possibly losing use of RT arm, hand or shoulder(am righthanded). The way Dr. Nath explained, after the tumor is removed, I will have relief from the compression, which will be good, but I am not sure how much of the pain and probs are due to that, or from the injury and trauma of the biopsy stupid other doc did 2 months ago.(that is when pain and probs increased 100%)
The problem he said, is that when he removes the huge tumor, the nerves(s) will be left loose, and very stretched, so I am assuming I will then have to deal with all the symptoms pain and probs of that type of injury and trauma to BP. Which I am NOT looking forward to.(plus then I will be not able to sleep on tummy for quite a while til healed, and I haven't figured how to sleep standing....how do you u all do it??? I am not able to have any even slight pressure on shoulderblade) He says he thinks there is 80-90% chance it will return to pretty normal and after 6 months we should know. If not, there is a 2nd surgery he would do, with maybe a 70% chance of sucess.
That seems very scary to me. I have already had my life alterd so drastically(not for the better) and been on this medical merry-go-round for almost 3 months now, and I feel like my life has already been put on hold for so long, and also those close who depend on me GREATLY(my kids(youngest 18), my 2yr old grandson that I babysit full time, my mother who has some health issues, husband with some health issues, plus I live on a horse farm run by my daughter).
I want, need, to be "me" again, or at least find out what the new "me" is going to be so I can get past this and deal with how I will live my new life. I HATE the thought of lots of surg and recovery periods...esp w/ the pain, sleep probs, drug issues and side effects, and fighting to be normal and stay upbeat.
However....Docs tell me that this tumor is quite rare and unusual and very suspecious b/c of it's huge size and location. They say that often these supposed schwannomas like mine turn out to be hodgkins after all(which is what they thought in the begining....or lymphoma), so they really really need to get the whole tumor out and section and biopsy it. Even worse is that even begnin schwannomas can on rare occassion turn malignant, and when they do, it is very poor prognosis...(hodgkins is at least mostly curable if found and treated) Usually the begnin ones grow very very slowly...and mine seems to be fast and agressive.
We also are not sure if it is growing bigger right now, as it seems to be, or if that is scar tissue etc. Radiation and chemo will does not help if it is just begnin schwannoma. And of course, the longer I wait, the more it MAY be damaging the BP and chance for recovery.
AUGH!!! Do I risk ending up worse, (he thinks if worse case happened, I would have some bicep etc, but no shoulder..but the shoulder is what bothers me the most now, hate for that to be worse!!!)...however the odds are high for good recovery and being better off than now, and finding out what tumor is?
Or do I leave alone, and have pretty high function level and fairly manageable pain and sleep, but risk cancer growing(altho at present it says begnin), and never getting any better, and possible being worse anyway if tumor grows bigger?
Help!!