has anyone that had radiation had surgery later for regroth

[lmurray69]

I had radiation a year ago and have had other things happen that make me want to have surgery and i was wondering if anyone has had surgery after the radiation..my dr says that you only get one option and I had mine I am now looking for a surgeon to remove the tumor..once and for all..

[ppearl214]

Hey L,

I am curious as to why you would now decide micro-surgery when your radiation treatment was a year ago? As we know, it takes time for the little bugger to implode and maybe you just haven't given it enough time?  I have heard of surgery post radiation but it was in my readings. Will see if I can find a link for you.

I am learning one thing, fyi.  I know that the "waiting" post radio-treatment is the worst part. I know that having the mental strength to deal with the wait is of utmost concern for me.  Will I have the mental strength to not say "did it work?" "did they hit the stoopid thing?" "oh, gawd, is it still growing?"  For me, I know I am going to have to dig down deep to find that mental strength to hang in there. I know others that have had the radio-treatments that I can reach out to if I need an ear to say "where did you find the mental strength to not question the treatment?"  To me, it's not the treatment itself that concerns me. It's not the final decision that I have made. To me, the biggest question I have is... am I mentally strong enough to have faith in the docs that they hit the AN and not to question, down the road, if it is actually working.

Hang in there hun.  My inbox is open if you need it.... or even if you don't.  I'm always here for ya.... you know it!

Phyl

[russ]

Hi lmurray69
  It may look to be growing when it is actually swelling so soon, post Tx. Can you wait on that surg for another year?
  Russ

[minnkris]

lmurray69
I'm kind of agreeing with the others on waiting a while. I have to admit it is hard wondering if the radiation worked or not. But, I also wonder why your Dr. said you have only one option. I was told if I had GK, and it didn't work I could still have surgery later. Sometimes its hard to know what is really true or not.
Anyway, I'm hoping for the best for you.
Kris

[lmurray69]

I could waite but the neuroligest says that he thinks that the retention cyst is pushing on a nerve and causeing all the Tia's , It is really big takes up a lotof room .I think it is 1.5cm pushing on the brain stem . they can only speculate on what they think.. And all i do isworry. I am so sorry to that i dont have a clue. I asked them in the beging that i want surgery . but the neuro surgeon didnt show the day of surgery and the ent doctor went in and didnt remove the cyst. he covered a hole in the ear drum. sorry my spelling is terrible..The radiation left the inside looking like a hugh blurr.. the tumor is growing.. went from a 5mm to a 9mm in the year.. I still want a 2nd opion. that iis why i had radiation they couldnt find a doctor to remove the retention cyst..

[shoegirl]

LM69,

What kind of radiation did they do?  I am a little confused, did they start your surgery and then close up because the dr didn't show up?  Or did your ENT do a procedure to just cover a whole in your ear drum?  I don't know alot about how surgery is performed so this is why I am confused.  Then how did you end up having the radiation?

I agree with the others,  the radiation may be causing the tumor to swell.  Can you wait or perhaps have another opinion before scheduling surgery?

Keep us posted!

Best Wishes, Suzanne

[lmurray69]

[Keep us posted!

Best Wishes, Suzanne

Suzanne , Yes the neurosurgeon didnt show ,and the dr covered my ear drum he wouldnt go inside the skull so he says and now he has left the area andI have to find a new ent also.. They only have fellow drs here in columbia mo.  I have had lots of opions from all kinds of drs but if you ask a neuroligy dr he wil tell me to get  the thing out of my head .. I have been to 3 and they all say the same thing, But they are neurologest so they dont operate. that is why I am trying to get the thing out of my head...

[Battyp]

I think I'd be suing a neurologist for not showing up.  How rude! 

Have you talked with a neurosurgeon?  There is a difference between the two.  I know you can email my doctor at moffitt in tampa and ask questions, I'm sure house is the same way.  Have you checked with any teaching facilities? Duke? Boston? Clevland? 

[shoegirl]

LM,

How awful, I can't believe that the surgeon didn't show!  I am sure you must of been awfully upset when you woke up and discovered that things didn't go as planned.  I am with Batty - go see a Neurosurgeon and an a new Neuro-ENT.  What kind of radiation did you have?   Are you concerned at this point that the radiation didn't work? 

I am so sorry that you have to go through all of this - I wish things could be much simpler for you.

 

[Bob Partak]

Hi Imurray69,
I had Cyberknife rad. 18mo.s ago. When I started my tumor was 11.6mmX5.7mm. After 6mo.s it was at 15.7mmX8.8mm.(twice the size)  After12mo.'s it was 12.3mmX6.7mm.- still larger than when we started.  After 18mo.s it is 11.4mmX5.4mm - only slightly smaller than when we started. Your tumor may be reacting normaly after radiation.
Also, I consulted with the Neurology folks at Barnes-Jewish Hosp. in St.Louis, Mo. - only 125 miles from you. Although they were pro-surgery they understood and agreed with my decission to have radiation. They said " if the radiation doesn't work, come see us, we can always take it out latter. Sometimes the surgery is a little more difficult."  I had CK in Okl.City only 180 miles from my home. Barnes-Jewish hosp. is associated with Washington University School of Medicine. I saw Dr.Robert Grubb(Neurologist) & Dr.Gail Neely(ENT) - both are directors of research. Might be a good 2nd opinion.
By your past posts I can't tell if your tumor is 15mm or 9mm at this time, but after radiation that might not be so bad. They swell from irritation before they shrink and sometimes to only their original size.
All in all, you may not be worse off as you think, you just need someone in the know to monitor your progress.  I too was very anxious about all this and Dr.Neely made me feel at ease, also Dr.Medbery @ St.Anthony's Hosp. in Ok.City who does CK and is monitoring me now.  If I can help you any further, let me know. If I were you I would get my past MRI's and medical records and seek that 2nd opinion.  I wish you well, Bob