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What to expect
I have NF, and am currently being investigated for a upper thoracic chest wall tumor of approx size of 6- 7cm.
I am scheduled for a US needle biopsy.
Most Drs. have limited knowledge fo NF and most don't understand the extent of pain involved.
They area being investigated has been resected 20 yrs ago and is most sensitive and prone to severe vice grip muscle spasms of the chest. The muscle squeezes so hard, my bld pressure increases and it feels like my head is going to explode and takes hours to subside, while I am unable to sit, lie down for hours.
I am very anxious regarding the needle biopsy in this same area and anticipating that it might aggrevate the intense symptoms, leaving me to fend for myself with the after effects. ( previous experiences, most drs' believe I am drug seeking, when all I night is a good one time shot of Diazepam to break the spasm and the remainder can be managed with Baclofen.
I am told that there is no sedation, and also that by the time they inject freezing, that the freezing is just as painful as the biopsy, so they may not use freezing at all.
I am required to be sitting for all of this.
I am so anxious of the unknown. The senior Resident who informed me of the biopsy told me to speak with the Radiologist. I assume I get to speak with this person 5 minutes before the procedure and no time for preparation.
I spoke with ultrasound biopsy nurse. She told me the above information and that I would be in the clinic for 4 - 6 hrs.
I am terribly axious, for fear of the pain associated not only with the biopsy going throught the muscle , but that they might excite peripheral nerve pain that might be associated with the tumor itself.
Any insight to what I might expect being that it might be a Pheriphal nerve tumor?
I am scheduled for a US needle biopsy.
Most Drs. have limited knowledge fo NF and most don't understand the extent of pain involved.
They area being investigated has been resected 20 yrs ago and is most sensitive and prone to severe vice grip muscle spasms of the chest. The muscle squeezes so hard, my bld pressure increases and it feels like my head is going to explode and takes hours to subside, while I am unable to sit, lie down for hours.
I am very anxious regarding the needle biopsy in this same area and anticipating that it might aggrevate the intense symptoms, leaving me to fend for myself with the after effects. ( previous experiences, most drs' believe I am drug seeking, when all I night is a good one time shot of Diazepam to break the spasm and the remainder can be managed with Baclofen.
I am told that there is no sedation, and also that by the time they inject freezing, that the freezing is just as painful as the biopsy, so they may not use freezing at all.
I am required to be sitting for all of this.
I am so anxious of the unknown. The senior Resident who informed me of the biopsy told me to speak with the Radiologist. I assume I get to speak with this person 5 minutes before the procedure and no time for preparation.
I spoke with ultrasound biopsy nurse. She told me the above information and that I would be in the clinic for 4 - 6 hrs.
I am terribly axious, for fear of the pain associated not only with the biopsy going throught the muscle , but that they might excite peripheral nerve pain that might be associated with the tumor itself.
Any insight to what I might expect being that it might be a Pheriphal nerve tumor?
Glad of you
and waiting - with you - for the best results
take care
and waiting - with you - for the best results
take care
Had Thoracic surgeon consult. The opinion was surgery would be massive and doubtful successful with life changing results. I am to consult with neurosurgeon, next week. I am no longer optimistic. The growth was left too long without intervention.
Just back from my appt. here are the pending results
"Tan sections show fragments of tissue composed of spindle cells admixed with skeletal muscle, adipose tissue and hemorrhage. The bland spindle cells have mildly wacy nuclei and lie in an eospinophilic fine fibrillary stroma. By immunohistochemistry, most spindle cells stain positive for S100. The overall findings are of a benign nerve sheath tumor, but the specimen is too small to differentiate between a neurfibroma and a schwannoma."
What are your feelings and experience with these results.?
I have pending appointments with a thoracic surgeon and a neurosurgeon.
Symptoms persist, and overall emotionally,.... tired and somewhat depressing that it continues.
Many thanks for you support, it is always appreciated. Your kind words are always uplifting.
"Tan sections show fragments of tissue composed of spindle cells admixed with skeletal muscle, adipose tissue and hemorrhage. The bland spindle cells have mildly wacy nuclei and lie in an eospinophilic fine fibrillary stroma. By immunohistochemistry, most spindle cells stain positive for S100. The overall findings are of a benign nerve sheath tumor, but the specimen is too small to differentiate between a neurfibroma and a schwannoma."
What are your feelings and experience with these results.?
I have pending appointments with a thoracic surgeon and a neurosurgeon.
Symptoms persist, and overall emotionally,.... tired and somewhat depressing that it continues.
Many thanks for you support, it is always appreciated. Your kind words are always uplifting.
Well's it over. I had the biopsy yesterday. I stressed for so many months off the information fed to me by someone ill informed. I had explained that I was very nervous and confused for all the fuss. The nurse then explained that they do give sedation and lots of the good stuff, and if one is in pain post procedure, that would be dealt with also.
She explain to me, "that's why we are here, for the patient"
The biopsy was both CT and Ultrasound. But not from the area I assumed. 3 core samples were taken just at the end tip of the shoulder blade, between the ribs.
After lots of freezing and a few doses of "heaven juice" I was most comfortable and thankfull, for the meds had relieved long standing pain as well. The radiologist did not give me a prediagnosis but will send it to my Dr. who I see in a couple of weeks.
The staff were most kind and gentle and it was very mind easing not to deal with more misinformation. Patient relations are hunting out the source person who gave me wrong information and cause me a lot of grief and stress.
As soon as I have a dianosis, I will be sure to let you know. I am fearful now since it wasn't the fine needle biopsy, but core.
Thanks ever so much for your assistance. I'll be in touch.
She explain to me, "that's why we are here, for the patient"
The biopsy was both CT and Ultrasound. But not from the area I assumed. 3 core samples were taken just at the end tip of the shoulder blade, between the ribs.
After lots of freezing and a few doses of "heaven juice" I was most comfortable and thankfull, for the meds had relieved long standing pain as well. The radiologist did not give me a prediagnosis but will send it to my Dr. who I see in a couple of weeks.
The staff were most kind and gentle and it was very mind easing not to deal with more misinformation. Patient relations are hunting out the source person who gave me wrong information and cause me a lot of grief and stress.
As soon as I have a dianosis, I will be sure to let you know. I am fearful now since it wasn't the fine needle biopsy, but core.
Thanks ever so much for your assistance. I'll be in touch.
all biopsies are identic: minimal sensation during and no pain after the procedure.
the real big surgery will be later if the biopsy decide that tumor should be removed.
now take a rest and stop thinking about this minimal but extremely important procedure.
tell me lateron about the result of the pathology, if it is for example Schwannoma (=neurinoma)
the real big surgery will be later if the biopsy decide that tumor should be removed.
now take a rest and stop thinking about this minimal but extremely important procedure.
tell me lateron about the result of the pathology, if it is for example Schwannoma (=neurinoma)
Perhaps I need to explain, the tumor shows on Chest x-ray as upper left lobe.
On MRI and CT it is paraspinal upper thoracic ( T-3 - T-4 ) posterior chest wall, not lung.
I have had it for years, but now it is growing and also some rib "necosis" which is where I think my pain is coming from.
Then of course the usual banquet of menegociles, foramen widening and firbromas scattered throughout, confusing a lot of people.
On MRI and CT it is paraspinal upper thoracic ( T-3 - T-4 ) posterior chest wall, not lung.
I have had it for years, but now it is growing and also some rib "necosis" which is where I think my pain is coming from.
Then of course the usual banquet of menegociles, foramen widening and firbromas scattered throughout, confusing a lot of people.
Thank-you for your time, I do appreciate it. All I need to be is comfortable( sitting is not, due to sciatic issues) and informed of what's going to happen.
The past few months have been nothing but confusion, processing errors etc. I recently was to have a consultation with the best spinal surgeon in this area. I was'nt even given the opportunity of an explanation, but was questioned as to why I was there. I was hurt confused and very disappointed.
I think the misunderstanding came the same way as the requistion for the biopsy. No explanation as to how it will be done or what I may experience.
I was told it was going to be done. So I still don't know how it will be done, or what I should experience during or after. Is it the same as a lung biopsy? in which case there is a lot of information on the internet and I can guide myself in that direction.
Many thanks.
The past few months have been nothing but confusion, processing errors etc. I recently was to have a consultation with the best spinal surgeon in this area. I was'nt even given the opportunity of an explanation, but was questioned as to why I was there. I was hurt confused and very disappointed.
I think the misunderstanding came the same way as the requistion for the biopsy. No explanation as to how it will be done or what I may experience.
I was told it was going to be done. So I still don't know how it will be done, or what I should experience during or after. Is it the same as a lung biopsy? in which case there is a lot of information on the internet and I can guide myself in that direction.
Many thanks.
too easy, smile and go for it as if you are going to a party.. smile again and believe me; what they told you is not true, not true at all (maybe only 10 % was true), and remenber dont think tooo much about technical issues, your are finally the patient NOT the doctor, we doctors have this ""priviledge"" to have this kind of worrying about the technique, and one more thing: it will be easy for me a neurosurgeon, and tooo easy for a radilogist
take care, best of luck
take care, best of luck
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